Kicking CFS butt, before it kicks mine

It’s been a while since I had a big whine and moan about the tiredness, and that’s largely because I’ve been too tired to really think about it. But at the moment, it feels like a different kind of tired; the tired you feel at the end of a long day, after exertion or after you’ve been taxing your brain. The kind of tired that isn’t the relentless, crushing fatigue associated with CFS/ME. And whilst I have felt like getting out of bed may actually kill me from time to time, I’ve done it, every day.

I’ve actually been feeling better for not allowing myself time to think about it. I’ve (touch wood), been doing really well.

In the time since my last self-indulgent rant about chronic fatigue, I have hit several milestones in recovery, thanks in part to a couple of changes I have made.

  1. I have come off medication entirely

And it was almost unbearably difficult to do. Withdrawal was debilitating and made me feel even crazier than I was in the first place. The dizziness was nauseating, and even just turning my head to talk to someone sent me spinning. In the 6 weeks after the medication stopped, I went from feeling basically nothing to feeling everything more intensely, and I cried at everything from TV ads to paper cuts. In short, I was a mess. Now that the worst has passed, I feel a lot more able to function, and am hopeful that I can keep a handle on the sads. Probably not the anxiety, but the sadness can be kept in check. This is not to say that I don’t think medication is helpful – it was and it is and I don’t doubt that it will continue to be so, but I didn’t feel like myself on it, and had taken the suggested ‘course’ to get myself to a strong enough position to come off and be more ‘me’ again.

 

  1. I have held down a demanding full time job

Thus far, I’ve not been fired. I’ve been working a steady 8-5.30 job, with added out of hours. It’s created an invisible yet inflexible barrier to moping for days, and I’ve been managing my tiredness by….

  1. Actively planning my sleep schedule

Sad as it sounds, I sit down every day, think about what I have to do the next day, and plan my sleep accordingly. I set various alarms, and I don’t allow myself to lie in bed if I’m not actually tired (yes, that happens too).

  1. Minimal tech in the bedroom

I have moved house, and have instituted a ‘no bedroom tech’ rule. This means there is no TV in my bedroom, and I don’t do any computer work in bed. Everything techy happens in the study or downstairs, and I don’t go up to bed until I’m ready to sleep. My phones are on charge are in the room, but they aren’t checked in bed, and this has done WONDERS for my sleep.

Something that I don’t think has helped me in the short term was:

  1. Allowing myself too few ‘spoons’

In the grand scheme of things, I’ve actually been a little too nice to myself. I haven’t pushed myself at all with training, nor racing since probably October. I’ve told myself that it’s okay to eat what I want and vegetate as much as possible, I’ve told myself that it’s fine that I’m not going to the gym tonight because it’s dark and raining. None of this has helped my fitness at all, but what it has done is allowed me some proper recovery from injury. It’s just made ‘getting back into the swing of things’ a touch more daunting.

But you know what? I’m ready.

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