Finally scheduled, having been referred by the community mental health recovery team last January and been paying a carer and cleaner for over a year. Any advice??
Can anyone suggest one handout/resource that I can leave them with if they say they "don't really know much about it"? Something slightly more care focussed, maybe that explains the whole need to save energy for things as opposed to the idea that increasing ability to do certain things will increase overall ability?
When I had one, I wrote down the five things that were most important to me. Now they could be backed up with sections of the NICE guideline, but mine preceded that. One of them went something like "My biggest priority is saving enough energy for essential things, because I can't increase the amount I have. Small things make a lot of difference, such as being able to shower sitting down, and having chairs, a bed and a toilet that are the right height for me." I decided not to try and explain PEM. I wrote something about over-doing things even slightly causing much more pain, which in turn caused sleeplessness and fatigue—OTs are used to hearing that. As it turned out the person who assessed me had read up on ME beforehand, but I think sticking to concepts that are familiar from chronic pain conditions made it a bit easier for me. There were fewer potential questions to get my fuzzy brain around in what was a pretty exhausting hour or so.
Just remembered something else about the approach: I decided to describe my difficulties in the same way you would a frail, elderly person who also has a chronic illness. Aside from the fact that it's pretty damning for young people to have to resort to it in order for their needs to be understood, it actually works quite well as a framing. It includes the tendency to be socially isolated because you can't participate in many things, and some of the aids and adaptations are similar. Because my autism I often struggle with verbal articulacy, so it helped me to tread a well-worn path rather than challenge their understanding.
On PEM concept I’ve gone with pointing people in general to the website of @PhysiosforME which is simple and not too overloaded with pages enough that I know they can navigate themselves and not find niche stuff but will get the penny drop coming through. I also point to Amy Mooney presentation and the ‘flipping the iceberg’ slide in particular I think along with emphasis that it’s the new guidelines ie me/cfs and that name is important because the old cfs ones were the opposite paradigm which did harm works. Because it sort of explains the old myths (which they might be slightly familiar with) that were ‘believed in the old days’ having to change and leaving what might seem as a bare bones emphasis right now
If I thought people would read anything longer than ten minutes at a time I’d probably point towards work well foundation stuff too but I’m just making huge assumptions based on lay persons that if they see something they can tick the box in five mins ie ‘one slide’ they’ve less excuse to do their own thing and it doesn’t seem a huge demand the physios for me is good because they are Uk based too and I don’t know if showing all eg US things would give an excuse if ‘that’s not how we do it here’
i not familiar with this, do you have a link pls? i think this is a good point... ie to downplay the 'old myths' with a kind of wave of the hand - "we have a new guideline which dispels all those 'silly old myths' about ME" when presenting anything from the new one. Not that i had a care assessment, so I'd certainly defer to @Kitty 's recommendations. Guessing i'll be facing my own one soon so am bookmarking this thread! Kitty made some excellent recommendations on a thread to me a while back about this too, but i cant flippin find it now, i had some tech issues so i cant find a bunch of stuff i'd saved now, but if we come across it i do wish we had a whole thread on this stuff because it does come up occassionally
Also being aware that if you give them too much info that they feel over-faced by they may just think 'oh i wont bother with this i'll just ask _____ i'm sure they'll know about it & can summarise it all for me'..... which could be unhelpful
there are a few different versions, as it is included in presentations for slightly different audiences (so if you google and want a longer one then you might find one that best fits) and I first saw this as part of a presentation for SolveME I think and there is a link I put about that on here and will try and search it out later if I can one of the presentations, this one with the flipping the iceberg slide up first is: Physical & Occupational Therapy for ME/CFS and Similar Chronic Illnesses 3/4 | Amy Mooney, MS OTR/L (youtube.com). there is a second-part of the flipping the iceberg slide at around 4.30 these are just the slides without speaking: PowerPoint Presentation (massmecfs.org) The following slides on their own (for some reason videos are harder to come up at the moment for me) for a bigger presentation which has suggestions about what ME is, PEM, pacing etc: Microsoft PowerPoint - Amy Mooney presentation BHC lunch and learn 5.16.2024 (batemanhornecenter.org) I assume there is probably a video for this somewhere on there
Yup. I decided it wasn't my job to educate them, so after realising the similarity between my needs and those of my elderly relatives, that's how I approached it. With people over 80 the focus is on making the effort of daily living safer and more efficient, so there are fewer risk and adverse effects. I was asking for home adaptations to do exactly that, so I used the same language. Edit: Accidentally deleted words added back to second sentence
Not completely sold on that word. Exaggeration of what? It does have some value, in that PEM is an extreme reaction to exertion.
From my conversations with other people, it seems like every local authority has its own way of doing assessments. Have you considered reaching out to local health support groups to learn what's been helpful for people in your area when they need support? In my experience, medical evidence was really important, but I've also heard that some assessments don't need as much. It might also be helpful to see if you qualify for a Care Act Advocate by getting in touch with organisations that offer services.
Thank you all so much for your comments, it was today and I'm mentally and emotionally exhausted so I will report back soon
