I've always been fond of a nap and thought my normal heavy feeling was, well normal, so I was misdiagnosed with all sorts by different doctors in the last few years, including Sensory Processing Disorder (which turns out is just one of the symptoms).
Myalgic Encephalopathy is better known as M.E. or chronic fatigue syndrome.
It's like walking on knives all day and sometimes my brain is foggy like I'm underwater, though you can't tell on the outside. I just look tired.
I've had to admit the brain fog is too much, I had no idea what I was in for when the doctor told me about M.E. in early September.
People close to me would question my mental health when I'd spend days in bed only to get up feeling tired. I began to believe it though I was perfectly happy to just lie back down. Not spiralling in despair. My bosses were concerned and asked if I was stressed when I missed simple routine tasks expected of me.
I went to the doctors about the pains which were becoming frequent, shooting pains and aches in my joints and muscles. Numbness in my fingers and toes. I guessed I was vitamin or iron deficient. I wondered if I was in denial about stress and I was cramped up as a result.
Knowing what is actually the matter is a relief, I feel that treating the symptoms of M.E. are actually beneficial despite the increase and severity of symptoms.
My boyfriend, family and work have responded brilliantly to my news. I need to learn to accept the help I need and actually rest as much as I can. Going part time with work will give me a chance to get back to being me again.
Pacing my day is a great way of organising adult life, the aim is to only apply 50% of the energy I need to get through each day and forward planning my time, how far I might have to walk, what I might need to carry however small. I'm learning about regulating my sleep pattern, my GP is still helping me find the right medication and who am I to comment on chemical medicine? M.E. is so under-researched doctors still don't know exactly what to do! World wide, this neurological condition has yet to be linked with anything.
Researchers don't know what causes it and each patient has a variety of symptoms (aches and pains, chronic fatigue, weakness, sore throat, brain fog, sensory processing disorder, sensitivity to light...) and cases vary wildly from mild to severe and regarding length of time experiencing symptoms, some get better in a few months or years, others don't.
I am still baffled.
I know to stay away from alcohol, caffeine and naps. Naps, of all things.
Caffeine headaches, I mean, why did I start drinking coffee? I used to drink about 5 cups a day but I've scaled back to 1 or 2 if I get cranky in the afternoon. Twinings caffeine free fruit teas!
I need to appreciate what good health and energy I do have while I learn how to get better.
Thank you to everyone who knows me and has had to deal with the mood swings and my awful crying.
(Have you seen that youtube of the little crying girl - "have you had a nap today?"
That's me. My answer is the same as hers.)
I need to be active when I can, so if you have a dog and are hitting Roath Park I need your help, tell me to put on some pants and come outside for some fresh air!