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. %)

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.