Well I'm back, the problem hasn't been with internet access as I thought it would but with the laptop charger dying. The best part was that it died quietly so I had no idea until the message flashed up that I had no battery power left. As the lappy had arrived via Emma's partner, I left it to him to get a replacement charger. As it turned out it had to come from Germany so took about 3 weeks.
That wasn't the only bad news that dogged us from Day One. My Debit Card details were cloned and the fraudsters had been using the card to buy a range of products all over Europe, and so I was unable to do anything, even obtain cash, as my card was stopped. So after a month I eventually was taken to the bank by wheelchair to prove that I am me, and without using a mirror! Having a driving licence, even though not being allowed to drive, does have its uses after all.
So, I had a month without being able to make online purchases [we desperately needed curtains etc.] and a further two weeks having no means to able to access anything online.
Right, so I will start at beginning and tell you a moving story of moving.
We were told by the woman who came to assess us for priority that we would only be offered a ground floor flat and that would take until December. So to be offered a property [which the occupational therapist had approved] at the beginning of October came as a bit of a shock. We arranged to do a viewing the next day, and did it rain! The officer who was to accompany us at the viewing was running late so we were left in the rain for 10 minutes. We liked the kitchen which was brand new [exactly the same fittings that I had chosen], the bathroom was a wet room, and the garden was the ideal size for the dog. We were asked to give our response by 10a.m on the following Tuesday, we spent all weekend wavering and decided to ring on the Monday and request a second viewing. This was done with the proviso that if the answer was affirmative they needed to know on the Tuesday so the upshot was that we made an appointment to sign and did the second viewing alone straight afterwards.
At the signing we had the bombshell of being told that we would only have one week in which to move before we lost housing benefit. We decided that paying for one week at the full rent to give us more time was worth it and so we did. We arranged for the move by hiring a van to be on Thursday the 14th October. Luckily my son was off work that week and so him and his step-children had to pack most of the stuff for us. [I wasn't capable and Alan was doing his headless chicken impersonation] Every evening we discussed how we wanted the interior to look, making plans for the furniture etc.
I wanted to have the same provider of television, phone and broadband in the new residence, so arranged to have this installed the day after the move. When the engineer arrived he informed me that he could not do the satellite installation because, being a bungalow on a hillside, the surrounding buildings were too high, as were the trees. So we were left with no alternative but to find a service that was not satellite based, and the only one we found was the main telecommunications provider in the country which provides all three through the telephone line, and we have subsequently found to be very expensive!
We moved in with Alan being here doing all the directing and me staying at the house with the dog to arrive later. As it turned out Alan was sat in the cold because we didn't know how to turn the heating on, although a plumber did come out immediately the next day. The heating and hot water is through the district heating system which, it transpired, needed to be turned on at the mains, and we have discovered is either on or off, which means we either melt or freeze. New thermostatic valves are to be fitted in about February [and they will be on the sides of the radiators not underneath as they are now!] but I have heard intentions regarding the council work before and know that a 3 month planned waiting time can be 7 or 8 months because their pace of work.
Then there is the bathroom; it has been blocked since day one. When I say all, first it was the toilet that would fill to the top when flushed and slowly go down in its own time. We have got a better fix today, two nights ago the washbasin would not drain and last week Alan had to clear out the shower drain to stop it smelling and the water spreading into the hall every time it was used. Today's plumber [the fifth in as many weeks!] has investigated further because of the total blockage and cleared the drain outside so all seems OK for now.
We were to have all the bungalow painted white [anything to cover up the artexed salmon pink walls] and Alan's cousin Ken was to do it. We've since discovered that Ken is a bit of an 'old woman' and can only work 1 day a week for various reasons so its a room or area a week apart from the hall that had 6 brown doors and so they have taken a few weeks. Now we are ready to have the laminate floor fitted and buy all the new furniture we want, but it seems that we are now too near Xmas.
The snow has arrived and so stopped all deliveries for the past few days and future undetermined days. It is only about 2 feet deep so I don't see what the problem is, and the dog disappears whenever she goes out!
Wednesday, 1 December 2010
Friday, 8 October 2010
ON THE MOVE!!!!!
YEEESSS!
We have been packing! Why? We have a bungalow! Probably moving on the 13th or 14th October, it is ideal apart from the broken fences and artexing everywhere, well the hall living room and bedroom. Which in reality only leaves the kitchen and bathroom which have both been renovated recently, and so are brand new. Also the bathroom is a wet room so no bath problems and more space
Fences are Alan's speciality and do need to be done first for the dog, the garden is accessed by a door [which we call the back door] in the living room and so we are putting a solid lockable gate in the back fence which will also be peep-proof both to stop the dog barking at anyone walking past and stop anyone peeping into the garden with a view to breaking in.
We have decided to just paint the artexing white, so we've no problems on that front [apart from getting Alan to ring his cousin], and to use the curtains that are already in place [not our taste but they will do for a few weeks].
The van is booked now for the 14th so a lot of work needs to be done this weekend. I have spoken to my broadband and tv supplier [Sky] and it seems I may be offline for between 2 and 4 weeks. I will post another update when I am back.
We have been packing! Why? We have a bungalow! Probably moving on the 13th or 14th October, it is ideal apart from the broken fences and artexing everywhere, well the hall living room and bedroom. Which in reality only leaves the kitchen and bathroom which have both been renovated recently, and so are brand new. Also the bathroom is a wet room so no bath problems and more space
Fences are Alan's speciality and do need to be done first for the dog, the garden is accessed by a door [which we call the back door] in the living room and so we are putting a solid lockable gate in the back fence which will also be peep-proof both to stop the dog barking at anyone walking past and stop anyone peeping into the garden with a view to breaking in.
We have decided to just paint the artexing white, so we've no problems on that front [apart from getting Alan to ring his cousin], and to use the curtains that are already in place [not our taste but they will do for a few weeks].
The van is booked now for the 14th so a lot of work needs to be done this weekend. I have spoken to my broadband and tv supplier [Sky] and it seems I may be offline for between 2 and 4 weeks. I will post another update when I am back.
Wednesday, 29 September 2010
DESPAIR AND HOPE - within a few days
It seems ages since I last updated this, in fact it has been ages. I apologise to everyone because I've not done any updates for a while, I just been obsessed with getting a bungalow. I can't really think of MS implications, I have just managed to build an intense dislike for this house, and my situation.
I feel totally abandoned by everyone who has any power over the situation. It seems to me that they have not taken into account the fact that I have not been able to even get into the garden area for over one year. How would they like being a prisoner for that length of time? They seem to think that I am applying to move because I feel like it not through necessity even though I have got medical priority. I am sure they think that if they leave me long enough I will be grateful for a flat.
It is not just the access to the house that causes problems, since the modernisation I am finding it increasingly difficult to have shower. The powers that be decided that I MUST have a bath fitted and the only one that would fit in the space was a lot shorter and deeper, I have tried a bath twice and the second time got well and truly stuck, my legs just aren't strong enough to push me up that distance and my non-functioning right arm doesn't help. The equipment people provided me with a board that fits across the bath to enable me to have a shower, but when I sit on the board my feet dangle, and as my right leg won't lift without manual help, and so lifting my legs into the bath is very difficult and, I feel, dangerous considering my lack of balance. So I am reduced to re-enacting the days when bathrooms were not the norm, using a face-cloth on the bod, but my hair is another problem, I have to brave the battle of the bath to do that. Considering the fact that I used to be able to rise and have a shower and be in the car within 30 mins when I was working and on the morning shift, which meant having to be at work 5.30 am. So you can imagine the hardship I feel with the present situation.
Well it is Wednesday again, and there is only one suitable bungalow on the list, albeit 12 miles from here. It is 7 miles out of the city which would mean my daughter will be about 14 miles away from me, which will be no problem. There is, however, a train station about 2 miles further out of the city, which only takes 12 mins to the city centre, and it has two bedrooms, a walk in shower [what we would call a wet room] and a decent sized garden [we think] even if the décor isn't up to much being the ever hopeful beings that we are, we will register an interest.
Reading about the process at their end yesterday I noticed that they say the process generally takes 1 week from the closing date. Working on that basis the only one we are likely to hear about this week is one that has only one bedroom and a very narrow garden for the dog but we still will have an option to turn it down.
I feel totally abandoned by everyone who has any power over the situation. It seems to me that they have not taken into account the fact that I have not been able to even get into the garden area for over one year. How would they like being a prisoner for that length of time? They seem to think that I am applying to move because I feel like it not through necessity even though I have got medical priority. I am sure they think that if they leave me long enough I will be grateful for a flat.
It is not just the access to the house that causes problems, since the modernisation I am finding it increasingly difficult to have shower. The powers that be decided that I MUST have a bath fitted and the only one that would fit in the space was a lot shorter and deeper, I have tried a bath twice and the second time got well and truly stuck, my legs just aren't strong enough to push me up that distance and my non-functioning right arm doesn't help. The equipment people provided me with a board that fits across the bath to enable me to have a shower, but when I sit on the board my feet dangle, and as my right leg won't lift without manual help, and so lifting my legs into the bath is very difficult and, I feel, dangerous considering my lack of balance. So I am reduced to re-enacting the days when bathrooms were not the norm, using a face-cloth on the bod, but my hair is another problem, I have to brave the battle of the bath to do that. Considering the fact that I used to be able to rise and have a shower and be in the car within 30 mins when I was working and on the morning shift, which meant having to be at work 5.30 am. So you can imagine the hardship I feel with the present situation.
Well it is Wednesday again, and there is only one suitable bungalow on the list, albeit 12 miles from here. It is 7 miles out of the city which would mean my daughter will be about 14 miles away from me, which will be no problem. There is, however, a train station about 2 miles further out of the city, which only takes 12 mins to the city centre, and it has two bedrooms, a walk in shower [what we would call a wet room] and a decent sized garden [we think] even if the décor isn't up to much being the ever hopeful beings that we are, we will register an interest.
Reading about the process at their end yesterday I noticed that they say the process generally takes 1 week from the closing date. Working on that basis the only one we are likely to hear about this week is one that has only one bedroom and a very narrow garden for the dog but we still will have an option to turn it down.
Monday, 6 September 2010
PATIENCE IS A VIRTUE - A LESSON I AM LEARNIING
Despite being told that we probably won't get a bungalow we have been bidding [registering an interest] for 1 a week on average, surprisingly non have been on the tram route but they have been 2 bedroomed. I have amended my details for the 3rd time, this time giving reasons why we need 2 bedrooms and a garden. OK, some were exaggerations [or lies others may say], but I'm determined not to have a flat and to move yesterday!
The physiotherapist has stopped coming now, she said that I know what exercises I need to do and why. [Shame, she seems quite intelligent, but she still thinks I know these things!]
I got a supa-dupa wheelchair, that was a pre-loved item and has just had new batteries. It turns a complete circle within its own width and length instead of having to do a 53 point blind turn as I have to do on the scooter and has a joystick that works for either hand, so I will have to move it to the left hand side. I would love to tell you more about but since Alan has fetched it, rain or showers have been non-stop especially in the mornings when I am at my best. Anyway getting a used item saved me over £1200!
