Aah summer I never realised you didn’t have a diagnosis. The thing with CFS is that it’s a diagnosis of exclusion, so by just assuming that’s what it is, you could be missing something that they should really be testing you for. All sorts of vitamin issues, thyroid (NOT just the basic one) lupus blah blah blah. So it is well worth writing everything down. Unfortunately women especially are often just left with chronic pain and exhaustion 🤔😡 but there are several treatable things that could be causing it if they’d just bloody look. But you have to keep on at them to look.
I know what it’s like though to find it difficult to ask for that help. I was incredibly lucky that the doctor I saw when I first had post viral fatigue was amazing. In fact he wasn’t even a doctor he was a physicians assistant. But he GOT it.
I think although quite meant seeing an OT in terms of the CFS type symptoms (I saw one at St Barts and it was really helpful especially with pacing and work issues), it may be worth asking about when you have your ADOS. My DD was referred to OT when she was diagnosed with autism, and actually I’m considering asking if such a service exists for adults. The thing with your (not quite official but I think they basically already said yes didn’t they?) ASD is that it affects functioning in all aspects of life in quite unexpected ways. And that can have a knock on effect on your energy levels and physical health too. I have mentioned this before I think, but I have read that diagnoses of things like CFS/fibromyalgia are markedly more common in autistic people. We literally cannot cope with the same things that neurotypical people can. For a simple example socialising or even a bit of small talk at the bus stop/school gate is literally physically exhausting whereas others may find it invigorating or just feel a bit “talked out”. When I was still working, if somebody I vaguely knew got on the bus and talked to me I would sometimes literally cry afterwards because that one little extra chat would just send me over the edge into overwhelm and the work shift would be harder to cope with, small talk doesn’t come naturally and the intense thought I have to put into it coupled with the anxiety of whether I said something wrong or interrupted or appeared rude is too much. Sensory issues can mean that we are over sensitive to differences in lighting, sounds etc that others may not even notice, and that state of being overly vigilant is tiring and even painful.
I have major difficulties with something called executive function, I struggle to explain exactly what that means but basically I just can’t manage daily life like other people can, I can’t keep on top of anything and even habits like brushing my hair are not and never will be habits, they all take immense thought and willpower and alarms set on my phone because if I don’t then they just don’t occur to me and even when I do I still think “in a minute” and then I DON’T and then I realise I’ve not done it for days. I am chaotic and that is exhausting in itself.
For example making dinner. It takes me an hour or more to make a basic 15 minute pasta sauce. The coordination required to heat things up at the right time so nothing burns, to cut the stuff needed to be cooked first, to be careful enough not to cut or burn myself, to remember to put peelings in the bin so I still have space, to actually put pasta on, to not put the pan at the edge of the counter and knock it off, to not walk away to ask the kids something and then forget it’s cooking at all, let alone to remember to get the kids to clear the table of stuff I’ve put down and forgotten about earlier in the day, so that it’s done before dinner is finished rather than letting the cooked food start to go cold. I never manage the last one. Honestly doesn’t matter how many times I make the same sauce (and actually I do make quite tasty food) it will always be like that. I can’t “just do it” without wearing myself out and pretty much being useless the rest of the evening. If I can remember to even get the Caglets to take the plates out after I consider it a win.
And yet taking charge of the Caglets’ education and getting work done with them feels like a walk in the park. I’m loving it, and I’m doing well at it, I think, organising their projects and ensuring their progress, it’s lovely. I can teach piano and maths really well and I am, believe it or not - because the above makes me sound like a total imbecile - quite clever, I got top exam results blah blah blah. But daily life? Running a home? Epic. Fucking. Fail.
Sorry, I’m not even entirely sure why I wrote all that to be honest and sorry for boring you all 😳 and it is absolutely not written for sympathy either. But I hope you will get something out of it summer as I wonder if you struggle with some of the same stuff I do, and that may help you understand why you are not coping as well as you “should” be. That is NOT to say you don’t need some more physical stuff ruling out though, so please do keep on at the GP, and writing an activity diary is an excellent idea.💐 Because although he said it may be anxiety it’s not necessarily “feeling anxious” and I wonder if it’s more like “finding things difficult that most people find easy”. Because that sums up pretty much my entire life and it is why I am (a) so bloody tired and (b) extremely lacking in self esteem. Although the latter was helped when I was diagnosed because she said, for an autistic person you’re actually completely normal! 😂 But anyway I thought I’d say it all, however difficult it was to write 😳 because sometimes when you grow up that way you don’t actually know that it counts as “a difficulty” because of course it is all you have ever known. When I was diagnosed with CFS the professor asked me if I ever felt anxious and I said no. It was only later that I realised I have felt anxious my entire life and that is why I didn’t know. Panic is my baseline emotion.
ANYWAY. I am also enjoying the discussion about getting shit done. I need to channel some Frugaleer power! I completely agree with quite (I think that’s who said it 😳) about working smart not hard. This is what I need to actually corner DH to have a discussion about. Things need to get more efficient round here. Definitely making progress since the move (eg bigger kitchen ➡️ more batch cooking ➡️ less buying takeaway etc) but a long way to go. Unfortunately he is a jump in and do stuff person and I am a planner, I have to be because of all the issues I listed above - and the former is great for many things (eg he moved the living room around the other day when I would’ve just left it and I am really glad it’s done ❤️!) but the latter is needed to overhaul general day to day routines etc and I really need his help to get that all set up. That will have a knock on effect to frugality and all that stuff.