not the best day today. Woke up with a really stinking cold, plus I'm on. Fantastic combination. Luckily, I didn't have work today, which I was very glad of. I've been knackered all day, and really quite staggery. I had a bit of a "duvet day", just me and the dog. It has been the kind of day where you really shouldn't attempt anything too clever! I managed to completely overdo some salmon scraps I was cooking up in the oven for making pate. Like by about 3 hours! oops!!
I think feeling so dragged down physically and mentally has affected my emotional state. I had a bath earlier to warm my bones, got a bit overheated, so got out for a break from the heat and laid on my bed briefly. When I sat up to get back in the bath I had a sudden, out-of-the-blue, uncontrollable urge to cry! That caused my mood to spiral, and I ended up feeling really down. I now realise after long chats with my (patient and long-suffering) husband, is that a large chunk of what's bringing me down is my self esteem. I've been feeling useless cos of the things I feel I can't do any more, and was letting despair get the better of me. Well that's just crap and I know it, but once the "you're useless" niggle gets in your head it starts to grow, and to play malevolent tricks on your brain.
As we talked, it started to become clear...I've been trying to work from the old model. I have been dwelling on the things I did before my myelin fell off, and that are not really feasible now. What I really need to do is really take stock of who I am right now and what I AM capable of. This sounds like the easiest thing in the world to do, on paper, but I'v got a feeling it's going to take some time to really adjust to the new model. But as the 18 month cut-off recovery time looms closer, it really is time for me to come to terms with that and move onwards in a satisfying and productive way, cos where I am now is crap and I know that only I can make it better....though I thank my lucky stars I have a soul mate who is happy to listen to me bleating on for as long as I need to. And simply saying all this out loud to someone who cares is so enormously helpful...| have more to say about my fantasic husband, but I'm ridiculously tired now, so it will have to wait for another day
x
Friday, 27 April 2012
Saturday, 14 April 2012
walking on hot coals
My brave and magnificent husband is going to do a sponsored fire-walk in Swansea in a week or so's time. He is raising money for the MS Society...he's done amazingly well at getting money off of people. I'm stunned at people's generosity.
I think he'll probably be able to take on the world after this! Wouldn't you, after doing it, when faced with something moderately scary, just think "I've walked across hot coals, this is nothing!"?
There is no way I'd do it, not with my heat/cold intolerant feet. They'd probably get spazzy half way and refuse to cooperate!... I say that to myself, but if I chose to tell myself I'd be fine then I'm sure I would be fine, but I'm not sure I could shake that fear off sufficiently to go for it.
I think it was during a conversation along these lines one tipsy night a month or so ago that he said he'd be up for doing it...and was still up for it the next day!
I think it is completely heroic and utterly amazing that he's doing it...as far as I'm concerned he's doing it all for me...my champion!
<3
I think he'll probably be able to take on the world after this! Wouldn't you, after doing it, when faced with something moderately scary, just think "I've walked across hot coals, this is nothing!"?
There is no way I'd do it, not with my heat/cold intolerant feet. They'd probably get spazzy half way and refuse to cooperate!... I say that to myself, but if I chose to tell myself I'd be fine then I'm sure I would be fine, but I'm not sure I could shake that fear off sufficiently to go for it.
I think it was during a conversation along these lines one tipsy night a month or so ago that he said he'd be up for doing it...and was still up for it the next day!
I think it is completely heroic and utterly amazing that he's doing it...as far as I'm concerned he's doing it all for me...my champion!
<3
Thursday, 12 April 2012
Crying legs
For the last couple of weeks, my legs have been especially tired. They occasionally have slightly and randomly buckled under the weight of me standing on them. This is a little bit troubling, but I have had quite a busy couple of weeks, what with tons of gardening and the band's recent world-tour-in-a-weekend! (ok, Rhayader and Wrexham - but for us, 50 miles is a very long way for a gig!)