All I want now is an accessible bungalow so I can use the wheelchair [even indoors] The good news I've noticed with regard to moving is that the people that have been given the property have only had mobility priority since the beginning of July. My award date of the beginning of August will be eligible sooner rather than later!
I have tried the new wheels, my daughter helped me down the steps and we headed for the tram, at least that was the idea. The combination of broken paving slabs and bad dropped kerbs put paid to that idea. Because this road is so narrow, the bin collection lorry has to mount the pavement and so the slabs are all broken and uneven, where repairs have been done it is worse! All the accessible dropped kerbs are in place for private drives and so rarely drop to road level, not only leaving a kerb that needs to be climbed but they are too steep for me to negotiate. Now I remember why I bought the large mobility scooter! Broken pavements and steep access were no problem for it. The new wheelchair however cannot cope, the main drive wheel is touching nothing on the broken slabs so not moving, and at the drop kerbs the incline is too steep and the wheelchair threatens to overturn and so I don't feel safe.
The outcome was that we turned back and went shopping using the ordinary basic wheelchair and a taxi. Bang goes my independence whilst ever I live in this house. I am despairing of moving now and that makes me depressed and so I am developing a deep dislike of this house and surrounding area because I feel trapped.
The shopping trip was a success apart from I wanted a pair of boots but couldn't find any I liked. [well not below £60] I did, however, get a long top for my new leggings and a skirt that can be worn as a strapless dress with a shrug or small cardigan, I also managed to get a nice pair of shoes. Don't you think they would have cheered me up? N0 I still resent this house and my lack of independence.
We realised we may have to be quick moving and therefore I think that we should be sorting what we want & don't want but the tomorrow man [his favourite answer is Yeah, Tomorrow] who will have to do most of it keeps finding other things to do [convenient that don't you think]
The physiotherapist has stopped coming now, she said that I know what exercises I need to do and why. [Shame, she seems quite intelligent, but she still thinks I know these things!]
I got a supa-dupa wheelchair, that was a pre-loved item and has just had new batteries. It turns a complete circle within its own width and length instead of having to do a 53 point blind turn as I have to do on the scooter and has a joystick that works for either hand, so I will have to move it to the left hand side. I would love to tell you more about but since Alan has fetched it, rain or showers have been non-stop especially in the mornings when I am at my best. Anyway getting a used item saved me over £1200!
All I want now is an accessible bungalow so I can use the wheelchair [even indoors] The good news I've noticed with regard to moving is that the people that have been given the property have only had mobility priority since the beginning of July. My award date of the beginning of August will be eligible sooner rather than later!
I have tried the new wheels, my daughter helped me down the steps and we headed for the tram, at least that was the idea. The combination of broken paving slabs and bad dropped kerbs put paid to that idea. Because this road is so narrow, the bin collection lorry has to mount the pavement and so the slabs are all broken and uneven, where repairs have been done it is worse! All the accessible dropped kerbs are in place for private drives and so rarely drop to road level, not only leaving a kerb that needs to be climbed but they are too steep for me to negotiate. Now I remember why I bought the large mobility scooter! Broken pavements and steep access were no problem for it. The new wheelchair however cannot cope, the main drive wheel is touching nothing on the broken slabs so not moving, and at the drop kerbs the incline is too steep and the wheelchair threatens to overturn and so I don't feel safe.
The outcome was that we turned back and went shopping using the ordinary basic wheelchair and a taxi. Bang goes my independence whilst ever I live in this house. I am despairing of moving now and that makes me depressed and so I am developing a deep dislike of this house and surrounding area because I feel trapped.
The shopping trip was a success apart from I wanted a pair of boots but couldn't find any I liked. [well not below £60] I did, however, get a long top for my new leggings and a skirt that can be worn as a strapless dress with a shrug or small cardigan, I also managed to get a nice pair of shoes. Don't you think they would have cheered me up? N0 I still resent this house and my lack of independence.
We realised we may have to be quick moving and therefore I think that we should be sorting what we want & don't want but the tomorrow man [his favourite answer is Yeah, Tomorrow] who will have to do most of it keeps finding other things to do [convenient that don't you think]
Sunday, 22 August 2010
WHEELY, WHEELY FUN
This sorry saga just keeps on getting better. The woman came yesterday to do the assessment for having mobility priority which she awarded but not without imparting the information that we are not likely to be given a bungalow, but would stand more chance of a flat. The reason for no bungalow? I'm too young!
You can stop laughing now, Alan may be able to qualify us as he is 60 in November, also yesterday I was told that the wheelchair would be November/December. That is a long time to wait, it will be nearly two years then since I have been able to leave the house without a patient ambulance and attendants.
So, to sum up, I have got medical priority which is not worth the paper it is printed on because under 60 is too young and the letter states I must also consider flats [which would mean no dog [not an option]], the only option in this situation is mutual exchange but you have to register separately for that, a form is allegedly on the way that will need filling in and returning.
The form arrived and is not helpful, it states that an adapted house [which this is classed as because of a few handrails] cannot be exchanged and if it could, it takes 6-8 weeks to be listed!
You know, despite being told by all the MS professionals that I will not be short of helpers both physically and whatever I need, it would seem that any way they try to help the associated departments don't want to know, never mind make a special effort. I feel surrounded by brick walls that no-one, it seems, can be bothered to help me take down. Maybe it is my fault because I don't complain enough but that is the way I am, the glass is always half full.
I phoned the physiotherapist to tell her about the wheelchair and she rang me back to say they have agreed to loan me one until mine is ready. That was very nice of them but it is an only transit chair that needs someone to push it all the time, and so being non-electric Alan can't take me anywhere. I went out last Friday night using an adapted for wheelchair taxi there and back, with my friend meeting me at the restaurant to take the pushing over when I arrived and Alan meeting the taxi when I got home. All went well apart from my heel kept getting stuck behind the footplate, and the journey to the meal was all down hill, the driver had positioned me facing backwards instead of sideways, every time he braked the chair tipped backwards. So by the time we got to the town centre I was doing a good a brilliant wheelie movement and my right shoe was on the floor. Coming home the driver was obviously more experienced and placed the wheelchair with its back to the door, so no wheelies on the way home, but I still managed to lose my right shoe! [Fun & Games, Fun & Games]
The meal itself was wonderful as usual, although the waiter was rather taken aback when I ordered the fish without any pasta. I still could only eat two-thirds of it, after all I needed to have some room for the chocolate cheesecake!
Back in the real world, we have put bids in for three bungalows but I have noticed that the details on website do now state that preference will be given to people with mobility priority, which was not on any previous properties. The only problem with that is they are in areas we don't want to live in, but they do have an age restriction of 40+. So hope springs eternal.
You can stop laughing now, Alan may be able to qualify us as he is 60 in November, also yesterday I was told that the wheelchair would be November/December. That is a long time to wait, it will be nearly two years then since I have been able to leave the house without a patient ambulance and attendants.
So, to sum up, I have got medical priority which is not worth the paper it is printed on because under 60 is too young and the letter states I must also consider flats [which would mean no dog [not an option]], the only option in this situation is mutual exchange but you have to register separately for that, a form is allegedly on the way that will need filling in and returning.
The form arrived and is not helpful, it states that an adapted house [which this is classed as because of a few handrails] cannot be exchanged and if it could, it takes 6-8 weeks to be listed!
You know, despite being told by all the MS professionals that I will not be short of helpers both physically and whatever I need, it would seem that any way they try to help the associated departments don't want to know, never mind make a special effort. I feel surrounded by brick walls that no-one, it seems, can be bothered to help me take down. Maybe it is my fault because I don't complain enough but that is the way I am, the glass is always half full.
I phoned the physiotherapist to tell her about the wheelchair and she rang me back to say they have agreed to loan me one until mine is ready. That was very nice of them but it is an only transit chair that needs someone to push it all the time, and so being non-electric Alan can't take me anywhere. I went out last Friday night using an adapted for wheelchair taxi there and back, with my friend meeting me at the restaurant to take the pushing over when I arrived and Alan meeting the taxi when I got home. All went well apart from my heel kept getting stuck behind the footplate, and the journey to the meal was all down hill, the driver had positioned me facing backwards instead of sideways, every time he braked the chair tipped backwards. So by the time we got to the town centre I was doing a good a brilliant wheelie movement and my right shoe was on the floor. Coming home the driver was obviously more experienced and placed the wheelchair with its back to the door, so no wheelies on the way home, but I still managed to lose my right shoe! [Fun & Games, Fun & Games]
The meal itself was wonderful as usual, although the waiter was rather taken aback when I ordered the fish without any pasta. I still could only eat two-thirds of it, after all I needed to have some room for the chocolate cheesecake!
Back in the real world, we have put bids in for three bungalows but I have noticed that the details on website do now state that preference will be given to people with mobility priority, which was not on any previous properties. The only problem with that is they are in areas we don't want to live in, but they do have an age restriction of 40+. So hope springs eternal.
Tuesday, 10 August 2010
WHERE AM I?
Today I feel really fed up and neglected, neglected regarding both moving and about my wheelchair. Do I not complain enough? Or am I truly powerless?
Tomorrow I will probably be ringing the GP surgery to see if I can hurry things along.
All that was few days ago, I never did ring the surgery to see about the wheelchair, so I suppose I'll not be going out next week. The arrangement was that my daughter would take me on my twice yearly social outing with her godmother, if my wheelchair had not arrived Emma would borrow my mother's but she has lost it! Don't ask how someone can lose a wheelchair unless you can provide the answer. Everyday at least once she rings the social worker and asks if she can find it for her but she doesn't even know the last time she used it! Every time we ask we get a different answer which is ideal for someone who has been told by the hospital to use the wheelchair whenever she leaves the flat! At least she goes out, to two luncheon clubs a week at the moment.
I went to my last monthly chemo last week. It all went well and this tme I am left with only one bruise. Not bad for someone whose veins like to hide. I started having side effects last time which obviously didn't go away this tme. My hair has gone really fne and is falling out to an extent, the bath is just full of hair from both the shower and what is already loose.
It's been physio day today and, as is natural, I couldn't stop giggling when the right leg went on strike as usual, it looks as if I am not trying to lift it when it only manages less than one inch off the floor whereas the left leg lifts as if it is doing a try out for a can-can line up. Now doesn't a one legged can-can dancing sound good. The physio says it is all my right side muscles that are wasting away, or have wasted.
Regarding the bungalow, the woman is coming tomorrow to do the assessment, even though all the health workers I have seen believe an assessment to be totally unnecessary. At least I should get my mobility priority but if there are different levels of mobility we don't know as yet. We shall no doubt find out tomorrow.
