Talkin’ Chronic Fatigue Syndrome

I’m going to take time to talk about something I should have been talking about all along, and not just to my adoring readers but family members and those people who handle my government disability payments. I’ve not talked about it because for a long time I thought I got a handle on it, even cured myself of it but now I know that’s not the case it’s still something that’s difficult to talk about because it makes me look weak.

This may come a surprise to many of my detractors (trolls) but I don’t want to look weak. It’s bad enough I almost pass out every couple of hours without eating, this is something that won’t go away every time I pop in a sweet glucose treat. I’m talking about chronic fatigue syndrome. It’s a condition where you only have small amounts of energy that gets used up fairly quickly, and once it is you are left exhausted, unable to carry on with the most basic of physical tasks.

In me personally, my mental energy becomes non-existent too. The cause seems to be from being bedridden for weeks or months on end. Think what a polio survivor had to go through. Now assholes will call this a first world problem but I tell you now if I lived in a third world country with this condition I’d surely die, and I often do imagine myself in less than desirable situations, harsher environments where I’d have to live off the land and try to cope with my many ailments, like primary dysmenorrhea – but’s neither here nor there. Men can look up what that word means.

But back on feeling weak, I hate it. I don’t want to feel pitied. I’ve been pitied enough for my autism. Feeling pity really strikes a blow to my dignity. People can’t help it. They’ve grown up in a world where people with disabilities are looked at as hopeless, something to be pitied as though that makes us feel better. Nothing could be further from the truth.

So, it gets hard to reveal those things that do disable us for fear of being accused of making excuses or wanting pity, when all we really want is some understanding and maybe not being put in situations that make our conditions worse. If you know me you know I’m quite open about my crippling anxiety and my depression that has made me feel suicidal so many times I’ve lost count. Those two things also reveal a weakness in me, a difference. Yeah sure, there’s a meme that says people who deal with these things are actually strong of having survived them, but they drain you of your mental and physical energy. They make life harder to live. You live a less average life when you live with mental illness, or autism, or ADHD, or hypoglycemia, or chronic fatigue. And I got all those things. They stack up and weigh you down. I’ve also got epilepsy but I have a handle on that, mostly.

I’ve always been able to hide my chronic fatigue, to stay on top of it, as serious as it is it was never life threatening. That was until a few months ago when I felt like I was going to collapse. I could always avoid it, because I wasn’t doing too much. I could rest when I was tired and pick up from where I left things after I got that energy back. But working just 8 hours per week and going to a gig on the weekend plus spending a full two to three days editing and uploading photos is just too much for me. Doesn’t mean I’m still not doing those things. Stress and anxiety and the stress from depression can also speed up the process of a CFS crash and I’ve always got an abundance of that.

Time for a little background history on how I became so fatigued: when I was 13 years old I caught a cold, which I thought was glandular fever – turned out it was pneumonia. I spent 4 months off school which I only remember because my teacher angrily made me aware of it. It affected my grades and I was in remedial classes before that. My usual childhood energy had dissipated. I just didn’t feel like doing things anymore. I felt like I was robbed of a normal childhood; I was just coming out of years of being a selective mute which meant I didn’t talk at all in some environments – all of those places that were not my home. I didn’t do much talking at home either. By the time I was 15 I was talking a little bit more. Might have even ordered food on my own. I had no energy to do much though. I’m introverted too and we feel the energy drained from us in social situations, add CFS to this and I may as well just have fallen asleep in front of everyone. I remember I used to rest my head on my splayed out arms on the church lunch tables back in those days.

It took me many years to realise my lack of energy wasn’t just because I was a teenager or because I ate mostly junk food. It contributed but it wasn’t the main cause. In my mid 20s I started to eat healthy and exercise and felt some of that energy coming back. I thought all my issues with a lack of energy were put behind me. But that wasn’t the case. I just wasn’t doing enough.  I was put on Ritalin when I was 24 because of my ADHD so I began to do more; learning advanced math, physics, starting to write my own novels – the usual things. I was wasted after just one day, sometimes just a few hours while the pill was still working in me. Eventually, I had to stop taking Ritalin because it was actually making me manic. I should probably mention that I still have a mood disorder of sorts because I tend to bring up my symptoms a lot. After a year without Ritalin I started to go back to normal. What is normal for me; completely unfocused, unorganized, forgetful, introverted, lethargic, apathetic, emotionally reactive, and with limited energy reserves.

To the observer my energy seemed normal as long as I paced myself. A medication damaged brain meant sensory sensitivity and a deeper sense of when something was going wrong with my body, which meant I could stop myself before I became exhausted. But then the government decided I could do some work despite being on disability. My disability was severe anxiety. I had only briefly mentioned that I had chronic fatigue, and my anxiety is manageable at work (though I have about 3 different shifts in mood – mostly depression and hypomania) and it happens to be the kind of job I can slow down in and it probably only gets noticed by other employees who don’t say anything and when they do I just glare at them. I’m the only one allowed to have a lunch break because of my hypoglycemia. But once I exhaust all my energy balanced blood sugar levels don’t really make much of a difference.

I get angry when I have to work more days because of another condition that makes me bed ridden for about two to three days. OK, it’s severe period pain and it’s getting on my nerves. I’ve started to pop muscle relaxants like they’re tic tacs.  I feel like my employer is not keeping with the deal that I’m only supposed to work 8 hours per week. I can push it to 16 hours but I can just make it. Push just one more hour out of me and you’re going to have to call an ambulance.

And that’s what makes me feel weak. I have at least 3 conditions that make me feel physically weak. I can deal with having a differently wired brain, even mental illness. But physical weakness – it’s like having energy is like the only good thing I’ve got going for me (probably why I enjoy the mania) but it doesn’t last long. It’s nothing I can simply cure with healthy eating and exercise. I’ve tried that and I continue to do that. The cause to chronic fatigue is still a mystery to me. I can only guess that the brain sees that the body is inactive for a number of weeks, months and shuts it down to save half the energy, but there’s no releasing that full amount of energy ever again.

What a person with CFS really needs is for others around them to be understanding and acknowledge that it’s really happening. They need to allow the CFS sufferer to pace themselves and only do as much as they think they can do, and when they know they’re about to exceed that then they can stop for the day. Usually when I get tired from doing something I get anxiety about getting tired about doing that thing again. I always have to reassure myself that if I pace myself better I might not get tired again. Course, I always get tired. So, it’s a simple matter of letting myself know I’m not going to be tired forever. In this impulsive and fast paced impatient world there’s not many who are willing to slow the fuck down and realise not everyone is going to be capable of doing the same things as them at the speed at which they can do it. But chronic fatigue is a very real illness, even in someone who is at times impulsive and hyperactive. It’s just as impairing as back pain. Might not be as painful but when you’ve got zero energy you can’t even go to the toilet let alone clean one room in the house or work for just 10 minutes. But with understanding and patience CFS can be less of a burden on the sufferer, as long as they’re allowed to pace themselves.

Note: I actually did a bit more reading up about CFS after writing this whole post, so I’ve learned a few more things, like it’s tied to hormonal and blood sugar issues, even sensory sensitivity. Maybe one of these days I’ll write about it in a more sciency way, but right now I’m so tired. This post is just one of three I’m writing over the next two weeks too.

Here’s a good link to read in the meantime