Yesterday was my appointment at the ME/CFS Clinic. The news is. . .
- I really do have ME/CFS. I have been diagnosed twice, so there’s no arguing with it.
- There’s no miracle treatment but they think there are things I could try that might help.
- I have to wait for a phone call to make an appointment to go back.
- I am to start thinking about my future
So I have fallen from one wait to another, and likely there will be another wait after that, and another after that. . .!
Immediate advice I was given was to try using something called ‘First Defence’, which is a thing meant to help prevent you getting colds, and the other thing was to get zinc lozenges, which does the same thing. Anyone heard of those, or tried them?
I’m also to start thinking about what I want to do with my life (I think I might be slightly insulted) which feels like the ‘what do you want to be when you grow up’ question all over again. Being a bit before themselves aren’t they? I mean, there’s positive thinking and then there’s arrogance: just because I’ve been dealing with this without medical supervision doesn’t mean as soon as they get involved I’m going to improve. Maybe I will, but I’m not going to go sky-high with plans just yet.
Think I should tell them something outrageous just to see what they say?!
The other things that I have to go back to learn are ‘tools to help me manage my condition’. From my previous phone call I would guess it’s going to be Graded Exercise Therapy and mindfulness.
- Graded Exercise Therapy (GET) is when you gradually increases the amount of exercise you can do over a period time. The NHS supports the use of GET as a treatment for ME/CFS. The ME Association does not.
- Mindfulness is a technique used to reduce stress, anxiety and depression by increasing awareness and ‘living in the moment’.
I’ll probably do a post on of these in the near future – there seems to be a bit of controversy over both methods and it’ll be research for what I might be in for!
I guess this first consultation was mostly just to confirm I have ME/CFS, because I wasn’t really asked anything much about how I cope or the emotional side of things. Which makes sense. The consultant/doctor diagnoses then the occupational therapist takes it from there. I’ll probably have to do another round of questions when I go again. . .
That’s where I’m at at the moment then. Which is pretty much where I was before as far as I can see, except I have appointments and talking and whatnot to (ahem) look forward to. Oh, and when my Gran found out I’d been to see someone she asked, “did they say when you’d be over it?”
By the way, if you haven’t been inundated with the mindfulness craze please let me know. I want to know where you’ve been living so I can go there – it will reduce my stress levels! (No insult intended to those who practice mindfulness, I understand it is a legitimate technique that has had a positive influence on many people.)