Firstly, hope you all are having a good St. George’s Day.
Now the moan, sorry…MS has over the years taken lots from my life, but I have always persevered with my love of knitting. Even though MS made it harder, I now knit baby clothes (lighter to hhold) and give it to the hospital baby unit.
I really struggle to do it, but somehow manage, but now this crappy illness will not let me keep hold of the sewing needle to sew them up, so I am going to ask my ñeighbour opposite me, will she sew them up please.
So my message to my MS today is …UP YOURS!!! You are going to have to try harder than that to stop me!
I get really angry just discovering more and more things are gone, I discovered last week that I can’t even do a brownie salute with my left hand (thumb covering little finger tip across the palm and 3 fingers upright in the middle). My left hand is just weird, the 3fingers stand up but I can’t hold them together unless they’re tipped forward. Even weirder is the tip of my index finger curls forward too… I can’t even do that with my good hand! Not important on it’s own but I’m now aware that my left hand is not too trustworthy, another small disability
Yes, it’s definitely cruel and I’m sending you a hug but you’re right, don’t let it stop you
It is cruel Pam,well and truly.i learnt to drive because i could not walk more than a few yards,i had got my independance back,only to loose it for the 2nd time as i had to give driving up,due to vertigo and my head not being right,i just wasnt safe to drive anymore,i made the decision and even tho i knew it was he right one it hit me bloody hard.we try and find a way round things and then it takes that too,so annoying and soul destroying at times.
It certainly is cruel Pam, the things it takes from us.
I used to do very fine needle work but that went as my eyes went, along with driving and reading and endless other things!
So pleased your neighbour stepped into the breach and you can carry on knitting. I do tapestry now to keep myself amused, it’s bigger stitching than I used to do and a bigger needle so as yet not a problem, I try not to think about the day I might have to stop!
Hope you are having a reasonable day in sunny Stroud!
Yes it is cruel. But I really appreciate your knitting. We lost our first baby who died in the womb after eight months. When she was delivered the midwife dressed her in clothes knitted by volunteers who donated them to the hospital. And that’s all I need to say.
Oh Steve, that is so sad, but also lovely to know that there are people who , like me, doing something that gives us pleasure, but also helping someone else, as I feel sure, for you and your wife, it helped a little, to have your precious baby dressed.
I hope mine has helped someone as much as that helped you and your wife.
As I have said elsewhere " MS the illness that just keeps giving" we are so lucky we should start a fan club and praise its ability to stop us wasting time doing stuff we want to do.
I have had a fight and lost at every new part it wants to take from me. It is a thief and keeps robbing bits of me sometimes you don’t miss the stuff it takes until it has been gone for ages and you think back and remember. Ahhh the delight of our wonderful friend.
Keep on with your knitting, one of my old sayings when I was working was “there’s more than one way to skin a cat” you have to find a way round these obstacle’ s.
Pam. , Like you I knit. I do baby clothes and blankets because like you it is easier on my arms. I also send them to a premature baby unit. I am so glad to hear that someone else’s efforts helped Steve and his wife in their sorrow. That spurs me on. I also crochet. Every night you’ll find me here in my little corner, crocheting or knitting. In fact now I can’t just sit and watch the TV! Keep going. It is good for our minds and our hands. Night Anne X
I started reading this thread and by chance found the answer to yet another problem, which is the index finger of my left hand curling over - started a few months ago and now I feel it getting worse - I’m having trouble holding a fork without it slipping and even with a small plate of food, find other people have finished and are waiting for me. Are other people like me, trying to disguise all these signs and symptoms? Had a friend staying this week, retired social worker, who decided to social work me, as she thinks I should prepare now for inevitable deterioration. I KNOW! I really don’t need to hear that. So a bit down.
I saw my consultant in January (10 mins, another story) and told him I felt I had deteriorated in a year. Oh really? he said. I know these people never want to commit themselves, but it would be SO helpful if they said ’ in a year, this might happen’ or ‘in five years, from past experience, this might be the case.’ As it is, every change is another lovely surprise!!
I saw my consultant in January (10 mins, another story) and told him I felt I had deteriorated in a year. Oh really? he said. I know these people never want to commit themselves, but it would be SO helpful if they said ’ in a year, this might happen’ or ‘in five years, from past experience, this might be the case.’ As it is, every change is another lovely surprise!!
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When I first got Ppms I regularly saw ’ specialists’ , I was never told what to expect by any of them, no tips , no advice, no nothing and this was private !! Personally I find that bordering on criminal negligence. How can you pay for and ask a specialist for their advice and they not give it to you ??
The last time was a total farce, a new specialist I hadn’t seen before ,this time on nhs ,insisted on taking up the whole hour to do basic checks again , hopping around and putting your finger to your nose etc. I asked why she was doing this , did she not have access to my medical records to see I d done it many times before, she replied not with her I hadn’t. So I said to her so what your saying is every time I see someone new , I ve got to do the basics tests again and they won’t bother with any information on my medical records ??? I may has well have gone and seen the baker !!!
I don t bother anymore, I don’t exist just to pay the wages of some taciturn idiot !!
Its so annoys me,every time i see a dr or neuro they have me doing all the tests you mentioned,you get so fed up with it,there never seems to be any good advice or help,makes you feel like just giving up.