Hello!
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.
https://www.facebook.com/media/set/?set=a.1505795216348066.1073741858.100007528067190&type=1&l=bdc1e104c8
This is me with The Mayor of Derry....
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”.
Claire xxx
*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.
