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

Monday, 25 April 2011

Monday, 25 Apr 2011

Yesterday couldn’t keep awake and felt like I was going down with something (flu-like – usual post-exertional malaise). Woke up today aching all over, sore throat, splitting, feverish headache, swollen glands and a COLD SORE. Couldn’t stay awake and fell asleep after I’d struggled with just two hours of semi-consciousness. Woke up for lunch, then went back to sleep again in the afternoon. Woke for a short time in the early evening, but was ready for bed again by 8pm. Felt really unwell, so being asleep was really the only way I could cope with it.

Tuesday, 26 Apr 2011

Slept all night last night, despite sleeping for much of the day yesterday and the day before, but still feel flattened and unwell. Ache and hurt all over and still got the sore throat and feverish headache that always come with Herpes (Cold Sore). Had trouble getting comfortable – legs and foot tender and joints all felt swollen and wanted clicking to release them. Despite this was able to sleep all night.

Wednesday, 27 Apr 2011

Woke up at around 10am – which is perfect for me – but feeling exhausted. Once more I have the sore throat, swollen glands and feverish headache – everything I used to get with tonsillitis, except the pus on the tonsils. Feel generally unwell like with the flu. Ache all over. Joints still feel swollen. Hands tender. Feel nauseas and shaky as soon as I stand up. BUT, I had an appointment with the GP in the afternoon, so was obliged to drag myself out feeling like this. Worst experience of the day was in the Post Office (after I’d been to the doctor). Only one window was open and the employee behind it was chatting, endlessly, to a friend. Even though there was no queue, other than myself (the only reason I even dared risk this), she completely ignored me and the extra wait on the feet caused immense pain in my lower legs.

Thursday, 28 Apr 2011

Ultimate cruel irony: pain meds today are not working against the extreme pain caused by having had to go out yesterday to get my pain meds! Woke up with pain in my knees and lower legs, as is normal after any outing, but I do think it has been made much worse by that standing incident in the Post Office. It is a classic case of society causing disablement. Really need someone to do these jobs for me, or I need someone to push me around in a wheelchair so that I can visit these places. And, it isn’t lunch time yet, but I’m exhausted already, strung out; my eyes are hurting badly, I’m unable to concentrate and have yet another headache. Despite which I have to drag myself out once more for a counselling appointment in the late afternoon that I won’t be able to concentrate at either.

Friday, 29 Apr 2011

Post-exertional crash after the succession of outings is so bad, I couldn’t even update my diary for this day.

Saturday, 30 Apr 2011

Dreadful backache today. Woke up stiffer than usual and my hands were swollen and my rings tight. Joints also felt swollen all over and were painful. Any movement is excruciating.

Sunday, 1 May 2011

Everything feels swollen again this morning, especially knees and extremities. Weather dull. Hip pain was bad again. Back pain.

Monday, 18 April 2011

Monday, 18 Apr 2011

The better for deciding to rest yesterday with no items assigned from my to-do list. Pain and fatigue levels were tolerable today. With careful pacing, I could keep them at this level, PROVIDED I’m permitted to keep activity and stress levels down. This, of course, is impossible. The moment mother came home, the whinging – about matters that were of no concern or application to me – started. She constantly pushed open the bedroom door and interrupted my rest to tell me something I did not need to know and was of no interest to me. Where I had felt quite content, I began to feel incredibly stressed and began to develop yet another headache. This sounds like nothing here, but she is impossible to ignore, will not stop and it’s like some sort of drip, drip, drip torture.

Tuesday, 19 Apr 2011

Neck pain got bad again once pain relief effects ran out. It was not improved by sleep. Stress and melodrama from mother is definitely not helping.

Wednesday, 20 Apr 2011

Had trouble getting comfortable in bed last night. Everything feels tender and bruised. Hip and leg pain particularly troubling, preventing me from finding a relaxing position in order to be able to fall asleep. Wrists, hands and feet all feel weak and painful today too.

Thursday, 21 Apr 2011

Incessant coughing with chest pains – coincides with weather warning for asthma. Glands swollen in neck and sore throat. Pain in hands still disabling. Legs and feet still painful. Everything is an effort, physically due to the pain lack of energy. Counselling appointment in the afternoon, so I had to walk there and sit for a long time. Can only hope that the benefits of the counselling will outweigh, but just getting there does cause considerable pain and fatigue in the following days.

Friday, 22 Apr 2011

Didn’t get to sleep until after 4am because of the pain caused by the outing yesterday. Cats still wanted breakfast at 9am, so I wasn’t able to get enough sleep. Spent the day doing nothing, slowly, as I was too tired and strung out even to be able to move, much less concentrate.

Saturday, 23 Apr 2011

Slept OK last night, once I’d remembered meds at about 1am, but still wasn’t able to get enough sleep to make a difference. Whilst pain is a little better today, I’m still exhausted and extremely woozy.

Sunday, 24 Apr 2011

Woke up early – why, on a Sunday? This means my meagre energy will run out that much earlier. Hip is uncomfortable. Bad headache with disturbed vision.

