Tuesday, 18 April 2017

I look fine. I am not fine.

M.E. is a silent evil. It moves in the shadows and is barely talked about.
I don't think the people I see all the time understand, and I'm not surprised. This disease had been ignored for decades. Until recently, most doctors would tell you it's a psychological condition. It is not.
So, here's the deal...
If I am active, even for a small amount of time, it makes me very ill. Just like having the flu but without getting a blocked nose, I feel swamped. My limbs get heavy, I'm drowsy and trying to move feels like I'm wading through waist-deep mud. I feel weak, I struggle to lift my legs on stairs, I dont have the strength to stand up without help, I lean on any surface I can. I lose my grip, like a stiffness in my wrist and fingers. This fatigue sometimes doesn't lift for days, even after a few good nights' sleep. I often have blurred vision, even with my specs on.
(I think this is the most misunderstood part of the disease. I've been learning about M.E. for months and I still don't know exactly what is "too much". Anyway...)
If I don't rest, the exhaustion leads to pain. I experience shooting pains in my limbs (concentrated mostly in my joints) and a lingering ache like they're being bashed in a car door.
If I don't rest and battle through the fatigue and pain, I experience cognitive impairment, my brain starts to shut down, it's called brain fog.
This is the saddest part of it for me.
I forget words I'm trying to say, or say the wrong word entirely (off/on). I can feel the word on the tip of my tongue but it just won't come out. I forget what I was saying in the middle of a sentence, I can't process what someone is saying, I can't answer a question. I feel like a child. I get confused about bus numbers and flag the wrong one down. Sometimes I mix up numbers. I want to say 27 and fully mean the number 27 but I'll say "seventy-two". I sometimes miss letters in words when writing, I'll leave enough space for the missing letter and I'll only notice when I read it back to myself.
If I don't rest still, I have experienced blackouts. Once in work the room span and I fell. At home, I'll lay down to ease the light sensitivity, the headache, the confusion, and I'll wake up hours later, sometimes the middle of the night.
Even I forget it all until I try and explain, my reality is a life in bed. I wake up with pins and needles in my limbs and it can take a while to stretch it off. It's the same whether I get 5 or 10 hours of sleep. I stay in one spot at home and keep myself busy in a seated position. I plan trips to the kitchen like I'm carrying essentials for camping.
I only leave the house for work which is usually a struggle. I've stepped down from a role I had worked very hard for and I loved doing, I now work part time. Thankfully I have some exceptional work mates and my bosses are considerate. My close friends are all so busy themselves, they willingly agree to a catch up involving a sofa and a cosy blanket. I usually rely on home deliveries with online supermarkets. Working less has diminished any disposable income so the days are long (I've started reading Lord of the Rings for the first time, it's excellent! Just finishing the first book!). It's quite a challenge trying to get from A to B without regular bus fare or the ability to walk without rendering myself with the drama described above.
I had always been a typically busy person. Plans after work, out on weekends, I love the outdoors and sunshine the most. After living indoors for the better part of last year, I'm not surprised my GP told me my vitamin D levels were low. I miss going outside and doing what I want, without planning at least a day's rest afterwards. It's a daily challenge and I'm still learning about what my new "normal" is.
Most questions are welcome but no, I am not depressed, I am not having one bad day, I cannot just jump in the shower and I should not have to repeat myself.
xoxo

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