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| Float before the Bourne Free Parade 2011 |
Friday, 1 Jul 2011
Usual post-outing problems with pain in legs and feet; back hurts badly, I feel feverish, have a sore throat and a severe headache with nausea. In addition, I feel too weak – as well as it being too painful – to sit up, so once more I have to spend the day lying down or at least reclining on the bed with my legs raised. Arms and wrists hurt too. I can just browse and look at pictures, but I cannot concentrate to read, type or do anything actually productive.
Saturday, 2 Jul 2011
Woke up with a bad headache, painful creaking in my neck and my legs are still suffering from Thursday’s outing. Exhausted. Neck pain and stiffness is resisting meds and I feel like I have a hangover (not a drop of alcohol has passed my lips since forever). Getting up to make food, I felt dizzy, sick and light-headed. The pain and stiffness in my neck is now referring down into my left shoulder, making my left arm weak and giving me pins and needles in my arm and hand (this is not the first time, this arm was affected like this for several months once in the past). Couldn’t do anything constructive today either.
Sunday, 3 Jul 2011
Neck has become really painful and uncomfortable again. Hip and leg pain with the burning feeling right down to the bone, has come back. I was exhausted just from making and eating breakfast.
Monday, 4 Jul 2011
Every exertion – however minor, even going to the loo – is making me feel sick and causing me to shake. Each time I stand, I feel faint and overcome with nausea and have to lie down. Neck is grinding painfully.
Tuesday, 5 Jul 2011
Woke up in the early hours with an exhausting and excruciating pain right in the centre of my chest. Couldn’t move. Could feel palpitations that continued, along with some pain and discomfort for most of the day. The fatigue was really crippling. Felt really ill. Had the familiar pain in my lower back (left kidney area) that has always accompanied symptom flares since the time I was rushed to hospital with this pain back in 1995, in Tenerife. The back pain persisted even when I lay down and was acute enough to be completely distracting and make me feel sick. Was so exhausted just from making breakfast that I could not even sit up afterwards. Rested until I had to go out to a dental appointment in the afternoon. Would have preferred not to go out at all while suffering this level of symptoms and, in hindsight, I should have cancelled because the dentist had to stop treatment as I was so unwell and also because the anaesthetic did not take.
Wednesday, 6 Jul 2011
Slept, exhausted, as soon as I got home from the dentist yesterday, but I was awake all night with the pain in my legs from the outing – even though I’d taken taxis at both ends to and from the station because I was so unwell. Now utterly shattered and strung out with all my symptoms flaring.
Thursday, 7 Jul 2011
Couldn’t sleep again all night last night. Assume this is a reaction to the dental anaesthetic, which had contained adrenaline. Dentist had asked me if I’d ever had a reaction to it. I can now say yes. It’s like coke or speed on steroids! Brain is racing and I have a severe headache, which seems to be a likely side-effect. Something else I will need to avoid in future. Also have bad back ache again. Had a counselling session in the afternoon and my mind raced through this and I had trouble focussing or making any sense, so again, in retrospect, I probably should have cancelled.
Friday, 8 Jul 2011
Stiff and in lots of pain after outing yesterday. Should not have attempted walking home, but cannot afford taxis for everything. Also because a thunderstorm has been forecast and the weather has become humid and oppressive again, which always elevates pain levels. However, I slept last night, which was an improvement. Still too ill to do anything except lie down and rest.
Saturday, 9 Jul 2011
Day of the Bourne Free Parade and my first opportunity to do something for mere pleasure in forever. Of course I’m not really up to it, but I was given a seat on a float, so at least I didn’t have to walk. Even so, I was still exhausted after the hour and had to come straight home. Was back by 3pm and fell asleep. Could barely move later to get food. Needed help.
Sunday, 10 Jul 2011
Everything hurts and I am exhausted. It’s a VERY high price to pay just for one hour of enjoyment yesterday. Was not even able to get comfortable lying down.
Monday, 11 Jul 2011
Everything still hurts and it is going to take a long time to shake this level of exhaustion. A very painful IBS attack, with full body spasms, left me with dreadful stomach ache. Pain during the attack was so bad it caused me to cry out. Waves of pain washed over me, making me feel hot, sick and quite faint. Actually, felt as if I might pass out and fall off the loo. Had to hold onto the walls. Still felt very unwell, weak and tired, even after taking a nap.
Tuesday, 12 Jul 2011
Knackered. Neck hurts, shoulders hurt. Left shoulder feels swollen and stiff. Back is in agony. Hips hurt. Legs feel half-dead with pins & needles, knees are very sore and I feel sick. Nevertheless, had to drag myself out to an appointment for Myofascial Release (MFR).
Wednesday, 13 Jul 2011
This time I feel bruised everywhere after the Myofascial Release (MFR) yesterday and, sadly, it has had no positive results. Just did too much, with the journey, when I was already feeling ill. Neck and back hurt badly today, as does hip.
Thursday, 14 Jul 2011
Hip pain is flaring with a vengeance today, which is affecting everything else and making me miserable. Just can’t function – or even think – at all today. Had another very painful IBS attack in the morning, which added to and exacerbated all the other symptoms. Walked to an appointment in town in the afternoon and arrived sweating and unwell. Felt sick on the way and thought I would not make it and would pass out. Was unable to sit comfortably because of the pain. Others witnessed this can could see how bad my symptoms were.