Monday, 11 April 2011

Monday, 11 Apr 2011

Bristol Dental Hospital
cc-by-sa/2.0 - © Thomas Nugent -

Had to be up at 5:45am – when anything before 10am is way too early. However, I had an appointment at 10:20am at the Bristol Dental Hospital, which is THE ONLY NHS dental hospital facility for the entire of the south of England, 80 miles away in Bristol. Requiring someone with myalgic encephalomyelitis (ME) to make this journey for any appointment is entirely unreasonable, but what choice did I have? They gave me no choice either, other than the morning appointment and my dentist wouldn’t treat me without me seeing them. Snookered. 

So I caught the 6.51 train and, to be fair, made it in good time and with minimal stress, but there is no doubt that it made me utterly and totally exhausted. It was particularly difficult to deal with and I certainly couldn’t cope with understanding what was said at the appointment or properly advocating for myself. By the end of the day, I could hardly walk and the pain in my legs and feet was unbearable. Fortunately, I had somewhere to stay nearby (without this, frankly, I couldn’t have gone to this appointment at all), but got there and crashed, falling asleep on the sofa. Began to get a migraine type headache in the afternoon, but just had to hope it wouldn't develop as my hosts had organised for us to eat out.

Tuesday, 12 Apr 2011

Definitely did too much yesterday. The impact of the pain was reduced by getting a good 12 hours sleep, but the post-exertional malaise, sore throat, and flu-like symptoms were as bad as they ever get. The migraine came with extreme nausea and a tight band around my head. Couldn’t stand to read, nor look at a computer screen. Got up to get water to take my medication, but had to lie down again immediately and hold my head to stop the pain. Slept for most of the day, on and off. Got up to eat some dinner, but went straight back to bed again.

Wednesday, 13 Apr 2011

Still got the migraine that began developing on Monday. Had to take a Beechams, plus 2 more Paracetamol in addition to the Celebrex, but dare not take more or anything else. Cannot shake this, nor the accompanying nausea. Feel too ill to sit up again and cannot read, look at the computer or even TV. Slept for a short time during the day, but mostly just had to lie flat and try not to be too aware of my symptoms. Back back and hips were so painful, there was little chance of that.

Thursday, 14 Apr 2011

Woke up at 4am this morning after the last 2 days resting. Was taken out to lunch and shopping, but this was really too much for me and I couldn’t enjoy it, but didn’t like to complain.

Friday, 15 Apr 2011

Knees hurt dreadfully today and am tired from such a – relatively – long day out yesterday. To be expected after a day out, though less than usual as I’d been taken out by car. Taken out to do yet more shopping this morning, which would have been OK, if we hadn’t been standing and waiting around. This began the pain in my legs again, so I was glad to lie down again in the afternoon.

Saturday, 16 Apr 2011

Travelled home from Bristol on the train. Neck and knees were painful this morning. Neck, back and shoulders suffered most from trying to manage my bag (basically, I can't manage). Had to walk home from the station, which taught me that I would never be able to manage a shopping trolley too. Got in and crashed and didn’t even have the energy to unpack my bag.

Sunday, 17 Apr 2011

Back to normal: pain and stiffness everywhere and had physical difficulty getting out of bed and getting to the kitchen. Headache, sore throat and post-exertional flu-like feverishness. Pain in legs bad again after so much standing and sitting, as well as in hip, neck and shoulders. Joints clicking painfully again.

Monday, 4 April 2011

Monday, 4 Apr 2011

Still suffering after yesterday’s outing. Had only been standing for a few moments when the pain in my ankles and lower legs started. The now ever-present stabbing pain in my right hip was cranked up a gear and then a different stabbing begin in my already swollen and stiff knees. At the same time my head began to ache: a cross between stabbing and throbbing and, an overwhelming wave of sickness rose up and over me, bringing with it an even more overwhelming immediate need to sit or lie down – which I was obliged to do for the whole of the rest of the day.

Tuesday, 5 Apr 2011

First day of taking Celebrex [Celecoxib]. Made me tired, but did significantly reduce pain so that I was reasonably comfortable reclining. I sense, however, that this benefit will only work so long as I don’t do anything. In any case, I was too subdued (read: drugged) to concentrate on any activity.

Wednesday, 6 Apr 2011

Had a really bad, throbbing headache (migraine) this morning. Felt sick and could not stand bright light. Had to close the curtains, lie down hold my head. Could not take anything for it as I’d already taken the Celebrex, however, that wasn’t working on the pain (in my head or anywhere else) today either. Spent the morning lying down because of this headache. Spent the afternoon being unable to get up. By early evening I couldn’t even manage being reclined and had to lie completely flat and totally gave up on the day. 

Thursday, 7 Apr 2011

Not enough sleep. Pain and notable weakness in both hands and feet this morning. Left knee was very swollen and stiff last night and I could not click to release it, so the pain remained constant. Pain and burning in hip, despite medication. Counselling session in the afternoon was good, but lots of homework (that will be impossible to manage). While I was out, had to go to the station to buy my train ticket for next Monday. Walked home because it was nice weather, but I shouldn’t have done this as the pain and exhaustion afterwards was extreme. Exhaustion affected my balance so much I was bumping into walls. Have bruised and hurt my right arm and shoulder on wall in hallway.

