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

Monday, 31 January 2011

Monday, 31 Jan 2011


Still suffering post-exertional malaise and unable to do more than recline. Even getting into and out of bed is difficult and feels like a major exertion. Talking on the phone caused me to start losing my voice and get a sore throat. If I tried to continue to talk, I just started coughing. Flu-like malaise and aches so bad I took a flu treatment to try to help relieve symptoms. Another day where I was unable to do any more than skim reading and not really concentrate on banal TV.

Tuesday, 1 Feb 2011


Stood up for no longer than 2 minutes – probably less – while talking to a visitor at the door, which increased to pain in my lower legs, ankles and feet yet again. Standing ‘this long’ also made me breathless. Immediately after this ‘exertion’ I began shaking. This took maybe half an hour to subside, but didn't disappear until after I’d eaten lunch. Even so, the general malaise and nausea lasted right through into the evening. Tried to read a book today: can’t hold a book for any length of time, because of weakness and pain in my wrists; can’t support a book on my knees, because raising my knees increases the pain in my lower legs and feet; can’t rest the book on my stomach because of extreme tenderness from a laparoscopy scar (laparoscopy done in 1989) that just won’t heal and, can’t concentrate sufficiently for more than a paragraph or two. Gave up.

Wednesday, 2 Feb 2011


Tried to do a modicum of housework as mother coming home from the hospital today (hey, I tried!), but I had to do only small tasks then sit down again, as I became exhausted, breathless and began shaking from the exertion after only a minute or less, at the same time overheating and sweating profusely, becoming nauseas and my head began spinning. The movement – just walking around the house – also caused my hip pain to flare up and worsen again.

Thursday, 3 Feb 2011


Actually slept and didn’t feel quite as exhausted as usual when I woke up. Knees were very painful, stiff and felt as if they were swollen again, however. Energy did not last. By mid-day, gave up and was only able to half-watch banal TV again.

Friday, 4 Feb 2011


Peeled one apple. Standing ‘so long’ to do this made me so light-headed and dizzy that I had to sit down. I’d slept OK, but I just could not move in the morning and just could not stop yawning. Was particularly stiff with flu-like aches all over.

Saturday, 5 Feb 2011


Ditto yesterday’s symptoms. Too unwell to do anything.

Sunday, 6 Feb 2011


Today hip and lower leg pain off the scale again. Was dizzy and light-headed as soon as I stood up out of bed. Nausea. Headache. 

Monday, 24 January 2011

Monday, 24 Jan 2011


Woke up with the stiffness and aches of being cold – not that I felt cold, just that the temperature had dropped to a level that increases my symptoms. Again had the sore throat, sniffles and feeling in my throat of having catarrh (though blowing my nose produced none) and the same type of headache – a vice-like, feverish headache – I used to get when I had fevers and recurrent tonsillitis as a child. It wasn’t even possible to raise my head up from the pillow without it feeling like my head would explode and I would throw up, for at least half the day. For the other half I was just exhausted.

Tuesday, 25 Jan 2011


Snuffling / catarrh symptoms again, though today they responded to Beconase, so it looks like my allergies have been activated again, probably due to doing a modicum of housework with a new carpet sweeper. Will ask GP for anti-histamine at next visit. Woke up with the same stiffness from cold – house is unheated at night – again with a feeling of swelling in my joints, especially knees. Exhausted before I start, as usual, with the feverish headache. Actually felt a little bit better than of late and managed menu planning. Had to go to shop for food as had no alternative. Walk made me overheated and increased pain in my hip. Had to wait in the Post Office and almost fainted. Undue pressure being put on my with questions over when I will do tasks. Keep explaining that I will do what I can, when I can, but that I have no control over when that is. Mother just won’t get it.

