A few years ago I was Wonder-woman.
Ok so I only wore lycra to cycle and I didn’t have a stylish cape or long hair, but I was the person that could do everything. I could set my alarm for 6:30 am to be in the pool in Coventry at 7:30 am, swim for 45 minutes and get to work for 9 am – either that or I would have cycled in from Warwick. I’d go for walking meetings and end the day in a coffee shop for a chat about how we can change the world. On top of that, I was doing my Masters and planning my wedding.
But soon after my marriage broke down, so did my health. I managed to finish the Masters but I kept getting excruciating headaches. I tried phoning 111, the NHS helpline but they just told me to take over the counter drugs which did nothing. I struggled for months until I eventually mentioned these headaches to a friend of mine, Gemma. She’s lived with chronic illness, in particular migraine, since being an adolescent and she suggested that I start recording my symptoms, noting down the intensity, the dates and other things that were going on in my life. And I started to notice patterns. I noticed it was getting worse.
In the year that followed, my life changed dramatically. No swimming, much less cycling – dragging myself out for a half an hour walk some days was quite an achievement, as was reading a few pages of something remotely brain-stimulating. I reduced my hours to half-time and even then was off sick for three months. I had a GP that recognised me -how could this be happening?! I thought it was only old people who went to the docs this regularly!!
Looking for joy
At 31 I felt like my life could be over. I remember lying on the sofa, surrounded by layers of blankets with tears that wouldn’t stop falling. But they did, thanks for friends like Gemma. I could WhatsApp them and tell them honestly about how I was feeling. They encouraged me to keep looking for the joy and their input made me better able to adapt to what my life now looks likes, without being frustrated I couldn’t do the 20-mile bike rides or feel the cool water of the swimming pool.
With a little help from my friends
I eventually got to see a neurologist who gave me an official diagnosis and I’m now on some drugs that are helping a bit, but I still have to consider each day with my ‘health comes first’ mantra, and friends like Gemma are helping keep this focus. It’s because of these friends that my health didn’t spiral completely out of control. That I had people telling me it was OK to not be OK. Sure, I needed the health service to help me with my chronic illness, but in many ways, I needed these people just as much, if not more.
I want to see everyone in Coventry who’s struggling like I did (and am still), have those people to support them. I know this simple concept has the potential to transform lives – and I don’t mean necessarily reduce the number of sofa and blanket days; they will still happen for a lot of people with chronic illness (including me). But maybe the sofa days will be with some hope, not just tears.
I can’t do this by myself. I need people like you; people who either are struggling, or people who know someone who is, or you manage a service, and you want to create change or to help people with chronic illness. Together we can make those sofa days more manageable.
If you want to get in touch about making sofa days better, please email me: firstname.lastname@example.org or follow me on Twitter
We have set up the Feel Good Ambassadors FaceBook Group as a place where we can support each other no matter what life throws at us.