My name is Claire (@1987clairebear if you fancy saying hello on Twitter!); I’m 27, and very proud to be a Foggy sitter. Foggy visited Northern Ireland in November 2014 – you can read all about his adventures here.
Just like Foggy’s human, Sally, I have ME (myalgic encephalomyelitis, also known as Chronic Fatigue Syndrome, or CFS), and I was diagnosed in March 2014, after several years of symptoms and tests. Sally has asked me to write a short post about my life as an ME sufferer; this is my first ever blog post, so bear with me!
People hear the phrase “Chronic Fatigue Syndrome” and assume that fatigue is the only symptom, that it’s just like being “a bit tired”. For me, fatigue is the most severe symptom (and this isn’t just being a bit run down – it’s complete and utter exhaustion, that I can’t quite describe), but it is far from the only one. There’s also- chronic pain, usually lower back, hips, stomach and neck- brain fog – difficulty in concentration, mixing up or forgetting words, names etc- difficulty controlling/regulating body temperature- breathing problems- depression/anxiety
I work as an accountant; I joined Grant Thornton in Belfast in August 2010, and worked my way through the qualification process, qualifying as a chartered accountant in September 2013. ME has had a significant impact on my ability to do my job. The constant state of exhaustion has resulted in cutting my hours (I now only work four days a week), and reduced travel; I’m now office-based, allowing me to get the bus to work, rather than client-based, when I would have driven anything from 20mins to 2hours per day. Brain fog means I struggle to think clearly at times, meaning I have to work extra hard when preparing for meetings, presentations or even simple tasks like telephone calls. When I am not working, I am usually resting. When I get home from work after 6pm, I have dinner and go to bed almost immediately; it’s not unusual for me to be asleep by about 8.30pm every night! On my days off, I mainly spend time lying on the sofa resting, listening to music, or watching TV if I am well enough. My body seems to go into “recovery mode” on these days, and the slightest thing takes a lot of effort. Sometimes I wake up, have a shower, and then need to lie down for a while before I’m able to find the strength to get dressed!
This is the side of things I don’t let people see. I am guilty of trying to hide my symptoms around others, so they don’t see the times I don’t have the strength to climb stairs, to get properly dressed, or even to just sit upright. I guess I’m not quite “OK” with feeling like this yet, and so I avoid letting others see me like this.
I have been a musician since I was 8, and am happiest when singing or playing piano (brain fog means there is no chance of these happening together!) When I am well enough, I go to church on a Sunday morning and will often lead the singing. I have been involved in this for several years now and love doing it. I think it is when I am too ill to do this well that I get most upset; it is something I am so passionate about and love doing, and it’s torture when I’m not well enough to do it.
ME does not define me, and although it affects almost every part of my life, I’m learning to try and live with this illness as best I can. I’m slowly learning that “it’s OK not to be OK”.
*Foggy* (and Sally) Claire, is a much valued member of Team Foggy and her precious, fully functioning, spare time is often spent helping as a place to bounce ideas off. Sally didn’t know Claire pre-World Tour but now considers her to be a friend and hopes to stay in touch well beyond Foggy’s current adventures.