Recovering from Chronic Fatigue Syndrome (ME/CFS)

Recovery from CFS.png

I don’t speak about my health a huge amount on my blog. I suppose that’s for two reasons. Mainly, I want to be (and be seen to be) more than my health. That, and I would rather this space be “positive”.

I have realised recently though that so much of what I do, think, plan for and advise on comes back to the lessons I’ve learnt through having glandular fever and, subsequently, CFS, which stands for Chronic Fatigue Syndrome. (It is also sometimes referred to as ME or Myalgic Encephalomyelitis.)

Thinking back to how I was before February 2017 is like thinking back to a different lifetime. I lived very differently, so it’s understandable that I come back to reflecting on health related issues every so often. On the whole, I am grateful for the ways my life has changed, but it wasn’t easy to get to this point.

Health is a big deal

Whilst I don’t like to be pigeon holed by my CFS, it is responsible for a few big things right now.

  1. It’s the reason I began coaching,

  2. It’s the reason I work from home, for myself,

  3. It drives what I say “yes” to and what I must avoid,

  4. I plan my days and weeks around it and my symptoms, and

  5. It is the reason that we have waited to have our first baby. (I recently posted about that here.)

Pretty big things right?

When I became ill

Well it was only 18 months ago that I was stuck in bed or on the sofa every day, unable to work or socialise, beyond friends coming round and sitting with me for an hour or so. Even this exhausted me. I spent a lot of time looking at various Glandular Fever (mono/mononucleosis) and CFS related things online, and coming up with so much negativity. Stories seemed to involve people either recovering very quickly, or not at all. There was no middle ground and I felt discouraged. Surely there were people who recovered? I told myself that these people did, but were off living fun lives again and just weren’t writing about their experiences online.

I began to write about my own slow recovery, but found it hard to keep up with. Each post about feeling a bit better was soon followed by some kind of a dip and I’d feel like a fraud for talking about things getting better. Of course I can see now that I was getting better, and that healing just isn’t linear, but that’s hindsight for you. Even now, after two years, I find it upsetting when I have a rough week or so. I feel as though I’ve failed or jinxed myself. That said, it gets easier, and that’s the point of this post, in case you’re reading this and have glandular fever (mono), CFS or ME.

Handing in my notice

I haven’t yet reached a point where I feel well enough to go back to full time teaching, which is what I was doing when I fell ill. It was a very difficult decision to hand in my notice in June 2017, but looking back it was the only realistic thing I could do at that point. Had I gone back to school in September 2017 for the new academic year and “pushed through,” I don’t know what my health would be like now. I do however suspect that I would have got “stuck” in a situation where I completely drained myself during the week and needed weekends to rest up, ready to do it again. As I had the support of my husband and parents, I decided not to chance it, and after months of rest and research, I instead decided on a new direction.

Typing that makes it sound easy. It wasn’t a quick or an easy decision. I worried about money, my ability to do something else and what would happen in future. I still do worry about all of those things. However I was sick and tired of doing nothing, and I wanted to at least try something else. I like to work, I love to help people and I wanted to feel as though my brain was getting a workout each day, which is what led me into coaching.

I think that my coaching practice is supporting my health and the lessons my health has taught me, support the work that I do. I have had to become a lot more patient with myself, and that’s been tough. My nature is want to do everything, for myself, by myself and I want to do it right now, thank you very much. Asking for help, accepting help, taking things at a slower pace, not confusing my worth with my productivity, going easy on myself when I can’t do any more? Yeah, they all challenge me every day, despite having dealt with this for months now, but guess what? They’re lessons that almost all of us benefit from, no matter the state of our physical and mental health, and that is part of the message of balance that I continue to spread.

What works for me now

I have learnt a lot about what works for me over the last few months. I schedule my work days in a way that supports my health and I massively benefit from working from home. I ensure that client calls are given top priority so I’m always fresh when I come to them, and that I rest after them when I need to. I don’t work 40 hours a week, because I neither want to or have to.It wouldn’t help my health improve and my business doesn’t require it, so that’s one less thing to feel bad about!

The reality is, I am a lot better now than I was in 2017. When I think back (or look back at photos) of a year ago, I was still really struggling, to physically do things and to ask to slow down. Now, I am more physically capable, and also more capable of stating my needs so I can meet them. I can see that I have built up my physical activity, the hours I can work for, the socialising and travelling that I can do. There is more of all of the good stuff now. These are things I worried were perhaps gone for good, because when you’re going through a dark time, it’s hard to believe that it will ever end.

There haven’t been many moments in which I’ve felt brilliant over those months, although I do believe pregnancy hormones may well have alleviated some of my symptoms and you can read about that here. Rather it’s been a slow and steady increase in productivity, energy and ability. It hasn’t been linear. A good week is sometimes followed by a low energy one, but I don’t always “pay” for having done a lot now. It is unpredictable, and that can cause frustrations in itself, but on the whole I can see myself living a more fulfilling life and that keeps my spirits up.

Having a chronic condition is always going to pose challenges, but on the whole I am grateful for the lessons that CFS has taught me, and I am also grateful that I am able to continue living a life that I get a lot of enjoyment from as well.

Having CFS isn’t fun, but there are people out there who are living a good life with it, and I should know. I am one.