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

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. 

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!

Monday, 28 March 2011

Monday, 28 Mar 2011

Slept better last night with both Lyrica [Pregabalin] and Melatonin (supplement), but pain levels still high in neck, back, legs, feet and wrists. Headache is intermittent [that’s a rare and distinct improvement]. On Jan 8th, I wrote that I wanted to change the bed, clean my room and sort my wardrobe. I am YET to do this and haven’t yet had a day where I could stand or had the energy to do so. And today isn’t going to be that day either. Whilst I'm able to accept that this is just the way it is and it would not worry me alone that the mess is, inevitably, building up, once more I am being put under pressure, because my mother makes a point of being disapproving. She isn’t able to – or does not wish to – comprehend that I simply cannot do what she wants, when she wants, just because she wants it. And making that obvious, constantly, does nothing whatsoever to help.

Tuesday, 29 Mar 2011

Woke up in pain from head to toe. Cannot stop yawning. Otherwise, didn’t start off as such a bad day, relatively. Walked round to the local Post Office in the afternoon and, once again, felt dizzy and had trouble keeping balance and walking in a straight line. Fell asleep as soon as I got home.

Wednesday, 30 Mar 2011

Woke too early, too tired to concentrate. Pain in neck, hip and legs very bad again, made worse because of humidity (rain). Stiffness and shooting pains – random and in joints and / or muscles. Snuffles and sore throat and general feverishness as if I was going down with something, like flu. This is getting more and more frequent and although there are (as usual) no outward signs, I feel so unwell that all I can do is lie down to control it and wait for it to improve (hopefully). By mid-afternoon, I was even unable to recline. Constipated again! Don’t seem to have been able to get back to any normal (normal for me anyway) routine since Christmas.

Thursday, 31 Mar 2011

Woke up tired, achy and just feeling unwell – headache, feeling sick and queasy, feverish and trembling (that brain shaking in the head feeling), all of which is difficult to describe, but I can only cope with if I lie down. Once again, after a couple of days of being constipated, a massive attack of IBS this morning. Pain wasn’t quite as bad this time, but still required me to pant / breathe to deal with the strong contractions, like someone giving birth. Waves of malaise – which I can only say feel like waves of poison in my body – made me feel worse. At a couple of points, my vision narrowed in and I began to grey out and I felt myself swaying as I almost, momentarily, lost consciousness. As ever, the whole ordeal (onslaught, genuinely felt like I’d been attacked), left me feeling weak, tired and utterly wiped out. And, despite all this, had to go out to a counselling appointment in the afternoon.

Friday, 1 Apr 2011

Rough night with pain – from outing yesterday – worse in neck, shoulders and upper back, but as ever, also notably increased in hip, knees and feet. Also exhausted and would prefer to spend the day resting to avoid a crash, but have a doctor’s appointment, so must go out again. Discussed medication and got repeat of Venlafaxine and Lyrica  [Pregabalin] – I hate it, it does zero for pain and the side effects are intolerable, but I have to show that I’ve given it long enough – plus a 2 week trial of Celebrex [Celecoxib], but if this is continued, then we also have to add protection against gastrointestinal complications (ulcers, I guess). If there is one thing that seems wrong on every level, it’s taking one drug to prevent harm from another drug. [Still, GP wouldn’t prescribe anything whatsoever until Rheumatologist made suggestions and, this is working down her list.] We had also discussed the idea of injections for the spondylosis, but agreed that will not happen, on the premise that it would be hard to reverse if I had a bad reaction / side effects from those.

Saturday, 2 Apr 2011

Everything hurts. Neck worst and I’m exhausted. Bad night with vivid dreams again. Can’t stand at all. Pooling in legs with accompanying pain in my ankles and an overwhelming sick feeling as soon as I do. Spent entire day reclining or lying down, unable even to concentrate on TV.

Sunday, 3 Apr 2011

Woke up too early again – because of pain. Ran out of energy entirely by mid-day. Another day written off. Made it as far as the shop to get a sandwich (always hope a walk improves circulation), but even that short walk jarred my neck and hip and sent me horizontal to recover from the exertion. Leg pain really severe.

