How to live with CFS: in theory. Pacing.

A while back I tried to make sense of all the information in my brain regarding how I may have gotten as ill as I am now. Today I’m going to try and do the same regarding one of the main physical therapies concerning my illness; Pacing.

Pacing.
The main idea behind pacing is to always do less than you are capable off, so you can ‘store energy’ for later use.
My therapists explained to me that I need to pace myself in order to get more energy. Which meant that I should always use about half of the energy and strength I have in me. Which will result in saving up energy. Which will result in a gradual build up of energy. Which will result in ‘getting better’.

intheory3

The bars above show a new colour. Blue. Let’s say my current energy level is at 15%. If I pace myself, and only use half of my energy, say around 8% of it. I save up that whole blue bit.
The idea is, that if I keep doing this, keep pacing, keep using only a small amount of the strength I have in me, I might increase my strength. I might increase my energy. I might increase my overall well being. As you can see in the three little bars to the right, all of which are hypothetical future bars. The green, my actual energy levels, is slowly increasing, because I keep having a little blue. Seems legit.
Note: there is no time frame for this. You can’t say “pace yourself for a month and you’ll feel better”. Or even “pace yourself for a year and you’ll feel better”.

Thought and feelings
Pacing always felt like the ‘easy bit’ when I first learned about it, but it took me many years and several different therapies to get somewhat close to pacing. I have been doing it properly for about a year now. And it’s only lately that I’ve started noticing some changes. Mostly that I’m in less pain than I was a year ago. Good times, good things, excitement all around, right? Only thing is, this only happens when I have spent about three-five days doing absolutely fuck all (aka resting). At home. Alone. Not watching too much tv. Not reading too much. Not socialising too much. Not making myself dinner every evening. Not doing anything at all really. After that I can have someone over for tea, leave my house for about two hours (in wheelchair), or make myself something other than a simple pasta for dinner. And then go back to doing fuck all for several days in order to recover. So yay for less pain? But to counterbalance that yay, I have also experienced a lot of sadness, frustration and anger, because I have to spent the majority of my time alone and resting. So not exactly a win-win so far.

Pacing is a very common theory, used worldwide for all kinds of chronic illnesses. The idea behind it is nice, and I think it can work. But it takes an incredible amount of determination, discipline and focus to achieve it. Not things every human being has a ton of.

With everything you do, you have to feel wether or not you’re close to reaching your limits. You always have to plan ahead, make sure you get enough rest. Make everything as minimally invasive as possible. There is never a moment in your life where you can just do something without thinking about how it will affect your body and your health. This is already the case with most ilnesses though, so it’s something I have gotten used to a while back. Pacing just puts extra strain on that already stressfull way of living.

Take in mind how little energy 15% is. I can barely make dinner at the end of my day most of the time. I need to constantly make tough choices “do I shower, or do I exercise?” “Do I make food for myself, or clean the litter box for the kitties” “Do I check to see for mail (which means up and down a staircase) or do I do a bit of dishes” “Do I read a book, or text with a friend” “watch half a movie, or play with my kitties”. Etc etc etc. My life is a constant stream of questions and assessments like these, because of my limited energy. And to than use only half of that already limited energy? Oof. It is extremely frustrating.

It’s hard to not go over your psychical boundaries, especially in our western world of 24/7 access and working and being productive and blablabla. There is a lot of pressure to always push yourself to the limit. If you’re not in pain, you’ve just not tried hard enough. (think about any and all ‘fitness’ commercials, phrases like ‘no pain, no gain’. How stupid these sayings are, but how normal they’ve become to us. #ableism) A lot of doctors, and even family and friends, have trouble accepting pacing. They feel you are ‘just not trying hard enough’. For some reason you have to show that you are constantly trying everything in your power to ‘make yourself better’. Which for a lot of people, including past-me, means pushing yourself to the limit each and every day. Even if it is damaging you instead of helping. If you’re not pushing yourself, you’re not really living.

(I would like to take this moment to point out that ‘making yourself better’ is not a real thing when it comes to chronic illnesses. There may be good years yes, but chronic means chronic means constant, so ‘making yourself better’ or ‘curing’ yourself are not real things and people need to stop saying it, because it is hurtful for people who are in pain each and every day. The fact that they are still in pain is not because they are not trying hard enough, it is because they have a chronic condition. Stop with the things. Goddammit. /soapbox) (yes, some chronic illnesses can be cured, but CFS/me is unfortunately not one of them)

Then to make matters slightly more difficult when it comes to pacing; in order to know what half your energy is, you need to know what all your energy is. Which in my case took a very long time.
I had lost any and all connection to my body. (I’ve talked about this before, but a very short recap: this happened because I was trying to ignore my illness coming back for well over a year. My mind completely disconnected from my body, in an effort to not feel the amount of pain I was in, and keep living the life I was loving.) So in order to use half of my energy, I needed to learn how to feel what my energy levels were to begin with.

So while “just use half your energy” sounds pretty doable in theory. It takes a lot of hard work, both psychically and mentally to get close to proper pacing. And it takes a lot of willpower to keep it up long enough to even show the slightest of changes.

Next up, Graded Exercise Therapy.

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