In The Hitchhiker’s Guide To The Galaxy, we meet Hotblack Desiato, the lead singer of the loudest band in the universe, Disaster Area. After he doesn’t respond to Ford Prefect’s conversation (that’s David Prouse aka Darth Vader playing the bodyguard, by the way), we learn that he’s spending a year dead for tax reasons.
If you want to know what I’ve been up to for the last year, I’ll say I’ve been spending it dead for tax reasons. This reply is much funnier than the truth, which is that a year ago I was officially diagnosed with chronic fatigue syndrome / myalgic encephalomyelitis. I’ve actually been in bad health for two years. And this is why there hasn’t been a blog post here for 14 months.
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It’s been a tough time. In October 2020 it became apparent that doing my usual amount of exercise was resulting in me being exhausted for days after. I had a bunch of tests, all of which told me I was perfectly fine. I did my best to ignore the symptoms and kept up my habit of walking, and swimming, and bike riding. But it kept putting me in bed and I had terrible brain fog. In April last year a specialist gave me the official CFS diagnosis and my life went to shit.
I decided I had to try and rest my way out of it so I spent four months doing minimal work and no exercise at all. I lost all my muscles and fitness and nearly lost my mind. Exercise was a vital mood lifter for me and it was gone. It’s tough trying to deal with the idea of being disabled and having many sources of joy taken away from you. I couldn’t walk on the beach or go hiking or camping. I gave up alcohol and coffee and stopped going out. I couldn’t plan ahead because I didn’t know if I’d be too tired on any one day. I couldn’t film, couldn’t write much. I ended up staying home and being very depressed.
I did a ton of research and learned to pace myself thanks to smart watches and rigorous data-keeping. And things started improving after I saw some specialists. I’m now taking low dose Naltrexone and it’s really helped things. Also, it seems my hormones haven’t been co-operating so I’m now on top of that as well.
The other day I managed to swim 100m up the beach and it didn’t kill me. I can ride small distances, further on an electric bike. This is progress. I’m hoping to build up my fitness again. I’m also doing more work and my brain seems to have returned. Thank goodness. I’m feeling hopeful about my prospects again.
I’ve been watching the news of Long Covid with interest. What I am experiencing is the same as what millions of people all over the world are experiencing. And I’m hoping that more money gets put into research which will help them and help me. Because CFS is pretty much the same thing as Long Covid and research into CFS has been neglected for years. There is no diagnostic test, no treatments, no cure. It’s a medical wasteland. People with CFS/ME are regularly treated as if they have a mental problem rather than an actual physical illness. It sucks. And because more women than men have it, we experience the usual dismissal or minimizing treatment from the medical establishment. I’m hoping the sheer numbers of Long Covid sufferers can change that.
If you’ve managed to avoid Covid so far, my advice is to do your best to stay healthy. You don’t want Long Covid. Nobody should have to feel like this. I’ve managed to stay Covid free so far, mainly because I barely leave the house. I’m keen to avoid it for as long as possible. I can’t afford to get sick, it would set me back months.
In any case, I’m kinda back, kinda working, kinda still making porn. And maybe, just maybe, also blogging again.