Wednesday, 26 Jan 2011


Didn’t get to sleep until 7am. Alarm woke me at 8am, phone at 10am, cats at 11am and other noises in between. Apart from feeling strung out, exhausted, pain levels and headache are off the scale. Can’t even lift head off pillows without feeling that it will explode. Nausea particularly bad once more. Having had to stand to wait (for just one customer) at the Post Office yesterday afternoon, the pain in my lower legs returned last night and continues today. [This pain is extreme and was the main reason I was unable to sleep.] Hip pain from outing also much worse than usual. Woman saw me stumble / waver while I was waiting. Told her I cannot stand, but she looked at me as if I were drunk. Once more the pain in the left side of my back started up – the same one that began all this in 1995 – dull, deep and sickening, as it always does when I’m extra exhausted. Then I started getting chest pains and tightening round the chest. No option but to spend the day lying down and resting once more. Another day where nothing was done, but where there was no possible alternative.

Thursday, 27 Jan 2011


Lower legs in agony from the short walk to the shop on Tuesday – even when lying down. Joints clicking, feel swollen and painful from cold. Knees and ankles worst. Right shoulder was stiff and painful. Felt dizzy and sick as soon as I got up. Right hip painful again with burning pain right down to the bone, in and around the top of my thigh, bruised pain on the underside and tenderness like from a fresh injury on outside of hip. Mother admitted to hospital with suspected gall bladder problem. Did washing up, cleaned work surfaces, toilet and swept hall and kitchen floor – before doctor and paramedics came. This activity, once again, aggravated the pain in my lower legs and hip, resulting in complete inability to stand up. Dr McLeod mentioned this while she was here, as she had seen for herself how I was struggling. Had a bath in the evening in the hopes of relaxing, but both the house and the water temperature were insufficient to be of any benefit.

Friday, 28 Jan 2011


Fell asleep, exhausted, around 9pm last night and, consequently, woke up at 3am. Didn’t get back to sleep until some time around 7am, then had the utmost struggle coming round at 11am when the cats were screaming incessantly for food. Cold again with all related aches and totally exhausted before I begin, but have to go out shopping. Have feverish headache yet again. First went to Post Office and would have caught bus to town, but could not stand to wait for 30 minutes. Thus, had to walk – slowly – but the further I went, the more pain in my hips and knees. Also too slow to keep warm, which caused my thigh muscles to spasm, which again increased pain that radiated to knees and hip. Was unable to do all I needed to do and had to abandon and get a taxi home. Was too exhausted when I got home even to make food. Sore throat again. Feel ‘fluey’.

Saturday, 29 Jan 2011


Another disturbed night, due to the extreme pain caused by outing yesterday. Did nothing, except watch some TV. Extreme post-exertional malaise, flu-like symptoms, sore throat and coughing as soon as I begin to speak.

Sunday, 30 Jan 2011


I’m reclining on the bed, I can’t sit up properly, because that hurts my hip. My legs are supported, up, on a wedge pillow to reduce the pain from the blood pooling in my calves and ankles, but I’m still in severe pain and have to move them constantly. The laptop resting on my legs is painful. My arms and wrists can’t stand to type for more than five minutes at a time. Writing is so painful I’m breathing as if I’m in labour. Neck supported, because it’s too painful and weak to support itself. [NOTE: in 2022, this describes ‘normal’.]

Monday, 17 January 2011

Monday, 17 Jan 2011

The two fur people in a sunbeam.

Eight hours sleep (barring a few half-awake moments when the two fur people tried to raise me for their breakfast), all in one go and achieved without drugs. This is a first for months, but I won't expect it to be repeated. I decided to go “cold turkey” off the Gabapentin since I'd only been taking it for 2-3 weeks. I've also decided not to start the trial of the Lyrica (Pregabalin) until after I've given the Venlafaxine 3 months. After all, having waited this long for pain relief, what's another couple of months? Fell asleep at 8:30pm and woke up again at 10:30pm and was way awake again until 3:30am. Got another six hours sleep. 

