ME/CFS and Coping with a Setback

Since I wasn’t very well a few weeks ago my recovery has been very slow. It’s been very disheartening that I’m still not back to the levels of activity I could maintain before that virus hit me. I’m used to regular ups and downs but usually it only takes me a few days to get back up to my baseline after a bit of a dip. But setbacks are very common to this illness, something we all have to deal with from time to time, sometimes caused by a new infection, sometimes caused by overdoing things in a big way (the bust after a boom), sometimes caused by a stressful event. The danger is, if they are not tackled carefully, they can initiate a downward spiral of low mood and worsening health.

Whenever I have a dip in my energy levels, a bad day, or feel like I am tackling a new infection I respond by focusing on rest. I cut back my daily walk from half an hour to 10 minutes or even miss it altogether if I’m feeling very unwell. I always do my T’ai chi in the morning and try to continue with my afternoon yoga as I have a gentle routine designed especially for my bad days. I make sure that any mental work I do (writing or even reading) involves minimum effort and I stop as soon as I notice myself having to work (sometimes this can be straight away). I watch a lot of trashy TV or read a trashy novel but try to make sure I get up and move around a little regularly. I sleep in the day if I feel it’s an effort not to. But I try to avoid the need to, by stopping doing things as soon as they become an effort, as soon as they are tiring.

After a day or two of these restful days I usually find I can do a little more mental work without effort and I reintroduce a short walk or walk for a little longer. The following day I’m usually back to my usual level of activity. I accept this dip in ability/ productivity as an everyday part of having this illness, knowing that the measures I am taking will help me get back to my baseline soon.

For me a setback is when this doesn’t happen. Attempting a day at my previous baseline of activity wipes me out and I have to start again, building up more slowly this time. Sometimes even a gradual increase in activity can send you flying and it starts to feel like your baseline has taken a beating. At this stage I start to feel disheartened, frustrated, worried even- What if this is it, and I never get back to my baseline let alone back to ‘normal’ health?

Sometimes a fresh wave of grief can hit me for the life I lost, frustrated by the constant struggle and lack of progress, a sense of hopelessness about whether I really will ever get better. Sometimes I feel fed up of constantly having to be in charge of my health, why can’t anyone come and take this away for me?

I embrace these feelings, they are a real and natural response to what is going on for me, but at the same time I recognise that they are temporary, they are what I feel in this moment, they won’t last for ever if I let them flow, if I let myself be. I wait. I try to be kind to myself. I try to route myself in the here and now, ignoring the torment of how things used to be or worries about the future. I know I can’t change the past or predict the future so I dismiss any energy draining thoughts about them.

I look out for an opportunity to take control and do something that will contribute in some small way to my health and happiness. The fact is that nobody else can make me better; if I want my health and happiness to improve I have to take responsibility myself.  I make sure I do my healing meditation in the morning, even if I have to shorten it. I burn an essential oil, maybe one to help me grieve, maybe one to uplift my spirits. I look for opportunities to laugh; I try to watch comedy programmes on TV.

I stay hopeful that soon I will be able to do something that will make a very small difference. I value these very small differences because I know that they will add up. I try to see managing this setback as a challenge. My formula didn’t work before so I have to find new ways of increasing my activity more gradually. I route myself in the current challenge of doing the best for myself in the here and now. I dismiss the thought that the challenge of full health seems further away.

I have learned to accept that the passiveness of restfulness can contribute to my low mood, probably on a biochemical level. When this happens, I allow myself to feel low for the time being. I trust that when I am feeling well enough to move around more, I will. My chemistry will then help me feel better.

Coping with a setback isn’t about being happy about it. Nobody can be happy about getting worse. It’s about accepting your feelings, letting them be, and avoiding adding to them with unhelpful thoughts about the past and the future. It’s about being willing to take responsibility for doing whatever small thing you can do to help yourself, as soon as you are able. It’s about waiting patiently for that opportunity. It’s also about valuing your tiny achievements. It’s not easy to deal with this illness, especially during a setback. If you can avoid a downward spiral, you’re doing great. If you can make a tiny step towards improvement you are doing even better! Recognise the achievement of just getting through it!

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1 thought on “ME/CFS and Coping with a Setback”

  1. reading this today as I needed a boost. I feel empowered, and “almost excited” about my situation 😉 _ you are great. Thank you Julie <3 Thank you for being you ! you are such a gem.


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