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.
Yes, I have inertia too, and it's worse when I am tired or stressed.
I suppose my hand was really forced because I went back to academia it became prudent to fill the gaps in support I actually require. Needing instructions in bullet points etc....
Although i keep coming back to the idea, and have discussed with members here who are in a similar boat - which has been very very helpful....I don't know what an adhd diagnosis would achieve for me. I have a very clear idea of what my areas of "difficulty" are anyway.
out_of_step said: I think there's elements that once something becomes familiar I lose motivation.
Ah yeah I get that, it's the variety seeking that comes from ADHD, one of the reasosn why I do'nt have a special interest but I have a rolodex of stuff I enjoy on a more intense level than other people. Also why I can eat anything on a menu regardless of colour/texture (as long as it fits a plant based diet because meat and dairy set off my IBS). I don't know if you feel the same way, but I didn't realise I had ADHD masking my autism, for decades I just thought nah they had got the autism diagnosis wrong and I was just a bit of an air head who is rubbish at people-ing.
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!
I think it's finding different techniques and I've tried all sorts but it's the sticking to it that is difficult. I alternated between demand&choice, cognitive&physical with rests in between when i was planning. So that spurred me on. It's like anything though, I get all excited and think I've cracked it then it just fizzles out. It's like this with interests and other aspects like yoga which i know help. I think there's elements that once something becomes familiar I lose motivation.
I just feel like my mind is a sieve and I'm playing catch up with myself which ends up using more energy. I know I'm too hard on myself sometimes but it's frustrating.
I feel post it note is a bit seat of the pants for me. I could make use of technology and apps and have everything streamlined but haven't really got the means to do so. I prefer pen and paper.
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.
Not diagnosed as it was miscontrued to be a symptom of depression for many years but even though I am not depressed any more I still never feel like I have a full charge on my "battery" doesn't matter how much sleep I do or don't get, I just cannot go non stop doing all the things my otherhalf does in a day, I'd be burnt out by 3pm and good for nothing all evening if I didn't very carefully prioritise what needs to be done in a day vs what I can get done in a day.Also there is no routine, only the chaos I try and fit 1-5 major things into the rest of my day as and when I A, remember to, and B, have the energy to do it, no "at this time I planned" because I'm time blind and even if I do notic a certain time of day the inertia might act like a chronological PDA and go "f*** this arbitrary number on a clock".The best way out of it I found is to put your 3 most important things you need to get done on post-it notes right besides or on the kettle (with copies on the back of the bathroom door if you can remember to make copies) that way you remind yourself about the things sporadically through the day, then only aim to get the smallest one done and make the other two like whatever if it gets done it gets done if not then it doesn't, it sounds unproductive but if you have been doing through many days of getting absolutely nothing done then low demand just get something done is still a step forwards. Also I found doing the small task first is like a yay I did it boost that makes it easier to try do the second and third things by getting a dopamine boost for minimal initial energy expenditure to set off the completion-dopamine-mining to see me through a few more bigger tasks.