Tuesday, 18 Jan 2011


Cats were insistent about getting me out of bed at 9:30am. Still tired and not rested, because of getting sleep in two separate slots again. Fiddled around on computer, but did not have the ability to concentrate sufficiently to do anything constructive. Otherwise achieved nothing else today, besides eat.

Wednesday, 19 Jan 2011


Got the sum total of 2 hours sleep last night. Managed a nap of about 2 hours more in the afternoon and, in between, guess what I managed to do? Yep, nada, nichts, rien ... Nothing. At. All. Could barely follow a couple of episodes of ‘Bargain Hunt’. Consequently, pain levels, as usual in back, neck, hips, knees and lower legs are off the scale. The tenderness on the inside of my right foot (big toe joint) has also been increasing a lot again lately to the point that I cannot even stand to touch the bedsheets with it. Also, as is frequent when I’m super-exhausted, my nose is prone to bleeding and filling with dried blood.

Thursday, 20 Jan 2011


Took the cats out for a walk to the end of the house and back. [As you do.] Well, Kitty walked. Balu was dragged and carried, as usual. And just this minor exercise made me breathless, exhausted and left me feeling unwell from the “exertion”. By mid-afternoon I could barely sit up and had to lie down in the dark and quiet again. Dozed later, but didn’t sleep. Started getting a dull pain between my shoulder blades again, like I’d been hit and winded.

Friday, 21 Jan 2011


It’s been a very long time since I felt this close to actually puking, even though I feel a certain amount of nausea most days. I’m also shaking and just feel unwell. I’m also getting stabbing pains in my head, which are random and in all different locations – they feel like electrical impulses, which is probably what they are. Took Buscopan to quell IBS symptoms but still have an unbearable stomach ache. I’m also more confused and ‘foggy’ lately and think this all has something to do with when mother washed the kitchen floor with a highly perfumed, chemical product the other day. It made me feel ‘gassed’ or poisoned at the time. Went round to the local shop and as soon as I got back, I had another dizzy spell. Applied heat to stomach ache and fell asleep straight after dinner.

Saturday, 22 Jan 2011


Raw, sore stomach ache again. Tried heat, but it did not help. Just feel awful. Oh and it’s cold again, so hip pain in worsened and it hurts even to sit in bed.

Sunday, 23 Jan 2011


Woke up stiff, achy, with painful throat and a headache. Pretty normal day then! Made a concerted effort to rest in hopes it would make me feel a tiny bit better and more able. It didn’t work, but then it never does.

Monday, 10 January 2011

Monday, 10 Jan 2011

Not my cat in not my carpet

Not the best of days and not the worst either. Got 7 hours sleep and was up at 8am, which almost gave me the idea that I could have a productive day, but did not feel well enough to go out and cancelled appointment to go to a group in the afternoon. I know I felt too crap even to write this diary on the day, and now I can’t remember what I did, so it cant have been at all memorable! Did arrange doctor’s appointment for Friday to discuss the Gabapentin.

Tuesday, 11 Jan 2011


Didn’t get to sleep until 4am, but slept until noon. Got my 8 hours then! Cats not terribly pleased to be getting breakfast at lunch time though. Nevertheless, I’d felt particularly bad hip pain even while I was still lying in bed. This didn’t get any better (and probably heralds rain). Also my knees are painful and stiff, clicking badly if I straighten my legs, in the same way as they’d be after a long walk. Thus, yet again, didn’t think it the best idea to grovel on all fours to clean the carpet. It will have to wait again. Was able to do some stuff on computer and watch some TV. On the other hand, just writing this is making my hand hurt again. Put off going to Spanish Circle for yet another month because I didn’t feel up to it.

[A combination of cheap quality fitted carpet (not mine) and a hoover that doesn't work (this is denied) mean that cat hair (my fault, of course) has to be removed by hand, with a brush, on hands and knees. It is ridiculous and torture.]