Also today I have received a letter summoning me to a 'Back to Work' interview. I rang them to explain that I can't leave the house and so they will contact me in about six weeks time. Why? Because the Government wants to get as many people off benefit as possible. I agree with them, I know, and know of, too many scroungers, and I would love to work, but with only one hand working and being in a wheelchair even a checkout job in a supermarket would be too much of a challenge. Alan & I were discussing it this afternoon and concluded that I an just too clumsy and would end up owing whichever company more money for breakages than I could earn.
Even better is the fact that I have received both a letter and a telephone call from the same department telling me that I am entitled to more disability money because of the severity of my MS! So basically they are giving me more money because I can't work but want me to work so I don't claim benefits. Confused? I am!
So wish me luck for tomorrow and I'll let you all know what happens.
Tomorrow I will probably be ringing the GP surgery to see if I can hurry things along.
All that was few days ago, I never did ring the surgery to see about the wheelchair, so I suppose I'll not be going out next week. The arrangement was that my daughter would take me on my twice yearly social outing with her godmother, if my wheelchair had not arrived Emma would borrow my mother's but she has lost it! Don't ask how someone can lose a wheelchair unless you can provide the answer. Everyday at least once she rings the social worker and asks if she can find it for her but she doesn't even know the last time she used it! Every time we ask we get a different answer which is ideal for someone who has been told by the hospital to use the wheelchair whenever she leaves the flat! At least she goes out, to two luncheon clubs a week at the moment.
I went to my last monthly chemo last week. It all went well and this tme I am left with only one bruise. Not bad for someone whose veins like to hide. I started having side effects last time which obviously didn't go away this tme. My hair has gone really fne and is falling out to an extent, the bath is just full of hair from both the shower and what is already loose.
It's been physio day today and, as is natural, I couldn't stop giggling when the right leg went on strike as usual, it looks as if I am not trying to lift it when it only manages less than one inch off the floor whereas the left leg lifts as if it is doing a try out for a can-can line up. Now doesn't a one legged can-can dancing sound good. The physio says it is all my right side muscles that are wasting away, or have wasted.
Regarding the bungalow, the woman is coming tomorrow to do the assessment, even though all the health workers I have seen believe an assessment to be totally unnecessary. At least I should get my mobility priority but if there are different levels of mobility we don't know as yet. We shall no doubt find out tomorrow.
Also today I have received a letter summoning me to a 'Back to Work' interview. I rang them to explain that I can't leave the house and so they will contact me in about six weeks time. Why? Because the Government wants to get as many people off benefit as possible. I agree with them, I know, and know of, too many scroungers, and I would love to work, but with only one hand working and being in a wheelchair even a checkout job in a supermarket would be too much of a challenge. Alan & I were discussing it this afternoon and concluded that I an just too clumsy and would end up owing whichever company more money for breakages than I could earn.
Even better is the fact that I have received both a letter and a telephone call from the same department telling me that I am entitled to more disability money because of the severity of my MS! So basically they are giving me more money because I can't work but want me to work so I don't claim benefits. Confused? I am!
So wish me luck for tomorrow and I'll let you all know what happens.
Friday, 30 July 2010
ME AND MY STAIRS - AN ENDLESS SAGA
I am having my last monthly dose of chemotherapy next week (if it happens) after that one, the third, it goes to 3 monthly until March 2011.
My GP has prescribed Gabapentin for the leg pains which seem to be working [well, up to now]. That makes a total of up to 18 tablets a day To be honest the leg bag causes more problems than the MS. Mind you the MS destroying the pelvic muscles doesn't help with the bladder spasms.
The Physiotherapist came at the beginning of this week and showed me some balance exercises, the Assistant Physiotherapist is coming next week to help me. Exercises are a good idea and badly needed but having the energy to do them is another matter. Maybe I'll have more energy when I don't have stairs to worry [well not stairs, more the gong up and coming down].
On that note things are progressing but not at the speed I need or would like, the woman who is doing the assessment wanted to come initially next week but it was the day of hospital and I think the treatment is more important. I rang to say I wouldn't be in that day so could they re-arrange the appointment, apparently they only due this area on Wednesdays so the appointment has been put back a week and re-arranged for Wednesday the week after next. It's all well and good for someone who can get out, but not for me [the attendant controlled electric wheelchair hasn't arrived yet] so Alan will have to go on his own if we are asked to view as I still can't go and look at any bungalows we bid for. There has been a vacant bungalow this week which would be ideal, it is near a shopping mall and my daughter, has 2 bedrooms, and has been adapted internally for a wheelchair, so we put a bid in for it, even though we know we won't be even considered without the assessment.
We keep consoling ourselves saying that there probably wouldn't be anywhere for the dog because most bungalows seem to have been built with a communal garden area with maybe a bench. Why do the able-bodied people who design these bungalows seem to presume that the disabled and/or elderly do not need or want a garden or any private area? My problem, as with most disabled people, is stairs and steps, not the garden or paved area.
I am now at the stage where whenever I go upstairs, apart from to bed, knowing I have to go down again terrifies me. In the past few weeks I have been glad of the two handrails to stop me falling b0th when going upstairs and especially coming back down. I will be so glad when I don't have stairs any-more.
So the state of play now is that next week I begin my exercises and go to see the vampire darts team and the week after I have my assessment done.
We will see if any of this happens when I expect it to.
Watch this space! That's all I can say!
My GP has prescribed Gabapentin for the leg pains which seem to be working [well, up to now]. That makes a total of up to 18 tablets a day To be honest the leg bag causes more problems than the MS. Mind you the MS destroying the pelvic muscles doesn't help with the bladder spasms.
The Physiotherapist came at the beginning of this week and showed me some balance exercises, the Assistant Physiotherapist is coming next week to help me. Exercises are a good idea and badly needed but having the energy to do them is another matter. Maybe I'll have more energy when I don't have stairs to worry [well not stairs, more the gong up and coming down].
On that note things are progressing but not at the speed I need or would like, the woman who is doing the assessment wanted to come initially next week but it was the day of hospital and I think the treatment is more important. I rang to say I wouldn't be in that day so could they re-arrange the appointment, apparently they only due this area on Wednesdays so the appointment has been put back a week and re-arranged for Wednesday the week after next. It's all well and good for someone who can get out, but not for me [the attendant controlled electric wheelchair hasn't arrived yet] so Alan will have to go on his own if we are asked to view as I still can't go and look at any bungalows we bid for. There has been a vacant bungalow this week which would be ideal, it is near a shopping mall and my daughter, has 2 bedrooms, and has been adapted internally for a wheelchair, so we put a bid in for it, even though we know we won't be even considered without the assessment.
We keep consoling ourselves saying that there probably wouldn't be anywhere for the dog because most bungalows seem to have been built with a communal garden area with maybe a bench. Why do the able-bodied people who design these bungalows seem to presume that the disabled and/or elderly do not need or want a garden or any private area? My problem, as with most disabled people, is stairs and steps, not the garden or paved area.
I am now at the stage where whenever I go upstairs, apart from to bed, knowing I have to go down again terrifies me. In the past few weeks I have been glad of the two handrails to stop me falling b0th when going upstairs and especially coming back down. I will be so glad when I don't have stairs any-more.
So the state of play now is that next week I begin my exercises and go to see the vampire darts team and the week after I have my assessment done.
We will see if any of this happens when I expect it to.
Watch this space! That's all I can say!
Friday, 16 July 2010
THE VAMPIRE DARTS TEAM DIDN'T WANT ME!!
Well it is a month since my last visit to the hospital to see the vampire darts team and therefore my last monthly dosage of the blue stuff is due. On Monday, the day before my appointment, the ward at the Royal Hallamshire hospital rang me to tell me that they were trying to book the ambulance but were told by them that one was booked already to take me to the Northern General hospital! Needless to say, I knew nothing of this appointment. The next thing was a call from the Northern General asking me if I was keeping the next day's appointment to which I said that no letter had been received and the Hallamshire appointment was more essential. The young lady said she would investigate and call me back which she did and apologised profusely because it was a mix up on their part.
All was well [so I thought] and so the next morning the alarm was set for 5 a.m., so I would be ready for 8 a.m., at 10.30 I was still here and I am supposed to be on the ward before that time so I rang the ward who rang the patient transport department, the ward rang me back 10 minutes later and confirmed my suspicions, the fiasco the day before had resulted in all transport being cancelled. The ward staff were not pleased but there again they didn't know the level of chaos that occurs whenever I try to do anything!
So another appointment was made for me on the Thursday [tomorrow] meaning another early morning start. So we will see what amount of chaos will reign tomorrow!
Regarding my housing situation, everything is a 'wait and see'. The department that awards 'mobility priority' have told me that I am on the system and the assessment will be done when it comes to my turn with no indication as to how long it will be.
The bidding system seems a shambles, we have to bid for properties after only seeing a photograph on the website, then we are allowed to view the properties. Someone has told me that often they have a 'viewing day' when all the interested parties view together, but the housing department know who they are going to offer it to. So why let others view?
I wonder how many people cheat like I do? Using google earth and google maps to look around? I may not know the exact address but a postcode puts me on the correct street and then I can look at the garden size and distance to the bus stops etc. but all this gets me any further towards moving
Well I'm home from the hospital and guess what? They've not done anything apart from make holes in my arms – 2 at each inner elbow with matching purple bruises. Apparently I have got another urine infection AGAIN – The Staff Nurse is going to ring on Monday to tell me if I can take these antibiotics the GP has left for me, or whether I need different ones, in which case she will ring my GP. Another appointment will be made for me in about 2 weeks, it seems as though because of the infections causing delays the original 12 month treatment is more likely to be 18 months. [why did I think it could be possible for me to keep to the schedule]
All was well [so I thought] and so the next morning the alarm was set for 5 a.m., so I would be ready for 8 a.m., at 10.30 I was still here and I am supposed to be on the ward before that time so I rang the ward who rang the patient transport department, the ward rang me back 10 minutes later and confirmed my suspicions, the fiasco the day before had resulted in all transport being cancelled. The ward staff were not pleased but there again they didn't know the level of chaos that occurs whenever I try to do anything!
So another appointment was made for me on the Thursday [tomorrow] meaning another early morning start. So we will see what amount of chaos will reign tomorrow!
Regarding my housing situation, everything is a 'wait and see'. The department that awards 'mobility priority' have told me that I am on the system and the assessment will be done when it comes to my turn with no indication as to how long it will be.
The bidding system seems a shambles, we have to bid for properties after only seeing a photograph on the website, then we are allowed to view the properties. Someone has told me that often they have a 'viewing day' when all the interested parties view together, but the housing department know who they are going to offer it to. So why let others view?
I wonder how many people cheat like I do? Using google earth and google maps to look around? I may not know the exact address but a postcode puts me on the correct street and then I can look at the garden size and distance to the bus stops etc. but all this gets me any further towards moving
Well I'm home from the hospital and guess what? They've not done anything apart from make holes in my arms – 2 at each inner elbow with matching purple bruises. Apparently I have got another urine infection AGAIN – The Staff Nurse is going to ring on Monday to tell me if I can take these antibiotics the GP has left for me, or whether I need different ones, in which case she will ring my GP. Another appointment will be made for me in about 2 weeks, it seems as though because of the infections causing delays the original 12 month treatment is more likely to be 18 months. [why did I think it could be possible for me to keep to the schedule]
Friday, 25 June 2010
THE RAMIFICATIONS OF BEING STUCK!
