How to live with CFS: in theory. GET.

For the past couple of posts I’ve been looking back at therapies I’ve had, the ideas behind them, and how I feel about them now. You can read ‘How I got ill’ and ‘Pacing’ at those links. Right now, I’m going to delve into GET.

Pacing is all about not putting too much pressure on your body. Always staying well below your body’s limitations and doing about 50% of what you are capable of doing. It is about resting your body, and giving it the time and space it needs te recover. To completely counter that, therapists also recommend GET, or Graded Exercise Therapy. This is the exercise or fitness bit of therapy for CFS/me.
It’s a fairly simple concept. You pick any exercise of your choice, start slow for a short amount of time, and slowly increase your time/weight/etc. The idea is that this will not put too much extra stress on your body. But you are still working up your strength and stamina.

(please note again how pacing was about not doing too much, while this talks about  constantly increasing what you are doing. Yup. Makes total sense. Nothing confusing about these things. Okay. Moving on.)

GET (Graded Exercise Therapy)

For my exercise, I chose biking on my hometrainer, because I have one at home, and there was one at my therapy.
I started biking two minutes. And we planned to increase my time with 30 secs every week. This was all done under supervision of one of my therapists. According to her, this was a normal time and pace for people with CFS/me to start their GET, .

This all sounded like childsplay, because as a proper dutchie, I used to bike at least 20 to 30 minutes each day. And two minutes is peanuts compared to that.

I started biking, and while it was tough, I was determined to make this therapy a succesfull one.
After about three of four weeks, I got so ill and exhausted, I couldn’t bike at all. The trip to the therapy alone had exhausted me too much. A week after that I was so ill I couldn’t even make it to therapy. I had to stay at home.
My stamina was decreasing instead of increasing.

It was preeeeetty obvious that the basic plan was not a good fit for me.

When I felt well enough to return, my therapist suggested I change my bike time to one minute and increase it with 15 seconds every week. Exactly half of what I was doing before, which again seemed like a good idea, and again I went in determined to make this work. But the exact same thing happened. After a few weeks I became so unwell that I couldn’t go to therapy anymore, let alone bike when I was there.

We changed my bike time and the level of increase several times after that. All with me going in determined, and all with no result. I ended up biking 30 seconds, and not increasing my time whatsoever. This was the only way that I was able to come to therapy every week, and not feel worse and worse and worse each time.

(sidenote: Even then there were times where 30 seconds was too much. I had to travel to the therapy centre using public transport, and getting in out of the tram and bus often drained me of every ounce of energy I had. My dear sweet daddy picked me up several times, without even batting an eye, but that wasn’t a permanent solution. Him having his job to go to and all.
This is when I got special needs transport. A taxi service for people with disabilities we have here in The Netherlands. It brings people who can’t use public transport from their home to wherever they wish to go in the city. For the same price as public transport. It has it’s flaws, but is still a pretty awesome service. This ended up being the only way I could go out of the house. And it allowed me to continue going to therapy and biking my 30 seconds. I still use this taxi service whenever I go somewhere on my own. Which unfortunately is not very often. But I’m very happy I have the opportunity to use it when I’m well enough. /sidenote)

After about a year of my therapist and I trying to figure out a good exercise regime for me, the board of directors at GGZ InGeest were implementing cutbacks, and one of the many changes was that from that point on you were only allowed this type of therapy for three months. Already being a full year in, I definitely had to go.
I still needed the therapy. I was nowhere near feeling any better. And we were still figuring out how to increase my biking time. But all of that is not as important as saving on money when it comes to therapy. (Thanks a lot right wing government and capitalism. Well done.)

I had an emotional and wonderful goodbye with my therapist, and I was on my own.

Ready, set, time to exercise with minimal to no guidance. (my physiotherapist helped me a little from the sidelines, bless her  <3)

It was a weird, stressfull and emotional time. Several therapies stopped at the same time. From this point on, I had to do almost everything myself. It felt like the scariest thing in the world. I was down and out, and truth be told, I was ready to throw in the towel.
But since that is not my style, I didn’t.

GET1

Feeling down and out, I decided to start exercising right where I was, at rock bottom.
I would start biking 15 seconds. Three times a week. With an increase of only 5 seconds each week.

It felt like pretty much nothing, which it why it sounded doable to me. I figured, if even 30 seconds was too much for my body on most days, I’ll just pace myself, and do half that amount.
And it turned out, I was right. (yay pacing!)

