Relapses and Pacing

I haven’t written a blog post for a while now. It’s been a difficult year in terms of my ME/CFS. I had to stop the tablets that were making a big difference because I required antibiotics and the two tablets interacted. I’ve also been having some seriously bad headaches that were dominating my life. Although I could still function with these headaches, it has made getting through the day harder than it needed to be.

With a chronic illness such as ME/CFS, it’s the symptoms that come and go on a whim that make life so difficult for us at times. What is there one day can be gone the next; this in itself can be so frustrating. This is why around 70-80% of those with a diagnosis of ME/CFS (including myself) are unable to work (https://www.sciencedirect.com/science/article/pii/S0025619621005139) ,because, for some of us, these symptoms can last for months without any reprieve. For me, this is what it has felt like with headaches. Luckily I have found that not eating too much refined sugar helps an awful lot, although I find this hard to stick to, as sweets are one of my favourite things!

On top of ME/CFS, I also have been getting infection after infection. Firstly I got COVID which wasn’t as bad as I had feared, although it did impact on my energy levels. A few weeks after I ended up having an emergency appendectomy, which was extremely painful and scary. I seem to have come out of it relatively unscathed, although I often find myself dozing off in the afternoon, which I didn’t do before. Then I’ve had cellulitis after being bitten by an insect in the garden. Arrrrgh!

As you can appreciate, dealing with the above infections on top of ME/CFS has been very challenging. I have found it to be incredibly important to pace myself and my activities to attempt to make the most out of my time, to avoid having a relapse and an increase in severity of ME/CFS symptoms. (https://www.jospt.org/doi/full/10.2519/jospt.2021.0106)

I have attempted to learn t the best way to deal with the setbacks. This is mainly working out what NOT to do before and during a relapse. If necessary, start making a list of strategies that help you. On my list is not to oversleep and stick to waking up and going to sleep at the same time each day. This makes my headaches less severe and easier to manage. I also try not to eat the things I am intolerant to, as this increases my joint pain and stiffness. During a relapse I continue to pace myself doing my normal daily routine but add extra periods of rest in-between activities. However, often I won’t be too rigid and I’ll ignore pacing strategies and see how things pan out. This sometimes works out well but more often it doesn’t!

Recent research has shown that pacing can have positive effects for those suffering from chronic pain and fatigue, when led by healthcare professionals in a person-centered fashion.(https://onlinelibrary.wiley.com/doi/full/10.1002/msc.1557). The key here is the person-centred approach. Everybody’s ME/CFS journey is individual. As Occupational Therapists we take this into account as we also consider environmental and social factors (https://www.instagram.com/p/CkPP04aMwbB/)as well as the symptoms that present with ME/CFS. With this information, we can form a individualized treatment plan that a person can easily implement into their lives and they can also talk through what has worked and what hasn’t with the Occupational Therapist and make any necessary changes.

As you can see, pacing strategies can be developed that enhance a persons quality of life and as a person with ME/CFS, this will hopefully provide encouragement and belief in themselves when they see that things can improve. As a person with ME/CFS, this is music to my ears!