Wednesday, 5 September 2012

Tired, wobbly and slightly foggy

It's been quite a long time since my last post, but generally sitting down with a bit of time to spare often gets overtaken by the urge to sleep, so writing blogs tends to get shunted down the list of priorities! We've had quite a hectic few months, so consequently the blog took a back seat!

Time for an update methinks... The symptoms which have settled in:
Fatigue: as a measure, I can walk up the high street, but then be staggering back and need to sit down for a bit after (and will possibly be knackered for quite a while afterwards). I generally start out on a walk looking completely normal, and feel vaguely fraudulent walking with a stick, but then it's obvious I need one after a while, and the stick not only helps me balance but I like to think I look a little bit less pissed if I'm using a stick (or maybe I just look like a piss-head with a stick!)
Parasthesia: (feeling things than ain't there): fuzzy legs, mainly only from the knees down, sometimes my feet aren't there at all. The level of fuzz changes, according to how tired I am. Generally, my legs feel like they have lead weights wrapped around them (maybe that counts as fatigue rather than parasthesia)
Pain: I'm very lucky, I don't have much pain. If I overdo it with walking I get shooting pains in my legs. I have had one episode of a suspected "MS Hug", but not sure entirely that it was MS related, or was a symptom of gall stones (which I'm aware I have), the MS nurse said they are similar - excruciating pain - like you're being squeezed to the point of bursting! It's only occurred once, and I hope it never happens again! I've never had a pain like it - and I've had a baby!
Cog fog: I have difficulty keeping my brain in gear. Lists help - if you remember where you've put them. I infuriate everyone around me by constantly losing things! It's so predictable it's funny, except that it isn't 'cause it's a pain and I feel like an idiot! Most of the time I just laugh about it, it beats getting fed up! I sometimes struggle to find the right word when I'm speaking, sometimes wrong ones pop out before I've had a chance to filter it. No-one really notices this (or are too polite/bemused to mention it). I find it hard to process thoughts if there's lots of noise going on. It's very tricky trying to figure out cog fog symptoms, and realising they ARE symptoms. You get used to things, you compensate without even knowing you've done it. But I've been being more mindful of myself recently and I've identified some cog fog symptoms... you know you've sussed one when it's a relief to identify it! It explains some of my crapness (but not all! - I've always been crap!).
Muscle weakness: I am weak and wobbly. I struggle to hold a pan of pasta up long enough to drain it. This is closely tied to fatigue, but I don't have to be tired to feel weak.

I am trying very hard to develop good habits. My shoulder was hurting a while back, on the side I tend to hold my stick with, so I've been trying to discipline myself not to lean on the stick unless I need to. It's not like I need it for load-bearing, just balance. I think I was leaning on it and that was hurting my shoulder. I've been going swimming once a week, and doing 1km each time. Diet is going well, though, due to trying to avoid a hysterectomy for my fibroids, I've cut out soya from my diet,though as the moment, I refuse to give up soy sauce! Aside from this wilful transgression, it's not too bad, no tofu, no TVP, no miso, no soya milk. I've started to make my own hemp milk, which is nice, and feels really healthy to drink - no preservatives or pasteurisation, just pure cold pressed hempy goodness! We also got given a bread machine, so all the squeezed bits of hemp you get as a by-product gets thrown into the bread, as hemp protein powder. Our bread is very delicious, even if I do say so myself! It's organic wholemeal bread with hemp protein, sunflower seeds, pumpkin seeds and caraway seeds...lovely!
I am also trying to become a tidy person! This might prove more difficult than relearning to cook! Little by little...I feel like it's important, not just because it's physically easier to get about on wobbly legs in a tidy space, but I think I will be more organised in my brain if my space is organised. Well that's the theory, and it might just remain a theory if I don't pull my finger out!

Altogether then, I'm bumping along quite nicely really - nothing too unbearable, some things are frustrating, but I'm getting better at dealing with them.

I heard on the radio today that we are in an age of neuroscience - that we are on the cusp of a whole lot of understanding about the brain...I can't help but have a little nugget of hope that they, sometime in the not too distant future, might understand the wiring well enough to notice a loose connection in my brain, and fix it!