Friday, 4 December 2015

Life | My Confusing Fatigue Syndrome; Why I'm a Spoonie


This is something I have to explain so, so often, and has recent developments which involve more explaining - so I thought I just whack it here to refer people to. I don't have relevant pictures, so have dogs from my Instagram.

A long time ago, in a galaxy called the Milky Way, a lady named Lisa almost passed out during her second yoga pose of the day. This was not normal. She mentioned it to her doctor during a routine check up, and ended up having a good old conversation about fatigue. It became apparent that she was suffering from chronic fatigue, and she believed it was likely she had Chronic Fatigue Syndrome. This didn't come as much of a shock to Lisa as some of her friends have ME and had mentioned she might have it. She had very little energy, mental or physical exertion exhausted her beyond reason and she took ages to recover from, well, anything.

Diagnosis for ME/CFS is a matter of elimination. They give you a gazillion blood tests for everything that can cause fatigue and rule out anything it can be. As these all came back negative I was referred to the local ME/CFS clinic. It also means it isn't caused by my veganism - suck on that, ignoranuses :P.

After weeks of waiting, my assessment at the clinic came. I had a long, detailed chat with a specialist. My long history of mental health problems such as depression, anxiety chronic insomnia and anger issues causing sleep deprivation seemed to be a big factor in why I was diagnosed with exhaustion whenever a year of uni ended. I wasn't, however, allowed to rest after these diagnoses as I had a job and a mother who didn't tolerate "laziness". Not resting is something I've become very good at. Overworking, too. So to the specialist, the fatigue came on in a very logical way, over a long period of time. As the diagnostic criteria back then required a sudden onset, this wasn't looking good for a diagnosis. He actually said that having eating disorders in the past meant he couldn't diagnose me, too. Which is bullshit. As I had suffered a sexual assault a while before this assessment, he decided I was being affected by PTSD (while I actually had RTS - a complex form of PTSD) enough to be causing fatigue to some extent. Which was also bullshit because I hardly had any symptoms and was 99% fine. I dealt with the symptoms that came really damn well. He diagnosed me with Sleep Deprivation and PTSD and made me sought the same pacing counselling they'd offer me for CFS, and gave me a run-down of the Graded Exercise Therapy they'd also offer me, so I could give it  DIY bash. So basically I lived the life of CFS without officially having CFS. Yay.

My doctor knew the PTSD diagnosis was a load of tripe as much as I did. She believes they just bounced me back with that diagnosis because I didn't tick every box and they're not very good. She decided to refer to it as chronic fatigue and I do the same, but it confuses people. It became so much easier to say "I basically have ME" or "It's like ME" because more people know what that is and saves the huge explanation of ... all of the above. When it came to tagging online, I would use chronic illness and chronic fatigue but would also include ME and CFS in them, as people with those diagnoses could relate. I've also joined groups on Facebook where ME/CFS support each other purely because they're the only people who make me feel like I am not alone. They get it. Our lives are very much the same and I need support, a lot. Since I have been writing this blog though, I have been worrying about people thinking I have it when I don't, or thinking I'm lying, or have diagnosed myself. Driving me to push for a second opinion, especially as my mental health has actually been fine, for years, and the fatigue isn't really going anywhere. In fact, it's the only thing that fucks up my mental health when it gets really bad - this is only for a few minutes at a time though. Thank god. My doctor even prescribes me painkillers for "ME Pain", I've seen it on her system. She knows more about it than any GP I've ever even heard of. All the local ME/CFS patients have her - she's awesome. The whole thing has been confusing my brain though.

Lately I have developed symptoms of Irritable Bowel Syndrome. Now, up-to-date CFS research agrees that a gradual onset of symptoms is a thing. The diagnostic criteria is like a complete description of my life. The fatigue was explainable once, but now? It's been getting worse and so
is bit harder to explain away. IBS is such a typical development of ME/CFS and to me and my doctor, I have such a textbook case of it. This has been driving me round the bend for months, now. I just need a diagnosis, any diagnosis, of a real illness. I don't know whether I'm allowed to drive, give blood, what to put on official documents, anything. So, last week, my doctor and I decided to start the diagnostic process again and I had blood tests for anything and everything that could be picked up and cause fatigue.

Now, here's a fun thing - I have an underactive thyroid! Yay! This is TREATABLE. They can actually give me drugs that do things my body can't anymore. Fantastic. My doctor did say that it was the beginning signs of it, however, and as it wasn't picked up last time I went though all of this, it probably doesn't explain the fatigue full stop, but is something. It might explain why the fatigue has been worse lately. Which would be great. If I can get back to the baseline of activity that doesn't ruin me that I was at this time last year I will be stoked! Of course, this means no referral to the ME/CFS clinic, which is quite nice, really. She doesn't has much faith in them, which worries me. It took a long time of good mental health for her to let me take the on again!

If I have the same issues when we get the treatment for that sorted, then I may well be on my way back there. For now, though, I have something we can treat. Which is amazing. Let's hope Thyorixine helps! :)

So there you have it. Years of little spoons without being in the proper diagnosis club explained!
I hope it makes as much sense as it can. Thank you for reading this,

Big love,

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