Friday, 8 Apr 2011

Neck, back, hips, knees and feet all sore from yesterday’s walk. Bad headache again. Sore throat and feverishness – the usual post-exertional flu-like symptoms of malaise.

Saturday, 9 Apr 2011

Not too bad today, but I’m making sure I don’t take advantage of that to overdo anything. Just hip and neck pain at a bothersome level. 

Sunday, 10 Apr 2011

Despite sleeping reasonably well, despite being careful yesterday, woke up this morning with back ache so bad I thought it was broken; severe neck pain and hip pain and then I started going dizzy and getting chest pains as soon as I stood up. Can’t win.

A morning ritual

I’d only been standing for a few moments when the pain started in my ankles and lower legs – from the blood pooling as my heart is unable to effectively pump it upward. The now ever-present stabbing pain in my right hip is cranked up a gear and then a different stabbing began in my already swollen and stiff feeling knees. At the same time, my head began to ache; a cross between stabbing and throbbing, with a bit of compression thrown in for good measure and an overwhelming wave of sickness rose up and over me, bringing with it an even more overwhelming immediate need to sit or lie down.

The discomfort is so severe, it causes me to catch my breath and I have to concentrate hard to hold on just long enough to get my cup of coffee. The pain in my neck and back were already severe, but as I held the cup under the spout, my arm and shoulder started to go weak and hurt. It seems like it takes an eternity. It feels like torture. These days I use cups and saucers, not because I’m posh, but because after I’ve had to stand to get the coffee, I shake too much to carry it without spilling some. My balance is off, so I walk into walls and doorways and the increasing weakness in my arms makes even the smallest items too heavy.

Now that I’m lying down again, I’m having difficulty focusing my eyes, focusing my thoughts, composing these words – but I want to get it down immediately so that I capture the true horror – and I’m shaking even more from the exertion. Not a particularly marked shake, but still a discernable tremor in my hands. More apparent, to me, is the feeling that my brain is “shaking” – I assume this is actually pulsations as my heart overworks to get blood to my brain – inside my head, making me feel all the more sick and unsteady.

Yesterday morning it was sunny and so I decided to walk round to the local shop and get a sandwich for lunch. It’s only about 400-500 yards, but I get about a quarter of the way these days and wish I hadn’t started. It feels like climbing Everest: it seems to take forever, but I push myself on reluctantly, every step jarring my neck and sending sharp stabbing pains into my hip. I always get home exhausted. Yesterday was no exception. I ate my lunch. I didn’t even have the energy to eat the treats I’d bought myself too before I had to lie down, but I was in too much pain and beyond tired to be able to sleep, so I just had to lie there and try to find a comfortable enough position.

My neck and back hurt too much to sit up or even recline at a low angle. I had to be flat enough with just one pillow to support my neck and try to lie on my side so that I can still, just, watch TV on the Laptop, albeit that it appears at a 90 degree angle from true. It doesn’t really matter what’s on. But the pain in my legs has become so severe that I can’t lie like that. The pain in my knees, which feel swollen and almost like bruised, mean I cannot rest one leg on top of the other. The pain in my foot is so bad that I can’t bear to even lay that on the bedclothes. I try another pillow, another angle, dangling it off the side … nothing works. If I find something acceptable for my foot, it pulls on my hip joint and makes that even more painful. The painkillers I’ve taken make no difference. So I spend the rest of the day in a sort of trance, just trying to stay in a position that doesn’t hurt too much. I’m still not aware of what was on TV.

At about 8.30 p.m., I get up to get a cup of tea. I feel too ill and can’t stand long enough to get food, so I don’t bother. I come back to bed, take my medication, which means I will be able to get some sleep. That was my whole day.

Saturday, 2 April 2011

Laziness versus Pacing

Laziness versus Pacing

It suddenly struck me when I saw this LOLcat image that this is how others view us. Pacing: stopping well short of what you might be able to do to avoid exhaustion and flares is extremely important to sufferers of fibromyalgia and ME/CFS. My occupational therapist at the Pain Management Centre had spoken to me about it, saying I should aim to do half or two-thirds of what I think I can manage and gradually work up towards doing more. [No I shouldn't, but ...]

She says I need to pace better (how, exactly?) when I mention the 1 mile walk that is too much for me, but for which there is no alternative as it’s a mile to town, a mile to the bus stop, a mile to the train station, a mile to the doctors’ surgery … This means I can only go out once in a while, for essential appointments, which send me hurtling into mega-flares, then rest for days / weeks, rinse repeat.

All of the rest of the time, at home, I’m either too exhausted to do anything, or I’m pacing well below my capabilities in order to save up some energy for the next outing; not fun ones, mostly just hospital and doctor’s visits.

This latter is called “laying around” to anyone else. They think it’s laziness.

They should try to live a day with the amount of pain and fatigue we have: they wouldn’t be pacing, they’d be demanding the euthanasia pills!