My MEstory: Life with Myalgic Encephalomyelitis

Well, cannot say I have enjoyed the best of health this past month or so, that is International M.E. Awareness Month. I have felt fairly terrible and really brain-fogged. So, writing an in-depth blog-post has not been possible. I have however managed to post on social media. Herewith I have collated some that at least give some health background and updates on my health. I would not normally post about my health, but in order to raise awareness, folk need to know what one is like when they cannot see you, as so often our illnesses are hidden or invisible.

Apologies up-front for the sight-impaired as there are no image descriptions as I just do not have the energy to do so at the moment.

4th May

Oh I know this one…

5th May

There are always folk worse than oneself to prevent one wallowing in self-pity. I am so fortunate in many ways: I have had a 'normal' life. This poor young girl has suffered terribly and is still in so much pain. Bless her & all of us with M.E.!!!

6th May

Just managed forty-five minutes out of bed, long enough to: descend stairs; eat cereal & fruit; take medications; turn on dishwasher & washing-machine; remount stairs; and, collapse back into bed. Now stiff, achey and in pain - thanks M.E.!!! %S

7th May

Well, managed a whole twenty-five minutes out of bed. Food consumed. Meds taken. Knackered. Hoping for dry & warm change to the weather…

Local weather prognostication is for rain right through to & including Sunday. So confined to my bed-cell then!!! %SSSS

8th May

Ugh!!!

So funny!!! %DDDDD

9th May

Had drink (by bed). No meds. No food. Plenty of pain. Stayed awake for about 150 mins. Now back to sleep. Bl**dy M.E.!!!! %SSS

10th May

I'm never going to recall … (another M.E. day with resulting brain-fog) …

*****

Another nasty one: today is world #Lupus day.

12th May

Alas I do and have done officially since 1998, although I had the symptoms for years beforehand…

I shall shortly be posting from the international vigil; for those not wishing to light a candle, p'raps this status could be posted for an hour or so in support of all with invisible illnesses. 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. %)

Oh boy, do I know this feeling…

This is what it is like for many in the UK. I am so lucky in that the G.P. who diagnosed me supported me for some ten years. My hospital consultant is a specialist in M.E. and is totally supportive too. I truly give thanks for my good fortune having read some awful tales from fellow M.E. sufferers (PWME).

13th May

Yesterday was M.E. Day, this is also M.E. Week and Month… Awareness-raising continues! %)

M.E.Association released NOTHING for #InternationalMEAwarenessDay.

Action for M.E. released this (pdf): 

http://www.actionforme.org.uk/Resources/Action%20for%20ME/Documents/get-involved/me-time-to-deliver.pdf

15th May

My name is Colin-Roy, and I'm a spoonie!

Spoons are used to go to the loo, to think, even just breathing… %S

16th May

The M.E. scene (they call it chronic fatigue syndrome or C.F.S. in U.S.A.) from The Golden Girls. I do not recall this episode, but no doubt I must have missed the odd one or two. Susan Harris, creator and producer of the series lived with ME/CFS for many years.

17th May

By now you are probably all aware that it is International M.E. Awareness Week (part of International M.E. Awareness Month). I am grouping all my relevant blog-posts in a list below, just in case you missed one or wish to revisit one.

My #MEstory - http://crippledqueeranglo-europeanranter.blogspot.co.uk/2012/07/judgmentalism-of-invalids.html

Another #MEstory; a day in my M.E. life - http://crippledqueeranglo-europeanranter.blogspot.co.uk/2014/05/international-me-awareness-day-12th-may.html

A personal classification of pain as I experience it - http://crippledqueeranglo-europeanranter.blogspot.co.uk/2012/05/pain-taxonomy.html

Brain-fog or M.E.-fog or fibro-fog or … - http://crippledqueeranglo-europeanranter.blogspot.co.uk/2014/05/addlement-or-brain-fog.html

A poem I wrote about the realisation of loss and grieving for my old self -http://crippledqueeranglo-europeanranter.blogspot.co.uk/2013/05/all-back.html

Finally a guest poem by Sophie Turner aka bambimax -http://crippledqueeranglo-europeanranter.blogspot.co.uk/2014/05/this-is-face-of-me.html

18th May

I have physical-, emotional-, spiritual-, sexual- and mental-health issues: how can one separate or justify segregating elements; one ought to be treated holistically.

