It's now 14 months since my last (let's hope!) relapse. This means, according to my MS nurse, that I've got another 4 months to heal my tattered myelin sheaths. Any symptoms lingering after that are thought to be permanent, so I thought I'd give a progress report...
My feet are still fairly numb/hypersensitive most of the time, and buzzy, heavy and even more numb when I'm tired. My legs range from almost symptom free (on a good start to a really bouncy day), to feeling like they are two lumps of wood on a not-so-bouncy day. My feet are still ridiculously temperature sensitive. Walking barefoot across our flagstone subterranean kitchen floor has me in agony, and when my feet get hot they feel like sausages that are so hot and swollen they burst (this has not happened to my feet yet!). My shoulders/arms get very achey It even hurts to type on my laptop sometimes (which is a bit of a bugger when you're a note taker!)
I have fatigue issues all the time - I am, by nature, a bit of a grafter physically - if a job needs doing, throw yourself into it. I'm having to find strategies to continue doing what I do with gusto - sometimes the gusto needs breaking up into manageable chunks. I invariably overdo it though, keeping on 'til I can barely walk away at the end! And if I push myself to this point it takes a while to bounce back (sometimes I am still paying the next day). Food and sleep are my friends!
I really can't say about my cognitive health. I've always been clumsy and absent-minded, it's part of my charm(!), but then I've had MS (unknowingly) for most of my adult life, so it's fairly tricky to know how much I can blame my MS! I think it has presented a little extra fog in my head though. I'm sure my organisational skills were slightly sharper than they are now...and as for mood swings, MS may cause mood swings and bouts of depression, but then so does oestrogen...and life! So it's another tricky call as for what to blame!
So that's my symptoms as they stand right now. I'm not expecting miracles in the next 4 months. I am comfortable with where I am with my body. For all the ways my MS has challenged me, the positive gains that I have fought for outweigh them all. I'm slimmer and fitter, with a much improved diet for me and my family. I've changed as a person I think too. Not radically, I'm still very much me, but I feel like I've re-jigged some of my priorities. I'm probably less patient, in a way..I wan't to do the things I want to do NOW! Even though I'm doing my level best to stay well, I have had an important lesson in not putting thing off for another day. I don't take tomorrow for granted so much now. I also have had to become more judicious about the amount I CAN do in my day! My cup has been downgraded to a thimble...but you can still fill a swimming pool with it if you're patient!
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Wednesday 21 March 2012
Monday 12 March 2012
a fighting spirit...
a blog from a brave soul who recently underwent stem cell treatment for her MS. She suffered many complications and setbacks along the way. What I find so touching and inspiring is her resolute cheerfulness, and the love that is so evident between her and her husband...what a star!
http://www.msrc.co.uk/index.cfm/fuseaction/show/pageid/3181
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http://www.msrc.co.uk/index.cfm/fuseaction/show/pageid/3181
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Friday 9 March 2012
having my fat-free cake and eating it....
Spring is starting to spring and there are twitches and shivers of life wherever you look right now. Our garden looks like a bomb has hit it, with bits of felled tree wherever you look! We've been hacking down a couple of very overgrown hazels and an even bigger ash tree, and now we have sunlight!...well theoretically, should it make an appearance at any point!
I'm feeling pretty good physically - legs still made of lead quite a lot of the time, but I do think I still sometimes notice them getting ever so slightly better (when I'm having a good day!).
I've started back on swimming,trying to do it weekly. So far I'm up to 30 lengths of the pool (it's 20m long I think). I'm learning to do proper head-under-the-water breast stroke,I'm starting to really get the hang of it - I've always done the middle aged lady style of breast stroke where you doggedly keep your head out of water at all times and end up with a crippling neck ache!
I'm still keeping to the diet - I haven't yet cheated on it, which is a bleeding marvel. If you know me you might have some idea of my will-power skills and track-record! But I think now you'd be surprised...I have developed self-discipline!...really! I'm actually pretty chuffed with myself about this, and I've lost over 1 1/2 stone in weight for my efforts! My family I think have also benefited from a general raising of the dietary levels. My son (bless his big cotton socks!) has taken up the challenge of making the perfect fat-free jelinek friendly cake, as he says he doesn't consider a pudding a treat unless we can all take part!...what a star!! and he has pretty much cracked it I believe - we had a hot sticky chocolate pudding with custard today made using his recipe, and it was superb. Made only using flour, sugar, milk, vanilla & cocoa powder - pure heaven! I promise I will post the recipe for this soon - he is finalising the amounts so that he can write down a definitive and easy to follow recipe...and I'll try to hold one back long enough from the hungry family/raptors long enough to take a picture (as they really look the part too!)
