Firstly, thank you for all the amazing and supportive messages since launching the blog page last week. It’s been incredible to see how it’s resonated with people, whether they’ve suffered and recovered, are currently suffering, know someone who is, or are simply hearing about M.E for the first time. From a personal perspective, it’s also been so lovely to receive such kind messages of encouragement from so many, so big thanks – you know who you are.
Since launching the blog, I’ve had my second graded exercise therapy (GET) session at Kings. Initial focus has been to establish my ‘baseline’ of activity, i.e. what I can do on a daily basis across a week, that doesn’t cause a worsening of symptoms.
My initial observation was that GET is too narrowly focused on your physical energy output i.e. walking or exercising. What I felt I needed and have pushed for in my sessions is a much more holistic view over everything I might do in a day – walking, screen work, TV, podcast, meeting time, socialising, stretching, sleeping etc. After all, they’re all interdependent, taking energy from the same pot! What I now have is a plan for the next couple of weeks that includes strict parameters for all activities on a daily basis. If I consistently achieve that daily plan, without worsening symptoms, then I’ll add a little more and go again, if not, I’ll either reduce slightly or stick with it for a bit longer, until I do achieve it and am ready to increase. Simple :).
The primary take away has been around the level of discipline required. I would have said for the last 6 months I’ve been incredibly measured in my activities to avoid a boom/bust cycle – colleagues, friends and family would probably recognise what a boring man I’ve become (even more so than normal). But having logged every single hour of my day for the three weeks, I’ve realised I can do more and appreciated how understanding the details can really give you confidence and freedom. Here’s why.
Having such a measured and accurate routine of activity may sound like it would stifle the life out of you. While you wouldn’t be totally wrong, it is also the way to live the most care free and relaxed M.E life I’d say. For me, as soon as my routine is broken and I’m doing something out of the ordinary, that’s when you worry, you wonder if you can do it, if you’ll pay for it and you simply can’t enjoy it. This can be the smallest thing – getting stuck in a meeting for 30 more minutes or walking 10 more minutes to the market for lunch. However, if you’re doing something as part of your planned routine, that you know you are meant to be doing, that you know you can do, that you’ve done before, consistently, and it’s not caused a worsening of symptoms, then you can actually relax and enjoy it in a care free manner – as you would in normal life. And that’s really great and liberating, even if its considerably less than you’d have done normally. And, of course it will enable you to recognise what success looks like as you move forward.
So, if someone who has M.E just turns up to a social occasion for 30 minutes, or will only watch half of bake off, support them do that and don’t feel sorry for them that they’re missing the second half, because chances are the first half was way more fun anyway! And next time they might be able to stay long enough to watch Paul Hollywood give a stomach churning handshake.
P.s. As a side note, in getting down to the details of my life, I found out something quite shocking. I went into my iPhone and I have spent over FIVE HOURS scrolling Instagram in the last week. That is absolutely shocking for any self-respecting human being, not least one who’s got limited screen time. That’s all.
(If you’re curious you about your phone time you can find out in settings – battery – battery usage – time).