So yeah, this chronic illness that I have is very, very misunderstood. It has been misunderstood for many years, and will probably be misunderstood for many more to come.
However, there is more and more talk about it in the medical community. More and more doctors are realising that it is in fact a ‘real’ illness. (as if there are fake ones?!) More and more people are talking about it. More and more people are taking it seriously.
And with all this talk about it, come more people trying to understand it, which brings even more misunderstanding.
Let it be clear before I delve into everything else: nobody is certain what can and will actually help people with CFS, because you need to understand the cause of an illness, to truly cure it. But more and more people are coming up with their own way of ‘fixing’ it.
I want to make a few blogposts about what I have learned about all of this through all my therapies, talking with other CFS spoonies, reading articles about it all, and living with CFS every single day. I want to write down my thoughts and ideas. And try and make sense of this whirlwind of ideas and theories and quick fixes that has been thrown at me over the past few years.
I will start by trying to explain how I got this ill. Or at least, what the current ideas are about me getting this ill.
(you will notice I am using waaaay more of ‘these guys’ than a normal person should in a single blog post. I guess I can’t write any of this bullshit without making sure you realise I don’t believe all of it. Sorreehhhh :3)
It’s fair to start with a lil’ bit of theory. And the most prominent, and dominant, theory about how to ‘cure’ CFS/me right now, is The Pacing Trial.
The open-label PACE trial was designed to compare efficancy of cognitive behavioural therapy (CBT), graded exercise therapy (GET), and adaptive pacing therapy (APT), when added to a standardised intervention resembling usual care (specialist medical care) as treatments for chronic fatigue syndrome.
This trial started in 2011 and was seen as a breakthrough in how to treat CFS/me. There’s a lot of information to find online if you want to learn more. But the basic conclusion is that a combination of Cognitive Behaviour Therapy, Pacing and Graded Excercise Therapy are the way to help people with CFS/me recover. They painted a pretty picture with lot’s of positive outcomes.
This trial is what my entire therapy regime is based on. It’s what pretty much every doctor in my part of the world now believes in, and what they act on. Unless of course they believe it’s not a real illness, in which case they don’t act at all, and let patients just wither away, while at the same time telling them to ‘smile more’ and ‘suck it up, we’re all tired sometimes’. Which is a whoooole other story.
Since coming to the forefront of the battle against CFS, This trial has become highly controversial. The methods used, and the way conclusions are drawn, pretty much the whole study is shrouded in too much mystery to be considered scientific. And fortunately lot’s of proper scientists are calling them out on it. But I’ll probably get into that in later post.
For now we’ll delve a little deeper into the therapies I’ve had. Of course I wrote about all my therapies in a previous post, but I want to use these next few posts to explain the theory behind it and look at them without the rose tinted glasses I wore in that previous post.
First I’ll tell you about why my therapists think I ‘feel’ this ill. And some of my thoughts and feelings about that, now that I’ve finished their therapies. This is a personal blog after all, mustn’t go too sciency on y’all.
The next bit is all written from my personal experience, how it’s been explained to me by my therapists and my doctors. So if there are scientific inaccuracies, this is why. Again, personal blog, nothing too sciency, bear with me please, thank you.
How I got to be this ill.
It’s as complicated as it is simple. Over the past few years I have been doing more than I was capable of. I was using more energy than I had, and this was seen as the ’cause’ for me ‘feeling’ this ill. (as oppose to actually being ill) That’s it.
There is, of course, a little more to it than that.
I’ve tried to make this all a little easier to explain by making a few charts to show this theory in action.
(Green = the energy I had.
Orange = the amount of energy I was using but didn’t really have.
Red = energy I realised I didn’t have/what a super healthy person does have)
For me, 2010-2011 were ‘healthy’ years. I thought I was doing well, and I was keeping my limited resources in mind. I had had two setbacks with CFS so far. I tried to always keep that in the back of my mind. This is why I worked part time instead of full time. I was living life at about 75% of my healthy peers. Which seemed to be the perfect percentage for me.
I consider them my healthy years, but they were also my busy years. Cause being healthy, and being busy seem to go hand in hand for me. I was a part time teacher. I was going on holidays left right and center. I went to gigs. I went to festivals. I did everything I never thought I could do during my first setbacks. Looking back, I probably should’ve pushed it back to about 60%, the green bit. But I was at 75%, using a bit of orange energy, and loving it.
I thought I was doing really well. I thought I was cured. My fatigue had been explained to come from hyperventilation and stress, and I believed it. I didn’t hyperventilate anymore, I handled stress better than many of my peers. I could live a part time life, and be happy. Or so I thought. (omnious? Yes? Good!)
From 2012 on, I was feeling worse and worse. I had more pain, I had more fatigue, I could never fully recover from working, I needed more and more help to live a somewhat normal life. To say the least, I wasn’t cured. At all.
These graphs show my setback through the years. The red is becoming bigger. I was feeling more and more ill. And as a result I started using less and less energy. In 2013 I stopped teaching, in 2014 I stopped working at the school full stop. I started needing a wheelchair to go outside. I needed more and more time to recover from activities. I was going outside less and less. I became unable to use public transport. I became unable to bike. I was scaling down my activities, aka I was scaling down my life. And I was trying my hardest to get adjusted to this new life, and these lower energy levels.
I was changing my whole life to fit these ever smaller energy levels. But no matter how hard I tried, I was still using more energy than I had. Because of this my green bar (my actual energy) was getting smaller and smaller and smaller. (think of always using more battery power than a battery contains. No matter how many times you charge it. It will eventually run dry)
I gradually felt worse and worse and worse. And whenever I adjusted my energy use, my levels had already gone down much more than I realised, I just couldn’t keep up. I needed to learn how to listen to my body. Listen to what it actually needs, instead of what I think it needs.
The red was getting bigger, the green was gettting smaller, I was using less and less energy. But the orange was still there; I was still using more energy than I had. Even though I was scaling down, it always felt like I was at least two steps behind on my own energy management. Something with which my therapies ended up really helping me. I learned to deal with the frustrations. I learned to properly listen to my body.
From 2015, I finally got the hang of it. I started listening to my body. I was no longer using orange energy. I was finally green. Finally ready for proper pacing, and eventually ‘getting better’.
Thought and feelings
Some of the above, I agree with. I did always do more than I was supposed to. I did ignore my body for a long time. I needed a lot of help to finally listen to it again. I needed to take it easier, and scale down my activities. All of this is true.
But. (ah yes, there’s always a but) This theory completely ignores the fact that in 2012, the year I started feeling ill again, I was diagnosed with asthma after having trouble breathing for several months. Surely this didn’t help my energy levels. It also only covers my fatigue, completely ignoring my pain levels. And it does not explain why I had about 60% of the energy of my healthy peers to begin with. Lot’s of flaws to be found, and I have yet to find a satisfying answer to any of them.
Some time soon a follow up; Pacing and GET.