If you follow me on Instagram you may have seen that I always use #CFSrecovery in my posts. The majority of medical practitioners will tell you that a diagnosis of Chronic Fatigue Syndrome/ Myalgic Encephalomyelitis is something you will have for life and that rather than aiming for recovery your treatment will be more about how to manage it. If people do recover I have even seen doubt being cast on whether they actually had the condition in the first place.
When I first started to experience fatigue after cancer treatment I was told that it usually went in about 6 months. When I got to beyond this point and the fatigue was still very much there, I still hung onto the belief that, as it had been caused by specific treatment, it would surely go once my body had recovered from the treatment and got used to everything.
In 2015, on the recommendation of an amazing Macmillan Psychologist, I was referred to a 3 week residential Fatigue Management Programme. Leaving my family and home for 3 weeks was pretty tough and I can remember feeling pretty vulnerable and anxious about what to expect. On day 1, the consultant leading the course used the phrase ‘long term condition’. I don’t think that this was the first time I had either heard or read this in relation to chronic fatigue, but I think that day was the first time that I properly listened. I ended up leaving the room before the tears came. In the toilets of the hall where we were, I remember looking at myself in the mirror and not quite believing that the person looking back at me had just been told that they had a life changing condition that would probably never go. A light bulb moment of astronomical proportions! Luckily the determination/bloody mindedness that had allowed me to make it to the course in the first place also kicked in at this point. I think the words I used to the person in the mirror were pretty much “Get a grip. You’re definitely not going to get better stood in these toilets. Get back out there and start dealing with this”.
Despite being told that this was likely to be long term I don’t think I have ever really accepted this. That programme certainly helped me to accept that I had the condition which at the time was what I needed, but I was always pretty certain that somehow I would come out the other side. This led to periods of complete focus and determination, but also to periods of desperation and frustration when I felt like I was making no progress. During one of these periods of frustration I took to Googling and came across a private clinic in London that specialised in ME/CFS and Fibromyalgia. The Optimum Health Clinic was founded by someone who had been bed-bound with CFS and had recovered. The majority of the practitioners who work there have also recovered from CFS. Their online material includes interviews with lots of past patients who have recovered.
Attending the course at this clinic gave me a totally different perspective on my future. The previous programme gave me acceptance and some really useful management tools. The evidence from the second course suggested that I’d been right all along and that recovery was possible. 1 year on from that course I still believe that. I’ve made big progress with my physical energy levels, which has given me back a quality of life which I had previously lost. My Achilles heel remains my sleep and my mental energy levels. Reading, using my laptop, meeting friends for coffee, being in busy, bright noisy environments are all still activities which have to be carefully paced. Brain fog is a regular companion which I find hard to shift and can be pretty debilitating and activity limiting. Despite these symptoms do I think recovery from this is still possible? Yes I do. Because to be honest the alternative is just not something I’m prepared to consider. But I do know that it will only happen if I continue to change the way I live my life. Going back to my previous stressful career and my previous busy, multitasking, driven ways is not an option for me. Not if I want to recover and stay recovered. I’m pretty sure that even once I reach a state of ‘recovery’ certain things will still be a trigger for the fatigue. But actually that’s ok. I can deal with the occasional reminder that I’m pushing things and doing too much. I’ve learnt how important it is to listen to my body when it’s not happy and I don’t intend to forget this even when I’m better.