Friday, 15 Jul 2011
Headache; neck, back, hips, arms, hands, knees, legs and feet all in severe pain after outing yesterday. Sore throat and all the usual post-exertional feverishness. Can’t stand – don’t have the energy and am light-headed and unsteady as soon as I try. Feel overwhelmingly sick.
Saturday, 16 Jul 2011
Neck, back and shoulders particularly painful today. Spasms in legs. Stomach ache and headache. Still feel feverish with flu-like symptoms. Feel incredibly unwell. Spent day resting.
Sunday, 17 Jul 2011
Woke up with pain in neck and shoulders, hips, legs, knees and particularly bad I lower back. Utterly fatigued and only able to recline with support.
Monday, 18 July 2011
Crap - in the literal sense - with yet another flare up on the dreaded IBS. Unbelievable pain, whole body spasms and unending “emission” over more than half an hour that left me feeling weak and unwell again. Hip nagging with pain again, so bad that I cannot sit comfortably, even reclining in bed.
Tuesday, 19 Jul 2011
So fatigued today - and I’m sure that yesterday’s IBS attack has had much today with today’s overall symptom increase – that I cannot even recline at any angle and need to lie flat. Feel too weak, feel sick and feel like I will keel over. Not that I can ever sit up, but this is definitely worse than the usual disequilibrium. Feel like a huge weight is pushing me down against the bed and I have no power in any of my muscles. Arms too tired to type. Neck and back hurt.
Wednesday, 20 Jul 2011
Appointment with the Pain Service today, all the way over in Poole, Dorset. Made it clear that none of the distraction techniques they had previously touted do anything whatsoever for my pain. And we agreed that ‘their time would be better spent with others they can help’. Well, obviously, what I really meant was that they’re basically a f*cking waste of my time and energy, but surprisingly, I managed not to say that in those exact words. Besides, the trips to Poole are far too much for me. The irony is clearly lost on them, but the fact of getting to a Pain Service causing pain, just makes it stupid. [Later, when they offered me a place on a course for managing Fibromyalgia – that would have involved daily journeys (way beyond my energy capabilities) and sitting all day, over several days/weeks in a chair (impossible, and I don’t even sit in chairs, at rest, at home), I did spell it out to them very clearly that what they proposed was not suitable for anyone with fibromyalgia, certainly less so for anyone with ME and would amount to deliberate harm and torture. And I told them where to stick it.]
Thursday, 21 Jul 2011
Not enough sleep last night as kept awake by the severe pain, especially in my legs, resulting from the outing to the Pain Service (you see they irony) yesterday. Have a headache and back ache as well as the usual post-exertion flu-like symptoms. Have to lie down and functioning option is not available again. Going out to counselling appointment in the afternoon had a particularly severe physical effect because I started out at such a low level of functioning.
Friday, 22 Jul 2011
Headache. Hips and knees hurt from walking yesterday, but at least I slept for a change – about 14 hours. But I had to go out yet again, this time to the dentist.
Saturday, 23 Jul 2011
Hips and knees hurt after outing yesterday, despite not taking taxis both to and from the station to reduce the exertion. However, my mouth is very sore. This was the treatment that had to be curtailed last time because I was too unwell, so this time I had no choice. My back hurts, and I have extreme fatigue – could hardly stand half way through making breakfast. Rest of day in bed.
Sunday, 24 Jul 2011
Knackered again. Woke up at 2:45am and didn’t sleep again until after 6am. Legs hurt. Headache from lack of sleep and from teeth. Neck pain is particularly bad. Rest of day reclined, supported.
Monday, 25 Jul 2011
Woke up about 4am with a coughing fit and couldn’t get back to sleep again. Excruciating pain in hip. Flu-like symptoms, feverish and snuffly. Exhausted and achy.
Tuesday, 26 Jul 2011
Generally crap with sore throat, headache from constipation and feverishness. Neck hurts, knees and lower legs throbbing with pain even when lying down. Severe nausea. Day written off.
Wednesday, 27 Jul 2011
Sore throat, sneezing, feel like I’m going down with flu. Hands and legs in pain. Had weird dreams last night (more weird than usual) and not great sleep.
Thursday, 28 Jul 2011
Finally went to the loo! Hope this relieves the headache and back ache. Hands and legs hurt. Exhausted.
Friday, 29 Jul 2011
Did I really sleep last night? Feels like I haven’t slept at all. Can’t stop yawning. Feel heavy and weak. Neck, hip, knees and feet hurt after outing for counselling appointment yesterday afternoon. Tried to have an outing to Christchurch, but this proved disastrous and I have to conclude that travel, particularly by bus, is really beyond my abilities. Could hardly walk at all. Had to lie down.
Saturday, 30 Jul 2011
Eventually got to sleep last night, but pain in my hip and down my right leg is off the scale this morning. The skin on my toe joint is still numb, but excruciatingly painful at the same time. Neck and back hurt even more than usual. Flu-like post-exertional malaise symptoms. Took a flu powder and slept all afternoon, as well as all night.
Sunday, 31 Jul 2011
Worse this morning. Prescription meds (Celebrex/Celecoxib) just not having any effect on pain. Pain in neck, back, hip, knees, legs and feet all agony. Hands and wrists swollen, painful and too weak to lift a cup. Have a cough that will not stop.
