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Waking up from a semi-coma

Sarah Tee

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Just some musings:

Since getting normal(ish) blood flow to my head over the last 6 weeks or so, I have realised just how much I was compromised cognitively. I’ve had the low blood flow every day for nearly 20 years, although it wasn’t bad at the start. The last 5 years have been awful.

Although I could function at some level, I had enormous difficulty connecting pieces of information in my mind. I would also be instantly stymied by unexpected questions, or strange or vague comments, usually in medical appointments but sometimes with family. Instead of saying “What do you mean by that?”, I would freeze mentally and spend the rest of the conversation and some weeks after like a rabbit in the headlights.

The other problem was that I would lose my composure dealing with bureaucracy, the bank, etc. Not conducive to getting problems resolved. I am pleased to say that on Tuesday I dealt with a very annoying medical receptionist and got her to do what was needed without losing my cool. At worst I was a little curt, but I managed to thank her politely at the end of the conversation and she fixed the problem. Hurrah.

Suddenly my head is clear, my body feels normal, and I can do whatever I want, although I am being careful not to rush things. Some symptoms that would have been diagnosed as mental illness and treated with anti-depressants have vanished, which is lovely. Lucky in a way that I never had the capacity to tell a doctor about them. 

I have been housebound for years now and I need new clothes, and a bowel operation, not necessarily in that order 🙂

Unfortunately, with this clear headedness also came the realisation that my GP had done a very poor job monitoring an unconnected auto-immune condition that I have. This dawned on me gradually as my brain fired up until the full reality hit me like a ton of bricks last Friday. I have spent the last few days going through every stage of grief. The damage is irreversible, and may have been preventable. I’ll never know.

What I do know is that if it had been monitored properly, I would have known what was happening, seen a specialist, and I hope received some counselling/support. Instead I had no idea, and actually thought it was in remission.

The hardest thing is waking up and remembering what has happened every morning. It’s not life threatening, but it is life altering.

Anyway, regarding my newly rejuvenated brain, I have been thinking back on Oliver Sacks’s book “Awakenings”, which I read aged 20 or so. I’m going to get a second-hand dusty copy and re-read it. My awakening is not nearly so dramatic as the folks in the story, but at least I can read a book again now. Finding connections in books and films and paintings is something I find vaguely comforting or rewarding or something.

I managed to read Lisa Sanders’s book “Diagnosis” a few weeks ago. It was slightly spoiled by the fact that I had read parts of it already that had appeared in her newspaper column. Did you all see she is the head of a long COVID clinic now? I hope she will write on dysautonomia in the future. It could be a boon to us.

Do you ever find comfort or parallels to your life in books or art or television programs?

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@Sarah Tee first of all CONGRATULATIONS to your newly returned quality of life! Is this due to CCB or because the autoimmune condition is being addressed? 

I loved the film Awakenings, and have compared it to my own situation many times! Actually any time I am in a flare I feel like the main character! 

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Sarah Tee, yes first and foremost, as Pistol so kindly reminded me, congratulations on your return to a more normal brain blood flow.  I didn’t mean to be rude and to forget to mention that.  I just got excited and thrilled that there might be an answer to improving brain blood flow.  Best wishes for continued improvement.  akj

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