‘I got struck down by the juggernaut that is CFS/ME’
I am 51 years old. I am a mum to three wonderful children, I run a small business and also do two voluntary jobs. Most days I am out on my bike for a fairly vigorous 40-minute bike ride. By all accounts, I would say I have a very busy and active life.
However, in 2009 when my kids were 18 months and three years old, I got struck down by the juggernaut that is CFS. It came on overnight with no infection or obvious trigger. Apart from the crippling fatigue, I experienced involuntary muscle twitching, headaches, muscle aches, weight loss and nausea. I was working as a GP at the time and only took two weeks off before trying to return, having trouble even going up the stairs to the surgery, and lying down in between seeing patients. For the following seven years I desperately tried to keep everything on the road, working only two mornings a week and parenting the best I could in-between times.
When I look back now, I can see I was really just chronically unwell, ‘booming and busting’, and if I had stopped work a lot earlier, I could have recovered much more quickly. In 2015 my father became terminally ill and I added that ball to all the others I was juggling. After he died, I fell off a metaphorical CFS cliff. For the following 18 months I was extremely ill. I wasn’t able to leave the house, struggled to even get to the bathroom down the corridor, and took two weeks to feel well enough to go downstairs in my house. I lost two stone in weight in five weeks and felt like my body was screaming. Most of my days were spent lying on my bed staring at the ceiling, drowning in a sea of fatigue, whilst I could hear the voices of my family downstairs getting on with life.
At this stage, I really went down a deep dark hole mentally, with both anxiety and depression. The stomach wrenching fear of not getting better sent me into a tail spin and I became agoraphobic, having a panic attack every time I tried to leave the house. It was only when I accepted my fate and agreed to take SSRIs that I turned a corner.
Vitality360 really were a lifeline for me at that time. I started with 30-second walks around the house and very slowly built up my activity levels. Over the following months, I started to go out and about, starting with short visits to a park or field with family, trips to the ice cream van, and eventually back to the school playground.
Over time, I crept back to some semblance of a life. A year or so later, I started exercise, in the form of walking and then cycling. It was a bumpy road, with multiple setbacks along the way, but I did get better. I see myself as fully recovered. I have been living this busy life for about four years now, with no significant setbacks, so it is not a ‘boom’ in a boom and bust cycle.
If you are sitting where I used to sit, you will want to know if I am 100% better. I would say I’m 99% better. If I really overdo it (which I’m sometimes tempted to do) I can experience a bit of fatigue, but once I have a quieter couple of days, I bounce back. However, it has never been bad enough to stop me from functioning. Obviously, after going through such a horrible, life-changing experience, I’ve spent a lot of time thinking about why this happened to me and how I got better. Of course, nobody fully knows why it happens. I am sure that it is a physiological illness, but I also think I was chronically stressed over a long period of time, and I wonder whether that at least contributed to the trigger. I think the things that got me better were a combination of physical and mental. Gradually increasing my activity and then building up to exercise has been instrumental. My cycling has massively increased “my battery” and pushed out the cage walls that I used to feel constrained by. Stopping work as a GP was initially painful, however I think ultimately it was very stressful and perpetuating my illness, so I have no desire to go back to it anymore.
Dealing with my anxiety was also a massive step in my recovery. Feeling that you can’t do too much, you can’t do too little, but shouldn’t feel that you are “walking a tightrope” sometimes seemed like an impossible task, and the illness felt like it was designed to make you mentally ill. The anxiety exacerbated my CFS and I got into a vicious cycle that stopped me from recovering. Learning to relax (something I realised I had no idea how to do), and stopping myself from fretting constantly, broke the cycle and allowed me to properly start my recovery.
The illness of CFS is absolutely devastating, and my heart goes out to all those who have been unlucky enough to be affected by it. But the main message I want to convey to you is that YOU CAN GET BETTER. I think the hardest thing about being so ill, was the lack of hope. There seem to be a lot of messages of doom and gloom out there, and positive, hopeful messages of recovery seem much harder to come by. But I believe I am proof that you can truly recover. Just hang in there, and keep your eye on the light at the end of the tunnel, as it is there.