CHAOS TO COSMOSThe path from chaos to cosmos was discovered by telling one's life story

Saturday, 31 October 2009

Today's pain menu

Laying awake this morning (hungry cats staring at me earnestly), for ages I couldn't move because my limbs felt as if they were made of lead, however, if you're looking for pain in any of the following areas, I haz dem:
  1. Head - that sort of feverish fluey headache.
  2. Sore throat.
  3. Neck - still, again, ad nauseum.
  4. Shoulder - joints stiff, achy and clunky.
  5. Upper arms - burning ache and heaviness.
  6. Lower arms and wrists - carpal tunnel.
  7. Hands - stabbing pain in palms like crucifixion.
  8. Upper back beneath shoulder blades - dull ache.
  9. Lower back - just excruciating pain.
  10. Both hip joints - gnawing pain like toothache. The right is the one I fell on 8 1/2 years ago. Pain in the left is a new development.
  11. Thigh muscles - cold, contracted, solid and yet burning.
  12. Knees - tear-inducingly painful and more so to put weight on.
  13. Shins - feel like they've been bruised and beaten with a baseball bat.
  14. Ankles - clunking, sore, achy joints.
  15. Feet - all manner of aches, pains, sores and burning.
Let me reiterate that this was the selection of symptoms I could already feel when I woke up and was still lying in my comfortable bed (thanks to a natural latex mattress.) I hadn't even had the chance to get up and hurt myself and, this general selection is nothing at all unusual.

When I do get up, I feel fluey, weak, lightheaded and my legs start to give way, so for most of the day, yet again (as in 6 days out of 7), I could do no more than an impression of the dog pictured!

Interesting aside: When my mother was waiting at her outpatients appointment the other day, she said she sat next to a man who was going "Oh and ah" in pain. The nurses, you know medically trained professionals, she said, had asked him if he was alright - they could obviously see for themselves that he was in pain - and asked him if he wanted any painkillers.

He declined the drugs, saying that, mostly, they didn't work.

Whenever I've been to any of the many hospital appointments recently, even when I don't notice it myself, doctors, nurses, radiologists, etc., alike all notice that I am breathless and showing visible signs of being in pain. They always ask me if I'm OK and if I need anything too. Mostly this takes me by surprise and I just tell them I have fibromyalgia and ME and that it's "normal" for me.

This man had fibromyalgia too. So mother asks him, "Where does it hurt?"

And (unsurprisingly) his reply was, "Tell me where it doesn't hurt!"

I keep stressing this to her: fibromyalgia hurts anywhere and everywhere.

And that it is possible to tell when someone is in pain.

And that drugs do not kill fibromyalgia pain.

It's like beating my head against a brick wall, because she seems to understand the words, but has no concept of their meaning and implications. Learning what fibromyalgia is and knowing that I have it, provokes no reaction. It's like, "the lights are on, but nobody's home."

(No, she isn't stupid, she totally lacks empathy and is far too engrossed in herself. And yes, my critics will be foaming at the mouth now. The difference is, she just says what she thinks about me. I can back my comments up with solid research, written evidence and witnesses.)

The doctors apparently want this man to lose weight. They do this to me too. First fact, the ONLY reason I have put on weight (it's been many years since I was able to do an impression of a stick insect, if I ever did and the fibromyalgia itself caused some increase, but not all) in the first place is because the first thing I was prescribed was 'effin Amitriptyline (for every one person this has helped, I've read 1000 reports of people who would rather die than take it.)

One of the known side-effects for this drug is excessive weight gain.

But it's cheap, so the NHS pops it out like Smarties.

Then they bitch at us about getting exercise and losing weight - when you can hardly move, let alone exercise and with ME/CFS too, shouldn't do so. I know there's no cure, but you'd think there was something they could offer us (other than pseudo-psychology) and this broken record!

Friday, 30 October 2009

A right royal pain in the neck

One of the many, many reasons I had to stop driving a few years ago was the pain and loss of movement in my neck (this was also noted and confirmed by my Rheumatologist.) For one thing, I could no longer look over my shoulder for merging into traffic. Secondly, if I tried to do so, the pain and spasms were too much to bear and could easily have caused me to lose control of the vehicle and cause an accident. 

This is something that's been affecting me, to some degree, for years, since I suffered a whiplash injury in a head-on collision in the 80s (I was only a passenger), but like all my other symptoms has grown with the fibromyalgia and, has worsened several-fold since I've been forced to put up with conditions in the UK. For a while this year, I had it under some control, but coinciding roughly with the onset of autumn this month, the pain came back again with a vengeance.

Apart from the restricted movement and the pain the worst of it is a horrible bone-on-bone grinding noise in my cervical vertebra whenever I move my head. 

What started it off again was something so seemingly innocuous too: I went to the monthly self-help meeting of our local pain group (ironically). Previously, we've sat around a circular table, so one can see and interact with most of the people quite easily. This time, a long rectangular arrangement had been set out using two tables and so, to talk to people to my left and right, required a good degree of movement. I was only there for an hour or so and, I was careful to move my whole torso and not just my neck as often as I could, but the damage was done.