19th May

Since coming back from Spain, my state of health has dramatically deteriorated. On two out of three days I am bed-bound. Most of the week I am housebound. My anxiety levels are soaring. I am falling further and further behind on tasks and communications. If you are awaiting a response from me, please be patient.
And for those wondering how I manage to post updates & so forth: this is my way of diverting myself from obsessing about pain, anxiety & so forth and trying to refrain from creating a downward spiral.Your continued forbearance is appreciated. %)

Just need to ride it out. Apparently we're due a heat-wave for some six weeks or so. Hopefully, in that case I should ameliorate. Contacted social services, just waiting for them to get back to me about re-assessment. Once sorted I am hoping I'll calm down as should end up eating more regularly. All will be well. %)

20th May

21st May

Whoo! Managed a whole hour out of bed; now back to bed-cell. However, eaten, hydrated, medicated and did a couple of easy chores. Now exhausted & in pain again. Heigh-ho - life with M.E.

22nd May

Thanks to Michelle offering me a lift to & from the polling-station, I am now able to go to cast my vote.

23rd May

Not wide awake - more sort of half semi-conscious - as bones knew rain was on its way. And sure enough precipitation is falling. Heigh-ho! %S

I realise the month is not over yet; but I thought I had better do this whilst I am reasonably alert and have some energy.

Thanks to all: carers and friends; campaigners, posters and sharers; scientists and researchers; consultants, doctors and nurses; and to all those with these invisible illnesses who support each other via social media. %)

International M.E. Awareness Day, 12th May 2014

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.

criquaer

%)

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. %)

UPDATE

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;
* photophobia;
* 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.

Spain for the Elderly, Disabled and Infirm?

This past week the wonderful disability & welfare rights advocate, Sue Marsh, blogged about a great idea she had and which was supported by several well-known economists. See here for more details as it is well worth a read.

The article prompted me to add my two pennies worth:

Criquaer 2 July 2012 20:38

I've been going to Southern Spain for more than a decade for my health on GP's advice. In a similar vain, I do not understand why Govt./LA's do not send well-ish elderly/disabled to Spain to be cared for during the winter - cheaper than costs in UK, less need for fuel allowance, carers, meals-on-wheels, etc. Also benefit from better climate and social activities - thus less loneliness. I believe Germany & Denmark (???) send some folk there to recuperate.

[Image description: the author shuffling along the esplanade in Benalmádena, Andalusia.]

More than a decade ago, my then G.P. advised me to winter in southern Spain for health reasons. My osteoarthritis (inter alia other conditions) is greatly affected by Manchester’s (north-west England) damp climate to my detriment. This results in my not being able to walk and so needing to use a wheelchair, and, worse from my perspective, being confined to my bed for approximately two in every three days. Being bed-bound unsolicited is no slacker’s dream; but rather a Kafkaesque nightmare of imprisonment within the same four walls and exile from social contact (well, prior to facebook anyhow!). Despite the current Government's media approved scrounger narrative: no-one in their right mind would willingly choose this as a lifestyle. However, once in Spain my condition considerably ameliorates as it does for many OAPs (retirees) who also winter there themselves.

The Conservative-Liberal Democrat coalition is desperate to find ways of saving money. Spain is desperate to create jobs and boost its economy.

I suggest that Britain sends those of its elderly, disabled and ill-health sufferers who are willing and able to Andalusia during the autonomous region’s off-peak tourist season, roughly October to March. The Junta de Andalucía could co-ordinate consortia consisting of hotels, medical establishments & town councils to bid for contracts and/or they could calculate a fair rate to charge the UK Government or individual local authorities.

The advantages to the UK might include:

A reduction in excess winter deaths;

A reduction in the need for winter fuel allowance;

A reduction in CO2 emissions due to reduction in energy use;

A reduction in water use;

A reduction in winter pressure on the NHS;

A reduction in the need for ‘flu jabs;

A reduction in the need for (humane) social care;

A reduction in the need to import foodstuffs;

A reduction in the number of travel journeys made & use of public transport, thus reducing stress on the transport infrastructure;

A reduction in the need for meals-on-wheels;

A reduction in the demands on the charity sector;

A reduction in the workload of social services departments;

A reduction in crime against the person;

A reduction in loneliness for those sent out to Spain;

An increase in health & well-being for those sent out to Spain;

An increase in employment and/or job-security in the airline industry;

An increase in employment and/or job-security in the policing/security industry.