I've been having some peculiar sensations in my legs. When I put weight on my thighs, like when I get up from a chair or bend down to pick something up off the floor, I get an odd feeling which is very hard to explain, but I'll give it a go...they feel like they are going to either cry or puke! You know that horrible feeling when you are about to pass out/puke when you've had too much to drink and the world is spinning? Well, then transfer that whole body feeling to just your legs, and you get legs that feel like they are going to vomit/cry/collapse!
I have previously moaned about how difficult it is to verbalise symptoms, and I sometime hear myself in mid-description and I know I'm sounding like a nutter! But it is an interesting challenge, and it helps me to find ways of explaining "how I feel" when asked (though in all honesty I'm far more likely to smile and say "great!")....
now that leads me on to a micro-rant!......I follow a few Facebook groups for people with MS, and I do get a lot from it in terms of mutual support and advice etc. But something I don't really connect with is when people moan about being told "but you look so well!"....I don't get it! When I get told this it makes me feel good! If I must have a disabling condition, then I thank the universe that it is a subtle one. Not because of vanity, but because a) people treat disabled people like a different (slightly contagious)species, and b)it means I'm looking fit and healthy (ok that bit might be a little to do with vanity!)....
talking of vanity...I simply MUST declare to the world and record for posterity that I've dipped below 10 stone!...... 9 stone 11!! This time last year I was around 11.5 stone.
Actually, I'm far from being vainly proud of my new shape. I AM proud of sticking to my diet change, but I'm feeling a bit like a deflated balloon! I ain't no spring chicken, and things are little less springy than they may have been 20 years ago! So I'm feeling a bit like one of those puppies with an excess of skin here and there, but I guess it'll sort itself out, or stay saggy...whatever, I can live with that - it's a fair exchange for feeling lighter and fitter (even with my weeping legs!). But a part of me does miss the chunky, robust and bouncy version of me that I've left behind - she was a fine and feisty figure of a woman! But I'll do as I've always done and work with what I've got right now, and fly as best I can in this battered and weather-beaten old banger!
x
I've been having some peculiar sensations in my legs. When I put weight on my thighs, like when I get up from a chair or bend down to pick something up off the floor, I get an odd feeling which is very hard to explain, but I'll give it a go...they feel like they are going to either cry or puke! You know that horrible feeling when you are about to pass out/puke when you've had too much to drink and the world is spinning? Well, then transfer that whole body feeling to just your legs, and you get legs that feel like they are going to vomit/cry/collapse!
I have previously moaned about how difficult it is to verbalise symptoms, and I sometime hear myself in mid-description and I know I'm sounding like a nutter! But it is an interesting challenge, and it helps me to find ways of explaining "how I feel" when asked (though in all honesty I'm far more likely to smile and say "great!")....
now that leads me on to a micro-rant!......I follow a few Facebook groups for people with MS, and I do get a lot from it in terms of mutual support and advice etc. But something I don't really connect with is when people moan about being told "but you look so well!"....I don't get it! When I get told this it makes me feel good! If I must have a disabling condition, then I thank the universe that it is a subtle one. Not because of vanity, but because a) people treat disabled people like a different (slightly contagious)species, and b)it means I'm looking fit and healthy (ok that bit might be a little to do with vanity!)....
talking of vanity...I simply MUST declare to the world and record for posterity that I've dipped below 10 stone!...... 9 stone 11!! This time last year I was around 11.5 stone.
Actually, I'm far from being vainly proud of my new shape. I AM proud of sticking to my diet change, but I'm feeling a bit like a deflated balloon! I ain't no spring chicken, and things are little less springy than they may have been 20 years ago! So I'm feeling a bit like one of those puppies with an excess of skin here and there, but I guess it'll sort itself out, or stay saggy...whatever, I can live with that - it's a fair exchange for feeling lighter and fitter (even with my weeping legs!). But a part of me does miss the chunky, robust and bouncy version of me that I've left behind - she was a fine and feisty figure of a woman! But I'll do as I've always done and work with what I've got right now, and fly as best I can in this battered and weather-beaten old banger!
x
Wednesday, 21 March 2012
progress, however slow
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!
x
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!
x
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
x
http://www.msrc.co.uk/index.cfm/fuseaction/show/pageid/3181
x
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
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