Hello everybody, I'm still here even though it has been a while. I've had the second low dosage chemotherapy treatment but little progress on the housing situation.
Let me tell you about the treatment day. The good points of the day were that I wasn't as bruised as before, they had no trouble finding a vein that would play and so inserted the cannula and took the blood test sample from that; they had football on the television instead of the usual 'magazine' programme, which is usually about Celebrity and fashion, even the recipes, and as I am not interested in either, I find those programmes boring, also a friend who lives near the hospital came to keep me company, and we can and do keep talking for hours! My urine was olive green time not the bright green of last time. Probably because more is staying in my system, it is a cumulative treatment after all.
That evening I let my leg bag fill too much and had what I thought was strong bladder spasms, by the time I realised that it wasn't a spasm it was too late to get to the toilet and so I made a puddle on the floor. [That'll teach me to make sure the bag is emptied regular]
My blood test results are gradually improving so something positive is happening. Maybe next time the effects will last longer. Another indication of my body retaining more of the treatment is the steroid high I have been on for about a week. The feeling of being able to handle anything life throws at me and the overwhelming tiredness afterwards. Plus the steroid flush that I have been warned about but has never happened to me before, and, of course the insomnia, but I've attributed that to my mind overworking due to the imminent move.
The news that I will have to move has counteracted any positive effects of the treatment. I now drag my right foot continually even scraping it on the riser part of the stairs which is not safe. It takes me so much effort to climb the stairs I have no energy to do anything apart from sit on my dressing chair, and the thought that I have to descend the stairs doesn't help either. I have to cling to both handrails so cannot bring even the dirty washing downstairs. Oh the joy of having a bungalow.
My GP has referred me for a wheelchair and, after a discussion she is ordering an electric helper chair. I can't have a self-propelled model unless I want to spend my days travelling in circles and a power-chair would only be provided if I had either a ramped or level access. As Alan has been told by the cardiologist that he cannot push a wheelchair the electric version that is easier for him is the only solution
So I have no independence until I move and that is making me impatient, I have spoken to the Occupational Therapist since and from what she said I am working on an October moving date. Not ideal but I am left with no option really, the workings of Local Government departments are powered by pedals it seems. My MS physiotherapist is prodding them to move quicker if that helps. I bet it doesn't!
I haven't told my mother yet about having to move, some days she just isn't on this planet. Her planet must be light years away from mine because I never see her in transit. She is trying the care home again next week, which will give all the family a break from her ringing each of us for nothing.
Let me tell you about the treatment day. The good points of the day were that I wasn't as bruised as before, they had no trouble finding a vein that would play and so inserted the cannula and took the blood test sample from that; they had football on the television instead of the usual 'magazine' programme, which is usually about Celebrity and fashion, even the recipes, and as I am not interested in either, I find those programmes boring, also a friend who lives near the hospital came to keep me company, and we can and do keep talking for hours! My urine was olive green time not the bright green of last time. Probably because more is staying in my system, it is a cumulative treatment after all.
That evening I let my leg bag fill too much and had what I thought was strong bladder spasms, by the time I realised that it wasn't a spasm it was too late to get to the toilet and so I made a puddle on the floor. [That'll teach me to make sure the bag is emptied regular]
My blood test results are gradually improving so something positive is happening. Maybe next time the effects will last longer. Another indication of my body retaining more of the treatment is the steroid high I have been on for about a week. The feeling of being able to handle anything life throws at me and the overwhelming tiredness afterwards. Plus the steroid flush that I have been warned about but has never happened to me before, and, of course the insomnia, but I've attributed that to my mind overworking due to the imminent move.
The news that I will have to move has counteracted any positive effects of the treatment. I now drag my right foot continually even scraping it on the riser part of the stairs which is not safe. It takes me so much effort to climb the stairs I have no energy to do anything apart from sit on my dressing chair, and the thought that I have to descend the stairs doesn't help either. I have to cling to both handrails so cannot bring even the dirty washing downstairs. Oh the joy of having a bungalow.
My GP has referred me for a wheelchair and, after a discussion she is ordering an electric helper chair. I can't have a self-propelled model unless I want to spend my days travelling in circles and a power-chair would only be provided if I had either a ramped or level access. As Alan has been told by the cardiologist that he cannot push a wheelchair the electric version that is easier for him is the only solution
So I have no independence until I move and that is making me impatient, I have spoken to the Occupational Therapist since and from what she said I am working on an October moving date. Not ideal but I am left with no option really, the workings of Local Government departments are powered by pedals it seems. My MS physiotherapist is prodding them to move quicker if that helps. I bet it doesn't!
I haven't told my mother yet about having to move, some days she just isn't on this planet. Her planet must be light years away from mine because I never see her in transit. She is trying the care home again next week, which will give all the family a break from her ringing each of us for nothing.
Sunday, 13 June 2010
BLOOD TESTS AND ASSESSMENT
Well the woman from the Council is coming this Tuesday to see if access can be done for me or whether I will have move. I do need however to see the doctor, I feel as if I am imposing on the telephone.
Now it is Thursday and the woman came and went [useless] and her recommendation to her Manager is going to be that adaptations could not be done to this house and therefore the only option is to move to either a ground floor flat or a bungalow. Of course big mouth here mentioned Alan's ground floor flat, but we can't go there because of the dog, [bless her] that being one reason among many, so we have only one option, that is a bungalow.
This brings along two more problems - there are very few empty ones and those that are empty are in areas we don't want to live in and become members of the ethnic minority. Also when I asked her if there was any help with moving she said no, the thought of the logistics of moving has brought on another relapse, I am now finding stairs a 90% challenge whereas before they had rated a 50% challenge. So unless someone in the MS department knows of help I can apply for we are left facing a large bill for the packing and moving, when we get somewhere that is, we could be waiting about two years!
Don't you agree with me that the local authority are saving thousands by not doing any work and so giving me a moving grant to cover my costs is not too much to ask?
So now we are waiting for the outcome in writing. Once we get that we can say we want a bungalow and start the search hopefully with Medical Priority
My GP told me aswell, after consulting with her colleagues and MS specialists, that the bladder spasms are part of MS and can't be controlled with medication [thanks I really wanted to know that it would be with me for life]
The next treatment is on Tuesday when I see the vampire darts team again.
Now it is Thursday and the woman came and went [useless] and her recommendation to her Manager is going to be that adaptations could not be done to this house and therefore the only option is to move to either a ground floor flat or a bungalow. Of course big mouth here mentioned Alan's ground floor flat, but we can't go there because of the dog, [bless her] that being one reason among many, so we have only one option, that is a bungalow.
This brings along two more problems - there are very few empty ones and those that are empty are in areas we don't want to live in and become members of the ethnic minority. Also when I asked her if there was any help with moving she said no, the thought of the logistics of moving has brought on another relapse, I am now finding stairs a 90% challenge whereas before they had rated a 50% challenge. So unless someone in the MS department knows of help I can apply for we are left facing a large bill for the packing and moving, when we get somewhere that is, we could be waiting about two years!
Don't you agree with me that the local authority are saving thousands by not doing any work and so giving me a moving grant to cover my costs is not too much to ask?
So now we are waiting for the outcome in writing. Once we get that we can say we want a bungalow and start the search hopefully with Medical Priority
My GP told me aswell, after consulting with her colleagues and MS specialists, that the bladder spasms are part of MS and can't be controlled with medication [thanks I really wanted to know that it would be with me for life]
The next treatment is on Tuesday when I see the vampire darts team again.
Friday, 28 May 2010
MY EXPERIENCE OF THE VAMPIRE DARTS TEAM
Well what a week! I had the chemotherapy at the second attempt but it was still fun! Of course my veins don't ever want to co-operate. 4 attempts later and they did get some blood to test and I was left with 4 bruises on my left arm, one of which appears to travel down a vein leaving a nice elongated mark. Of course there was the essential urine test. The first being from the bag was too contaminated so this had to be taken from before the bag, as directly from the catheter as possible. A nurse was told to use a syringe on the valve, but I didn't realise it would leave a small hole in the valve. It wasn't until I stood up later that I noticed the damp patch [damp? It was more wet!], and, as is my want, I changed into my baggy, thin cotton trousers as soon as I returned home and so ended the day very soggily as well as bruised.
Fitting the cannula was awkward, and these were nurses who only did that all day, all week. A very tall surgical registrar wandered into the ward at that point and was instantly persuaded by the nursing staff to do the job, much blood everywhere later the cannula was fitted and taped into place.
The royal blue coloured infusion began. It probably took about two hours to drip into my vein [my watch needs a battery] then it was replaced by a bag of steroid solution so about 5 hours after I had first set out I was home and very tired. There were some people who had brought their partners but the said partners just sat patiently and read their newspaper. I couldn't help wondering just why they were there.
When I was finished infusing an appointment was made for 1 month later. Apparently the course consists of once a month for three months and then every three months until next April.
Luckily because the chemotherapy is only a weak solution the only side-effect, apart from the bruises, is bright green urine that fascinated me! I don't think people who haven't got a collection bag get the full effect of this colour change. They don't know what they are missing!
Unfortunately, my bladder spasm medication stopped working at the same time, I thought it just needed time to settle down but no, it got worse. The doctor has changed my medication and I hope it works because the local pharmacy that I use has changed their policy so do not deliver prescriptions unless requested by the doctor, [which it was] yet it still took 2 days to reach me!
So it is all quiet on the medical front at the moment until I go to see the vampire darts team in mid June. I am still falling to my right and waiting for the equipment and adaptations team to do the assessment with regard to the wheelchair etc, They gave me a date of July so I will have to see and miss all the decent weather,
Fitting the cannula was awkward, and these were nurses who only did that all day, all week. A very tall surgical registrar wandered into the ward at that point and was instantly persuaded by the nursing staff to do the job, much blood everywhere later the cannula was fitted and taped into place.
The royal blue coloured infusion began. It probably took about two hours to drip into my vein [my watch needs a battery] then it was replaced by a bag of steroid solution so about 5 hours after I had first set out I was home and very tired. There were some people who had brought their partners but the said partners just sat patiently and read their newspaper. I couldn't help wondering just why they were there.
When I was finished infusing an appointment was made for 1 month later. Apparently the course consists of once a month for three months and then every three months until next April.
Luckily because the chemotherapy is only a weak solution the only side-effect, apart from the bruises, is bright green urine that fascinated me! I don't think people who haven't got a collection bag get the full effect of this colour change. They don't know what they are missing!
Unfortunately, my bladder spasm medication stopped working at the same time, I thought it just needed time to settle down but no, it got worse. The doctor has changed my medication and I hope it works because the local pharmacy that I use has changed their policy so do not deliver prescriptions unless requested by the doctor, [which it was] yet it still took 2 days to reach me!
