Friday, 27 April 2012

firmware upgrade required

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


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 far as I'm concerned he's doing it all for champion!


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!