Monday, 21 March 2011

Monday, 21 Mar 2011

Eating breakfast, my entire face hurt. Stiff, painful and tired when I woke up. Although pain generally helped by Voltarol (Diclofenac) gel, there’s a sharp, stabbing pain in my left wrist if I try to use it, even to try to type even a few words. I also have a severe headache and a sore throat again. Put one load of laundry in the washing machine and a packet mix into the bread machine and just these minor activities in combination with making breakfast (cereal) and going to the loo (not even washing) have caused me to shake from the “exertion”. This is along with extreme nausea and overheating with excessive sweating. Had to lie down with the fan on for most of the rest of the day to try to subdue this.

Tuesday, 22 Mar 2011

Had trouble getting to sleep last night. Still woke early this morning: too early, not enough sleep to be functional and feel so tired that I’m already fighting to stay awake and semi-upright. Woke with headache, backache, neck ache and a burning, aching, twinging in my hip, thigh and right down my right leg. Ankles and feet also painful. Then I got a sharp, shooting pain in my left chest – severe enough to require breathing to control it. Pain in the wrist still stabbing too, which is made worse if I try to use it, which is pretty much any movement at all. Had an appointment with Dorset Pain Management Service today. Walk to the station was excruciating: sharp pain in my hip every time I put my foot to the floor. Arrived sweating and fatigued, balance gone and unable to walk straight. Noticed that I was listing towards the edge of the platform and staggered involuntarily. [This has to place me in danger from falling, as well as from attack / abuse from people who will perceive me as drunk.] On the plus side, the meeting with Mrs Das was good: she does not think I need psych help [Well, nor did I for pain / fibromyalgia / ME]. She says I’m balanced and have my life in order! 

Wednesday, 23 Mar 2011

Pain, especially in my legs, kept me awake last night and got me up early this morning. [As is always the case when I’ve had to go out and have walked any distance.] Possibly the worst pain I have ever experienced after an outing and certainly the most generalised. Impossible to describe, but overall aching, with a feeling that every single joint is swollen and every single muscle is pulled, with random shooting pains in muscles, joints and head. Headache, sore throat, feverishness. Back and neck are both in major pain. [You’re not missing the irony here that this was from an outing to a Pain Management Clinic?] Today had an appointment for a Counselling Assessment (it wouldn’t have been my choice to have them on consecutive days), so I got a taxi there. Appointment went well, but was emotionally very tiring. Walked back to the town centre, but this was really too far for me and served to wipe me out entirely. Once I got home, I ceased up entirely.

Thursday, 24 Mar 2011

Woke up too early – because of the pain – after dreaming too vividly during what seemed to be very light and non-restorative sleep. Headache, overall pain, burning aching and stiffness. Feel too tired to undertake any activity today. Even just standing up makes me dizzy, exhausted and nauseas. Was still dizzy and nauseas lying down. Had to make myself a nest of pillows [more like a padded cell] because I felt like I was falling, even when I was lying flat and wasn’t moving. Couldn’t even watch TV, because the moving pictures gave me a headache and made me feel sea-sick. Went to sleep in the afternoon and didn’t wake up until 7:30pm, but still managed to sleep through the night. Pain levels remained high, but I was so exhausted, I was able to sleep through them. Also had feverishness and a sore throat – took a flu powder to hopefully help reduce these symptoms.

Friday, 25 Mar 2011

All the usual aches and stiffness and woke up too early, too tired, yet again. One source of additional discomfort is that I have become constipated again. Considering the amount of fruit and vegetables I eat, plus psyllium husk supplements, this is a considerable worry, as well as a major discomfort. As well as generating more headaches, I am always aware of an increase in overall aching and stiffness, as though my body is harbouring poison (toxins), which, I guess, is pretty much what it is doing. Became too tired to do anything even remotely constructive quite early in the day.