So it is all quiet on the medical front at the moment until I go to see the vampire darts team in mid June. I am still falling to my right and waiting for the equipment and adaptations team to do the assessment with regard to the wheelchair etc, They gave me a date of July so I will have to see and miss all the decent weather,
Sunday, 16 May 2010
BITS OF ME LOST IN TRANSIT
So I was having my low-dose chemotherapy this week was I? Anyone want to take bets on that happening? Of course I didn't! You all know by now that nothing in my life runs smoothly.
I set the alarm for 5 a.m to give myself plenty of time to get ready for the medicar/ambulance at 8 a.m. I even managed to put some make-up on even though I did make a few mistakes with the eye-liner but that has taught me to try applying the eye make-up first not last, doing it that way will make it easier to mop up my errors. I wasn't waiting too long for the medicar/ambulance either. 9 a.m saw me on the way with fully charged IPod and Nintendo, oh, and of course, the ever present family history magazine.
The ward I was taken to was a bay that had no beds but was full of armchairs with a nurses desk, there were three recliners that had already been taken and two 'old women' type in other words upright with wings. I was the only newbie so was placed in the seat nearest the desk and subsequently discovered that the upright chair did not stop me falling to the side.
Then began the pincushion time, I was asked which arm I wanted the blood taken from and after a discussion it was decided to use the left arm for the extraction of blood and the useless right one for the chemical infusion, plus the easy one, a urine test. The blood was sent to the lab, but nothing could be done until the results were returned. A while later, after two free coffees I learnt the infusion had to begin before noon and the lab had lost my blood plus results, a quite common occurrence apparently, so it was decided to take some more blood, this time from the back of my left hand and label this as urgent.
A doctor then appeared, asked me how I felt and did a check up, I told him that I had felt dizzy all weekend etc. and had dry cough, on this basis he decided that I most probably had an infection and so put the treatment back a week. I was told to come back next week and drink plenty of fluids between time. I knew the cough was because of de-hydration but he was the doc, well he had a security tag that said so.
This means two appointments at two hospitals in two days next week, although I haven't yet received a letter with the revised attendance date so I do hope transport has been arranged, I will ring them on the Monday if still no letter arrives.
The Wednesday appointment, at the other local hospital is for the bone density scan which probably will be affected by the chemotherapy especially being the following day, yet more problems and delays.
Why am I fretting about the whole situation when I know that all the chemotherapy can do is stop me getting worse? Even at this level of disability I know that I need a wheelchair and stair lift etc., and all I can do is to wait.
And there, friends, I will leave you. Join me again after the second attempt.
I set the alarm for 5 a.m to give myself plenty of time to get ready for the medicar/ambulance at 8 a.m. I even managed to put some make-up on even though I did make a few mistakes with the eye-liner but that has taught me to try applying the eye make-up first not last, doing it that way will make it easier to mop up my errors. I wasn't waiting too long for the medicar/ambulance either. 9 a.m saw me on the way with fully charged IPod and Nintendo, oh, and of course, the ever present family history magazine.
The ward I was taken to was a bay that had no beds but was full of armchairs with a nurses desk, there were three recliners that had already been taken and two 'old women' type in other words upright with wings. I was the only newbie so was placed in the seat nearest the desk and subsequently discovered that the upright chair did not stop me falling to the side.
Then began the pincushion time, I was asked which arm I wanted the blood taken from and after a discussion it was decided to use the left arm for the extraction of blood and the useless right one for the chemical infusion, plus the easy one, a urine test. The blood was sent to the lab, but nothing could be done until the results were returned. A while later, after two free coffees I learnt the infusion had to begin before noon and the lab had lost my blood plus results, a quite common occurrence apparently, so it was decided to take some more blood, this time from the back of my left hand and label this as urgent.
A doctor then appeared, asked me how I felt and did a check up, I told him that I had felt dizzy all weekend etc. and had dry cough, on this basis he decided that I most probably had an infection and so put the treatment back a week. I was told to come back next week and drink plenty of fluids between time. I knew the cough was because of de-hydration but he was the doc, well he had a security tag that said so.
This means two appointments at two hospitals in two days next week, although I haven't yet received a letter with the revised attendance date so I do hope transport has been arranged, I will ring them on the Monday if still no letter arrives.
The Wednesday appointment, at the other local hospital is for the bone density scan which probably will be affected by the chemotherapy especially being the following day, yet more problems and delays.
Why am I fretting about the whole situation when I know that all the chemotherapy can do is stop me getting worse? Even at this level of disability I know that I need a wheelchair and stair lift etc., and all I can do is to wait.
And there, friends, I will leave you. Join me again after the second attempt.
Monday, 10 May 2010
FLOPPY ISNT ALWAYS A RABBIT
The Occupational Therapist came again. I can't remember if I mentioned last time, but I don't like her. She has no empathy and therefore thinks everyone has her beliefs and her finances. Maybe I didn't make myself clear enough last time but she brought me different sized handles to try for using cutlery, it isn't everyday cutlery that is a problem, the problem is turning my right wrist towards my mouth. She also told me about 6 times if I buy the size of handle she thought most appropriate not to put them in the dishwasher! If I could afford 1 where would I put it? The OT presumed I had got a dishwasher and when I said I hadn't got one, she just said a deflated oh. Another case of non-empathy I thought to myself, but she has arranged for a physio to see me so they can sort out the wheelchair, let's hope the physio listens more to me and what I am saying, not how what I am saying relates to their circumstances
Even though there were personal differences, the OT did focus my mind, the last visit made me realise that the present level of disability was permanent and this visit made me look at what I need. So a fold down table for me to eat my meals from instead of a tray on my knee and use the lap top on has been ordered and should be here this week, also we have bought a tumble drier [thank you Irish Lottery] because I can't get outside, the only problem being space so we have had to put it in the porch.
Even though there were personal differences, the OT did focus my mind, the last visit made me realise that the present level of disability was permanent and this visit made me look at what I need. So a fold down table for me to eat my meals from instead of a tray on my knee and use the lap top on has been ordered and should be here this week, also we have bought a tumble drier [thank you Irish Lottery] because I can't get outside, the only problem being space so we have had to put it in the porch.
I have received a date at the beginning of next week to have the low dosage chemotherapy. The only downside is that I now realise it will not not make me feel better just hopefully prevent me getting worse. I then have to have a bone density scan in a few weeks but hopefully that doesn't involve needles of any sort.
The district nurse has been twice this week to change my catheter but the chemist has not sent the new catheter and associated items. That is not surprising since the local pharmacy has changed hands from a small private concern to a large chain. The chain has supermarkets which seem to only sell brand names and if you mention an item or special offer that has been advertised the answer is always 'this branch doesn't stock that item'.
So getting a prescription delivered is a pipe dream. I complained last week about non-delivery of medication and the necessity of certain medicines when I was told I should order the repeat prescription by phone, not online. Why have an online service? I have sent an email to the people who maintain the site, so I will see what their response is. There is the choice of GP surgery or chemist so all the site needs is another choice of delivery putting on the site. We shall see!
Anyway back to the nurse, she may come again today with all the bits and pieces, if the chemist still won't play she will try again tomorrow.
As to the future, when my mother does go into the care home, we will have all her furniture to dispose of. One item of which is an electric rise and recline chair, and, as I have difficulty sitting upright, it might be useful to have it re-covered in a different colour so it matches my living room, which is NOT BROWN. We have had no indication of when the move might be.
The nurse eventually was able to collect the things she needed a week later then she originally intended and so was able to make the change albeit a week late!
I am really fed up of gradually falling to my right hand side when I'm sat and it takes a lot of tiring effort to stay upright even though I now have the table I mentioned before.
Tomorrow I go for the chemotherapy, apparently I will be there about 5 hours, but why do people [my daughter and Alan] think someone should be with me? I am taking my Ipod that I am charging up now and my nintendo which will be charged up as soon as I find the charger!
So more on the hospital day and being a pincushion on the next update.
Friday, 23 April 2010
FOOD FOR THOUGHT
The MS Occupational Therapist came out to see me last week and the only positive sounding thing was amazement at me not having a wheelchair. An option that I have now come to see as my life-saver. The only problem is of what sort, I cannot wheel myself due to lack of strength, and my carer isn't allowed to push because he has just had a heart attack. I know that I can have one on long term loan from the Health Authority [a wheelchair not a carer] but do they only supply the sort I can't use? What would be ideal is a powerchair, even though they do look like a Robot without the tracks, the seat turns 180 degrees so no more 3 [30] point turns and with a joystick control, I would not not have to grip the handlebars and hold in a lever to move. I know what I want but I would also like to know how to afford one. They range from 3 to 6 thousand pounds.
My main concern is the concrete steps and me somehow being able to get outside! The OT is putting the wheels in motion for me to have a stair lift but that is inside, the Housing Authority may think that it isn't viable to install a ramp system and recommend I move to a level access accommodation, either a 1 bedroom flat or a 1 bed bungalow. Moving in itself wouldn't be objectionable to me because there is no community spirit in this neighbourhood but its the thought of leaving behind the garden; and the décor inside the house which I have spent at lot of money on bringing it up to a decent standard. This house had been totally neglected for about 50 years prior to me moving in, all the hard work and costs involved I would be reluctant to walk away from. [OK ride away from]
I'm sure the OT was trying to help when she started pointing out features on the laptop that she had decided would be useful to me. I was very restrained and didn't ask her if she often told her granny how to suck eggs. I keep smiling to myself about the restraint I used.
Anyway the OT is calling again next week so I shall see what is happening. She asked me to consider moving, and I have considered it but need more information, and to be told of all my options, to come to a decision.
I have, however, realised that all the things I have read and been told all amount to the same thing, I will not improve, treatment stops me getting worse, but there is no cure only treatment to make it stand still. Why had it taken me so long to put all the pieces of information together? Probably because despite the consultant showing me a brain he insists is mine on MRI scans, in reality mine has long since left the planet, as anyone who has known me a while will agree.
This is only a short piece because I feel so weak and tired at the moment.
So see you all later.
Thursday, 1 April 2010
ONE WEEK AS YOYO {UP AND DOWN, UP AND DOWN {yawn, yawn}]
Hello friends! It is day 3 of the steroids so I decided I was maybe fit enough to go out for a drink. I did and I discovered they hadn't had as much effect as last time. I have only slept for about 4 hours over the past two nights in total so planned to not have a shower this morning to give me time and energy to apply some make-up. Best laid plans etc.!!!
The 20 minutes I saved myself was wasted trying to fit the new type of 'discreet' mini urine collection bag I was trying that wouldn't be so obtrusive and therefore allow skirt wearing again. It didn't work like [what did I expect?] the Velcro fastening bands were obviously designed to be used by people with two working hands so the 20mins saved was used on trying to thread the holding bands onto the bag and trying to get the Velcro to grip the band together without also gripping my skin! In the end I used the new bag but put on my leggings for speed and convenience.
This made me half on hour later than I had arranged to meet Alan, so I was trying to answer his frantic call whilst finishing getting ready. Fun.
