ME (Myalgic encephalomyelitis or Myalgic encephalopathy, mistakenly called chronic fatigue syndrome (Cfs)) is a neurological condition that is poorly understood by the medical profession and the general public. It can vary from people who work full time to those who are bedridden for decades, sometimes it is fatal.
As some of you know I have Severe ME, it has varied over the years as to quite how severe, from being able to go downstairs (on a stairlift) and lay on the sofa for an hour to completely paralysed. People only ever see me on that good moment on the sofa as very severe ME is invisible.
Many people don't realise how severe ME can be due to people being stuck in bed unable to be part of the outside world. It's an invisible condition on the whole but one brave friend has spent months putting this together to show some of what she goes through.
Please please take a moment to look, reflect on what it must be like for that to of been your life for over a decade (the person is still classed as 'young') and then share it with friends. She rarely has a voice but you can give her one by sharing this.
Visible ME #1: an actual pic of my room when the lights are out. I live in total darkness.
Visible ME #2: my room with lights on for carers; a soft red glow (less red than in pic).
Visible ME #3: Smartphone: Window on world; saves energy; aids communication.
Visible ME #4: some of my cooling equipment for hot flushes and sweats.
Visible ME #5: all sound is very painful and exhausting. I need earplugs 24-7.
Visible ME #6: Draught excluder. Can't bear even a crack of light.
Visible ME #7: red and amber bulbs; cannot tolerate any bright light.
Visible ME #8: too poorly to use mug, everything is administered by syringe
Visible ME #9: Even dim light very painful and exhausting. Need eye protection at all times.
Visible ME #10: I use pads due to double urge-incontinence and being too poorly to use a bedpan.
Visible ME #11: Tube-fed as too much pain and exhaustion to eat and drink.
Visible ME #12: vital advice, support and awareness, which is hard to come by
Visible ME #13: bed cradle to keep the duvet off my bent feet and prevent further damage.
Visible ME #14: Smell and chemical sensitivity makes me very ill and severely limits me
Visible ME #15: ME causes many types of constant, severe pain all over the body.
Visible ME #16: soft, loose clothing, bedding etc, due to pain, discomfort, touch-sensitivity
Visible ME #17: daily cocktails of drugs, though doctors are uneducated about appropriate symptom-relief
Visible ME #18: profile bed required to assist carers due to my severe lack of mobility
Visible ME #20: baby spoons required for very occasional oral feeding as they they are small
Visible ME #21: weakened body and immune-system means more susceptible to infections
Visible ME #22: all products have to be completely non-scented (inc no chemical smell). They are hard to find!
Visible ME #23: communication is so difficult. Special aides are needed for when I can't speak at all
Visible ME #24: Nausea and vomiting can be a big part of everyday life with ME
If you would like to leave a message for my friend who did this then please leave a comment and I will pass it on.