Resources for caregiving on the Very Severe end of Very Severe ME

Hi, I usually can only use my phone for a couple minutes every week or so but sleep deprivation and an unknown allergic reaction gave me lots of adrenaline.

I am using this to request help to compile a couple resources that will help my parents care for me.

Obviously I am super thankful to everything my parents are doing for me, I would be dead without them, but since I can barely communicate there is a small deviance between my needs and how they care for me. This is not helped by the fact when I say something they don’t seem to fully understand me or want to discuss which makes sense if they don’t understand but since I am unable to reply usually and its very stressful it makes everything worse.

I am very severe (0.4/6 on funcap27), probably a bit like 2019 Whitney, when he was not on Abilify yet, unable to write full blog posts, but slightly better than his complete worst, except I am lucky to be able to get all of my food via specific nutritional drinks, and not need feeding tube for now. (Ie. I have taken 35 days of writing small snippets on good days to fully write this question).


Here are the points I want to convey to my parents:

1. That dying is an unlikely but real possibility and that we need to do everything to mitigate it — which usually means doing “less medical stuff” and more sensory deprivation/resting optimisation

2. That I am not overreacting when I have jerks or severe crashes due to "normal" sounds, like the zip of a bag or the door closing at normal speed (even though I have sound protection)

3. That the current strategy of trying loads of drugs and supplements is probably more dangerous than beneficial

4. That while we are lucky to have a family doctor that believes in ME they should not blindly trust him because no doctor is perfect and he has shown worrying signs. (ie. saying that there must be some "fear" involved because there is no way I can be this severe for this long)

5. The chronicity of the illness, my parents seem to be of the mindset that if I don't start getting better doing absolutely nothing all day and resting at home we need to look at other avenues, but this is the bare minimum for me not to worsen, not a “treatment strategy”.

6. Related to this they seem to be of the opinion. that there is a chance I will “get a bit better” if I get hospitalised, this hospitalisation is with doctors that believe in ME and a private room, but also means multiple hours in car/ambulance. However due to the fact I am extremely sensitive to noise and light, and that small deviances in my caregiver’s routine can crash me, I think it will be extremely dangerous for me.

7. They seem to think “more tests = better” but they find it hard to account for the fact it can take me months to recover. And some tests just seem dumb or I’m worried they are being manipulated by “alternative” doctors (ie. Even though I am on multivitamin/minerals since 6 months they made me do a blood test to check my vitamin levels which came out normal, but then doctor told them to change from the one I was taking to tons of individual pills which I’m guessing must have not been cheap and I doubt will change much; the doctor claims to be making a small “tweak” to boost cellular energy)

8. I’m scared I’m going the MCAS/feeding issues route with lots of weird reactions lately, I need my parents to understand best practices for feeding support ie. Not long term hospitalisation — NG-tube and go home. Related to this, something on titrating?

9. That while I want to try Abilify, it would be dumb to try it straight away, it would be smarter to wait and see how my situation evolves/if I stabilise, before trying a treatment that usually stops working and returns patients to their previous state after a while.

10. PEM; no one really understands it, but something that validates the experience that the tiniest of things (a thought, a new/strong taste etc) can cause PEM and that PEM can cause permanent worsening.


These are the two best resources I found that dabble a bit in it all:

https://meglobalchronicle.wordpress...he-care-of-patients-with-very-severe-me-vsme/

Whitney Manuscript (Extremely Severe ME — Personal Account)

I’d be super grateful for anything else, in advance, thank you for any reply or contribution (heart emoji)


(I’m debating whether I should send this post to my parents, but I’m scared of starting a “discussion/debate” because I don’t have the energy to answer or entertain it.)

 

https://www.dialogues-mecfs.co.uk/films/severeme/

 

How have I never been shown this before; amazing resource. Thanks!!

 

Severe ME : Notes for Carers (stonebird.co.uk)

hydoc (stonebird.co.uk) - this is a leaflet explaining sensory hypersensitivity - i found it really good to give my care givers (i not as bad as you but i do have serious sound sensitivity & when in PEM & relate to the agony & hell of the sound of a zip/door closing normally that you mentioned, and I remember when reading it, thinking it covered this very well).

These are both from the website Stonebird by Greg & Linda Crowhurst, she has very severe ME her husband & carer is a nurse & they have written several books/leaflets about caring for PwME who are severe/very severe/extremely severe. Stonebird: The Lived Experience of Severe Myalgic Encephalomyelitis (ME)

The links take you direct to the leaflets, so should be fine.... but unfortunately the main website is not (i dont think) very easy to view, so wait till you at your absolute 'best' to view it.