Published on 12, July, 2020
I'm into my older years now so suffer from tiredness anyway but I find myself exhausted more often and I'm sure it is the autism. I'm interested to hear how you cope with this? I found it stops me doing the things I want to do and I end up sleeping more. It's frustrating because I really want to do things but I can't because of the exhaustion.
Check with a GP your levels are ok such as b12, iron etc. I don't know your age or if you are female but I think menopause can contribute to exhaustion. Have you had any viruses such as covid? That could make you fatigued as well. These things which can make anyone exhausted, I think if you are already prone to it, can really exacerbate it.
I've realised since my diagnosis last year that fatigue is a fact of life. Try energy accounting or keep a diary of activity. Rest before your battery gets empty. Don't boom or bust. Be kind to yourself. Resting isn't wasting time, it's giving your body chance to recover. Its hard when often we can't read our own bodies or needs because of alexithymia or poor interoception. I've learned the hard way as covid tipped me over the edge but i think i was burning out al ready way before that. But it has made me stop and assess things. It is hard though to find a balance but you need to find a level which is sustainable. If that means reducing what you used to do, for now, that's what you need. Prioritise stuff. Then once you start to feel better you can slowly build it up from there. Once you accept fatigue is part of your life and you cant do everything you used to be able to, you can learn to adjust. I find yoga and meditation helps too.
Hi ! Thanks! This is very useful advice! I think like you say, I often don't even notice that I am getting burnt out or how exhausted I am until I just completely collapse. I will try some of your suggestions. Did you have long Covid? I did too and the fatigue then was horrible. It has now been 1.5 years and there have been lots of things going on that could contribute to fatigue so it is hard to say if I still have residual effects from having had covid...
Yes I have. As I am starting to turn a corner and feeling more recovered, the fatigue isn't as acute but is still there. I now recognise this type of low level exhaustion was there day in day out, especially after work, long before the pandemic. It's a shame it has taken this for me realise but you just think it's normal, it's like this for everyone or its not really that bad. Having a physical illness makes the reason for exhaustion more tangible so a bit easier to deal with and for others to accept. I don't think "I'm fatigued because I am a masking autistic" would cut well with family, work or the GP. Even saying it's from covid is difficult for others to see because they may have just had a sniffle and think the pandemic is now over.
Are you feeling more recovered now?
Yes it sounds like you are doing a lot by looking for support. It's a fine balance. I had CBT and I've realised now that "tolerating anxiety" while it can be helpful, can also keep one in situations which are not suitable. The anxiety doesnt get any less. I used to disagree with Luke Beardon's idea that changing environmental factors is a good way to manage anxiety for autistics (this to me seemed a cop out because anxiety is part of life) but now I can see this is actually really important. Less anxiety = less fatigue or better managed fatigue.
Yes, I know what you mean- I am also reaching out for help (eg. I am on a waiting list for CBT, I am going to see someone who has experience in mentoring/therapy for autistic people and will see if I can afford occasional sessions, I am reaching out to GP, looking at any support in my area etc., talking to people here). But in a way organising support is a way of helping yourself too :) but I think for me it's about how I think about the support. Because like you say, even with support we need to make the changes ourselves and be proactive. In the past I think I put too much reliance on support, instead of focusing more on doing what I can to help myself.
I'm sorry you feel that way. When we get a diagnosis it gives us answers but then often the next steps are not available. Or if they are there are huge waiting lists or a one size fits all approach. It takes time to integrate a diagnosis into your life. I think this forum is good. I think something which helps is talking to other autistic people to help us get a sense of things. I think a lot of the integration is about making sense of things and understanding ourselves.
Also im not saying it's up to us to do everything by ourselces as there are places and people who can help (altho it can be hard to come by) and I find asking for help difficult. I'm talking more about, it's OUR choice to do something or not. This is something at my age, I have only recently learned. My wise friend says "you always have a choice".
Thanks. Yes you are right- it's easy to fall into this mindset of hoping for/waiting for someone to 'rescue' you. I was very upset recently as I was struggling so much and I could not find any support for autistic adults and felt very alone- but oddly once I realised and became more accepting that I was probably not going to get much support, I felt much calmer as I knew that I had to try and figure it out myself as best as I can.
Don't be sorry as everyone's experiences are valid and what you say, someone else might be able to relate to. It's really hard when you can't see a way out. I tend to go in one direction unless pushed another way. It's also hard when you can't apply previous experience to the current situation. I think that's why I got into the mess I did. I've learned that I am the only person who can change things for myself. No one else will do it.
Yes it can be difficult with friends if they don't fully understand. They take it personally.
I am so pleased that you managed to have a break and to get back some energy and that you have figured out a way of living and working that is sustainable. It's so nice that you have a good support network too. I am luckily now also in a place where I have a few friends. But I am too exhausted for much socialising at present and some of them find it hard to understand that I am too exhausted sometimes to meet anyone.
What you are saying is so true- it is not sustainable, not healthy and probably not worth it. I need a break. At this point, I am just struggling to see another option and I can see myself heading for disaster. In the past my body just gave up and forced me to stop (as I unintentionally loose too much weight) and I know I am heading the same way and I just don't want to go there again. I have only received my formal autism diagnosis last week and I am trying to figure out how I can get some more support. What I really need probably is a break as well as help managing stress/anxiety etc. however at this point I am at loss as to how I can make this happen. And the knowledge that I am probably heading for disaster is not helping. I'm sorry. Maybe I should make a new post about all this. I didn't intend to start pouring out all my issues in this post. The issue of exhaustion resonated with me and it just all came out...