Severe M.E. Day 2024: FUNCAP55

 

Today, 8th August, is Severe M.E. Day. I have previously blogged on this date.

In 2022 about my social-care needs. Link.

In 2021 about my poëm “Missing” having been published. Link.

In 2018 I could not write much due to my condition, so posted a relaxing tune and accompanying video. Link.

In 2016 about Severe M.E. Day. Link.

In 2015 about why I could not post on actual date, but rather late. Link.

When I have not blogged it is due to being too ill to do so.

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In January this year I took the FUNCAP55 functionality-test. As I understand it is a project instigated by the Norwegian M.E. Association & Prof. K. Sommerfelt in 2022. He presented the details at the 15th Invest in M.E. Research [IIMER] International M.E. Conference 2023. This link takes one to YouTube to a twenty-two minute video.

A pre-print paper was published in September 2023. This link takes one to preprints.org.

In late 2023 or very early 2024, Raff Benato turned the questionnaire into an easy-to-use mobile app. This is the link for the app.

In June 2024 the paper was published in “Journal of Clinical Medicine”. This link takes one to the US National Library of Medicine, where one may read the full paper.

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The results of my first attempt can be seen in the image above. Over all, I came out as mostly “severe” with some “very severe” areas.

A few days ago I took the test a second time (image above), that is approximately six months after the first. I was not anticipating much change - how wrong could I have been! Remember, this is based on typical not best/worst days. I had not reälised I had deteriorated so much. The vast majority of my results now place me in the “very severe” category on the majority of my days. Heigh-ho! I suppose I ought to have expected same, as the past three months I have been almost totally bedridden and unable to do much more than eat, drink and use the w.c. Whilst most days I can spend some time on-line, I have to limit what I do to prevent migraines. Much of the time I lie abed, blind-folded (to avoid photophobia) and with noise-reducing headphones (to avoid hyperacusis). It is not much of a life, but there are people with M.E. (PwME) who are fed & watered intravenously, who cannot even use a urine-bottle without assistance.

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Severe M.E. is a hellish life……

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The Social-Care I need (from Trafford Council)…

Today is 8th August. Each year this marks the international-day for Severe M.E.-awareness. Inter alia I suffer myself from Severe M.E. My condition has been deteriorating for over two decades.

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[Image description: Facebook screenshot of post from August 2017, when I was being appropriately cared for.]

Five years ago I received care-calls at 11.00 (brunch), 16.00 (shower) & 20.00 (dinner). A year ago Trafford Council cut back my calls to just 16.00 & 20.00. Apart from failures to prompt me and care for me across the board, specifically it has resulted in mostly one meal per day at 20.00 and (until a charity heard about my plight and sent me a hydration-system) I was only receiving four cups (not beakers/mugs) of water each day, two of which were medicated. Despite repeated complaints I am now at the juncture where legal-action looks like the only means to obtain appropriate care.

Having finally lodged a formal complaint with the CEO of Trafford Council about their failure to adequately or appropriately care for me, I turned to revising my carer-duties list in order to be as explicit as I possibly can about my needs. I do not consider that they are outlandish. Rather, they are the basics that ensure I have a quality-of-life instead of an inadequacy-of-life.

It took the CEO’s PA just over three weeks to send a holding-response, to which I have replied.

Does anyone consider anything on my list as outlandish or unreasonable? Trafford Council considers that the vast majority of this list is not appropriate, otherwise they would have ensured that I was receiving the support requested. Recall, I have dire active-memory. Yes, I can remember items when expending a great deal of energy that causes me pain and excessive & exhausting fatigue; but I can only do so in short bouts before needing a few days to recover.

[Image description: Fitbit heart-rate read-out for the day I wrote to the council. The peak just after three a.m. is a nocturnal visit to the w.c. - a return hobble of 6 metres. The peak at nine p.m. is me trying to concentrate on writing an email - something I am finding increasingly difficult to do.]

Oh, and I do not take delivery of three lots of shopping in a week, except at Christmas, Easter and special personal celebrations; so the carers usually only have to deal with one lot of shopping.

Whilst compiling this list, I reälised that in over a decade of being under the care of Trafford Council, not once has any carer asked me:

if I want to comb my hair or need assistance therewith;

if I want to brush my beard & moustache or need assistance therewith;

if I want to trim my beard & moustache or need assistance therewith;

if I want to shave or need assistance therewith; or

if I want to moisturise my skin or need assistance therewith.

I cannot tell whether all clients are thusly failed or whether it is a case of sexism rearing its ugly head.

Would you the reader be happy not being groomed on a daily basis?

