Last month marked 3 years since I was initially diagnosed with Fibromyalgia, a condition that has had a massive impact on my life.
I can’t believe how much has changed since my diagnosis and how much I have learnt from people who have come from all different walks of life, both young and old. It was difficult to predict in February 2015 where life would take me in the years to come and honestly, I thought I would be stuck within a negative bubble whilst life swiftly passed me by. However, as time has passed I have found ways to cope better with the pain I am in on a daily basis and have begun to look at things from a different perspective.
Let me take you back to that day 3 years ago when I was sat in front of a rheumatologist, throwing medical jargon at me and my mum, poking and prodding me in all of the ‘trigger points’ and sending me on my merry way with a leaflet in hand. I remember having no idea what Fibromyalgia was and thinking that some antibiotics would do the job. How wrong I was. To this day, I still can’t quite believe the lack of support that people such as myself are given throughout the diagnostic process and thereafter. I had no idea what the next step would be, how my career prospects would be affected and whether I was looking at something that was long or short-term. If I had been armed with this information then things may not have been so difficult in the months and years to come.
Fast forward to March 2018 and I now feel like I have enough personal experience and information to help other people live with their condition which in turn helps me. I am by no means a doctor but, to be honest, I feel like I often know much more than the doctors that I have met (FYI – their most frequent advice is to exercise and little else.) I have seen multiple different doctors, have tried and tested a number of different medications including a tablet currently going through the testing process, spent 3 weeks on an input pain management program, have attended a Fibromyalgia support group on and off for the past couple of years, have tried both cognitive behavioural therapy and Mindfulness and regular therapy. Unfortunately, only of few of these things have had some sort of positive effect, some physically and others mentally but, to this day, funnily enough, I have not found a cure. At the end of the day, you can spend months trying out all different things but, essentially you just have to come to terms with the fact that this is how your body will function from now on and you will gradually have to learn ways of living with it. Everybody is different and I am in no way saying that it is easy. It has taken me some time to listen to what my body needs whether it be a whole day in bed or a short walk around the park. Nothing is too small to see as progress.
When I was diagnosed I was willing to try anything. I wanted an explanation for why I felt the way I did, one that I still do not have. But over time I have gotten fed up of trekking down to the hospital for appointments that are never particularly helpful and just make me tired. I got fed up of being on medication where the side effects outweighed any possible benefits. I was sick of people not knowing where to send me next or running out of things to give me. I felt like I was constantly waiting for something that was never going to happen and I realised that it was no way to live my life. If I spend all of my time hoping that there will one day be a cure then I could be waiting for an awfully long time. In that time I could just be getting on with things and embrace the person I am now rather than dwelling over the person I used to be before pain and fatigue became an integral part of my day-to-day routine. Don’t get me wrong, I still have days where I feel like I am carrying the weight of the world on my shoulders and am being followed around by a dark cloud of negativity and depression however, I have learnt not to allow myself to sit underneath that cloud for too long and push myself through the other side.
It is ok to feel down about the situation you are in and by all means, spend a day in your pyjamas wrapped in your duvet, binge-watching on Netflix but, just try not to allow yourself to get into the habit of doing so. You will feel better for it 😊