Advance decision / living will

[FinRinTin]

@Wolfiness
I hope I don't stress you with my post but your blog article "Care" has impressed me very much.

It's so well written with such an objective depiction of your situation that I can barely believe that you are not a healthy professional in her pomp.

I wallow daily in self-pity although I'm able to work part time and your blog helped me to better understand the situation of a member of our community who is affected much more by this disease.

Thank you for this!

 

[YippeeKi YOW !!]

https://lifewithlimits.wordpress.com/2019/05/09/care/

Terrific blog entry !!! Am having difficulty focusing too well right now, and will have to read it thru again in order to fully absorb and process it. I assume this pretty well outlines your primary symptoms/issues, yes?

The brain exhaustion I totally get, as well as the diff between that and 'fog'. I've had both and they're like the difference between Australia and Austria. Both spelled sort of the same, at least at the start (OK, OZ is more like a smallish continent, and Austria is just .... smallish, but you get the point). Both .... well, that's where the similarities end.

I'll be back ....

 

[Wolfiness]

Thank you 😍😍😍

At this point I just need to be heard, believed and complimented 😊

 

[YippeeKi YOW !!]

Thank you 😍😍😍

At this point I just need to be heard, believed and complimented 😊

....
I hear you, I heard you, and I think your blog entry is GREAT !!!!

I'm tagging in @Howard , who's gone through stuff so similar to yours, in so many ways, that I really think he'll have some on-point input ....

@Howard .... give a read to the following blog entry, link below, and share whatever you can that might be helpful, supportive, or just charming, in your own unique Aquarian way .....

https://lifewithlimits.wordpress.com/2019/05/09/care/ ​

PS .... I know that your energy isn't a inexhaustible resource. What I meant was try to give it a quick scan, I know that certain parts of it will jump out at you due to their familiarity .... and I know that @Wolfiness would appreciate your input and time, as would I .....

 

[FinRinTin]

Thank you 😍😍😍

At this point I just need to be heard, believed and complimented 😊

Only what you deserve

 

[Hufsamor]

It's so well written with such an objective depiction of your situation that I can barely believe that you are not a healthy professional in her pomp.

Agreed.
And my heart goes out to you, my friend

 

[Booble]

Wow, that is an impressive blog entry. It is all 100% believable and so well explained. Well done.
Best wishes. I hope you find a few minutes with enough energy and brain power to write a few more words in your blog. I'm sure it's very helpful for others to hear such an honest voice.

 

[vision blue]

Thanks, @Countrygirl

I can't keep going much longer. Communication and feeding and toileting myself will be too difficult within weeks.

If theres anything practical/medical i can do to help
Make you well please post or PM (or ask someone to do it for you). A black market med maybe? A doctor who can visit?

 

[vision blue]

https://lifewithlimits.wordpress.com/2019/05/09/care/

Just thinking out loud, so ignore me. You have undboutedly thought of all this and more.
I read thru this and here's a running commentary of stuff that entered my head in order

MG? no not MG. Total autononic failure? Probably not but not entirely sure.

Then of course started thinking encerphalitis, something with the same mechasims as complex regional pain syndrome, something with NMDA receptors

and started wondering: what's the levels of adreniline and noradreniline dureing some of this? what's the levels of glutimate, and GABA?
Does an EEG pick up abnormal actiivity when overstimulated?
(obviousy no point checking orthostatic stuff when there's deconditioning)

and postitely most definitely, what are the results of a mayo clinic neuro antibody panel - any ANNAs at all?

and started thinking what can be tolerated to have an inroad -

is visiual imagery tolerated? (f yes, then we can figure out which to use)
are some aromas tolerated?
is the noise of an animal as bad as the stimulation of a human?

and also wondering, the less one has to lose, the more one may be willing to throw at the problem

what happens with gabapentin? (i only use topical so can't speak to oral)
immunoglobulins?
immune supression?

feel better or worse or no differnt with fasting?

what heppens if you say to a doc - I do NOT have ME I have been imprpoperly labelled . Find out what i have.
just remember hearing great words once that if there's no treatment for what you have, fight to get a different diagnosis.

shoot now i've forgotten the other what happens with treatment X's.

when i had an attack a few days ago, and even more so the one before it a couple weeks before, the biggest reason i didn' call for emergency help was not covid (despite being unvaxed) but the thought that i could not imagien being touched or even talked to since i was max bad and that would be worse. i think i would have died on the spot of a stroke.

sorry lost train of thought.

like i said, just ignore me.

buttons you can push for Yes, No , and STOP whatever the fuck you are doing right now and go away at once!

