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.
Tuesday, 10 August 2010
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.
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