I ended up meeting him late wearing no make-up and feeling totally worn out. I had been looking forward so much to this outing and having the opportunity to dress up, so I wasn't very happy with the result. I enjoyed the lager and the company but I had not realised that the discreet bag was about 4 times smaller than my usual bag and therefore needed emptying more often. Seeing a lump on my thigh getting larger every second was disconcerting to say the least, I spent most of the time trying to cover my leg with my coat and reaching crawling speed to the toilet to empty the bag, which was difficult as I had to try and balance whilst doing the emptying.
So it was an enlightening outing although not relaxing and has given me a few pointers for the next time I venture forth. Wearing leggings was a good idea in the end as they are a dark denim colour and so emptying mishaps did not show too much! But I learnt some new coping strategies like not even trying to do anything intricate or delicate with my right hand, it only causes accidents no matter what I am trying to do. I have learnt previously that for the sake of saving feet I must not try handling a sharp pointed knife in the wrong hand, a puncture hole through my toe is not funny or healthy.
When I was given the last round of steroids I had been warned about the non-sleeping effect so that didn't come as a shock, but discovering that I am only allowed the course every six months was disheartening. Well feeling fit for 1 week every 6 months was better than nothing wasn't it? But when this time I only seemed to have 1 day of relief instead of 5 I was very discouraged. I felt so drained whilst we were out that when I saw a customer using a supa dupa powered wheelchair I fixated on it, and knowing that my mobility scooter is too heavy with my present muscle weakness and slow reactions I realised that I too would probably be permanently in a chair like that in a years time. Therefore feeling really under the weather combined with the steroid failure has led to a deepish depression. In fact the none sleeping last night was time spent crying and searching the web pricing up power chairs.
So now I've finished this course and am hoping to be able to get some sleep. I think the moral of the story is learning to pace myself better e.g. getting dressed up OR go out NOT both.
Today has been a mixed day, either I can keep my balance but after a couple of yards the muscles feel so weak that I feel like collapsing where I stand; and the next hour it can be difficult to stand at all, I feel myself falling forward and obviously spilling my drink, plate, whatever and can do nothing about it. I have done a lot of cursing this morning I've called myself swear words I don;t even know.
I've just been to the toilet and got involved in a weird roundabout situation with the door which decided to open as I grabbed it [logical] but I was grabbing it to stop myself falling over, now I am sat safely ensconced on the sofa it is funny but was frightening at the time.
So I think it s about time I found a distraction or something else to obsess about – how about family history? I heard that can become quite absorbing and do you anyone else who dreams about it? I think the dreams are due to my bedtime reading being genealogy magazines. - as I said obsessed!!
The next outpourings from my melted brain will be after I have had a good sleep, if possible. AND WILL SOMEONE PLEASE LET ME KNOW THIS IS REACHING PEOPLE. My personal therapist does realise I need feedback and is givng it me when able - For that I love her - I am so glad we met at that Barbecue.
The 20 minutes I saved myself was wasted trying to fit the new type of 'discreet' mini urine collection bag I was trying that wouldn't be so obtrusive and therefore allow skirt wearing again. It didn't work like [what did I expect?] the Velcro fastening bands were obviously designed to be used by people with two working hands so the 20mins saved was used on trying to thread the holding bands onto the bag and trying to get the Velcro to grip the band together without also gripping my skin! In the end I used the new bag but put on my leggings for speed and convenience.
This made me half on hour later than I had arranged to meet Alan, so I was trying to answer his frantic call whilst finishing getting ready. Fun.
I ended up meeting him late wearing no make-up and feeling totally worn out. I had been looking forward so much to this outing and having the opportunity to dress up, so I wasn't very happy with the result. I enjoyed the lager and the company but I had not realised that the discreet bag was about 4 times smaller than my usual bag and therefore needed emptying more often. Seeing a lump on my thigh getting larger every second was disconcerting to say the least, I spent most of the time trying to cover my leg with my coat and reaching crawling speed to the toilet to empty the bag, which was difficult as I had to try and balance whilst doing the emptying.
So it was an enlightening outing although not relaxing and has given me a few pointers for the next time I venture forth. Wearing leggings was a good idea in the end as they are a dark denim colour and so emptying mishaps did not show too much! But I learnt some new coping strategies like not even trying to do anything intricate or delicate with my right hand, it only causes accidents no matter what I am trying to do. I have learnt previously that for the sake of saving feet I must not try handling a sharp pointed knife in the wrong hand, a puncture hole through my toe is not funny or healthy.
When I was given the last round of steroids I had been warned about the non-sleeping effect so that didn't come as a shock, but discovering that I am only allowed the course every six months was disheartening. Well feeling fit for 1 week every 6 months was better than nothing wasn't it? But when this time I only seemed to have 1 day of relief instead of 5 I was very discouraged. I felt so drained whilst we were out that when I saw a customer using a supa dupa powered wheelchair I fixated on it, and knowing that my mobility scooter is too heavy with my present muscle weakness and slow reactions I realised that I too would probably be permanently in a chair like that in a years time. Therefore feeling really under the weather combined with the steroid failure has led to a deepish depression. In fact the none sleeping last night was time spent crying and searching the web pricing up power chairs.
So now I've finished this course and am hoping to be able to get some sleep. I think the moral of the story is learning to pace myself better e.g. getting dressed up OR go out NOT both.
Today has been a mixed day, either I can keep my balance but after a couple of yards the muscles feel so weak that I feel like collapsing where I stand; and the next hour it can be difficult to stand at all, I feel myself falling forward and obviously spilling my drink, plate, whatever and can do nothing about it. I have done a lot of cursing this morning I've called myself swear words I don;t even know.
I've just been to the toilet and got involved in a weird roundabout situation with the door which decided to open as I grabbed it [logical] but I was grabbing it to stop myself falling over, now I am sat safely ensconced on the sofa it is funny but was frightening at the time.
So I think it s about time I found a distraction or something else to obsess about – how about family history? I heard that can become quite absorbing and do you anyone else who dreams about it? I think the dreams are due to my bedtime reading being genealogy magazines. - as I said obsessed!!
The next outpourings from my melted brain will be after I have had a good sleep, if possible. AND WILL SOMEONE PLEASE LET ME KNOW THIS IS REACHING PEOPLE. My personal therapist does realise I need feedback and is givng it me when able - For that I love her - I am so glad we met at that Barbecue.
Thursday, 18 March 2010
NEEDLES, NEEDLES & MORE NEEDLES
Day I typing. Now it's 8 weeks after the operation and the mind is still not up to full power and balance is a big problem. I need to use both handrails to navigate the stairs both upwards and downwards, and walking on carpet with shoes or slippers on is virtually impossible. I tend to drag my right foot so footwear tends to stick to the carpet pile and makes me trip.
The appointment at the MS Clinic is still a couple of weeks away and I can't wait! Will medication make me feel better? Will I be classed as fit enough to have the low-dosage chemotherapy or will I be having to endure daily injections? Will I have had all the tests before Xmas for nothing, and have to endure them all again because of the time lapse?
Day 2 typing. The fatigue is making life so difficult that even typing this has been taking too much effort, hence the long delay. Add to that the other factors of family life and you have a perfect recipe for brain retirement, and mine has with no warning.
I have also had the first catheter change which wasn't as bad as I expected [that phrase seems to be my mantra!]. This first time was done at the hospital but future changes every couple of months will be done by the district nurses. So I will have that to look forward to.
Day 3 typing. There has been a 3 day gap and now I just about feel able to finish this. I went to the MS clinic yesterday and all the tests were worth it, the consultant told me which sort of MS it is. Are you ready for these long words? It is called - Aggressive; Secondary Progressive; Remitting, Relapsing MS. (SPRR) Basically, every relapse [which is happening now] will leave me a bit more disabled every time. So the consultant's aim is to stop the present relapse and therefore reduce the percentage of disability which I will be left with.
The only drawback is to the treatment is being a pincushion. First though there are the steroids, but before I take them I have to be infection free, so its to the docs with a urine sample and waiting for the results, then the 5 days worth of steroids which were wonderful last time even if they did stop me sleeping. I felt normal, well whatever passes for normal in my case.
After the steroids I will be waiting for an appointment to have the type of chemotherapy [low dosage] the effects of which will be monitored by regular blood tests and, the consultant asked me. had I understood what the side effects were? I said I had, but being a glass half full type of person, I didn't mention to him that I had only skimmed them, I have read them fully since and if I believed that bad things happen to me I would be worried. It can cause hair loss, heart damage and liver damage aswell as discolouring the urine. But lets not dwell on those. what is more frightening is that if neither this nor the follow up treatment of possibly daily injections don't stop the present relapse. I will be a permanent wheelchair user in about 12 months time. [Well that's better than colliding with the ground, or at least threatening to, on a regular basis like now].
So at the moment I am feeling a mixture of emotions and very edgy. Thank goodness that the plasterer who has been doing some work in the house on behalf of the Housing Department was not a 'jobsworth', I was in no mood for anybody to say 'cannot do this because of …..................' In fact I don't feel like being a nice person at moment it takes too much effort, so I apologise to anyone [especially Alan and the dog} that I may offend until my mind is more rational.
The appointment at the MS Clinic is still a couple of weeks away and I can't wait! Will medication make me feel better? Will I be classed as fit enough to have the low-dosage chemotherapy or will I be having to endure daily injections? Will I have had all the tests before Xmas for nothing, and have to endure them all again because of the time lapse?
Day 2 typing. The fatigue is making life so difficult that even typing this has been taking too much effort, hence the long delay. Add to that the other factors of family life and you have a perfect recipe for brain retirement, and mine has with no warning.
I have also had the first catheter change which wasn't as bad as I expected [that phrase seems to be my mantra!]. This first time was done at the hospital but future changes every couple of months will be done by the district nurses. So I will have that to look forward to.
Day 3 typing. There has been a 3 day gap and now I just about feel able to finish this. I went to the MS clinic yesterday and all the tests were worth it, the consultant told me which sort of MS it is. Are you ready for these long words? It is called - Aggressive; Secondary Progressive; Remitting, Relapsing MS. (SPRR) Basically, every relapse [which is happening now] will leave me a bit more disabled every time. So the consultant's aim is to stop the present relapse and therefore reduce the percentage of disability which I will be left with.
The only drawback is to the treatment is being a pincushion. First though there are the steroids, but before I take them I have to be infection free, so its to the docs with a urine sample and waiting for the results, then the 5 days worth of steroids which were wonderful last time even if they did stop me sleeping. I felt normal, well whatever passes for normal in my case.
After the steroids I will be waiting for an appointment to have the type of chemotherapy [low dosage] the effects of which will be monitored by regular blood tests and, the consultant asked me. had I understood what the side effects were? I said I had, but being a glass half full type of person, I didn't mention to him that I had only skimmed them, I have read them fully since and if I believed that bad things happen to me I would be worried. It can cause hair loss, heart damage and liver damage aswell as discolouring the urine. But lets not dwell on those. what is more frightening is that if neither this nor the follow up treatment of possibly daily injections don't stop the present relapse. I will be a permanent wheelchair user in about 12 months time. [Well that's better than colliding with the ground, or at least threatening to, on a regular basis like now].
