Myalgic Encephalomyelitis is the official World Health Organisation (WHO) name for M.E. It means something like pain & swelling of the brain & spinal chord. There is a sort of British cabal of psychiatrists who believe, for it is a matter of faith for them despite evidence to the contrary, that it is a psychiatric problem. Interestingly the same argument this côterie put forward for explaining M.S. way back, and so on… Thankfully neuroscience and break-throughs in bio-medical research are countering their argument.
Unfortunately, making matters complicated for researchers, very few sufferers have just M.E.; many of us suffer from multiple conditions plus co-morbities. Inter alia I have myalgic encephalomyelitis (ME), fibromyalgia (FMS), irritable bowel syndrome (IBS), Raynaud's syndrome, osteoarthritis (OA), a gout-like arthritis, … Only the latter gives visible symptoms, when I swell up like the Michelin man. Thanks for not judging by outer appearances.
For this awareness day I plan to keep a live-blog of events as they concern myself throughout the twenty-four hours. This means that the blog will be hopefully constantly, but most likely sporadically updated. So please come back from time to time.
03.27 Much earlier than is typical I am awoken from a feverish nightmare after four hours sleep. My heart-rate is very rapid. It is the sensation of being almost in an anxiety-attack. I take several deep breaths. Damp, I have to remove my bedwear, which with stiff limbs is no easy task. Then I shakily and with a great deal of pain succeed in raising my plastic beaker of water and take a gulp. Time to distract myself now from the still not fading nightmare, the slowing but yet still racing pulse and the coursing, throbbing pain.
05.12 Heart-rate has slowed, but still not back to normal. Have posted and responded to various social media (SM). So tired. Need to sleep; so going to have another attempt. Going to use some visualisations to try to assist me in going to a happy place.
05.37 I chose the wrong time to try to sleep. A downpour means my arthritic bones have gone into hyper-awareness and I am now in fairly intense pain. No matter what position I place myself in, the pressure is like a slow torture, gradually building in intensity. I just feel shattered.
05.43 A pressure head-ache has begun to throb. Heart-rate slowed down and returning to normal. Eyes are beginning to react photophobically: I have had to reduce the computer-screen's luminosity down to minimum. Shall have to stop typing now, as acute and sharp stabs of pain in my head and eyes.
09.00 Another nightmare wakes me up. This time, a regular type for someone who is mobility-impaired, I am faced with flight after flight of stairs. Whilst I rarely dream I am in my wheelchair, in this narrative my companion is so seated. Neither of us can escape where we are.
09.05 More rain: sudden increase in pain all over my body. Still feeling exhausted and in need of more sleep. I drop off quite quickly, but sleep fitfully.
11.12 Really heavy rain lashing on the roof and the windows brings me back to consciousness. Another wave of pain. I distract myself with the lovely aroma filling the room: the negative ions of summer rain. I fall back to sleep.
13.26 Awaken, stiff, achey; but headache has dissipated and level of photophobia has ameliorated - can cope with ordinary spectacles (rather than sunglasses) in my bed-cell, although still with the blind down (sorry #ConDems!).
13.52 Email my lovely contact at Altrincham JobCentre Plus, who has been kindly trying to help me extract information, even just a response from Bolton Benefit Centre. After twelve fruitless months of trying to get info, some of which is actually offered by DWP in their correspondence, from Bolton, I eventually had to follow through with a threat to involve my MP, Graham Brady, chair of the backbench 1922 Committee. He has so far succeeded in getting Bolton to contact ATOS and the DWP FOI section; but as yet no explanation as to why they refused/failed to respond to my correspondence and that of Altrincham JCP.
14.17 I received an invitation, which I accepted, to attend a speech by Ed Miliband in Manchester this evening. I have just sent my third email trying to determine whether the venue is accessible. It seems the Labour party are not responding. However, it is a lot of effort for me to wash, dress, travel and attend such a session (I will be ill for several days afterwards) and also will cost me the best part of fifty pounds in taxi fares. I do not wish to waste my energy nor my money.