Please feel free to comment and give your opinions as to whether or not I am being unreasonable in my requests.

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Most folk with Severe M.E. are similarly failed by the NHS - including G.P.s , by LEA Social-Services departments, by the DWP, by society at large and even by families who only see the caricatures of the illness propagated by the UK’s mostly ultra-right-wing media.

	Action	Location	Notes	M	Tu	W	Th	F	Sa	Su
	Prepare phosphate-water - use water from utility-room right tap.	Utility-room	Beakers & tabs in RH cupboard above main surface.
	Last call: prepare fresh water-bottle for hydration-system.	Utility-room
	Collect blister-pack & take to Colin along with phosphate-water.	Hall	Ought to be on carer-station.
	Supervise & ensure Colin takes meds.	Bedroom
	Remind Colin to do physio stretches of hands & feet whilst lying.	Bedroom
	Supervise Colin doing physio stretches of neck & torso whilst sitting on bed-edge.	Bedroom	If Colin wobbles, tell him to stop.
	Check how Colin is, how he slept.	Bedroom
	Check if urine-bottle needs emptying: flush down wc; wash with soapy water.	Bedroom/en suite
	Check whether heated bean-bag/hot-water bottle(s) [HWBs] needed.	Bedroom
	Check how much water/liquid, if anything, Colin has drunk.	Bedroom
	Check whether water-cup needs refilling - use en suite right tap.	Bedroom/en suite
	Prompt Colin to drink by suggesting a juice/coffee/tea/milk/can of pop/COMPLAN if off food or ill/etc.	Bedroom
	Check what, if anything, Colin has eaten.	Bedroom
	First call: Prompt Colin to eat by suggesting some cereal/toast/sandwich/salad/cheese & crackers/boiled-egg/etc.	Bedroom
	Check whether T-shirt needs changing and assist if necessary.	Bedroom
	Remind Colin to use a face-wipe if he cannot use bathroom.	Bedroom
	Remind Colin to wash if he can use bathroom, but cannot shower.	En suite
	Check whether Colin wants to trim beard or shave.	En suite
	Supervise shower by listening out for fall or call for assistance.	Various
	Prepare food-tray, as required + paper-towel/serviette/napkin.	Kitchen
	Last call: prepare bowl of fruit (see FAQs) & snacks + paper-towel/serviette/napkin.	Kitchen/hall
	Last call: If housemate unavailable, prepare, cook & serve hot meal.	Kitchen	A selection of ambient foods is in green tub in bedroom.
	Prepare heated bean-bag/HWBs as needed.	Kitchen
	Remind Colin to turn off shower's power-supply.	En suite
	Remind Colin to moisturise.	En suite
	Use squeegy to wipe shower door & use daily-spray to clean shower, if Colin unable.	En suite
	Remind Colin to use deodorant.	En suite
	Remind Colin to clean teeth or mouth-wash if unable to brush & then supervise.	En suite	If Colin wobbles, tell him to stop.
	If Colin is bedridden, proffer bowl & mouth-wash.	Bedroom
	Check whether Colin wants to comb hair & support if necessary.	Bedroom
	Check whether Colin wants to brush beard & support if necessary.	Bedroom
	If Colin is out of bed, check he is wearing pendant-alarm.	Various
	Last call: check whether Colin needs circulation tablet.	Bedroom
	EXTRA DUTIES
	Monday: Get dustbins from garage & place by hedge at front of house, if housemate unavailable.
	Tuesday 1st call: Return dustbins to garage, if housemate unavailable.
	Tuesday last call: Sterilise hydration-system with mild Milton & drain in utility-room.
	Wednesday 1st call: Bring in Able & Cole food-shop from garden; wash fruit/veg to drain in kitchen; put away chilled food; leave ambient for housemate to d/w.
	Thursday 1st call: Bring in Riverford food-shop from garden; wash fruit/veg to drain in kitchen; put away chilled food; leave ambient for housemate to d/w.
	Friday 1st call: Collect shopping from Waitrose (16.00-18.00 slot); bring back; wash fruit/veg to drain in kitchen; put away chilled food; leave ambient for housemate to d/w.
	Saturday: Change bed-linens.
	Sunday: X

“Missing” Published!

ME Action requested submissions from creatives with Severe ME or Very Severe ME to recognise, remember and support said folk on Severe ME Awareness Day (8th August each year).

I am thrilled that they accepted and published one of my poëms under my nom de plume, Criquaer! Follow this link.

To read the text of the poëm in full, please refer to my blog-post from January this year.

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So chuffed!

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