Saturday, 26 Mar 2011

Didn’t get to sleep until 5am. Was very tired and strung out, but just did not feel sleepy. Only went to sleep in the end, because I was utterly exhausted. Woke up around 10am, which is not enough sleep, in a lot of pain. From experience, I know that I could crash very painfully and quickly once I have reached this state, so I know it’s important that I pace myself very carefully to avoid a long-term crash. Had another mega IBS attack. [Always follows a few days of constipation, which is why I work very hard to avoid it and the boom and bust cycle.] At one point I nearly blacked out – my vision certainly greyed out and I became light-headed – from the severe pain.

Sunday, 27 Mar 2011

Feel like I’ve got a fever with gripping headache, sore throat, going hot and cold, heightened aches and pains (in BOTH hips and burning in thighs), light-headed, dizzy and unsteady on standing, with extreme nausea and shaking, as if from exertion. Last night was drifting in and out of consciousness, with waves of overheating, pain and nausea. Had to breathe to keep control of it, but it was so bad, I really thought I might need emergency help. Feel really unwell today. Had to get on the floor in the kitchen, because I nearly blacked out again. Light-headedness continued all day. Could not sit up because of this level of sickness and because of severe pain in back and legs.

Monday, 14 March 2011

Monday, 14 Mar 2011

Woke early, but feeling like it was mid-day – this is probably because of the mornings getting lighter, so I must see about doing more to black out the room, or I’ll spend the whole summer with severe sleep problems again. Also had very vivid, active dreams again, so I woke up feeling physically tired from all the “exertion”. Very achy, especially in my knees. Severe burning pain in hip and thigh again. Had to take the cat back to the vet again for a check up and hurt myself badly trying to carry him on my back. Had to ask for a glass of water in the vet as I felt so unwell. Severe neck pain. Was unable to move once I got home.

Tuesday, 15 Mar 2011

Woke up early again. Pain and numbness in hands and feet. Neck pain WAY off the scale from yesterday’s exertion. Today was the first day of taking Lyrica [Pregabalin] in the day time. It made me totally spaced out and unable to stand up. Had to spend the entire day laying down because of this and because of post-exertional malaise. Fell asleep in the afternoon and did not wake up until early evening. Reaction is not quite as bad as it had been with Gabapentin, but I still don’t see the point of spending life as a zombie, for little or no benefits. Pain in my legs is still utterly unbearable and this seems to be an effect of the Lyrica reported by others (which again, seems to render it counter-productive).

Wednesday, 16 Mar 2011

Woke up early again, stiff and with pain and numbness in my hands and feet again. Once more, felt knackered before I start – I mean, I always foo, but more so than normal – and before I took the Lyrica again in the morning. Once I had taken it, I was a non-functioning zombie yet again with no choice but to lie down and hope to stay awake until a reasonable time. Pain and stiffness in my knees and ankles at night was particularly bad. The Lyrica also seems to be making me constipated again and has increased stomach pain.

Thursday, 17 Mar 2011

Another crappy day: Woke up tired and stiff, but wasn’t so bad until I took Lyrica. Since then I can hardly stay awake and am very light-headed, staggering and swaying whenever I get up. Pain in neck and shoulders is still unbearable except when relined, supported. Tried to open a bottle of vinegar, but did not have the strength and this caused severe, shooting pains up into my neck. Earlier had brushed cat and swept a small area of carpet, but had to lie down afterwards and was sweating profusely and shaking from the exertion, which took until late morning to subside. Hands and wrists painful again. Writing hurts particularly today. Have mystery inflamed scratch on left arm that I don’t remember getting. Burning pain in hip and upper thigh again.

Friday, 18 Mar 2011

Forgot to take medication until late last night, so couldn’t get to sleep. Woke later than I have been doing, in compensation, but woke with the mother of all headaches, with terrible neck pain and extreme nausea. Had to lie down as this was unbearable and it also made me extremely sensitive to light – if I looked towards the window or computer screen it made me even more nauseas. The headache only began to go in the afternoon. Had to go to the local Post Office, but because of the “stupefying” effects of the Lyrica, I was swaying and staggering around the streets like a drunk, being absent-minded and getting in people’s way in the shop and also found it difficult to make my purchases, count money, etc. Felt very confused and vulnerable. As well as being intolerable, this is too dangerous and I won't be leaving the house under these conditions again.