Above you can see a little bit of the graph I used back in the beginning. I got it from my physiotherapist to track my progress. See all those funky bars getting higher and higher? That’s me kicking all the biking butts. *insert party emoji*

Because the biking put very little strain on my body, I was able to keep increasing my time. And because it was only five seconds a week, the increase was so small, my body was taking it very well. Exactly what GET is all about.

27 weeks later, I was biking 2 minutes and 30 seconds.

Let me repeat that.

TWO MINUTES AND THIRTY SECONDS.

*insert a thousand party emojis*

GET2

The graph kept climbing and climbing, and that visual representation of my progress just made me feel so, so, SO proud of myself. I had done all of this all by myself. It felt incredible. I didn’t need any therapist to help me, I could help me.

I kept on biking, and it felt so good. I was achieving milestone after milestone. I hadn’t felt this kind of high for several years. I was so proud of myself. It felt like the sky was the limit, and I was biking my way towards a more healthy future.

But after hitting the 3 minute mark last january, I could feel my body resisting. The biking started to cause me more pain, and I was absolutely exhausted afterwards.
It felt like I hit a limit, and instead plowing on and ignoring it, I did what all my therapies (except for GET) tought me. I listened to my body and it’s limits, and I respected them.

I’m still biking now, but I’m not increasing my time with 5 seconds every week. Instead I increase with five seconds every 3 to 4 weeks, if my body feels ready for it. I’m no longer biking three times a week, but once or twice, depending on the rest of my schedule. This has been going pretty well, and I’m currently at 3 minutes and 25 seconds. Which unfortunately feels like I’ve hit another limit. And a pretty big one at that. The biking is taking so much of my energy, that it doesn’t feel like I will be able increase for a while. But I’m holding steady, and not backing down.

I know 3 minutes and 25 seconds doesn’t seem like a lot to most people, but it’s more than I could’ve ever imagined doing. Remember when two minutes was too much for me? I kicked those two minutes in the butt and almost doubled it. Ho-ly sh*t.

Thought and feelings

As I pointed out at the beginning, this and pacing combined, don’t make any sense. One tells you to cut in half everything you do, while the other tells you to constantly increase what you’re doing. It’s very confusing, and causes a ton of frustration.
But what else is new when it comes to CFS/me, right?!

With GET, even more so than with the other therapies, everybody needs a very personal plan. There is no one size fits all when it comes to CFS/me, and there is definitely no one size fits all when it comes to GET. And I think very few people with CFS/me have actually had any benefit from constantly pushing themselves. Most people become sicker because of it. Like I did, when I first started.

Granted, I did increase my biking time for quite a bit, and I’m hella proud of that. But I know when enough is enough. And apparently for me right now, 3 minutes and 25 seconds, is enough.

I believe GET is not the right move for this illness. Pushing yourself over your physical limitations is exactly what we should not be doing. We should be resting, listening to our bodies, respecting it’s limitations, and pacing ourselves constantly.

Some form of excercise is good. A lot of us lose a big chunk of muscle mass from not being able to move around as much. A bit of exercise can help prevent some of this. Or at least keep what little muscle mass we have left going.
GET has been helpful for me, but only in the sense that is has helped me listen to my body. It helped me to really feel where my limitations are. I have now reached a very clear one, and I don’t intend to push my body over it. Which is the opposite of what GET wants me to do. But being the rebel that I am, I’m not going to push myself any further. Having lived with this illness for several years now, I know the effect pushing myself has. It’s not pretty.

It’s important to note, that what most people consider to be exercise, things like biking, running and walking, can be waaaaay too much for people with CFS/me. I know someone, who for a long time, had ‘sitting upright in bed’ as her exercise assignment. She could do it for about two minutes, after a long time of trying. And this was a huuuge accomplishment, since she was fully bedbound for months before this. Sitting up takes as much energy from her, as biking for a bit does for me. But there were also people in my therapy group that ran for 25 minutes, without even breaking a sweat. The difference in limitations in people with CFS/me is astounding.

So, in conclusion, I don’t think GET was or is a good idea. A little bit of exercise might be good, to help understand our bodies better, and to make sure our muscles don’t detiriorate too much. But to be able to exercise on the level that is right for them, I think most people will need help from a very patient, loving, and truly understanding therapist. And from my experience, there aren’t that many of them around.

Now have some virtual love and cookies, ’cause you just read a whooooole bunch. Well done you! ❤

Next up in this series is CBT, or cognitive behavioral therapy, which is so intimate and personal, I’m not sure I’ll ever get around to writing about it. And tbh I want my blog to be fun again. Haha. But I’ll muster up the courage and talk about CBT someday :3 Maybe :3

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