Wednesday, 12 Jan 2011


Hum mm … hump day and another, where, obviously, I had neither the energy nor the motivation to write this [diary] on the day. Slept from 03:45 to 10:30am, which is still not sufficient to be able to confront the day with any reserves.

Thursday, 13 Jan 2011


Only 5 hours sleep meant I started the day wired and tired and everything just went down hill from there, as there was no way to find either the energy or the motivation to do even the simplest of tasks. Started a few, but finished none, so gave up to watch [loose term for it was on, not that I was really focussed on it] yet more banal TV, and anyway, there wasn’t anything even remotely interesting on. This is no existence, let alone life! Got 3 hours sleep in the evening – fell asleep watching TV – woke up at 10:30pm and wasn’t able to go back to sleep again until 3:30am, despite being too tired to actually do anything.

Friday, 14 Jan 2011


As always when I wake up in the middle of the night and therefore get sleep in more than one block, I woke up feeling as though I hadn’t slept and was done in even before I began. Had to do some photocopying and printing and just this minor exertion and need to be vertical caused me dizziness, nausea, extreme sweating and pronounced shaking. Had an appointment with my doctor. She repeated my prescription for Venlafaxine and prescribed Pregabalin (Lyrica) instead of the Gabapentin. Went to the Post Office. Delivered some forms by hand elsewhere. Got a few items of shopping and collected prescriptions. Walking got slower and slower and more painful. Even shop assistants noticed that I was exhausted. Yet another headache. Hip pain off the scale. Pain in lower legs. Pain in back. Neck needs support because of the pain. Usual symptoms after an outing.

Saturday, 15 Jan 2011


Seven hours sleep – from 3:30am to 10:30am – isn’t terribly deficient, but still woke up beyond tired, with very little energy with which to confront the day. Otherwise [surprisingly after an outing] didn’t feel too bad – that is until I took my medications. Then I began to feel sick and dizzy. Had to get a stool as I couldn’t stand to make dinner. Was asleep by 8:30pm, because I was too exhausted and felt too unwell to do anything else. Will be glad to wean off the Gabapentin, because it has only done harm and no good whatsoever.

Sunday, 16 Jan 2011


Woke up at 1am and couldn’t get back to sleep until 6am. Simply couldn’t get comfortable as hip pain was spreading down and round the top of my thigh with a herpes-like tingling and burning right down to the bone. My knees felt swollen and stuck as well as painful. My lower legs hurt. The skin on my right foot is so painfully sensitive I can’t even put it down on the sheet. It is utter hell. Consequently, I am exhausted again today before I start. 

Monday, 3 January 2011

2011, so far …

It’s still early in the year, certainly, but already, days 2 & 3 have been notable deteriorations from day 1 and this does not really bode well.

To begin with, I’d slept through the New Year celebrations, because basically, I couldn’t be arsed. I felt so crap anyway, as I still had a stomach ache – it still feels like someone kicked me in the lower abdomen - after a painful attack of IBS on the morning of the 31st.

Over the Christmas period, the *price* for enjoying turkey, trimmings, pastry & sweet things (a LOT less of them than most “normal” people will have had) was that I suffered alternate days of constipation and it’s attendant insupportable migraine-like headache and (after curing those) days with the exact opposite, along with the equally unbearable pains and spasms (like labour contractions) of IBS. Of course, I took prescribed medication to solve the IBS attacks, so the next day I wouldn’t be able go again and would need constipation relief, pain relief pills ... Rinse, repeat.

There are only so many hour-long, gut-wrenching bathroom visits one’s body can stand. It left me feeling weak and ill, just as if I’d had serious food poisoning. Only as long as I stick to my boring meat free, dairy free, wheat free, gluten reduced, chemical free (and consequently often flavour free) diet, mostly, can I keep attacks down to a minimum. This means around weekly is most usual. How often did I get these attacks when I lived in Tenerife? Once or twice, that I can remember, in all 16 years and it certainly didn’t ever need medication.