Off on a tangent, I sent a photo of myself into "The Face of MS", a monthly slideshow of people with MS. I saw it last month, and despite the cheese-fest music that went with it, I found it nourishing and empowering to see so many vibrant, proud and happy people, all at some random and diverse moment in their lives. So when I saw a call for photos for the next month's compilation, I was moved to join in, I too feel like I'm still on a forward trajectory in my life, with so much to look forward to and feel enthusiasm for, and I felt compelled to stand up and be counted... my silly mugshot is at around 3:12...
off on another tangent...just thought I'd mention..the previous two blogs were written about a month ago but I forgot to post them...so that's why I'm going on about Imbolc having just been, in March!!
x
I'm feeling pretty good physically - legs still made of lead quite a lot of the time, but I do think I still sometimes notice them getting ever so slightly better (when I'm having a good day!).
I've started back on swimming,trying to do it weekly. So far I'm up to 30 lengths of the pool (it's 20m long I think). I'm learning to do proper head-under-the-water breast stroke,I'm starting to really get the hang of it - I've always done the middle aged lady style of breast stroke where you doggedly keep your head out of water at all times and end up with a crippling neck ache!
I'm still keeping to the diet - I haven't yet cheated on it, which is a bleeding marvel. If you know me you might have some idea of my will-power skills and track-record! But I think now you'd be surprised...I have developed self-discipline!...really! I'm actually pretty chuffed with myself about this, and I've lost over 1 1/2 stone in weight for my efforts! My family I think have also benefited from a general raising of the dietary levels. My son (bless his big cotton socks!) has taken up the challenge of making the perfect fat-free jelinek friendly cake, as he says he doesn't consider a pudding a treat unless we can all take part!...what a star!! and he has pretty much cracked it I believe - we had a hot sticky chocolate pudding with custard today made using his recipe, and it was superb. Made only using flour, sugar, milk, vanilla & cocoa powder - pure heaven! I promise I will post the recipe for this soon - he is finalising the amounts so that he can write down a definitive and easy to follow recipe...and I'll try to hold one back long enough from the hungry family/raptors long enough to take a picture (as they really look the part too!)
Off on a tangent, I sent a photo of myself into "The Face of MS", a monthly slideshow of people with MS. I saw it last month, and despite the cheese-fest music that went with it, I found it nourishing and empowering to see so many vibrant, proud and happy people, all at some random and diverse moment in their lives. So when I saw a call for photos for the next month's compilation, I was moved to join in, I too feel like I'm still on a forward trajectory in my life, with so much to look forward to and feel enthusiasm for, and I felt compelled to stand up and be counted... my silly mugshot is at around 3:12...
off on another tangent...just thought I'd mention..the previous two blogs were written about a month ago but I forgot to post them...so that's why I'm going on about Imbolc having just been, in March!!
x
the sap is rising...
It was Imbolc the other day..the beginning of spring. It's as cold as hell outside tonight (supposed to be about -3C), but today was beautiful and sunny,so I scrapped all my plans of going into town and decided to get out and garden. It was hard work, but I was sensible and dragged a chair out from the greenhouse and put it in a rare and precious patch of sunshine, and periodically had stops to sit and enjoy the sun (god, I feel like my nan!)
I got the first new veg bed marked out and excavated the old compost heap, which included a nylon carpet base (d'uh!...deeply buried in fine compost and some tenacious weed roots. The dog was quite helpful in the digging (got to love terriers!), but still, it was knackering, but so satisfying.
A year ago, I was absolutely floored, barely able to walk... one of the overriding things that went round my head was "as soon as my legs are well again I'm going to do all the jobs I've been putting off round the house and garden"...
x
I got the first new veg bed marked out and excavated the old compost heap, which included a nylon carpet base (d'uh!...deeply buried in fine compost and some tenacious weed roots. The dog was quite helpful in the digging (got to love terriers!), but still, it was knackering, but so satisfying.
A year ago, I was absolutely floored, barely able to walk... one of the overriding things that went round my head was "as soon as my legs are well again I'm going to do all the jobs I've been putting off round the house and garden"...
x
Sitting here, nightcap in hand, having just driven back from a friends house. A momentous occasion as we all went round for dinner...me included!! Amazing!! It was really lovely, she made sure that she got it right and double checked all the ingredients with me. Apart from family, that's the first time since I've changed my diet that I've been round to eat at someone else's house. I've just avoided it as too complicated. But I must say I really appreciated the effort she went to. She has a diabetic mother-in-law who is eating herself well, so is well used to the fastidious diet regimes of people dealing with chronic diseases through diet.
Happy days!
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Happy days!
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