So at the moment I am feeling a mixture of emotions and very edgy. Thank goodness that the plasterer who has been doing some work in the house on behalf of the Housing Department was not a 'jobsworth', I was in no mood for anybody to say 'cannot do this because of …..................' In fact I don't feel like being a nice person at moment it takes too much effort, so I apologise to anyone [especially Alan and the dog} that I may offend until my mind is more rational.
Wednesday, 17 February 2010
OPERATIONS AND THE JOY OF ANAESTHESIA
So there I was ensconced at last in hospital waiting for the epidural.
Because I was on the early 'shift' I was woken at 7am to have a shower and be 'prepared' which once again involved blood pressure etc., and the putting on of long white stockings that were very tight and went all the length of the leg. Not easy to put on with only one functioning hand I can tell you, but I was rescued by a Nurse, who having had lots of practice with these things made the fitting appear easy.
I was taken to the ante theatre along with my friend the IPod. Why did nurses who asked what I was listening to, seem nonplussed at The Eagles but were shocked at The Black Eyed Peas? Is it a case of judging a book by its cover and I was seen as too old for any music post 2000?
The anaesthetist then attempted to give me an epidural, which was not successful, as I had expected. My experiences with these type of procedures had always been problematic. 30 years previously the epidural attempt at the birth of my daughter had been unsuccessful but things had advanced hadn't they over the past 30 years? Not to the extent of making things easy where I'm concerned I'm afraid. The anaesthetist was extremely apologetic at the failure and had to give me a general anaesthetic. She was concerned about the effect on my MS but all I was bothered about was getting the blasted operation over with,
So that is how what should have been a quick trip to the theatre turned into a marathon sleep-in. I woke at 3pm too late for lunch and wanting a drink. The nurses fetched me a sandwich and made me a drink. Within half an hour of the grand awakening the anaesthetist was once again at my bedside checking to see if I was all right, she did mention that I would feel the after effects for quite a while. What I didn't realise was that she wasn't talking about the actual operation but the MS. Thinking about the whole event later I realised that my long sleep had made all the staff worried, it just wasn't normal! Huh-huh? Normal and me have never made good bed-fellows.
Now I had the chance for a good rest, I had my book, my IPod and my phone which was not now banned. There was one problem though, in the rush to pack I had forgotten my phone charger so no-one could ring me, I had to make quick calls and turn off the phone between. Just to add to the problems I was trying to find a picture on the IPod when the blasted thing locked on me. I found out a couple of days later that running out of power does that. Clever isn't it? New technology at its best!
Of course because of my extra long kip and the uncomfortable stockings I never slept that night, at least I was able to read using my individual light, and read I did, finishing my book by the end of the night, The days did not start as early as I remembered but even so the days were long. I was glad to be sent home after lunch.
Once again transport had to be arranged and the snow and ice were still on the roads. I was taken to the discharge lounge to await my ambulance or taxi. This time I didn't have any entertainment so had to just observe other people to pass the time, a pity there was only two men to watch, they seemed to be either down & outs getting warm or substance abusers, not much to look at there then. My ambulance arrived and the driver told me there was one other pick up. That seemed the only time he wasn't complaining about the driving conditions. After we dropped off the other lady I was questioned about the incline of my road and the access to it. Although moaning about the driving he did help me too and from the ambulance, and, of course Alan met me at the ambulance. I was so glad to be home!
My first priority was to charge up my phone and to connect the IPod to the laptop so that would charge. I felt fine, I hadn't been in hospital long enough to feel disorientated when coming home. The next day however I understood what the anaesthetist had meant about feeling ill, the operation site was fine, but I had ran into a MS relapse at over 100 miles per hour.
Because I was on the early 'shift' I was woken at 7am to have a shower and be 'prepared' which once again involved blood pressure etc., and the putting on of long white stockings that were very tight and went all the length of the leg. Not easy to put on with only one functioning hand I can tell you, but I was rescued by a Nurse, who having had lots of practice with these things made the fitting appear easy.
I was taken to the ante theatre along with my friend the IPod. Why did nurses who asked what I was listening to, seem nonplussed at The Eagles but were shocked at The Black Eyed Peas? Is it a case of judging a book by its cover and I was seen as too old for any music post 2000?
The anaesthetist then attempted to give me an epidural, which was not successful, as I had expected. My experiences with these type of procedures had always been problematic. 30 years previously the epidural attempt at the birth of my daughter had been unsuccessful but things had advanced hadn't they over the past 30 years? Not to the extent of making things easy where I'm concerned I'm afraid. The anaesthetist was extremely apologetic at the failure and had to give me a general anaesthetic. She was concerned about the effect on my MS but all I was bothered about was getting the blasted operation over with,
So that is how what should have been a quick trip to the theatre turned into a marathon sleep-in. I woke at 3pm too late for lunch and wanting a drink. The nurses fetched me a sandwich and made me a drink. Within half an hour of the grand awakening the anaesthetist was once again at my bedside checking to see if I was all right, she did mention that I would feel the after effects for quite a while. What I didn't realise was that she wasn't talking about the actual operation but the MS. Thinking about the whole event later I realised that my long sleep had made all the staff worried, it just wasn't normal! Huh-huh? Normal and me have never made good bed-fellows.
Now I had the chance for a good rest, I had my book, my IPod and my phone which was not now banned. There was one problem though, in the rush to pack I had forgotten my phone charger so no-one could ring me, I had to make quick calls and turn off the phone between. Just to add to the problems I was trying to find a picture on the IPod when the blasted thing locked on me. I found out a couple of days later that running out of power does that. Clever isn't it? New technology at its best!
Of course because of my extra long kip and the uncomfortable stockings I never slept that night, at least I was able to read using my individual light, and read I did, finishing my book by the end of the night, The days did not start as early as I remembered but even so the days were long. I was glad to be sent home after lunch.
Once again transport had to be arranged and the snow and ice were still on the roads. I was taken to the discharge lounge to await my ambulance or taxi. This time I didn't have any entertainment so had to just observe other people to pass the time, a pity there was only two men to watch, they seemed to be either down & outs getting warm or substance abusers, not much to look at there then. My ambulance arrived and the driver told me there was one other pick up. That seemed the only time he wasn't complaining about the driving conditions. After we dropped off the other lady I was questioned about the incline of my road and the access to it. Although moaning about the driving he did help me too and from the ambulance, and, of course Alan met me at the ambulance. I was so glad to be home!
My first priority was to charge up my phone and to connect the IPod to the laptop so that would charge. I felt fine, I hadn't been in hospital long enough to feel disorientated when coming home. The next day however I understood what the anaesthetist had meant about feeling ill, the operation site was fine, but I had ran into a MS relapse at over 100 miles per hour.
Thursday, 28 January 2010
THE FUN AT YULETIDE AND JUST AFTER
So I thought I had over two weeks break did I? I had not taken my mother and the weather into account!
I did, however, have a break over Xmas but not the New Year. My mother decided to fall and break her arm on New Year's Eve, not due to the icy conditions but to her own stubbornness, insisting she could walk OK on her own within her flat. Of course being New Year's Eve, the A&E was extremely busy, so she was sent home after a few hours with a cast on her arm but no investigation into the cause of the fall. Needless to say she fell again a few days later, and my daughter was once again called upon to travel in the ambulance and wait in the busy A&E. This tine they have kept her and, hopefully, moving her to a home when she is released but they seem to listen to her when she says 'I'll manage' to everything when she obviously cannot.
We were, as a family, dealing with this emotionally when I received a letter to be an in-patient in the Urology department, As usual, transport was a problem, after many telephone calls it was decided that one ambulance could be used, I would be collected for my MS clinic appointment and after that taken straight to the Urology ward. So I did have a short Xmas break and logic was used with regard to the transport. But does anything in my life ever go smoothly? About as smooth as sea during a storm.
This time it was the weather, A heavy fall of snow the day before my appointments prompted me to ring and check about the next day's transport, and, yes, as I had thought, there would be emergency ambulances only due to the snow and many side roads being impassable. So I didn't know when I would get to the MS clinic for the results of the many scans and tests, or when I would be having my operation in Urology.
The next day, the day I should have gone as an in-patient, I received a telephone call from the ward asking where I was. I explained about the transport situation and was told that they would still pick me up as I was going to be an in-patient but she would check. She rang me back and told me I would be collected within the hour, of course this meant panic packing. I had been told that it would only be for one night so I didn't need much. Silly girl believing everything you are told.
The ambulance arrived at Out-patients at about 12.15 pm. Just as the MS clinic had closed but did I expect to be able to fit two departments into one visit? No, I had learned by now that I'm not that lucky!
I was left sitting all day in the day room and nobody going past to remind them I was there, of course the wheelchair was not one that I could wheel so I was dependant totally on other people. Eventually, at after 5 pm, a sister walked past and I managed to attract her attention which set all the wheels in motion. About 10 minutes later the consultant came to see me and told me I was first on the list the next morning. I was then taken to the ward and given a bed, settled into it then given loads of tests - blood pressure, blood, and temperature. I was given the first of daily injections into my stomach that prevents the danger of clotting. Surprisingly there was no pain from this injection probably because of the amount of fat!
It was explained to me that the ward staff had not known I was there despite telling the desk upon arrival, but unfortunately in a different part on the ward. I blame the porter!
The anaesthetist came to see me and told me that she intended to use an epidural anaesthetic rather than a general because the recovery time was quicker and would not cause MS problems like a general would. Obviously she didn't know my track record. Would this be as simple as was made out?
We shall find out next time.
That takes me and you up to the operation time, the next report will tell you all about the operation and the after effects plus what is now happening with my MS.
I did, however, have a break over Xmas but not the New Year. My mother decided to fall and break her arm on New Year's Eve, not due to the icy conditions but to her own stubbornness, insisting she could walk OK on her own within her flat. Of course being New Year's Eve, the A&E was extremely busy, so she was sent home after a few hours with a cast on her arm but no investigation into the cause of the fall. Needless to say she fell again a few days later, and my daughter was once again called upon to travel in the ambulance and wait in the busy A&E. This tine they have kept her and, hopefully, moving her to a home when she is released but they seem to listen to her when she says 'I'll manage' to everything when she obviously cannot.
We were, as a family, dealing with this emotionally when I received a letter to be an in-patient in the Urology department, As usual, transport was a problem, after many telephone calls it was decided that one ambulance could be used, I would be collected for my MS clinic appointment and after that taken straight to the Urology ward. So I did have a short Xmas break and logic was used with regard to the transport. But does anything in my life ever go smoothly? About as smooth as sea during a storm.
This time it was the weather, A heavy fall of snow the day before my appointments prompted me to ring and check about the next day's transport, and, yes, as I had thought, there would be emergency ambulances only due to the snow and many side roads being impassable. So I didn't know when I would get to the MS clinic for the results of the many scans and tests, or when I would be having my operation in Urology.