How much of the increase in all of my symptoms is down to the climate in the UK not agreeing with me, the considerably higher levels of pollution; in the air, in a closed and carpeted house, the food, or the numerous additional stresses I live under here, I really can’t say, but it’s VERY hard to deal with, because, all put together; the fibromyalgia pain from head to foot and in every muscle and joint, the chest pains, the (medical) fatigue, the constant ups and downs in the gastro-intestinal department, the ever-present nausea, the constant fog in my brain that makes me feel like I’m getting Alzheimer's, plus dizzy spells, shaking, orthostatic intolerance that has me swaying like a drunk every time I try to stand for more than 30 seconds or so and that mean I often cannot even sit up, leaves me with a quality of life that … Well, it has no quality. It’s hardly even a life.

In the meantime, I’m trying Venlafaxine (after finding that Fluoxetine (Prozac) makes me sweat like a pig) as I’d read Venlafaxine is well-tolerated (and prescribed to treat orthostatic intolerance and postural orthostatic tachycardia syndrome that I suffer badly) and, can help reduce the severity of hot flushes in menopausal women. Apparently, Venlafaxine has a similar effect to amitriptyline, which is what is always first prescribed (off-label) for fibromyalgia (because it’s so cheap) in the UK, but which I suffered really bad side-effects with.

(It’s the serotonin implications that one needs these anti-depressant drugs with fibromyalgia, not simply because one is depressed, although I am, severely, which should hardly be a surprise with the sum total of what I have to deal with.)

In addition, after 2 years of begging, I finally got some medication for pain: Gabapentin. Though, if I were superstitious, I might conclude that fate does not want me to have this, because of the lengths I’ve had to go to to get it:

Once the pain levels became unbearable in the UK, in September 2008, I went to the GP, who prescribed the amitriptyline and referred me to a rheumatologist, who confirmed my diagnosis of fibromyalgia and ME/CFS, but could offer no more in terms of treatment than to tell me to keep taking the amitriptyline. Eventually, I got the prescription changed to fluoxetine (Prozac), but that does nothing for pain and I could see I was really getting nowhere, so I changed GP.

The new one wouldn’t prescribe anything for pain until a specialist recommended it and referred me to the pain management service. In August 2009, I was assessed at one facility, who thought a different facility were better equipped to help me, so I was referred on. I got assessed again in early 2010 and an appointment in the middle of the year, only to be told that they cannot prescribe at all!

After all that, in desperation, I asked the GP for another referral back to the rheumatologist to a) carry out an MRI scan on my constantly painful hip, b) to investigate the severe pain and loss of movement in my neck and c) to see if she would make this “magical” pain drug recommendation to my GP. She did all of those things and I’m currently waiting for a follow-up appointment to find out the results of the MRI that was done just before Xmas and an X-Ray on my neck.

So on December 15th, I went to the GP to see if she’d got those recommendations and finally got a prescription for the Gabapentin. Went to the chemist to find … they didn’t have any, so as I was going for the MRI the following day and wouldn’t have been able to go back again as they asked (a mile walk there and a mile walk back), arranged for them to deliver the gabapentin when it was available.

By December 23rd, it still hadn’t arrived and I was losing all hope of it arriving before Christmas – I was, naively, hoping for it to relive some pain so I could possibly enjoy the holidays – so I walked up to the chemist to chase it, only to discover that they STILL hadn’t had a supply in (snow was blamed) and yet again, was asked if I could come back the next day, Christmas Eve.

I’d specifically wanted to avoid having to go out on Christmas Eve and had done my last bits of shopping on the 23rd, because I didn’t want to repeat the bad flares that exhaustion + cold weather + extra holiday cooking, etc., have caused in previous years. I’d planned to get a taxi home on the 23rd, to try to mitigate the exhaustion, but there weren’t any available, so I’d had to trudge home, in the ice, carrying far more shopping than I could really manage and, consequently dropped exhausted when I got home and spent a sleepless night in terrible pain.

