Chaos to Cosmos
The path from chaos to cosmos was discovered by telling one's life story

Wednesday, 28 October 2009

Another foggy day

With fibromyalgia and myalgic encephalomyelitis, some days the pain is the worst symptom, others it's the fatigue and on others, it's the lack of brain capacity or fogginess. (Fibro Fog and ME/CFS Brain Fog)
Fibro fog: A type of cognitive dysfunction reported by many people with fibromyalgia. Also sometimes referred to as brain fog, its symptoms include difficulty with concentration, memory deficits, and confusion. The reason for the changes in brain function with fibromyalgia is not clearly understood.
Every symptom on it's own is enough to hamper functioning and I really couldn't say which is the worst, but the fog certainly gets top marks for frustration. All day today, I've found myself - more than usual - going to another room and forgetting why I was there. I've had real problems concentrating on anything. And despite knowing I'm doing this, I've been unable to shake it.

Worse yet, I'll be doing something in one tab of the browser, switch tabs and wonder WFT I went there for! I'll be doing something like saving a link and a nano-second later, I can't remember if I have saved it yet or not. I'll think of the next thing I want to do, click through to my bookmarks or startpage or wherever from where I can access it directly (and do so regularly) and, once again, in the split second it took me to click there, have forgotten what the hell I wanted to do!

The sheer frustration of having to backtrack and search the brain cells for such simple information, so frequently, is so hard to describe. Wanting to do something that should be super easy, but not being able to will myself forward towards achieving it is immense. Yet I'm doing most of what's recommended already.

What worries me is that when I've had frustrating bouts like this before, just as overdoing physical exercise does not gradually increase tolerance but causes me to hit the brick wall earlier and harder, so trying to think beyond the fog's limited visibility tends to cause a brain crash, where my brain stops and capacity for thinking ceases up and becomes impossible. I hope this does not imply an impending bad crash / relapse, but sadly usually it does.

Sunday, 18 October 2009

The 7 Menopausal Dwarfs

Never know whether it's climate change or the change of life, fibromyalgia or the wind direction causing my symptoms, but tick all of the above.

Itchy? A flea-bitten moggy scratches less that I do!

As for Sweaty, I like being too hot better than being too cold, but there's a limit, which is definitely exceeded when I'm drowning in a river of sweat despite having stripped down to a strappy top, outdoors, in October, in the UK. If I go anywhere now, I get so hot that by the time I get home, I have to peel my soggy clothes off and dash for the shower ... and I'm glad of the sweat, because without, I'd worry I might spontaneously combust.

Currently, these symptoms - especially the hot flushes - are making me feel so ill that travelling anywhere is becoming more and more difficult and unpleasant. I don't like going anywhere on my own any more, because, as soon as I do, I get hot flushes and along with them extreme nausea, lightheadedness, dizziness and general spaced-outiness. Then I end up on the floor, vulnerable.

On Thursday afternoon, I was coming home from the hospital in Southampton on the train and in near panic - because I honestly didn't know if I was going to make it without either being sick or passing out - was desperately clawing through my travelling pharmacy (a.k.a. backpack) for sea sickness bands, wet wipes, Migrastick and whatever, to try to calm it all and hang on.

The nice gynaecologist I saw at the hospital asked me a slew of questions about menopause symptoms too. On the one hand, I was glad someone cared enough to ask. On the other, as the first question he asked me was my age, it thought it a bit indelicate to sort of take it for granted.

Then again, he could hardly miss Bloaty, Bitchy and Psycho coming his way!

Sleepy nodded off, involuntarily, no less than three times yesterday, but then that could be the menopause, the fibromyalgia, the CFS, or any number of other reasons.

They could have called Forgetful, Foggy! We [sometimes] remember her, don't we?

Still, if these symptoms do have anything to do with the menopause, at least there's hope that they might diminish a bit in future. And the sooner, the better. Please. [2020 UPDATE: Hasn't happened yet, so must conclude that the symptoms are entirely due to ME, exacerbated by incompatability with the UK climate.]

Wednesday, 14 October 2009

Some relief for eye irritation

Among the worst of the 1001 symptoms I have to put up with on a daily basis are those relating to my eyes - I think for obvious reasons as sight is so precious. My eyesight has been changing rapidly and dramatically over the last few years - I'm sure some of that is to do with age - and my prescription for glasses along with it, that I can no longer justify the cost of having it filled.

Currently I'm making do with the cheap reading glasses that can be found all over the high street (which leads me to believe that many people do this in the UK) as in only the last year, I've needed to upgrade from 2x to 3x magnification - which is one of the highest. This is not really the ideal solution, but it's an economic necessity. When the 3x magnification is no longer strong enough, then I shall be well and truly in the proverbial brown and sticky stuff.

At my last eye test here in the UK (at least that was free), glaucoma was ruled out, but I failed the peripheral vision test miserably. My night vision went completely AWOL years ago. Now I technically need glasses for distance too. TV has become mostly just a moving blur (which I'd say renders it fairly pointless, except I think most of it's fairly pointless anyway) and I would not be able to drive without correction (I don't drive for many, many other reasons.)

However, some days everything remains blurred, even with glasses.

