This blog is about chronic illness, chronic pain, and invisible disability awareness. I myself have chronic migraines, Fibromyalgia, asthma, hypothyroidism, depression, and hypermobility syndrome. I introspect about the experience of living with chronic illness and chronic pain. I also will post research and articles. Occasionally you will see book reviews or item reviews of things I have found. I write around average three posts a week, it is a fundamental pain distraction for me.
So why is the blog called the Brainless Blogger? I named it after the infamous symptom brain fog and fibro fog. A symptom that really bothered me when I was younger. I used to say pain would affect me physically but never mentally. And I was wrong. There are a lot of symptoms of FM and chronic pain. Cognitive dysfunction included. I have always preferred writing over talking but that is magnified now with chronic pain. I can organize my thoughts. I can edit. I don’t have to worry about words just falling out of my brain because I can use different words or use the mighty power of Google. Anyway, that is how I became the Brainless Blogger. Named after a symptom that frustrates me to no end.
I have been chronically ill in one way or another since I was a child starting with hypermobility syndrome that gave me joint pain and insomnia. It wasn’t until I was a teen though that the joint pain, fatigue, and insomnia picked up the pace and I was having difficulties. Skipping school to sleep and so forth. However, it took until I was 20 to be officially diagnosed with Fibromyalgia. I received no treatment for it though. I was told I was too ‘young for it’. Not sure if that was ageism or some gender bias thrown in there as well. Either way, it took until I was in my thirties to be put on Lyrica. I began to get migraines with aura when I was 20 as well. These progressively got more frequent as time passed. I developed persistent migraine auras. And migraine associated vertigo. Somewhere around 2000 they became daily and have been there since. Migraines they did, however, treat quite a bit or attempted to. I haven’t really responded to preventatives except mildly to Topamax.
The impact of all this has taken a toll on my life and career. Or what career more like. I was on an academic path when the migraines gained severity. I was finishing my Masters. It became clear I wouldn’t be able to go for my Ph.D. until I had some sort of effective treatment. I didn’t know at the time the most effective possible outcome for a preventative was 50% and I’d never see it. So I took time off to find more effective treatment. Which I never found, but did discover rapidly that working was much worse due to painsomnia and sleep deprivation issues. So I had a hard time just finding a job to maintain. I did eventually give up on the idea of even attaining my Ph.D. and just finding a career. To that end, I found a job at a bank as a lending/investment officer. However, the untreated pain was far too intense. Unmanaged pain and full-time work had the best of me. I tried to push through it and did for years. But in the end, it led to a suicide attempt. Then another. Things changed for the better when I changed doctors, was sent to the pain clinic and a new neuro as well as put on depression medication that didn’t have the side effect of suicidal ideation for me. The pain clinic told me straight up I could only work part-time so I changed roles to a teller at the bank to reduce my hours. And even this is difficult to maintain but far less stressful.
Then came the Vertigo. Came and never left. So I am now disabled. I cannot drive. I have difficulties functioning for any length of time without rest. And periods of time I need naps to get through the day. I cannot sit at my computer desk at all for any length of time without severe dizziness… so I now use the laptop on the couch, such is life. Same issue for standing too long, it is not possible. It has been a struggle to adapt to this lower level of functionality but I still persist in doing some things in peak functionality times (early in the morning) before the symptoms slump and things become so much harder to do. I also use a fancy schmancy cane now. Vestibular symptoms are non-stop but my medication dampens them somewhat. Motion makes them worse. As does any activity really. It is… a new level of pacing and lower activity.
My coping strategies have improved and evolved over time. However, I still deal with depression associated with chronic pain that compromises my coping at times. It is a difficult road we travel. I don’t always cope well with it. But the strategies I have learned have made me extremely resilient and I persevere.
Essay in Migraine Expressions book called ‘To All Those with Migraines: I, too, share your brain cramps.’
Reprint of article ‘Fibromyalgia and chronic pain in danger of being labeled a mental disorder’ in UK Fibromyalgia, April 2013.
Fibromyalgia AWARE magazine. Issue 2: “Finding Slumberland” in 2015
ProHealth: Allodynia and Fibromyalgia
8 things to consider for depression
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