flu-proof cavewoman!

I've been pretty well over the last few months. I've been fighting back the flu, which seems to be all around me, but perhaps it's a beast my T Cells remember, cos I've just had a very small version of it (sniffles, headaches, wheeziness)...thankfully! I decided against the flu vaccine this year, although I'm on the "at risk" list of people who get invited to get jabbed. The  more I have educated myself about pharmaceutical drugs, the less I have been willing to subject my already messed up system. I'm not completely anti-medication, sure some of it saves lives and brings quality of life for many people. But for some people, myself included, the whole regime of synthetic drugs and heavily processed food seem to have unpredictable, and unwelcome side effects. I sometimes think that my cave-woman's body just can't run on 21st century fuel - it breaks down! I am still working on resolving a 21st century palette with an obsolete digestive system built for eating fish, nuts and berries!

  I had my annual neuro MOT a week or so ago. I just got the written report in the post today. I have gained a point on my disability scale! I think that is just due to the fact that I use a stick for walking, as I'm not much different to last year really....it was a bit sobering though when I inevitably looked up what the numbers mean. I am now 2 points away from being wheelchair bound! That sounds quite serious when you look at it like that! - I still have issues with describing myself as disabled. But hopefully my extra point might mean I can get hold of a precious blue badge, and save my poor legs!
x

guilt and forgiveness...peace regained in the ravaged brain

This fecking disease!
 It sometimes makes me feel like I'm just being crap ((lazy and forgetful, more specifically),  and making excuses! ... that nagging feeling that I'm freeloading! Rationally, I forgive myself for being lazy and forgetful, and I am aware they are symptoms of my disease.
   I think the real knuckle of what it boils down to, is there's no visible signs of my MS, aside my wobbly legs. My speech doesn't slur or mangle too much..I appear, in a Pulp Fiction kind of way, "normal"! I sometimes think it'd be easier to deal with if it were more obvious.  Like it would validate my symptoms somehow. Like having a decent bruise to show after a small but painful accident! I'm not saying I suffer from people thinking I'm just lazy, that's not the case at all, but the inner nagging  voice is far less forgiving sometimes! You can't help but sometimes hear it whisper, when at a low ebb, telling you that your being lazy, or wilfully forgetful etc, etc! ...but I think when your self destructive side starts playing Chinese whispers with you, it's a good idea to end that game by repeating what it whispers to you out loud, and then try to deal with it! ....So there it is... I'm fatigued and forgetful, and I forgive myself!....(mantra of the day!)


x

mardy arse!

I am not as self-pitying and mardy as my blog might suggest! I've just looked over a couple of old posts and all I seem to do is moan!...I just felt an urge to counterbalance this by pointing out that  I DO have up-days!...plenty of them!... I just don't generally blog about them!
:)

x

Toothache in my Toes

Another curious new symptom....for the last week or two I've had unhappy feet! Not the whole appendages, just the tips of my toes (after the first little knuckle)! Weird and not very nice. They range from feeling slightly bruised like I've stubbed them, right through to being woken in the middle of the night with severe pain, though that intensity seems to only last for 5 minutes or so before it calms down to something more manageable.
The best I've been able to describe this intense feeling is "toothache in my toes"!...it brought to mind that scene from "Shrek" where the princess turns from human to ogre, and she has light bursting from every appendage. I know that sound a bit odd, but that's how it felt, except I was radiating toothy toe ache rather than golden light!
You gotta love this crazy-arsed disease for its' sheer novelty value! It still does me in if I dwell on the fact that the pain I feel is not real, but a construct of my knackered CNS. I sometimes find myself telling my brain off for sending me garbled messages, but I guess you can't kill the messenger and all that!
I was laying in bed last night pondering if you can, with a strong enough will, instruct your brain to bypass the dodgy pain signals. So I lay there, and focussed on my toes, which weren't hurting at the time. I really focussed on what the pain sensation actually felt like and imagined my toes really throbbing. I don't know if it was connected or coincidence, but my toes did start to twinge whilst I was focussing on them....then I stopped trying cos I really don't want to induce toothy toe ache! But it was intriguing, and supports the notion that pain and other body sensations can, to a certain degree, be controlled by the power of our own thinking. A friend was saying that there is an established technique of focussing on a part of the body which doesn't hurt and really thinking about how it feels, to detract from the painful bit. This sounds like a very similar technique to what I was trying, albeit a more sensible approach (reducing not inducing pain)! Next time, if there is a next time, I have a Shrek princess moment, then I will put my brain to work thinking about my happy hands and how good they feel...

Just a small aside...I came across an interesting website - I've not fully delved into it yet, but it looks like some practical stuff about diet and exercise specifically for women with MS...

http://www.msdietforwomen.com


x

on cog fog...

I've just read an article on cognitive problems in MS. I think cog fog, for me, is an issue I struggle with. I think I've already mentioned that it's probably hard for friends and family to see this problem, and consequently to really understand it, as I have always been a bit on the ditzy side!
so I've put a link to this article at the bottom of the blog, and I want you, the reader (and therefore quite likely to know me) to bear in mind that this article really resonated with me in many ways.
I have also been struggling with the emotional aspect of the disease, with reactive depression (ooh! Now I have a word for it!) being something that really hits me sometimes. It is sort of a comfort to know that it's as much a symptom as fuzzy legs and forgetfulness, not just me being a mardy-arse, but generally not at the time that I'm feeling it...in the same way that knowing you have PMT does not make you feel any less angry/sad/psychotic!...and reactive depression is triggered by things which are real and probably quite challenging anyway. But I know, in myself, that I am generally quite a positive thinking person, and to be bogged down with things isn't generally my style!
So this leaves me with a thought that there must be coping strategies I can use to chase the blues away.....so back to researching all there is to be gleaned on the internet about helping myself out of any mires I find myself stuck in.

This disease surely keeps you on your toes!
x

cognitive problems in MS

up a gum tree

I finally got a reply from DWP (Dept for Work and Pensions)regarding my application for DLA (Disability Living Allowance). As expected, they have turned me down. Apparently they always turn down the fist application, and I am now supposed to jump through hoops and appeal this. The reasons they gave me, well, I can't really contest. The DLA is, apparently, not for helping with shopping, cooking for others(!), or doing housework. I am able to walk 100 yards, and apparently any care I need is for comfort rather than personal safety. So that's it really, I ain't gonna lie to get it, and clearly their narrowly defined idea of disability does not include me. I don't think I'll get a blue parking badge either. I'm gutted that the fact that my fatigue and cognitive impairment, as well as numbness, and pain on my bad days, doesn't seem to count for anything. I really don't know what to do for the best...I can't afford to live as I am now, but there's no way I'd hold down most jobs. So if I sign on, they will assume I'm fully fit to work, as I am not even eligible for the lowest rate of DLA, so consequently I will be pushed into a job that is likely to drive me into the ground. I am feeling pretty desperate right now. A burden on my family... I don't know where next to turn. Things are set to get worse for anyone with disabilities in this country soon, lots of austerity cuts aimed to make it harder for disabled folk to get any help. I don't have much faith in my future right now...if I get worse and I can't work at all, I don't really think the state or anyone else will pick me up and help me and my family if I fall. ....I feel a duvet day coming on! x

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!

x