The next day, the day I should have gone as an in-patient, I received a telephone call from the ward asking where I was. I explained about the transport situation and was told that they would still pick me up as I was going to be an in-patient but she would check. She rang me back and told me I would be collected within the hour, of course this meant panic packing. I had been told that it would only be for one night so I didn't need much. Silly girl believing everything you are told.
The ambulance arrived at Out-patients at about 12.15 pm. Just as the MS clinic had closed but did I expect to be able to fit two departments into one visit? No, I had learned by now that I'm not that lucky!
I was left sitting all day in the day room and nobody going past to remind them I was there, of course the wheelchair was not one that I could wheel so I was dependant totally on other people. Eventually, at after 5 pm, a sister walked past and I managed to attract her attention which set all the wheels in motion. About 10 minutes later the consultant came to see me and told me I was first on the list the next morning. I was then taken to the ward and given a bed, settled into it then given loads of tests - blood pressure, blood, and temperature. I was given the first of daily injections into my stomach that prevents the danger of clotting. Surprisingly there was no pain from this injection probably because of the amount of fat!
It was explained to me that the ward staff had not known I was there despite telling the desk upon arrival, but unfortunately in a different part on the ward. I blame the porter!
The anaesthetist came to see me and told me that she intended to use an epidural anaesthetic rather than a general because the recovery time was quicker and would not cause MS problems like a general would. Obviously she didn't know my track record. Would this be as simple as was made out?
We shall find out next time.
That takes me and you up to the operation time, the next report will tell you all about the operation and the after effects plus what is now happening with my MS.
Saturday, 16 January 2010
FLOWERS ON ICE
Right. to tell you all about what a Contrast MRI is and involves along with the transport saga that is endless, and, of course, weather dependant.
The Urology department appointment was eventually made for the week after the MRI and the same week as my ECG appointment, convenient but tiring for me. The only scanner they had free for the MRI was at the local cancer hospital so the appointment was there, it's a nice place although I wouldn't like to be a patient there, for obvious reasons. I was taken to the scan department by wheelchair and shown into a changing room where I had two gowns to put on, one with the opening at the back and the other with opening at the front, to preserve modesty. I had researched the process thoroughly and so knew that it involved more needles, not something I was looking forward to! I was put into the tunnel machine with the space helmet like before and the a cannula put in my arm at the inner elbow spot, although they had a struggle as the vein wasn't compliant as usual.
The cannula was connected to a syringe loaded with a solution containing the same type of silver as is used to coat CDs, also the cannula would be operated by computer from the staff 'safety' area where they operated the scanner from. First, there was the normal thudding noise from the scanner as it traversed my brain and spine then about 20 minutes later the machine stopped and the syringe attached to the cannula activated, a slight stinging sensation was felt in my arm and then the scanner noises began again.
Afterwards the fun began again – I was wheeled back to the dressing room and promptly forgotten about, I sat for a while like a good girl then realised it was the self-propelling kind with that had large wheels on the outside. So Pat decided she could move herself to the reception area to wait for the passenger transport. Foolish woman! Only 1 hand/arm had a little bit of strength! So what happened? Circles is what happened. At first I could only move in circles but soon figured out that if I gripped the wheel tightly, or as tight as possible with my right hand I could achieve a sort of forward motion, it wouldn't have fooled a policeman looking for drunk drivers but I was going in the right direction f0r a change, that is until I encountered a door! There is not enough strength in my right arm to open a Pull door so obviously I always use my left hand. The only movement I achieved was going backwards as I pulled the door open but ended up too far backwards and unable to keep the door open whilst I propelled myself through the opening. After a few attempts a member of the admin department took pity on me and pushed the wheelchair with me in it back to the main reception.
The reception area is also the snack-bar seating area and I love to eavesdrop whilst waiting! As I said earlier this was the specialist cancer hospital and there was some people whom I couldn't help pitying but others were the ones who broke every rule for visiting or accompanying patients. One in particular caught my ear – A woman accompanying her daughter who both looked like talk show rejects; the mother (about my age) was regaling the person next to her with her ailments over the past twenty years, along with friends and relatives death details, this poor neighbour was bald, obviously because of chemotherapy, and was sat looking very embarrassed but was too polite to tell the woman to shut up. It amused me that we will endure a person with no forethought like that but all complain when the bins aren't collected on the usual day.
After they had gone along came another woman my age with her very frail, elderly mother who had obviously got to an age where she decided she could speak her mind and no-one would be offended. I cannot now remember what she said but it amused me at the time, I commented upon her pretty ring and she proceeded to be give me the history and provenance of all eight or nine rings she was wearing. She obviously still had all her faculties even though she turned out to be nearer 90 than 80.
On the journey home I couldn't help pondering on the fireworks if the older lady had been present earlier when the younger one had been loudly giving all the morbid details of her life. Now THAT would have been entertaining!
Five days later I was at the out-patents again, this time to Urology for my pre-operation assessment, basically it was a series of tests to ensure I was fit enough to have the operation whereas all the neurological tests of the past few weeks had been to make sure I was fit enough for the modified chemotherapy treatment I would most likely receive for my MS. So I was enduring loads of tests [with needles] to make sure I was fit enough to be made fit! (Well fittish anyway) So once again blood was extracted and my blood pressure taken, also the operation was explained [to be honest I would rather not know what people are going to do to me whilst I'm unconscious] I came away with even more leaflets about the procedure, what would happen afterwards, and the benefits of epidural anaesthetic which is what I would be having. As this was only about a week before Xmas no admission date could be given, not that I was desperate to be operated upon.
A telephone call the same day did not help. The local housing authority rang in response to my complaint, good to get a response even if it had taken a solicitor writing to them to get that response. The story is of no-one being prepared to admit to their mistakes, my bathroom and kitchen were 'modernised' during September and October 2008 and as a result of bad workmanship and being ignored for 6 months the leak has now created mould on my Living Room wall therefore the new wallpaper put on in December 2008 needs replacing and the new kitchen needs an entire corner replacing but the housing department thinks I should do the decorating but as I didn't cause the problem why should I pay? Anyway I digress, the house is another problem that will be solved when it is solved. [forget it for now woman and deal with your health at moment]
I was back at the hospital again the next day to have my heart checked, thank goodness it was the last test. I would now have just over 2 weeks with no hospital attendance, time to breathe and even smell the flowers as they say. But it's December and there are not any flowers to smell!
The Urology department appointment was eventually made for the week after the MRI and the same week as my ECG appointment, convenient but tiring for me. The only scanner they had free for the MRI was at the local cancer hospital so the appointment was there, it's a nice place although I wouldn't like to be a patient there, for obvious reasons. I was taken to the scan department by wheelchair and shown into a changing room where I had two gowns to put on, one with the opening at the back and the other with opening at the front, to preserve modesty. I had researched the process thoroughly and so knew that it involved more needles, not something I was looking forward to! I was put into the tunnel machine with the space helmet like before and the a cannula put in my arm at the inner elbow spot, although they had a struggle as the vein wasn't compliant as usual.
The cannula was connected to a syringe loaded with a solution containing the same type of silver as is used to coat CDs, also the cannula would be operated by computer from the staff 'safety' area where they operated the scanner from. First, there was the normal thudding noise from the scanner as it traversed my brain and spine then about 20 minutes later the machine stopped and the syringe attached to the cannula activated, a slight stinging sensation was felt in my arm and then the scanner noises began again.
Afterwards the fun began again – I was wheeled back to the dressing room and promptly forgotten about, I sat for a while like a good girl then realised it was the self-propelling kind with that had large wheels on the outside. So Pat decided she could move herself to the reception area to wait for the passenger transport. Foolish woman! Only 1 hand/arm had a little bit of strength! So what happened? Circles is what happened. At first I could only move in circles but soon figured out that if I gripped the wheel tightly, or as tight as possible with my right hand I could achieve a sort of forward motion, it wouldn't have fooled a policeman looking for drunk drivers but I was going in the right direction f0r a change, that is until I encountered a door! There is not enough strength in my right arm to open a Pull door so obviously I always use my left hand. The only movement I achieved was going backwards as I pulled the door open but ended up too far backwards and unable to keep the door open whilst I propelled myself through the opening. After a few attempts a member of the admin department took pity on me and pushed the wheelchair with me in it back to the main reception.
The reception area is also the snack-bar seating area and I love to eavesdrop whilst waiting! As I said earlier this was the specialist cancer hospital and there was some people whom I couldn't help pitying but others were the ones who broke every rule for visiting or accompanying patients. One in particular caught my ear – A woman accompanying her daughter who both looked like talk show rejects; the mother (about my age) was regaling the person next to her with her ailments over the past twenty years, along with friends and relatives death details, this poor neighbour was bald, obviously because of chemotherapy, and was sat looking very embarrassed but was too polite to tell the woman to shut up. It amused me that we will endure a person with no forethought like that but all complain when the bins aren't collected on the usual day.
After they had gone along came another woman my age with her very frail, elderly mother who had obviously got to an age where she decided she could speak her mind and no-one would be offended. I cannot now remember what she said but it amused me at the time, I commented upon her pretty ring and she proceeded to be give me the history and provenance of all eight or nine rings she was wearing. She obviously still had all her faculties even though she turned out to be nearer 90 than 80.
On the journey home I couldn't help pondering on the fireworks if the older lady had been present earlier when the younger one had been loudly giving all the morbid details of her life. Now THAT would have been entertaining!
Five days later I was at the out-patents again, this time to Urology for my pre-operation assessment, basically it was a series of tests to ensure I was fit enough to have the operation whereas all the neurological tests of the past few weeks had been to make sure I was fit enough for the modified chemotherapy treatment I would most likely receive for my MS. So I was enduring loads of tests [with needles] to make sure I was fit enough to be made fit! (Well fittish anyway) So once again blood was extracted and my blood pressure taken, also the operation was explained [to be honest I would rather not know what people are going to do to me whilst I'm unconscious] I came away with even more leaflets about the procedure, what would happen afterwards, and the benefits of epidural anaesthetic which is what I would be having. As this was only about a week before Xmas no admission date could be given, not that I was desperate to be operated upon.
A telephone call the same day did not help. The local housing authority rang in response to my complaint, good to get a response even if it had taken a solicitor writing to them to get that response. The story is of no-one being prepared to admit to their mistakes, my bathroom and kitchen were 'modernised' during September and October 2008 and as a result of bad workmanship and being ignored for 6 months the leak has now created mould on my Living Room wall therefore the new wallpaper put on in December 2008 needs replacing and the new kitchen needs an entire corner replacing but the housing department thinks I should do the decorating but as I didn't cause the problem why should I pay? Anyway I digress, the house is another problem that will be solved when it is solved. [forget it for now woman and deal with your health at moment]
I was back at the hospital again the next day to have my heart checked, thank goodness it was the last test. I would now have just over 2 weeks with no hospital attendance, time to breathe and even smell the flowers as they say. But it's December and there are not any flowers to smell!
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