• Fiona Martha


Aktualisiert: 2. Sept 2019

Recently I started on a new medication called Etanercept (a.k.a. Enbrel), which is a 'biological' medication that I inject twice a week and suppresses my immune system. So far with my two autoimmune diseases (essentially diseases where my immune system attacks itself and causes inflammation in various body parts), this is the only medication that effectively reduces my inflammation while not triggering my third gastrointestinal problem, and hasn't got TOO many side effects.

I say *too* many, because it does have a couple. One of them is the main reason I'm writing this post today: fatigue. Even without the medication, it's pretty bad, but since restarting it, it has reached such a point that I feel I have to write about it.

Now, fatigue is a word that is thrown around a lot these days. You tell anyone you're tired and it automatically turns into a competition of who actually got more sleep/is busier. This is all well and good, but when you have actual medical/mental reasons for being fatigued, it can be frustrating to realise that you can't actually name a reason for feeling that tired.

Often, when I tell people I'm fatigued, they ask me what I've been doing. And they expect at least...something. Which of course, is natural. Usually you don't waste energy by sitting around. But the honest answer in my case, and the case of almost every person with a chronic illness or mental health problem, is that we are fatigued 24/7 without having done much at all.

It's very important to make the distinction between fatigued and tired.The best analogy I've come across is one I saw on Instagram recently:

Imagine that at the end of the day, someone has 20% 'battery' on their energy levels. Ten to twelve hours, for a physically and mentally unencumbered person should recharge that battery to 90-100%. For someone with the aforementioned problems, we wake up after the same amount of sleep with, at most, 30% energy.

If we don't take days, or in some cases (as I have had to in the past) an entire week or more, to sleep or 'do nothing', then this 'battery' depletes to a degree at which we cannot function. Writing this right now, I'm so fatigued I could barely get to my desk. The added knowledge that starting Monday, I'll be back to getting up at 5:45am, does not make me hopeful.

One of the worst parts of fatigue, for me, is the guilt that comes with it. I see people going about their lives, incredibly productive, and feel pathetic. I am often confined to my apartment with my fatigue, and this knowledge makes me feel stupid and worthless compared to others.

I feel that other people have a reason to be tired, after doing sports, meeting up with friends, and any variety of other things. I wake up and feel like I need another nap! I often feel like I can't justify my fatigue to myself, even though there are blatant medical and mental reasons for it.

It's a big part of my process in therapy at the moment not to measure my self-worth against my productivity. I am still a whole person, no matter what I do, or what I produce. It is okay to take time to rest, and to do what I need to do so that I feel as well as I can. The work I'm putting into internalising this is difficult, and it will probably be a while before I stop putting too much on my plate to make up for what I feel I'm lacking. But I'm working on it. What more can you do?

- Fiona

Image credit to @thisthingtheycallrecovery on Instagram

#fatigue #chronicillness #spoonie #chroniclove #chroniccommunity #disabled #chronicfatigue

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