There was about a week or so before my next outing (to the gynaecologist), so I set to work to try to relieve it as best I could. I have special neck pillows, a TENS machine (which I've since had to ditch), specific exercises, relaxation techniques and a Wheat Bag Heat Pack. (Which is great, but only affords temporary relief.)

The pain had just subsided enough to get below the category of *excruciating* the day before I was due to go out again and, taking the bus rather than walk the mile + to the station, the second the bus moved, I heard the "crack" in my neck and was in agony again. A week later I had to go back to the same hospital (same floor too and no, they couldn't do it on the same day) and the day before, I'd merely leaned on the kitchen work surface (because I was having trouble standing unaided) and looked up everso slightly. Bang, crack, agony in my neck once more, not helped by outing. Now the pain seems to have taken up (probably winter) residence.

Return of the chest pains

Whether exacerbated by the other day's increase in brain fog and this is part of the crash I was suspecting might occur, I don't know, but on Wednesday night, after not having used it for some time, I used my TENS machine as I'd been having a lot of extra pain and stiffness in my neck and shoulders over the last couple of weeks (another long story for later).

On a few occasions before, I've had chest pains after using the TENS machine, but when one gets chest pains regularly and they're part of the ME anyway and are only one of far too many other aches and pains to count, one never quite knows what is causing them, or whether to worry. Instinctively, I probably should.

Immediately after using the machine I felt a tightness in my chest. Shortly after that I went to sleep, but yesterday morning I woke up with notable tightness around my chest, pain and numbness down my left arm and a feeling like I'd been kicked and winded in the centre of my back between my shoulder blades. My throat and chest tightened more if I tried to take a deep breath.

Nevertheless, I dragged my sorry fat arse out of bed to feed the hungry cats then get my own breakfast. I'd got as far as getting myself water for taking medication, had warmed up my wheat bag in the microwave to hopefully help with the neck and shoulder pain and made my coffee, so I took the drinks to the bedroom while my porridge was cooking in the microwave.

On the way back to the kitchen, I was waylaid by the furball formerly known as "the baby who refuses to be put down", weaving in front of me and shaking his ample butt and tail in my direction, whilst looking up at me with sad eyes and crying plaintively. So I picked him up and snuggled him, turning on the baby talk - this quickly embarrasses him into shutting up - put him down, made my way back to the kitchen (this is all of a few paces): in all, hardly major exertions.

On my way towards the microwave, I grabbed a spoon from the draw with which to eat my boring breakfast gruel, but I only got half way there when I suddenly felt as if I'd been kicked by a mule in the solar plexus - so severely that my legs involuntarily buckled and twisted beneath me. It completely winded me and the pain around my chest increased 1000-fold. I grabbed hold of the work surface and slid myself down onto the floor to sit with my back against the wall.

There was also the incident with the nicotine patches when I gave up smoking 2 years ago and yesterday morning's episode was startlingly similar. So once more, based on my qualification as a first-aider, "... I put myself in the recommended half-sitting position with knees bent, tried not to panic and eventually the pain and constriction subsided and breathing became easier."

And yes, once again, it was bloody scary for a while there.

But that's not the end of the story ...

So, there I am, writhing on the kitchen floor - not something I do frequently, just for "fun" - trying to regain control of my basic functions, clearly having trouble breathing. I'm certain any reasonably compus-mentis person would have assumed from my appearance that I was in severe pain and in need of help. I couldn't even speak. Once I could speak, it was in breathless panting.

Meanwhile, mother was waiting for her lift to take her to a hospital outpatients checkup. She was hovering around the kitchen door, so there's a chance she even saw the whole incident, but she could certainly see me in trouble on the floor. All I could hear, while I'm down there thinking there's a chance I could die here, was "I hope this woman [the lift] hasn't forgotten me."

Ignoring me, mother went outside to look, came back in, then she thought / worried other things out loud, then she called the woman up to see if she was coming, then she announces she doesn't know what she was going to do. Still completely failing to acknowledge my predicament - I couldn't see her, but I knew she was approaching the kitchen - she asks, "What am I going to do?"

By this time, I could, just, wheeze out a few words. I told her she'd have to call a taxi. Well, actually, I told her not to worry, because I might need an ambulance first, then told her to get a 'kin taxi and get out of my sight, because I really couldn't believe that she was wittering on about her own non-urgent needs while I was laying on the floor in possibly life-threatening trouble.

Know what she said? In whining tone, "Well, I can't lift you. I can't do anything."

So the first is true. The second NEVER is and, even if it were, deciding to ignore the problem and pretend it isn't there, definitely is not the answer. Not if you're sane human anyway. And this is, by no means, an isolated incident.

