Monday, 17 December 2012
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!)
Wednesday, 5 December 2012
Monday, 3 December 2012
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...
Tuesday, 6 November 2012
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!
cognitive problems in MS
Thursday, 4 October 2012
Wednesday, 5 September 2012
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!
Friday, 27 April 2012
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
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!
Thursday, 12 April 2012
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!
Wednesday, 21 March 2012
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!
Monday, 12 March 2012
Friday, 9 March 2012
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!!
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"...
Thursday, 26 January 2012
It doubles my resolve to do everything in MY power to stay well, and reinforces my choice to stay away from the drugs. It also pleases me to know I'm doing my tiny little bit to not line their overstuffed pockets any more than they are already. It galls me that one day I might end up desperate enough to say yes to them. I'm not saying it would be weak of me if I choose the drugs in the future, for example,if I was in pain I'd probably take any damn thing to make it stop. But I'll not dwell on that. I'm not in pain.
Monday, 23 January 2012
I'm completely at peace with my MS now. No more dark ad scary nights wondering what will become of me. It's like this - we all get old and sick and immobile at some point in our lives. My life is no more or less predictable than it was before my MS became apparent. So I'm not going to waste time and energy any more on what might be, or indeed, what might have been...
What it has done is to force me to rethink things about myself, and to relearn certain ways of living my life (still an ongoing process). It has helped me to see the value of the "right now". I'm not sure I'm much less of a time waster yet, but I think I am better than I was. I certainly do not take for granted what mobility I have right now. I really appreciate it when my legs are co-operating, and often it's quite funny when they are not! The fact that I have not been left with any really uncomfortable symptoms is a real blessing, I know it could easily have been the case, quite randomly, that I coul have been left with nerve damage that would cause permanent pain. That, I think, would be very difficult to maintain a positive outlook with.
So I'm now looking at what symptoms I still have as likely to be permanent (though there might still be improvement over the next 6 months)...this is what I'e been told to expect.
Oh, and I had my appointment with the MS nurse a few days ago and told her I didn't intend to start on the drugs. She completely had my number! She said she didn't think I would go for it, and was completely respectful and supportive of my decision. I was really grateful for that. I know the decision I have arrived at is the right one for me. It was like a weight lifting off me when I finally committed to the decision.
Had a lovely meal this evening for aforementioned son's birthday. We went to a tapas bar, and I could eat enough from the menu not to go hungry...hooray for Mediterranean restaurants who insist on using extra virgin olive oil! :D
Saturday, 14 January 2012
......and the winner is
.......I am NOT going to take them, at least not for now, and maybe not ever.
The reasons are many and various, and arriving at this decision has taken a whole lot of research, soul searching and agonising. I really considered the drug thing. I read all the pamphlets, I researched often primary sources to really make an informed decision. I even had decided to have a blood test for Tysabri (the monthly 3 hour trek for a blood infusion), and had agreed to start a course of Copaxone (the least offensive/effective in their armoury).
....But then I allowed gut instinct to change my mind. I'm not ready to start on this course of meds, but if I don't start now I will fall out of the stringent N.I.C.E criteria, and no longer be eligible for the meds on the NHS.
So my reasoning was to give the meds a go whilst I can. But I was feeling really unhappy about it, it just didn't feel right for me. Then I read a forum about the MS drugs and people's experiences, and there was good and bad stuff said about them in probably equal amounts, but seeing the pros ad cons argued out was enough for me to have an overwhelming certainty of what I wanted to do.
To be honest, although the nurses and doc were keen to reassure me it was my choice, I felt under pressure to start on these meds now, even though I didn't want to. I think that it a really negative reason for doing something I really have misgivings about.
I am prepared to accept the consequences of my decision, but hey, if it is my Wyrd to end up in a wheelchair then so shall it be whatever I do, and believe me I am doing everything I believe will actually help me cure myself - not just quieten the symptoms....so in doing this, I am throwing myself into dedicating my lifestyle to getting well, and staying well.
So far so good though - about 1 1/2 stone lighter than I was, and feeling really healthy (not counting the MS!). Even if I don't manage to change enough to eat myself well, it's doing me so much good.....now I have to get more on it with the exercising..it's lapsed a little over the winter months, but I'm ready to go...just waiting for my tattoo to properly heal before I jump into a swimming pool (grubby little things lurk in pools dont ya know!)
so now I need to find a pic of my tattoo (mine is the smaller of the two feet!)
I usually buy raisins from my health food shop. The ingredients are listed (in order of highest quantity first).. "raisins". Nothing else. This is a good thing, fat-free, sweet and nutritious, what's not to like about raisins?
Well, hidden oil content, as it turns out! Often it's palm oil too (forbidden fruits for me)...
I was in the local supermarket, getting some supermarkety things. We'd run out of raisins, so rather than getting them from the health food shop, I grabbed a packet off the shelf. Because I was in "supermarket mode" at the time, I flipped over the packet and read the ingredients..."raisins, vegetable oil"! Glad that I'd bothered to check, I put the packet back and looked at another type - same thing, then another...all of the packets of raisins, sultanas and currants had oil listed as an ingredient, sometimes specifying it as palm oil!
I asked at the health food shop and they couldn't even tell me about the raisins they were selling (gave me the "nutter alert - let's just smile sweetly at her" look).
This has really got me ruffled, it has implications for many foods I can still have! - such as my beloved Spiced Apple Crimble cake!
So far, I've trawled the iternet, and all I can find, in terms of suppliers, is in USA (there's a surprise!)I also found a recipe for making your own raisins in a dehydrator (which I don't own).
This is very depressing...and it's so far the biggest challenge to my resolve to stick to my diet in a kosher way. It's much harder to avoid raisins than resist something delicious like chocolate! All the "healthy" stuff you can buy, all the sugar free desserts!