Saturday, 19 Mar 2011

Didn’t get to sleep until around 3:30am and today my knees feel like they’ve walked a couple of miles or that I’ve not been to sleep at all and are so painful and clicking and feel as if they’re swollen. Had to keep stretching my legs out in bed as they cramped up in pain. House cold again, so my thighs went into spasm as soon as I went to the kitchen – this usually only happens out doors in winter temperatures. Neck still too painful to sit unsupported. Ankles, like knees are stiff and clicking. Hip pain with nerves burning again.

Sunday, 20 Mar 2011

Yesterday, put my hands down beside me to push myself up into sitting position and my left wrist just gave way and bent back on itself with a mighty crack. Super-mega painful. Today the pain is worse and I have no power in it. Can’t lift coffee cup or turn a tap. (Can’t put support on wrist as it caused my skin to split last week.) Neck painful, as usual. Dizzy on sitting up, as well as standing.

Monday, 7 March 2011

Monday, 7 Mar 2011

Had to get up early, which took supreme effort. Really needed more sleep and found it difficult to get out of bed, but had to take the boy [Balu] back to the vet again. Could not stand at the bus stop and had to sit on the roadside, as I felt dizzy, light-headed and sick. Every step of walking hurt – like a knife stabbing into my hip joint. Got home exhausted with burning pain right down my right thigh. Knees ache. Back feels broken. Neck pain off the scale. Mega headache. Really couldn’t do anything in the afternoon and had to lie down until beyond 7pm. Had to fight to stay awake until a reasonable time to try to avoid starting a cycle of insomnia. Lasted only until 9pm is and couldn’t even concentrate on banal TV.

Tuesday, 8 Mar 2011

Woke up early, long before 8am, though I dozed again, but had slept very lightly all night and woke up with tired, sore eyes and feeling strung out like I’d pulled an all-nighter. Hip pain is unbearable again, as is neck pain, mostly from the cold and the jolting of the bus and just having spent some time not reclined and supported. Knees stiff and sore from the walking yesterday and back still feels broken.

Wednesday, 9 Mar 2011

Lyrica [Pregabalin], which I started on Monday night with just 25mg once a day, rather than the twice a day as prescribed, because of my tendency to to have severe reactions to drugs, totally knocked me out last night. Slept heavier than normal, but had to remove a 10 ton elephant off me before I could move this morning. So, either I can’t function because of pain and poor sleep, or I can’t function because I’m drugged up to the eyeballs. 

GROSS ALERT: Discovered a small piece of loose scab and removed it from inside my navel. This is the first time this raw, sore incision – from a laparoscopy in 1986 - has ever formed a scab in 25 years, which gives you an idea of what I really mean when I say that I heal very slowly.

Thursday, 10 Mar 2011

Slept too heavily last night and woke up in much more pain and stiffness than usual, neck pain particularly. Site of scar on navel VERY sore today and constantly itching.

Friday, 11 Mar 2011

Major attack of IBS this morning with considerable pain. As usual, as soon as I thought I’d finished, along came another ‘contraction’ and off it went again. Was on the loo for 45-60 minutes. This left me feeling weak, exhausted and unwell. Stomach as sore as if it had been kicked and bruised. [As ever, any pain medication causes constipation and my system gets into a vicious cycle of boom and bust and the end result is more pain, not less. It seems a pointless exercise to me.] Tried some ‘easy’ isometric (not moving) exercises for my neck. Kept it to just 3 repetitions, holding just for seconds, but this still caused an awful increase in pain around my neck and shoulders.

Saturday, 12 Mar 2011

Felt crap again [pun intended]. Had to get up in the night, but also woke up too early, despite still being very tired. Can’t stop yawning. Joints stiff and painful. Hip burning. Dizzy every time I stand up.

Sunday, 13 Mar 2011

Pretty crap again. Weather humid, so stiffness increased, stabbing pains in joints, as well as their usual soreness. Headache and pain in left kidney that always resurfaces any time I’m particularly tired.