Disadvantages might include:

An increase in property crime;

A reduction in spending locally.

The advantages to Andalusia might include:

An increase in hotel room occupancy rate and thus income of hotels;

An increase in employment and/or job-security in the tourism/hospitality industry;

An increase in spending in the local economy by those sent out to Spain;

An increase in spending in the local economy by those newly employed and/or retained in employment;

An increase in employment and/or job-security in the medical industry;

An increase in demand for locally- or nationally-grown or reared foodstuffs;

An increase in use of public transport and/or taxis, so supporting the transport industry;

An increase in employment and/or job-security in the airline industry;

An increase in employment and/or job-security in the waste management industry;

An increase in teaching jobs to give all those sent out to Spain the opportunity to learn Castilian Spanish;

An increase in Spanish cultural awareness;

An increase in cultural activities for both locals & those sent to Spain;

An increase in employment and/or job-security in the cultural industry;

An increase in the need for policing/security thus an increase in employment and/or job-security for the security industry;

An increase in well-being of locals gaining employment and/or increasing their hours/job-security;

A reduction in the need for benefits for those obtaining jobs and/or those with extended hours.

Disadvantages might include:

An increase in the use of precious water resources;

An increase in CO2 emissions;

An increase in pollution;

An increase in waste;

An increase in pick-pocketing, muggings, etc.

[Image description: the author on a two-stick day in Míjas, Andalusia.]

I understand other countries have similar schemes: but I believe what I am suggesting is on a scale not previously contemplated. Is it worth a go? Or am I being hopelessly naïf and idealistic?

Pain: a Taxonomy

Here is an attempt at classification of the different types of pain from which I suffer. Obviously the degree of pain is variable, from dull to sharp to acute, and differs depending on the type of pain. For example: achy pain is never sharp or acute; piercing pain is never dull. I have listed the terms alphabetically, not in order of frequency or intensity.

This is not an attempt to elicit sympathy nor an extension of putative hypochondria, but a genuine attempt to come up with some pertinent descriptors.

You may be aware of other types of pain than the eighteen hereby listed. You may experience pain differently. So, please feel free to add comments below.

Achy - dull; relating to my fibromyalgia (FMS); or my osteoarthritis (OA), usually heralding damp weather.

Blinding - experienced as searing flashes of light; migraine &/or photophobia.

Cutting - Raynaud’s syndrome skin splits; feels like multiple paper-cuts.

Drilling - into temples; migraine; at its worst makes me bang my head on the wall.

Earachy - probably one of the most difficult pains to cope with as makes sleep impossible for me over a prolonged period.

Fiery - arthritis in joints: hips, lumber, shoulders, wrists, elbows, feet...

Headachy - front of skull (not migraine); this is the only pain for which my prescribed painkillers (codeine) actually work.

Itching - eczema; is insanely worse than a typical itch mixed with a high degree of soreness.

Nasal - a burning sensation accompanied by an über-taut muscular contraction (a sort of heightened awareness or prolonged about-to-sneeze feeling) in my nose in reaction to chemical- &/or odour-sensitivity.

Piercing - sharper than stabbing and moves through my body faster than travelling pain; front ribs thro’ to back ribs or v.v. (sometimes linked to costochondritis); similarly with feet; back of head thro’ to back of eyes.

Pressure - ranging from being touch-sensitive to bed-sores.

Prickly - eye-balls; sometimes a precursor to migraine or a reaction to photophobia.

Shooting - up and down limbs, faster than travelling pain and doesn’t move elsewhere.

Stabbing - in my back (sometimes linked to costochondritis); soles of feet; base of skull; irritable bowel syndrome (IBS); constipation; diarrhœa.

Throbbing - more intense than achy, but less acute than fiery; typically in my limbs &/or at the back of my skull-base and in my neck.

Toothachy - my dentist advises there is nothing wrong with my gnashers, it’s simply yet another effect of the myalgic encephalomyelitis (ME); it can be a random single tooth or a whole jaw of teeth.

Travelling - moving, seemingly at random, from one part of the body to another with no discernible pattern.

Vibrating - a whole of body reaction to my intolerance of vibration &/or sound; it’s a sort of edginess that echoes around my body in diminishing waves; I feel it particularly acutely in my ears.