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]
Monday, 6 September 2010
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!
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