Whilst it is absolutely clear that ME/CFS is very much a physiological illness, rather than a psychological one (as it was once thought), there is a real risk of developing depression alongside it, due to the fact you have more than likely gone from a previously healthy, active person, to someone who has to choose between brushing their teeth and taking a shower as their morning activity. There is also a need to manage the myriad of thoughts and feelings you are probably having as part of the illness, no matter what stage you are in. In the early stages there is confusion and frustration that you aren’t getting better. Then fear and anger that this might be it for life.
CBT is usually recommended, due to a controversial study (which you can read more about here ) and because I try to keep an open mind I gave it a go for six weeks. I mostly spent my time being asked about my anxiety and depression (I wasnt anxious or depressed) and being advised to avoid thinking about being tired as that was probably making me tired. I can’t say that was terribly helpful and it also sent me into spiralling thoughts where I was convinced I could ‘think’ myself better. I would force myself to think that I felt fine, even though I actually felt like I was dying, and when I finally accepted I really wasnt feeling fine I started blaming myself for not being ‘positive enough’. And so on. All that thinking was exhausting in it’s own right and probably led to a worsening of symptoms as I was pushing myself to do things that my body just couldn’t do. Plus I’d been advised to get up and move at least every 20 minutes, but most TV shows are at least 40 minutes long so that really wasn’t going to work for me.
Once I gave up on the CBT I decided to find a therapist to speak to, not necessarily to help me manage any particular symptoms but more to have someone to help me organise my thoughts. At this point I was about 10 months into the illness and really starting to panic about how awful I still felt, how much I was struggling with work and what a shit wife and mother I was being. I didn’t want to spend the little time I was able to converse with my husband moaning, so a therapist was brilliant for helping me avoid spiralling into the very black hole I was heading down and for making sure the time I spent with my family was quality time. I think that was the biggest things I learnt from my sessions actually – to really schedule those times in, around my rest breaks, and to be truly present. Not on my phone, or half watching TV – really give my kids and husband my energy, what little I had. And it helped. I felt like I was having decent family time again, and by listening to what I was telling my therapist I was able to recognise that over the course of the few months I saw her, there were incremental improvements in how much I was able to do. I haven’t felt the need to speak to her for some time now, but wouldn’t hesitate to go back down that route if I feel myself spiralling again and definitely think it helped me on my road to recovery.
A note on ‘recovery’ from CFS/ME. Officially, the stance is that some people do make a full recovery. And there are many people out there, on blogs and forums, who say they have done so. There are also many who don’t believe recovery from ME/CFS is possible. They think that anyone who says they are recovered are either in remission, or they were misdiagnosed in the first place. There are certainly many thousands of people out there who have tried everything I’ve tried, and more, and become or remained bedbound. The illness can be truly life limiting and be absolutely brutal. At the moment, I am one of the ‘lucky’ ones as my illness is relatively mild and for the time being, I’m choosing to believe that recovery is possible, but also acknowledging that I may have to live within my current limitations for sometime yet.
The other way of managing stress, and something that is mentioned by almost everyone you speak to on the subject, is meditation/mindfulness. I may do a full post on this at some point but I can’t say I find either too helpful, beyond having a bit of dedicated time where I am not staring at a screen for half an hour of the day. My brain just really doesn’t like to zone out for long and despite trying different apps and guided sessions over the course of several months, I’m personally finding the stress of needing to find time for mindfulness every day, and wishing I was doing something else, cancels out any small benefit I might get from it. So far I am finding that writing these posts are way more therapeutic so maybe I will just stick with that 😁