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.