Nevertheless, on Christmas Eve, I trudged back in the ice to the chemist, asked for my prescription, was handed the familiar green paper bag and walked home.

You don’t tend to open the bag in the chemist: you accept the prescription you are handed, on faith. That’s something I won’t be doing ever again! When I got home, I found that it wasn’t the Gabapentin, it contained Fluoxetine. Back in August I’d had to go back and forth to the doctors umpteen times because a prescription went missing. At that time I did NOT have (had not yet made arrangements) for the surgery to send my prescriptions to a chemist, so it was definitely the surgery who “lost” it … So, they must have sent it to the chemist without agreement, because this was it, at the chemist all that time.

So I phoned the chemist to see if they had the prescription for the gabapentin. It had JUST come in, so it hadn’t been there when I’d called earlier. I gave the pharmacist an hour to get it made up and ordered a taxi to take me up there, wait for me while I got the prescription and then bring me home again. Just having to go out again was enough, I couldn’t possibly have walked all that way for a second time in the same day. Of course, it cost an arm and a leg, but I hoped that some pain relief would “relieve” the shock of this extra expenditure.

So, Christmas Day, I started off knackered, I started on a new drug – which gave me a recreational quality, but very unpleasant “high” – and also started on a week of eating all the wrong things. It was a recipe for a bloody disaster, wasn’t it?

When I read the label, I discovered that the gabapentin contains lactose and I’m lactose intolerant. You’d think it would be such a small amount it wouldn’t cause a problem, but I get relevant symptoms as soon as I’ve taken it, so I’m sure that it does and is adding to the increased severity and incidence of the IBS attacks. On the second or third day of taking it, I started getting severe chest pains and tightness. At one point I was lying in bed and I could hardly breathe (and couldn’t move to get help.) Apparently, this is a possible side effect of the Gabapentin and one that I should have sought immediate medical attention for. HOW?

It’s certainly not the first time I’ve had chest pains and whilst I am sure that various drugs have sparked off new episodes, I think these chest pains are all part of the fibromyalgia and ME/CFS. These symptoms; chest pain, shortness of breath, tightness of the chest, palpitations, are also part of the cardiac arrhythmia - ectopic beat (or cardiac ectopy), also known as Premature Ventricular Contraction (PVC) – that was discovered when I had a 24 hour ECG back in October. Among other data, one reads thatIn a PVC, the ventricles contract first, which means that circulation is inefficient.” This makes sense, finally, with my generally low blood pressure, the orthostatic intolerance and low blood volume (that cause blood pooling and pain in my legs). The trouble is, I’m already taking all the medications, supplements and dietary modifications that could help with it.

And, as (amongst other things), mitral valve prolapse (known to be co-morbid with fibromyalgia/me/cfs), magnesium and potassium deficiencies, adrenaline excess, lack of sleep/exhaustion and stress (all also related to / symptoms of fibromyalgia/me/cfs) are cited as possible causes of PVC, it’s all a bit “chicken and egg”. Did the PVC cause the fibro, or did the fibro cause the heart arrhythmia? Will I ever know? I doubt it. A cure? Even more doubtful.

And, so far, I’ve suffered worse pain in the last few days than ever before.

Saturday, the 1st of the month and the year, I managed to check my meagre finances, pay the odd bill and generally “potter” a bit on the internet. Yesterday, I couldn’t even manage that. I woke up too early, from not enough sleep, feeling utterly exhausted. By mid-morning I gave up. I couldn’t sleep, because I’d gone way beyond tired, but I couldn’t do anything productive, so I lay down to half watch some banal TV that I didn’t need to think about in order to follow. Today, I wrote this, but otherwise, it ain’t shaping up to be a much better day. In what way can I see any of these things improving in 2011? Frankly, I can’t.