 

[Howard]

From your blog entry:

"There’s being disabled because you can’t move yourself, and then there’s being disabled because you can’t endure being moved, and it’s physically depleting for me to be lifted, pushed, manoeuvred or touched by someone else... "

Yes. As recently as eight months ago I was similarly sensitive to touch (and in regards to movement), but I have gradually improved over time due to my daily direct exposure to sunlight. Back then, showers consisted of soapy lukewarm water being drizzled over me (as a lay upon a hard-surfaced shower bed), shaking and shivering away any leftover muscular energy I'd had in reserve, prior to being uncomfortably rolled onto the contraption moments prior (note: I now live in a nursing home).

In regards to having an advanced directive, in the United States, it's a matter of filling out some paperwork. Or having some paperwork work filled out for you. Fortunately, I have not had to go there recently (I was in far worse shape back in 2016). In any case, I have little to offer in regards to legal advice.

Hang in there,
H

 

[Wolfiness]

Oh yes, I did file advance decision

Thank you to everyone but these forums really drain me, I have to sign off x

 

[Countrygirl]

@Wolfiness I am very impressed with your blog and have sent it to Dr Weir to read. You are very talented!

 

[PhoenixDown]

but my GPs don't understand the problems associated with M.E., they told me recently "everyone can go to hospital".

I think you mean to say they don't believe in ME. I'm also 100% bed bound and can't talk so I know how you feel.

 

[BrightCandle]

My GP certainly doesn't understand why it is I can't bring them a urine sample or go get blood tests or attend the hospital. Its not that this hasn't been explained, both in conversation and in writing but they just don't care.

We just fall in the middle where we are too sick to get access to any form of treatment by the NHS because we aren't sick enough for an ambulance and immediately hospital treatment (although there are no ambulances or beds...) and we far too ill to be attending a GP or outpatient appointment without harming ourselves. The thing is I might even take a PEM episode if what was being offered was actually a useful test or treatment but the reality will be that they are only interested in once again, for the 10th time, testing me for the diabetes are clearly don't have as my finger prick test proves every single time. Our lack of ability to attend is combined with their systemic prejudice and it denies us healthcare access. Mine is not a unique position, its likely how most of the 250k and now 2 million long covid sufferers are being treated.

There was an article recently about how the NHS wa treating its own staff with long covid, forcing them back to work and to work harder than they could cope with. It was causing people to get much worse and permanently disabling them and the response from the NHS was improvement plans and then to fire them. This belief that this condition isn't real is rife within the NHS, its utterly systemic and its applied to even their own staff despite all the evidence for Long Covid and its biological underpinnings and the immense number of sufferers.

I have seen zero movement in changing anything for the positive since the NICE guidelines were released either, recognition is great and all but the systemic prejudice is continuing. My GP refused my attempt to have a do not resuscitate order, its going to require a lawyer to force the NHS to meet my wishes.

 

[Seadragon]

My GP refused my attempt to have a do not resuscitate order, its going to require a lawyer to force the NHS to meet my wishes.

Isn't it your right and your personal choice to have a DNR order? I didn't think GP's could refuse your request.

My GP understood my reasons why I do not want CPR although I did have to go to the surgery for a face to face appointment to have her fill out the paperwork with me.

You could try contacting Compassion in Dying - they may be able to assist. Their contact email is at the bottom of the home page. They also have downloadable Advance Decision pack which I used when I did mine a few years ago. https://compassionindying.org.uk/

 

[Booble]

In the US, generally when a lawyer drafts your will and trust they also include advanced medical "do not resuscitate directives. I've even seen them pressure clients to sign them who are a little unsure.

 

[YippeeKi YOW !!]

Oh yes, I did file advance decision

Thank you to everyone but these forums really drain me, I have to sign off x

Please come back when you're up to it and can handle the extra energy output, and let us know how you're doing ....