Now I can only read for a certain length of time - which varies daily from a few minutes to a few hours, though the latter is rare - and then only if the light is right. I find reading on screen a lot easier than reading a book. In fact, I've only read three books in the last 15 years because I find it so difficult to find the right light, print size, wind direction, "R" in the month, etc. And, in any case, I find it generally too painful to hold a book for long enough, because of wrist pain. And most of the time I cannot read enough at any time to retain the flow of a story. And I can only take in so much before my brain stops too, so it's impossible.

Then there are the days when any light or moving things (even a scrolling screen) makes me dizzy and nauseous. If that gets as far as a full-blown migraine headache, then I can only lie flat in a darkened, quiet room until it subsides - which can take days. Other times, I can only listen to music or the TV, as long as my eyes are closed.

And on top of this, I often wake up with gritty eyes and my eyes often feel dry and burning - this is made worse by "overwork" (which can mean as little as 15 minutes) - and at some point in every single day (all day, if things are bad), I suffer such pain and discomfort in my eyes that I constantly, involuntarily blink and squint in response to the sensation of a "foreign body" in either or both.

Eye drops made little or no difference and then only temporarilly.

And every morning I wake up with gungy and sticky eyes. For this I spend a fortune on eye wipes for blepharitis, the only thing that brings any improvement.

Sufficient quantity and quality of restful sleep (I wish!) is probably the only other antidote to these symptoms, along with wearing sunglasses, avoiding bright light, taking breaks from computer and TV screens ...

Fibromyalgia and Your Eye Sight

Tuesday, 13 October 2009

Myalgic Encephalomyelitis Disability Scale

This is an adaptation of the Expanded Disability Status Scale (EDSS), which is used throughout the medical profession. This scale is shown in Living with M.E.: The Chronic, Post-viral Fatigue Syndrome By Dr. Charles Shepherd.

O% - FIT AND WELL FOR AT LEAST THE PAST THREE MONTHS.
No symptoms at rest or following activity. Capable of full-time employment.

10% - GENERALLY WELL.
No symptoms at rest. Occasionally mild symptoms may follow activity. Capable of most forms of full-time employment.

20% - OCCASIONAL MILD SYMPTOMS AT REST.
More noticeable symptoms following activity. Some restriction of capabilities which require physical exertion. Able to work full-time but difficulty with work that requires physical exertion.

30% - MILD SYMPTOMS AT REST.
Limited ability to carry out some tasks which require physical exertion. May be able to work full-time.

40% - MILD OR MODERATE SYMPTOMS AT REST.
Variable ability to carry out tasks associated with normal daily activity. Unable to work part-time in a job involving frequent physical exertion. May be able to work part-time in other types of employment.

50% - MILD TO MODERATE SYMPTOMS AT REST.
Moderate to more severe exacerbation of symptoms following physical and/ or mental exertion. Unable to carry out any strenuous physical tasks. Able to perform light duties or deskwork for several hours a day provided adequate rest periods are provided.

60% - MODERATE SYMPTOMS AT REST.
Moderate to severe symptoms following any form of physical or mental exertion. Unable to carry out any strenuous duties. Able to carry out light duties/ deskwork for one to three hours per day. Generally not confined to the house.

70% - MODERATE TO SEVERE SYMPTOMS AT REST.
Severe symptoms follow any physical or mental activity. Able to perform deskwork or light duties for one or two hours during the day. Often confined to the house and may require wheelchair assistance at times.

80% - MODERATE TO SEVERE SYMPTOMS AT REST.
May only be able to carry out a very minimal range of physical activities relating to personal care (e.g. washing, bathing). Frequently unable to leave the house and may even be confined to wheelchair or bed for much of the day. Unable to concentrate more than short periods of time.

I AM HERE -> 90% - SEVERE SYMPTOMS AT REST.
Bedridden and housebound for much of the time. Experiences considerable difficulties with many aspects of personal care. Marked problems with mental function (e.g. memory, concentration). Requires a great deal of practical support.

100% - SEVERE SYMPTOMS ON A CONTINUAL BASIS.
Bedridden and incapable of living independently. Requires a great deal of practical social support.

Chronic Fatigue Syndrome Disability Scale

Tuesday, 6 October 2009

Autumnal snuffles ...

This morning I woke up coughing, snuffling, sneezing and full of catarrh. I ache (more than usual) everywhere, but particularly in my neck and shoulders, upper arms, forearms and wrists, lower back ... My thigh muscles are icy and in spasm as though "frozen solid" (as they always do in winter) and today's totally new symptom was a sharp shooting pain at the top of my lower legs, which gave way (lost power) when I walked to the kitchen.

On top of all that, I'm alternating between sweating hot flush and feverish shivering, my eyes are full of granulated muck and occasionally, I have waves of strange malaise: a sort of lightheaded feverishness with nausea, when the room spins even if I'm lying down, just as if I were drunk.

I've only been awake for 2 hours and already I'm beginning to have trouble remaining upright. Well, for upright, read reclining on the bed supported by a cushion mountain, but my back and neck have had enuff already and feel as if they can no longer support me. The weather outside is being damp and autumnally cool, which I suspect is the reason for this sudden increase in my symptoms.