I’d be really interested to hear your experiences please. I ask because I have a number of health problems and the health services available to me only seem able to deal with one problem at a time and saying to them, “Yes, but I also have X, which means I can’t do that,” just gets you a disparaging look and labelled as uncooperative or a time-waster. I am certain I’m not alone in this, and I’m certain also that looking younger than I am and lacking mature social skills only makes their criticism more likely.
In addition to Asperger’s, I also have ME, endometriosis and chronic vestibular migraine. Here a few ways in which it’s a pretty toxic combo:
1. Asperger’s and ME
- Once my brain is interested in something, it can keep going and going, and I don’t notice my body fading until I completely crash and end up bed-ridden for days. I then get so frustrated with my body getting in my way that I self harm.
- Unexpected interactions with people make me so anxious that my legs give out. The situations don’t necessarily involve people at the time, such as a letter through the door, but require fighting my corner with someone to resolve. E.g. I received a letter from HMRC on Monday fining me for something I haven’t done; it’s now Thursday and I’m only just starting to be able to walk again, but just writing about this I can feel my legs giving out again.
2. Asperger’s and endometriosis
- I worry constantly about getting my period because sometimes it comes on heavily and suddenly and soaks through my clothes. It’s disgusting and embarrassing, I hate how I can smell the blood on me even when no one can see it, and the pelvic pain makes me feel poorly generally. Even on the pill, my cycle has been all over the place, and with my ME I often don’t have the energy to clean myself up and do other basic things like feed myself, so I always end up suffering one way or another.
- I’ve always hated having to go into work on period days; my stress and anxiety levels are always off the scale and masking that impacts on my ME, so I basically end up eating, sleeping and washing, with no energy for anything remotely enjoyable pretty much all month long. I know it’s an overreaction but hey, I’m autistic.
3. Asperger’s and migraine
- Chronic vestibular migraine is weird because you experience dizziness and nausea/vomiting rather than the classic pain. The ‘chronic’ bit in my case means ‘constant’; that is to say I am never symptom-free, I just have different degrees of bad. Meds haven’t worked, and one of them actually made me suicidal. It renders me housebound and is the reason I lost my job and my business a year ago. I was earning pro-rata £95k a year as a self-employed business analyst up to that point (I say pro-rata because the migraine started only 10 months into my first year of trading).
- Makes the Asperger’s worse because I struggle to mask now, and the extra struggle when I really have to mask makes the ME worse, and the stress of knowing I struggle to mask makes the endometriosis worse (more random bleeding throughout the month).
- Since being out of work with the migraine, I’ve been told I’m not entitled to any benefits. I don’t have the physical or mental energy to fight this at the moment so I’m sleeping in my living room and renting out my bedrooms to pay my bills and mortgage. Both lodgers usually work long hours, but occasionally, randomly come home early, and it completely freaks me out. My home was my one safe place in the whole world and now I cower here like a terrified prisoner. If they come home early and I haven’t had my dinner yet, I just go to bed hungry rather than risk bumping into them in the kitchen and being forced into small talk, which just wipes me out. If I wake up in the night and need to pee, I just lie there for the rest of the night with my legs crossed until they’ve both gone to work. It’s easier on the weekends because my boyfriend is here and I can deflect things onto him, but I’m now constantly anxious in my own home which I hate. I also have noisy neighbours which I can’t get any respite from and makes my stress, anxiety and migraine even worse, and impacts on the ME too.
Sorry this is such a ridiculously long post but I’m really hoping it resonates with other adults with ASD, as it would be good to know how you cope (or don’t, as in my case).
My aspergers means i cannot process stress. 20 years ago, my life became very stressful and I developed ulcerative colitis - a classic stress-trigged disease. When my life becomes stressful, my health deriorates badly. I'm intolerant to all the normal meds so I quickly worked through them all until I ended up on some nasty immunosuppressants which took away my immune system and left me wide open for attack - I developed viral encephalitis which has badly damaged my memory and left me with CFS and chronic pain - and a number of other annoying health problems - and now I'm steroid-dependent with adrenal problems.
And my health still deteriorates with stress.
It broke my heart reading that. I’m so very sorry you’ve been subjected to such terrible care at the hands of those who operate under the pretence of the ‘caring profession’.
