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, 7 Feb 2011
Could not move this morning. Pain everywhere. Was tossing and turning in the night, trying to get comfortable, but every position hurt. Could not lie on hip (R/H), but could not lie on left as I could not place right leg on top of left because of pain in the left knee, nor place the left face of right foot on the bed because of the pain and soreness on the toe joint. Can hardly straighten up to walk. Hip, neck, back and legs are all in agony again. All joints are clicking and banging painfully. It hurts to move even to get out of bed or to rearrange and position myself in bed. It hurts to lift the laptop from bed to lap. It hurts to have laptop touching my legs and stomach. And I have a headache. By 3pm I could do no more: I mean I could not even manage a reclining position and had to lie flat to half-watch TV. Fell asleep in the early evening, but slept through the night as absolutely exhausted from the pain.
Tuesday, 8 Feb 2011
Woke up even stiffer today and could hardly shuffle, let alone walk and keeping balance was difficult. Left shoulder is frozen – it had been years ago in Tenerife, when my left arm was numb for months – with pain and weakness back in both wrists and hands. Could not even open a jar of honey (not even a new one), nor carry a cup and saucer. Pain in hip and legs still bad. Still hurts to have laptop on legs / stomach. Now also hurts to type or operate mouse. Starting to get deep pain in left kidney area again and to feel sick. Made lunch and was almost too knackered to eat it. Want to hoover the floor, but dare not expend the energy. It’s sunny and I need to go the Post Office and I would like to go for a walk, but I know that this would be too much for me today. There is a shaking storm going on in my brain and I can feel my pulse in my head constantly. I keep overheating for no good reason, feel as through I have a fever and am coming down with flu again – post-exertional malaise, this time without recent exertion.
Wednesday, 9 February 2011
Had real trouble waking and moving this morning and felt like I hadn’t slept. Pain in hip is radiating down into the top of thigh, burning a ‘fizzing’ feverishly. Both thigh muscles are tight in spasm. Knees sore. Joints clicking and painful. Everything sore: throat, muscles, skin, et al. Feverish headache, neck pain and nausea. Dull pain in kidney again. Once again dizzy and feel sick and have to lie down again immediately if I even try to stand up. Once again, can only accomplish small tasks that can be accomplished lying flat (which, obviously, is not much).
Thursday, 10 Feb 2011
All the usual aches and pains and feverishness, plus mother bitching about what she ‘wants’ and says she doesn’t care that those things make life harder for me. She’s fed up with the ‘inconvenience’ of my ‘illness’. Then she said the latter is not the case, but her actions tell another story. [She refuses to believe I’m ill.] As usual, it would be hard to prove whether she was being ignorant or malicious, but whichever it is, the stress this adds for me only makes matters worse.
Friday, 11 Feb 2011
Accumulation of the last few days’ physical downs, plus the emotional stresses made this a day where I was unable to achieve anything.
Saturday, 12 Feb 2011
First day in forever that I woke up feeling half-human. All the usual aches and pains, and tired, as ever, but felt better than the usual really unwell. Of course it didn’t last! Standing for only a minute or so to throw some ingredients into a pan for lunch (plus the walk to the kitchen and back) were too much. Enough to reactivate the pain in my hip, pooling in my lower legs, breathlessness, headache and the usual overwhelming need to sit back down (before I fall down). By mid-afternoon, I had to lie flat and fell asleep. Woke up with a sore throat, swollen glands, feverish headache, aches, herpetic tingles ...
Sunday, 13 Feb 2011
Had to take constipation relief last night as I’d not been to the loo for a few days and the resultant headache was mounting. Reacted badly to that medication with a dreadful stomach ache. That had not happened previously. Today I couldn’t wake up and my joints are clicking painfully. Already feel exhausted before the day starts. Decide to rest so that maybe I will recoup some energy.
Monday, 14 Feb 2011
Cold, achy and joints clicking painfully again, with a sore throat. Walk to kitchen to make breakfast was enough to provoke pain in hip and lower legs again. Just that was enough to exhaust me for the day.
Tuesday, 15 Feb 2011
Woke up aching and snuffling again, with a sore throat like I’m coming down with flu or tonsillitis. Glands in neck sore and swollen again. Joints all clicking painfully again. Cold again in the house.
Wednesday, 16 Feb 2011
Today I was offered
Cognitive Behavioural Therapy (CBT). I was most restrained and avoided swear words when turning the useless sh*t down. Not a good day. I’d woken up with such terrible pain and burning in my legs and such utter physical exhaustion that I absolutely could not move my limbs for some considerable time. My first thought on waking was that I really need to lie down. Of course, I was already lying down.
Thursday, 17 Feb 2011
At one point during the night I was lying down with my eyes closed and could feel, very markedly, every pulsation, in time with my heartbeat, running up through my neck and head. You know the images you see when your eyes are closed, well those were ‘jumping’ in time with the pulsations, just like the picture on and old analogue TV, when the horizontal hold went squiffy. In addition, I felt dizzy and nauseas. You know, the sort of dizzy and nauseas that you normally lie down to escape and recover from. Except, of course, I was already lying down, so there was no escape from the awful feeling until I eventually fell asleep again. This morning I woke with a stabbing headache and felt sick and shaky as soon as I moved. I have sensations of ‘brain shakes’ often, but never quite this bad. I stood for a minute or so, but immediately got severe pains in my lower legs and ankles, so had to lie down and elevate them. Woke with pain and burning in legs anyway, with the now customary painful, clicking joints and sore throat.
