I've just realised that I've not written about my MS for a long time. Now this is partly, of course, because it means that there has been no significant change to write about. Given that it is a progressive disorder, just pootling along in a sort of equilibrium has had to be good, right?
Over the past two years since diagnosis I've become much more body aware than I ever was. I notice small changes that indicate that something is starting to go wrong and I can act accordingly. Luckily my doctors recognise this. After all it's probably not every doctor that would accept that I know a bladder infection is about to start because my eyes feel strange. Especially when the urine test is clear. But the requested prescription always does the trick and gets me back to normal. I've since learned that this sort of weird occurrence is quite common in MS.
I feel at my best in the late spring, early summer and early autumn. My body hates cold and damp weather, but it doesn't like too much heat either. I am conscious that I walk better and further in pleasant weather but I'm not afraid to use a stick or even, on rare occasions, a walker with a seat if that will enable me to do some of the things I want with confidence. I've been on medication for stiffness and the pain of leg spasms since the start of the year and that has helped too.
I've been seeing a lovely physiotherapist for the last few months to work on dizziness and my core stability, as one side of my body is definitely weaker than the other. She is part of a rehabilitation team and that has led on to appointments next week with an occupational therapist and a speech therapist, because I have some functional weakness in my right hand and arm and a tendency to slur words a little when I am ill or very tired. None of this is earth shattering or even too horribly restrictive yet, but such problems are best tackled early if the access to therapists is offered, so my work doesn't become affected.
I feel lucky to be getting so much help. Sometimes I worry that it is because I am worse than I think I am, but just chatting to doctors or therapists makes me realise that I am at the higher functioning end of MS and that is where I want to stay. I think the input may be influenced by the fact that I am a carer and I am honest about the fact that because of Son 2 I don't get the amount of sleep I should, which is probably a factor in my dizziness. I'm usually pretty good at pacing myself, at taking notice of the spoon theory, but occasionally I forget that even on a good day I can't rush around like I used to and it takes me days to recover. It seems I never learn!
9 comments:
My mum has MS. She was diagnosed when I was 13 so it was about 22 years ago. She has good days and bad days. She tends to rush around and do loads for other people without thinking of herself and she usually suffers for it afterwards. One thing she has said is that the warmer weather makes her feel better. She also is a firm believer in positive thought.
That's interesting, Sarah, because it seems to mirror my own experiences, so thanks for sharing. I believe in positive thought too, though occasionally it does have to be tempered by an acceptance of some physical limitations. But I think I'm actually better now than when we had the NR meet in Birmingham, which was just before my diagnosis. x
It does sound as if you are doing well with it all. I'm so glad to hear it. You have so much to handle, I can imagine how you can't help but put yourself last sometimes.
Glad to hear you're doing well and getting some help. Seems like knowledge, and self-knowledge, might just mean power in your case. Take care. X
Sue - thank you.
Buckswriter - knowledge is the important thing. Sometimes patients know more than health professionals and at other times they are able to experiment with approaches such as diet and supplements on which the professionals are not even allowed to advise. I've devised a menu of supplements which seem to suit me -no mega-doses, just a range of ordinary vitamins and oils based around various therapeutic ideas I've read about.
I imagine writing is hard for you on certain days, too. I'm glad to hear you're doing well though and hope you continue to enjoy life to the full without too much discomfort.
CJ xx
Dear Cathy, it seems so long since I checked in, and obviously it has been, because I didn't know about your MS, and I'm sorry to read that about you - but totally supportive of your honest, calm approach. The thing I wish most for you at the moment is to find a publisher for your book, or publish yourself - the Print on Demand route is not impossible you know. Good to read you, take care, Livvy
Livvy, so lovely to see you here again and thank you. I've actually got my eye on Kindle publishing for the future (I love my Kindle) but for now I just want to get on with more writing while I continue to try the traditional route.
And now I'm off to your blog x
CJ - thanks. Yes some days are harder than others. Fatigue is my enemy and that depends on how many hours I spend caring in a day. The recent two week half term was very hard because he needs constant attention. x
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