14.27 The venue IS accessible. I can go. Now I need to find WoWCampaign's Ian Jones' question suggestion and write out a question, just in case I have an opportunity.
14.51 Made it to ground floor without falling - a god job as I forgotten to put on my pendant alarm. I am about to bring in the shopping and put away the chilled stuff. The rest will have to be done another time.
15.21 In order for me to be able to move, I need to warm up my muscles in a bath. This is risky for me, as I have poor equilibrioception and no-one to help me out of the tub. Fingers crossed that today will not be one of those where I get ultra dizzy and collapse. Well, if there are no further updates, you know what has happened!!!
16.14 Eventually made the taxi-driver realise that I would need his assistance in transferring my wheelchair into his cab. Despite being cloudy in Manchester, I needed to sport sunglasses to cope with what was for my sensitive eyes too much brightness. The cab-driver was happy to chat away, so I remained chilled listening to his tales.
16.47 The taxi-driver gets me to the disabled ramp and unloads the wheel-chair; however, made no offer to help me into it. I succeeded in setting up the chair and sat down and then wheeled myself over to and down the ramp. A lovely young Manchester lass offered assistance, for which I thanked her, but declined.
17.05 The doors to the venue are opened and we all file in.
17.10 Noticing a gaggle of wheelchair- and mobility scooter-users I wheeled over to join them and in so doing think I recognise Wayne Blackburn. And indeed it was. It was great to catch up and have someone to natter with.
18.00 Ed Miliband gives us his key-note speech on the future of the NHS. He is supported by Andy Burnham, shadow health secretary. He goes straight into a Q&A session. One questioner from Liverpool, an unemployed REMPLOY worker, enquires to treatment of the disabled and the WCA (work capability assessment). Ed Miliband categorically stated that he would support those with disabilities who can work into the world of work and those were unable to work would still be supported by the state.
19.05 I have to depart, I needed the loo (wc) & meds and was fading fast. My blood pressure was dropping.
19.10 Ablutions completed and offered assistance by passers-by on entering and exiting in relation to the door (which might suggest more about toilet design than my abilities).
19.17 Taxi arrived on time and swiftly carried me home, breathless from wheeling my chair and having to speak.
19.59 I am back home and back on-line after a technical hitch - it was the wheel of doom and I could do nothing to get rid! I am breathless, shaking and suffering muscle spasms in my left arm and thighs. I need to eat, drink and take meds. then I shall back fill what has been going on.
20.51 Tucked up in bed. Now suffering tremors and muscle spasms all over. The house thermostat says it is warm on every floor. My body is not so sure! My eyes feel heavy. My heart-beat is slightly erratic from all the physical exertion.
22.44 Was trying to watch the news, but my hyperacuity, or noise-sensitivity, means I have yet another throbbing head. Going to settle down now and hope for a good night's rest.
Thanks for reading, folks. %)
Well, after a good ten hours sleep, uninterrupted by nightmares nor fever, I awoke to:
* a mouth-ulcer on the end of my tongue;
* eczema patches around my eyes;
* heavy, prickly eyes;
* a throbbing headache;
* fingers swollen to the size of chunky sausages;
* painful breathing due to costochondritis flare-up;
* pain in my hip & lumber due to aggravating the osteoarthritis;
* ear-ache in my right ear;
* an irritatingly itchy skin-rash all over;
* cold-like or allergy symptoms to goodness knows what;
* zits around my T-zone.
I have been awake an hour and a half and as yet still have been unable to leave my bed. I have no water and am rather thirsty. Shall have to wait till body can move though.
Obviously yesterday was not a completely typical day, as I would not normally go to political meetings! But dealing with bureaucracy - not solely DWP - is pretty much a regular occurrence.
I expect to be knocked back for a couple more days yet due to having gone on that wee jaunt. Sometimes the health price is worth paying.