Friday, 18 Feb 2011
Woke up with feverish headache, sore throat and catarrh, along with aching muscles and sore joints. And very cold again. By lunch time severely sweating and overheating again. Got up only a minute or so at a time to print some pages and prepare 2 small packages for the Post Office and became breathless, shaking and feeling uncontrollably sick. Needed to lie down down again to recover from this. [Yes, I would be physically sick otherwise.] Must go to the Post Office as I have a hospital appointment on Monday [And couldn’t do both on the same day and can’t do outings on consecutive days either. And need to rest before the journey to the hospital …] Had to sit down half way through shower and was overcome with light-headedness and nausea. Same happened again when I got to Post Office counter, when I almost lost it and keeled over. Got home exhausted and had to lie down again, but then couldn’t move again for hours. Couldn’t even straighten up to walk to the loo and felt too exhausted and sick even to sit up.
Saturday, 19 Feb 2011
Woke up with the feverish headache, sore throat and catarrh again. The only thing I managed was some cooking a couple of minutes at a time, with rests to lie down in between. Tried to peel some apples, but did not have enough power in my wrists and the attempt was excruciatingly painful. Had to get help as was not able to complete the task. Even tried doing it sitting in bed, but still could not manage it. Managed nothing else today.
Sunday, 20 Feb 2011
Been having really bad dreams again. Last one, fighting a man who was trying to attack me. Woke up feeling like I’d been fighting all night. Even worse feverish headache, sore throat and catarrh again this morning, along with hard and swollen glands in neck, just as I used to get with tonsillitis [Had tonsillitis probably every other week when I was about 11-12, with swollen glands and constant, repetitive courses of antibiotics. Have since read that many children with ME present with this history, so this is probably where it began. I doubt the antibiotics helped my immune system.] Kept going hot and cold all day, as if I have a fever or flu.
Monday, 21 Feb 2011
Same old, same old … Woke up with feverishness again. Shaky and nauseas as soon as I move to do anything. Neck hurting more than usual. Today, I had an appointment with the Rheumatologist. Decided to try the bus to get to the hospital. Sensibly took a soft collar to help avoid more neck pain. Walk to bus stop was too far and the seat in the bus shelter was more of a ledge and entirely unsuitable and just added to my discomfort. Even turning my head to be able to cross roads on the way to the bus stop or look for the bus approaching was unbearably painful and each time caused a severe shooting pain accompanied by more nausea. The long, jolting bus ride was tortuous. However, expecting the usual “we found nothing” result, I was quite shocked by the diagnosis of cervical spondylosis (arthritis of the spine). Mind you, because of ME and my usual issues with drug reactions, this will be difficult, if not impossible to treat.
Tuesday, 22 Feb 2011
Despite having been out yesterday, I went out again today to a talk to learn about myofascial release, in hopes that this may be able to help with my issues. The rheumatologist yesterday had said that I need to try to get the fibromyalgia under control in order to reduce the pain from the arthritis (not sure how). It was a good afternoon, but involved another, long, taxing journey by bus.
Wednesday, 23 Feb 2011
The result of two outings on the previous days – despite being relatively short and in any case merely for hospital and therapeutic reasons – was THE most excruciating pain all over, which showed no signs of abating all day. As well as unbelievable neck pain from the jolting of the bus journeys, all my joints were clicking painfully, my skin feels tender and bruised everywhere and my muscles as if strained. Was unable to get up even to make food as could not moved for the severe fatigue. Had to take a nap in the afternoon.
Thursday, 24 Feb 2011
Still feel sore and bruised all over from the outings. My joints all feel like they’re assembled wrong and I am still very fatigued – I mean more than normal. Unable to concentrate on anything. Staying on bed, as usual.
Friday, 25 Feb 2011
Feel absolute crap again. Still really sore overall and woke up with especially bad neck pain that continued throughout the day, making it once more impossible to sit up without cushions to support my neck to mitigate the pain, which does not respond to painkillers.
Saturday, 26 Feb 2011
Neck pain is not improving and is only partially relieved by immobilising it with neck cushions. Any movement, even light stretching, just causes an increase in the pain. My eyes are painful again and I am still more fatigued that usual. Pushed myself to fill in application for counselling.
Sunday, 27 Feb 2011
The neck pain still just won’t let up. I’ve tried gentle movements (exercises, stretches), but that currently just makes it worse. I’ve tried immobilising it, which does help, but only while I’m reclining – it doesn’t give any lasting relief and means starting again from scratch every time I’ve had to move to go to the loo, whatever. Maybe amputation would help? I am so tired and yawning today, it’s as if I hadn’t slept. Cannot concentrate at all.
Monday, 28 Feb 2011
Tired and have a headache because I hadn’t been able to get to sleep until 3-4 am. Neck pain still troublesome and have pain in left kidney area that always happens whenever I’m short on sleep (most of the time). Had to take Balu to the vet this afternoon. Mitigated walking by taking the bus there and taxi back, but the outing was still tiring and has caused much more pain my legs, back, arms, shoulders, hip … Got home, lay down and was unable to get up again because of the pain and stiffness. Couldn’t even find energy to think or even watch TV.
