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Autism and CFS/ME

I've been taking a break from social media and that has included this site as well. Sometimes I just feel overwhelmed by the very existence of other people, other times I am so absorbed in my interests I don't have time for social media. It has been both of those affecting me lately but in the time I've been away I've been really trying to get a handle on how to tease apart the CFS/ME and the autism as it manifests in my life and I've made progress so feel ready to write about it. I have an official diagnosis of CFS/ME, made twenty years ago but believed to be retroactive as far back as my early teens. My autism diagnosis is currently a self diagnosis although I am on a waiting list for professional diagnosis. Since many things, both physical and psychological, can cause a fatigue response, and since I've only had the CFS/ME to explain my experiences for the past 35 years, I was confused about how I might identify an autistic shutdown from a CFS/ME crash.

Although I believe my CFS/ME diagnosis is still valid, I also believe that it is not as severe as it once seemed or that some of what has been blamed on the CFS/ME is actually autistic shutdown. Fatigue can definitely cause cognitive problems, emotional difficulties, depression and overwhelm but the striking feature of CFS/ME is the inability to sustain physical exertion, and one of the diagnostic traits is swollen and sore lymph glands, particularly in the armpits. This is a symptom that I typically experience, more so than sore throats which is another of the most typical symptoms. My diagnosis came at a point when I could barely function because I was too exhausted to move my body much and I had developed lumps the size of golf balls in my armpits. Eventually my difficulties led to some significant life changes after making modifications failed to be enough. I found myself at a point where I did not have to work, was no longer raising a child, hired someone to do the housework and only performed very gentle exercise and yet I was no better.

I continued to have regular crashes, to have limits to how much going out and doing things I could endure and to feel exhausted and overwhelmed. Crashes rarely came with the physical symptoms of CFS/ME but often were just overwhelming need to retreat, rest, lie under my weighted blanket, have quiet surroundings, and usually drastically reduced my ability to perform basic self care. I can speak but my voice is often weak and pathetic sounding at these times. I struggle to find words and I prefer to avoid conversations. I might sleep more but often just spend time in bed without sleeping. I may or may not manage to feed myself but will usually eat if brought food. I will go for days without showering or changing out of my pyjamas. All of those features are also present during a CFS/ME crash but such crashes still happen regularly despite having drastically reduced the physical exertion required in my life. Shutdowns happen if I have had to go out for shopping, appointments, brief social events or manage the administration tasks of basic adult independent living, such as banking, bills and dealing with condo strata. The strain of sensory assaults and communication struggles, even the effort of a two hour coffee date with someone I enjoy can easily lead to some type of shutdown.

I can also look back on my life pre-self-diagnosis and recognise the types of situation I thought were CFS/ME being triggered but were actually shutdown due to overwhelm. While I have had shutdowns that were more drastic and obvious, the kind that happens in public and immediately, I am usually able to recognise it coming on and get myself home. The unexplained dizzy spells, giving out of my legs, blurred vision and confusion are embarrassing when they happen in public but do not frighten me. I make every effort not to draw attention to myself. Sometimes my brain shuts down as much cognitive functioning as it can get away with while still running my body. That can lead to some embarrassing situations too but I try to laugh them off. I think those moments of appearing utterly stupid are what I hate the most.

So to date I have official diagnoses of CFS/ME and Anxiety and have self-diagnosed as Autistic and ADHD. No wonder I am so exhausted! So much makes sense now even if I am only part way through the journey of addressing it. Figuring out what is CFS/ME and what is autistic shutdown has been really fascinating and helpful. I am so fortunate that my family is completely supportive.


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Clueless in Canada
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