Published on 12, July, 2020
Hi everyone,
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).
I have loads of allergies and intollerances which I'm led to believe is common in women with ASD, I get into about an A4 and a half list if I have to put them all down. My GP's surgery know me as the woman who's allergic to everything, but at least they dont' try and tell me I'm imagining it or it's not important that I'm horribly allergic to latex, or pennecillin, they do get frustrated at my pain killer allergies, basically I have paracetamol or nothing. I used to suffer terribly with my periods, I couldn't use the pill or any other hormonal stuff, caps were made of latex and I was allergic to the creams and gels. I'm so glad that I'm post menopausal and so much has settled down, but I was surprised at how many other health conditions came to the fore, like fybromyalgia. All my adult life this had been either ignored or thought of as period related, I was talking to one of my GP's about this and she said it's a flaw in medical training, if you're a woman of child bearing age then they're taught to look for a gynaeological solution.
People always say that one should build a strong support network, thats something easier said than done, as we get older we don't have the natural "in's" with people, we don't go to school or college, we don't meet other parents at the school gate and often we dont' have collegues. Also I'm not a social person, I do have a small group of friends who I walk my dog with, but the last month it's been disrupted due to ill health and holidays, I've actually found it quite liberating. Another thing with socialising is where and how? I don't drink alcohol, there are many foods I can't eat and a few I don't like, I'm pretty much vegan due to allergies and intollerances, none of the restuarants around here cater for me, I might find a starter in one, a main course in another and maybe a pudding.
I feel that I'd rather pay a professional to do the things I can't, than rely on friends and support networks, I find it easier to say no thanks to a professional where as with friends theres an implied obligation to return the favour, something I struggle with.