I think my ME, chronic migraine, endo and other sensitivities are all largely down to my inability to process stress too, as there is no family history of any of it and I’m the only one in my family with autism too.
It’s absolutely horrific that they put you on immunosuppressants. Have you ever considered suing them for damages? It’s not right that you’ve been left permanently disabled and having to struggle every day with all that entails because of their poor clinical judgement.
Have you ever come across Dr Sarah Myhill? She has a strong track record of treating ME/CFS via gentler means, and helped me go from being completely bedridden to holding down a full-time job, living independently and being able to buy my first home. She also gets that, y’know, you feel like hell, so can arrange for all tests, consultations and treatments to be done remotely (via email, post and phone), which suited me perfectly.
Do take a look at her website if you can. Even if you can’t afford the tests, there’s still loads of treatment advice you can try out for yourself, which follows her basic programme of care for all ME/CFS sufferers.
I really hope you have some better days soon. Xx
I doubt I'd get far with suing anyone - it's all standard treatments that, unfortunately, screwed me up.
I used to work full time managing the colitis - it was really difficult. The addition of the brain injury made it impossible to juggle so many conflicting symptoms - as I stabilise my body from the colitis symptoms, it takes so much energy that I run out of energy. The pain is a real problem and my memory lets me down it inopportune times. It takes a lot of planning to guarantee a day free of symptoms - it involves taking a load of drugs that all have their major after effects. I've resigned myself to the fact I'll never work again - my body/health is too unpredictable - so my challenge is wringing out the most *life* possible from what health I've got.
I'm a super-qualified chartered engineer and I'm capable of doing anything - just very, very slowly
I completely understand.
I also run out of energy trying to manage symptoms and treatments for my other health problems. For me, the chronic vestibular migraine has been the thing that pushed me over the cliff-edge again.
I take magnesium for pain and COQ10 (or ubiquinol if you can afford it) for memory; it's not a cure but it does help (i.e. I feel noticeably worse when I don't take it).
I'm worried I'll never work again either. I've lost all confidence in my health and my body's ability to function even vaguely tolerably. Well-People simply don't understand what it's like trying to live with unpredictable health, and I get sick of relatives in their 70s with more energy than me telling me to get a job. My neurologist said chronic migraine can either go away of its own accord when you hit the menopause, or get significantly worse, and there's no way of knowing which (plus, I'm only 37 so the menopause is some way off).
Good and sad in equal measure to know I'm not alone.
I suspected you were a snail-paced smarty-pants too. Out of interest, how do you cope with the frustration of your body packing up before your brain has had its fill? Or do you find you just forget what it is you were doing (because I think that's the only thing that saves me sometimes too)? I'm still trying to save the world, but struggle to do it from my sickbed as I just don't have the energy to relentlessly pester people or y'know, go out there and be seen like Greta Thunberg.
I used to be a high-flying engineer - I have literally done things to change the world. Unfortunately, due to my position, my priorities have changed from trying to fix the world to trying to fix my world. I've handed the baton on to the next person. Being an activist is only useful if you have the energy to back it up.
I take Tramadol for the pain, Naproxen for the migraines (I get about 20 mins warning with flashing lights & patterns in my left eye) and the usual pain killers for managing the smaller pain.
Most of the things i do require a lot of thinking and preparation - I can do that from the sofa.
Plastic said:I used to be a high-flying engineer - I have literally done things to change the world.
That’s amazing! I envy you. I’ve never really got going with my career because health problems keep laying me out.
I think you’re right to focus on fixing *your* world and that’s incredibly safe advice. I need to do that too, but I can’t quite give up on everything else just yet—not least because I have two gorgeous nieces (aged 4 and 20 months) and I don’t know how I’ll tell them I could have done more to fix the world when there was still time to act. I find all the news stories on climate change and biodiversity loss so very deeply upsetting that I cry—sometimes from sadness and sometimes from frustration over my inability to act.
Looking after kids is still a brilliant thing to do - so much reward! And you're gettting them for the most fun years! We're looking to move in a couple of years - we're moving to the countryside and going as far off-grid as possible - generating electricity, water-harvesting etc. to be as low-impact as possible. I can't change the world any more but I don't have to damage it. We're looking into hydroponics too - should be able to self-cultivate almost all fruit & veg we'll need and then barter the excess for whatever we can in the local economy. And it will be healthier.
Autie Eco Hero!