M.E. What is it?
Myalgic Encephalomyelitis. It's a neuroimmune disorder that effects all your joints, muscles & immune system.
I've been bed bound for a few years, I've been house bound and every day.... it's like having the flu, with a hangover whilst running a marathon!
The problem with having said illness is that - it's invisible! It carries a stigma of being "all in your head" as you can't see it. People not understanding that going round a car show is like climbing Everest for me! It's a lot to tackle. When I say I'm in pain, it's not being lazy or unfit.. it's having a painful, misunderstood illness.
Well, I say you can't see it, most days I look like a Ghost Panda. Incredibly pale with big black eyes!
Why am I writing this?
Well I want people to be made aware of this illness. I tend to keep it quiet and just 'mask it' so, act as normal as I can. That is, until pain pushes past breaking point, where I just start to malfunction per say.
Cars have been a passion of mine since I was first born. I was a Hot Wheels over Barbie kind of girl. My plans for after my GCSE's were to join our Armed Forces to work on the military vehicles. I always wanted to be a mechanic and when I missed out on a college programme school did, I decided to combine my passion of serving our country with cars (well vehicles.)
This is where having 2 viruses simultaneously changed these plans. Having 2 viruses crashed my immune system and... hello M.E. An illness I'd never heard of!
So here's what sufferers (or fighters) of M.E deal with... EVERY. DAY.
Post-exertional malaise
- This refers to the body's inability to recover normally after spending even small amounts of energy.
- Having flu-like symptoms (often called “general malaise” by doctors)
- Recurrent sore throat, with or without swollen glands.
- aching muscles or joints
- nerve pains or pins and needles
- headache or migraine
- twitching muscles or cramps
- abdominal pain (stomach or bowel problems)
- chest pain
- back pain
Sleep disturbance
- unrefreshing sleep
- difficulty getting off to sleep
- waking for long periods in the early hours
- light, dreamy, restless sleep
- sleep reversal (for example sleeping from 4am till midday)
- hypersomnia (sleeping for a long time)
- reduced attention span
- short-term memory problems
- word-finding difficulties
- inability to plan or organise thoughts
- loss of concentration
- poor temperature control
- dizziness on standing or sitting up
- hyper-sensitivity to light and sound
- sweating
- loss of balance
- poor circulation
- nausea
- loss of appetite
- indigestion
- excessive wind/bloating
- cramps
- alternating diarrhoea and constipation
- bright lights
- noise
- odours
- some foods (for example dairy or wheat)
- some medications
- alcohol
- other substances.
So yeah, that's what you deal with. Every minute of every day.
I was also just diagnosed with Fibromyalgia which is mentioned in the list. M.E & Fibro have A LOT of crossover symptoms, Fibro consists of: - Pain
- Anxiety
- Concentration and memory problems -- known as "fibro fog"
- Depression
- Fatigue
- Headaches
- Irritable bowel syndrome
- Morning stiffness
- Painful menstrual cramps
- Sleep problems
- Numbness, and tingling in hands, arms, feet, and legs
- Tender points
- Urinary symptoms, such as pain or frequency
Cars are my respite. I'm trapped in my own body by these pains and symptoms. Shooting cars gets me out of my head as it were. I relax. I enjoy it.
My dream is to become a professional automotive photographer, even with having to tackle all the above.
So I hope if you read this, you've learnt something new. I'm hoping in future to find a way to combine cars with raising money for charities like Invest in M.E. One day...
Skully x
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