Saturday, 5 September 2009


Firstly, can I just say a big Thank you to all of you who left comments on my last post. I really appreciate all your thoughts and it really helps to have feedback.
When I saw the GP earlier in the week, I asked if I could be referred back to an Occupational Therapist. I wondered whether they may be able to help me with some of the problems I am having with my hand and arm. I have also decided to ask them about the whole wheelchair question. I know that they would have to do an assessment, but there may be an opportunity for me to get a wheelchair through them. I'll keep you updated on that!
I am also going to speak to them about my bathroom. It is now becoming a real source of frustration for me. We have a bath in there, with a shower over the bath. I have a bath seat, which sits across the bath and allows me to sit whilst I am showering. But I am having serious difficulties getting my legs over the bath to get in and out. I have found it quite a problem for a while now, but as with anything, you find a way of doing it so that you can keep your independence for as long as possible. I haven't liked showering if Martin was not in the house, but I have done it before, because I had no choice and I found a way to do it. But now it is a different story.
I can't really have a shower if Martin is not there to help me. Not only does he have to help me get in and out, but because of my hand, he is now washing my hair for me too. It is lovely that he cares for me so well. Of course he does this without any complaint, but for me it is quite an issue. The fact that I am needing so much more help around the house, is just so frustrating. I feel as though I am slowly watching my independence slip through my fingers.
It is another thing that I have found quite difficult to get my head around. As I am having these relapses and things do become harder to do, when do you say, "right I can't do this and I need help?"
I have realised that I am pretty stubborn - there will be quite a few people falling off their chairs, when they read that! But what I mean is, I know that I push myself to keep going as long as I can. The way I see it is, that if I can keep doing something, then I should, but when that becomes difficult to do, I find it really hard to stop or to ask for help. To me, that means I am giving in. But I have had to give in, where showering and washing my hair is concerned.
I guess it is such a personal decision, like the wheelchair issue. Only we, as individuals, know when something is too painful or difficult to do.

But, on a more positive note, I have been to a singing rehearsal today! It is for the group that Martin and I are a part of - How Apt.
It was really good to be doing something positive and something that I love. We are looking at the things we want to do with the group, like go into schools and colleges and do musical workshops. We are also looking at hotels etc for the Christmas period and then music festivals and weddings for next summer. So we are having to put a few set lists together.
I must admit that when I got there, I wasn't in a great mood. I was really tired and in pain and although I wanted to be there, it was a struggle. But there is something so therapeutic for me about singing, because, although I was still in pain and oh so tired when we had finished, I felt good for having done something that I really enjoyed!
A lesson there, for me, I think!!


  1. Hi Amelia,
    It is not easy asking for help, see if you can look at it like an energy conserving thing.
    Just like the wheelchair, save yourself for your destination and in this case for the things you enjoy.
    See if that helps.

  2. ask your social worker,please tell me you have one?,that you cant manage showering,if rented accomodation the O.T.can ask for your landlord to convert into a wet room,walkin shower,like ive got.hole in floor basically lol.if you own your own home there are grants available.dont struggle.there is no sense in being uncomfortable if you can get took me 6 months to come to terms with MS.its taking you longer.accept you need help,and take whats mort xxx

  3. Hi Amelia,

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  4. Amelia,
    Please stop by my blog and grab your well deserved award!!!

  5. Hi! Amelia So glad that singing brings you joy. I push myself to swim because I feel so much better afterwards.
    I don't know if it is possible for you, but can you get one of those walk in tubs? It has a door on it that opens and allows you to walk in. The door seals shut and then you run the bath water. It has a built in seat too. It's very small so it can fit in just about any bathroom. Not sure what kind of health coverage you have,if it would be paid for as long as the doctor gives the OK.

    My mother has a tub like that and it has made a big difference in her life. She no longer needs help to bathe, which she hated. A walk in shower is a good alternative.

    Best Wishes and good luck with the treatments.