Times are strange for many chronically ill people at the moment. Even though lockdown restrictions have eased, many of the chronic illness community have found themselves facing a somewhat unexpected challenge; re-building tolerance for everyday life.
I’ll be honest, there was initially a part of me that thought the many weeks of staying indoors and shielding during lockdown might be beneficial for my health. Without the need to exert my limited energy supply being out and about and travelling between places, I wondered whether the physical rest and the opportunity to recharge would do me some good.
What I wasn’t immediately mindful of, however, was just how easy it would be for my body to decondition… without me even fully realising it.
As somebody with ME/CFS, all of my physical ‘activity’ has to be carefully managed so I can pace myself accordingly. I’ve been very lucky to make small improvements over time, and these teeny-tiny increases in my physical capabilities have been built up carefully and meticulously. Pushing too far can be fatal, and can cause everything you’ve built up to fall back down again; I knew that. What I don’t think I fully grasped was that changing my routine altogether, even to something more restful, could be almost as problematic.
Since getting out and about slightly more in recent weeks, I’ve noticed a fair few setbacks in my own health. It wasn’t only the physical side of things, standing and walking, that had taken a knock. In fact, it was the cognitive exertion that being out in the ‘real world’ required that made me realise something had changed. Simply being in a new environment and around other people, with external sounds and stimuli, might not sound like it would be particularly debilitating, but as people with ME/CFS and similar conditions know all too well, it can seriously wipe you out.
At the moment, it’s taking me much longer to recover from trips outside and even from minor physical tasks under my own roof than it did before lockdown. It’s definitely a setback, and something I’m going to have to begin working on slowly and carefully again. And yes, it’s frustrating. It’s frustrating to think perhaps this could have been avoided if I’d been more vigilant.
However, I wouldn’t want anybody who can relate to these experiences to feel the same way, or put the blame entirely on themselves. I suppose we should remember that we’re still in the midst of a global pandemic that’s completely altered life as we know it. Because of this, maybe we should be cutting ourselves some slack and focussing on the future, rather than berating ourselves for things that have happened in the past.
Building Up Physical Tolerance Levels
With that in mind, I wanted to share a few gentle suggestions for ways we can begin to build up our physical tolerance and activity levels post-lockdown. Before we do that, however, it’s incredibly important to disclaim that everybody’s conditions and lifestyles are different, and there’s no one-size fits all approach to building up physical capabilities. As somebody with ME/CFS, I know all too well that the real way forward is actually listening to your body and treading carefully, rather than following blanket advice or just pushing on through.
You should never, ever be made to feel as though you should be doing more than what you know you’re capable of… so please do take these points with a pinch of salt, and if you have any concerns, speak to a medical professional involved in your care.
- Keep a symptom diary to help you track your day-to-day activities and the impact they have on how you’re feeling. This can help you to recognise the points in the day you may feel more capable of pursuing various activities, and when the symptoms or ‘payback’ from doing so might arrive. You can also use this to track how these things vary or develop over time.
- In these early days, consider doing slightly less than you think you might be capable of. If you feel you can manage a 45-minute trip out of the house, consider planning for just 30 minutes. If you think you might just be able to manage walking a certain distance without a mobility aid, try it with the mobility aid first; even if it’s just part of the way. Test your boundaries before accidentally pushing them. Leave some energy in the tank rather than striving for a flat battery.
- If appropriate for your condition, consider whether there are any gentle physio exercises you can do under your own roof that will help you fare better when venturing outside. There might be adaptive equipment to help you with circulation even whilst sitting down, such as this Electric Pedal Exerciser, or even simple hand therapy putty which can help you re-build fine motor abilities and grip strength… whilst being rather fun to play with at the same time, of course.
My best advice overall, however, is to keep your chin up. Chronic illness fluctuates, symptoms can vary in response to various life events, our health changes and evolves over time. We all know these things. They often happen irrespective of who you are and what you did or didn’t do to manage your condition, and I hope you know that this fact has no bearing on your worth as an individual or your ability to navigate your health challenges successfully.
It might be that you don’t yet feel ready to turn your attention to building your tolerance or activity levels back up, and that decision is also 100% valid. It’s all about doing what’s best for you and your own unique needs.
For those of you who are also tentatively trying to build yourselves back up, however, let’s do this. Listen to your body, make sensible decisions, and keep on keeping on. We’ll get to where we need to be.
If you found this post helpful, you may also enjoy my recent livestream all about ‘Life After Lockdown’ with an energy-limiting chronic illness, with Dr Sue Pemberton of Yorkshire Fatigue Clinic. You can watch it on YouTube here, or find it on Facebook here!
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