Published on 12, July, 2020
I wondered if there was anyone out there who has a diagnosis of chronic fatigue - CFS or anything similar. AND is autistic/adhd. How do you manage sticking to what you have to do?
I know exactly what I need to do re planning, pacing and prioritising. I've had input from health care and have a good understanding of how it all fits together. The problem I have is in sticking to what I am supposed to do (which is writing down a plan for the day and following it, building a routine and following it). It seemed to go out of the window when I got discharged from the service (I was left to get on with it myself as had made good progress). The additional bank holidays have thrown me off as well. I can't get back on track and the fatigue compounds the executive function difficulties and lack of routine I now know I've always had. I have a diagnosis of autism. I wonder if there might be adhd elements in the mix but cannot be sure.
I have lists and notepads but forget to check them and feel I'm flying by the seat of my pants.
I don't know why I'm writing this other than I'm struggling a bit.
I have debilitating fatigue with my arthritis, and probable ADHD as well my diagnosis of autism, so I can relate! My energy levels are so poor that I often do not succeed at sticking to what I have to do. Or at least it takes a ridiculously long amount of time, like all day to do one little thing, or all week, or gets put off for months...
I could not write down a plan for the day and follow it. I do not know when I wake up how much energy I have that day. The number of times I wake up hopeful of being able to get something done, and then when the time comes find I cannot face doing anything and then get in a state because I am upset about that, which makes it worse! Yet on the few days when I do actually have a little bit of energy I do happily get on with the things, so I do think it is lack of energy rather than a basic unwillingness to do the things.
So I have to have a general list of things which need to be done at some point, preferably soon, and a calendar list which lets me know if any of the things actually have deadlines. But as you say, I don't always remember to check my lists! Just as well my life is such these days that I have very few things with deadlines.
It does sound like you might have ADHD in the mix too. I have recently got some help from an ADHD coach which is useful, and some counselling as well. But I haven't yet found a solution so I can't help you there, just say I struggle too.
I think some of it is lack of energy and some of it is inertia. On the days I'm in work, I know what I have to do and my "down time" is resting. So I have given structure. The problem I have and have always had is during the periods I am not in work is making tasks meaningful so that my down time is also meaningful. There's a lot of flim flamming on my part. There's also struggling to recognise how I feel sometimes but i am getting better at that. I don't seem to have any foresight that if I do X then I might get PEM.
I need to keep my brain busy. On the opposite side of the inertia, I get too focused on something without a break and that sends me under too. I was offered some coaching last year but the organisation got placed into special measures and closed. I don't need anyone to hold my hand. I know what I've got to do. I just feel like I need to reset my methods however I keep saying this. Talk is cheap but where's the money!
Yes, I have inertia too, and it's worse when I am tired or stressed.