By that time I could feel my heart pounding in my chest like it was hammering on my sternum to be let out. Involuntarily, I pushed my hand against my chest to *hold* it in. Even without my hand there, I could feel my pulse thudding up through my esophagus, throat, neck and left arm, but I wasn't really sure what was causing it most; the original problem, or utter rage that my own mother could so totally, seemingly knowingly and willfully, absolutely fail to react in any way to a what really could have been a genuine emergency involving her child. If I hadn't been there myself, I really would not have believed this had happened.

(And, no doubt there will be people who still don't believe me and will probably try to bully me into silence again because they think I shouldn't tell the truth publicly. They will be the same ones who do believe my mother portraying herself as the "victim". They really don't know the half.)

Mother got her taxi, I stayed down until I got my breath back, then crawled to bed and stayed there most of the day, did my best to switch my brain off and relax and even managed to sleep on and off, but the pounding pulse didn't subside until evening. Mother got me some water when I asked, but otherwise left me (without food) all day. I still had to cook dinner later, even though I could bearly stand up. The severity of the chest pains has subsided now, but they return to some degree every time I get up today. I feel like I've done 10 rounds with Ali, been kicked and punched all over and feel absolutely washed out with zero energy.

It used to concern me a bit about having such an emergency when I lived on my own out in the wilds of Tenerife, but clearly, those circumstances did not increase the danger at all. This time, by the time I was capable of getting to a phone to get help myself, the emergency didn't seem so pressing. Next time I could die first.

Factors: viral heart damage could be linked to me/cfs. Warnings: "Before you use any brand of nicotine patch, make sure your doctor knows if you have, or have ever had, any of the following: chest pain from a heart condition (angina); heart attack; high blood pressure (severe); irregular heartbeat (arrhythmia); kidney disease; liver disease; overactive thyroid; skin disease; ulcers; or any other serious illness." In addition, although TENS machines are supposedly virtually side-effect free, they should not be used by people with "... certain types of heart disease." (Of course it was suggested by pain management. Of course I got rid of it!)

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.

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. 

Thursday, 1 October 2009

2 years smoke-free

Today marks the second anniversary of giving up smoking. Some time before that I'd bought nicotine patches, didn't say a word to anyone, didn't make any promises that I may not have been able to keep - not even to myself - and put them in the bathroom cabinet for "one day", if that day ever came.

It was on September 30th, 2007, when I realised I only had enough cigarettes to last until the end of the day that either I had to rush out to the shops, or here was an excellent excuse and timing to use those patches. The patches I've regretted ever since and I still say they caused a mild infarction, or at the very least I had a violent adverse reaction to them.

Otherwise, after 2 years, the mixture of negatives and positives from giving up is, frankly confusing and somewhat comical. In a sense, I am very disappointed, because I certainly do not feel any better or healthier. For other reasons, actually, my health has seriously deteriorated in the last couple of years, so I suppose have to convince myself that it would have been MUCH worse, if I'd not given up.

I still get breathless easily, which, curiously never used to happen when I smoked. I still have a spontaneous, hacking, dry cough whenever I try to sing, take a deep breath ... that I also never had before. This year, I did volunteer for a lung function test because of these things and I was found to be absolutely normal. I'd told the nurse honestly how much I used to smoke and she had said, "Well, you got away with it." Which I figure is a good reason as any to stay stopped.

How much of my 55 lb weight gain is to do with stopping smoking, I don't know. The after food craving I've managed to lick with mostly only will-power. I've NOT to used extra food and especially not sugar as a substitute.

Two years on, I'm still getting cravings, although they are [too] slowly diminishing. First thing in the mornings is the worst and I still need a "fix" of strong, fresh, black coffee to kill that one, but I've also managed to reduce my coffee intake.

Worst of all though, is that without the barrier of my own personal "smoke screen", all my other allergies and intolerances have become much more acute. Things I didn't used to have negative reactions to, now bother me terribly. This is, I feel, also worsened by there being more pollution in the UK, closed housing with insulation, heating, synthetic carpets, etc., compared to the tiled floors and open doors and windows I was used to in Tenerife. 

Whenever I go out and might have to wait for buses, trains, doctors, etc., I make sure I have entertainment in the form of music, radio, book, magazines, as well as something nibble and water to drink. I feel like I'm taking a toddler out with all the supplies I need to drag along, but I still just CANNOT sit anywhere with nothing whatsoever to do. That is the surest way for me to reach into my bag absent-mindedly, expecting to find a packet of cigarettes and a lighter lurking at the bottom and for me to become exceedingly tetchy when I find that there are not.

On the plus side, I can enjoy other people's cigarettes. I find it strange that this doesn't upset me or cause cravings, but I actually find it "satisfying". It's bloody good value too and I'm making all sorts of friends at bus stops when I sidle up to strangers and ask, "Can I 'ave a whiff of your smoke mate?" :)

Looking back at the progress report I wrote last year, I'm seriously under-impressed to discover that, seemingly, nothing much has really changed or improved in the last year. I'll have to wait until I've had 5 years smoke-free and see if I enjoy a huge improvement by then. I won't hold my breath!