It’s M.E. Awareness Week so you’re likely to see a lot of posts about the effects of the illness. Please keep an eye out for them. As a quick kinda disclaimer- please excuse any typos in this post. I was really too exhausted to write today after spending time in my garden yesterday, but I wanted to write something to mark the occasion. I can’t read back over what I’ve written before posting so forgiveness would be very much appreciated.
I have also been diagnosed with FMS on top of the M.E. so it’s difficult to disentangle the two and to say which symptoms belong to which condition, if indeed they’re not just 2 presentations of the same condition. My symptoms are many and varied. Of course there is the one most will know about: fatigue. This isn’t just feeling tired, this is feeling flu tired. This is that dizzy feeling of not having slept for days, even when you’ve just slept for 16 hours straight. This is a tiredness which doesn’t go away, no matter how many rests you get in.
Silly things, like listening to people talking or reading a book can be incredibly exhausting, and the tiredness from exertion can take a couple of days to hit you and then entirely wipe you out.
Then there is the pain. I have inflammatory pain, muscle spasms, nerve pain etc. I have pain when I stand, pain when I sit and pain when I lie. If I don’t fidget in my sleep I become rigid, if I lie on my front I become rigid, if I lie on my back or side my legs go numb and then the nerve pain sets in. I have more pills than you could find at a rave to tackle specific types of pain, and live with hot water bottles permanently attached at several points of my body.
Then there are the issues with my bladder and bowel. The former works far too much, and the latter seems to have retired and gone to live in sunnier climbs. There’s no more a sophisticated symptom than an impacted bowel. There are potions for this too. Further up the digestive tract there are the issues with nausea, vomiting and heart burn, also comes with attached pill. Stomach aches associated with IBS are also a constant companion, though I could be a bit more sensible with the foods I avoid it often just comes down to what is easiest to make/consume.
Even my womb is trying to get in on the act so that I have a completely irregular cycle and very heavy bleeding to the point of anaemia. Alas many of us have a catalogue of intolerances and allergies and oral iron is one of mine. The doctors don’t seem to want to give me IV iron so instead it’s a matter of waiting until I’m so anaemic I have to have a transfusion and the risks they entail.
Brainfog makes me seriously confused so that names of people and things are all interchangeable. I don’t even know when I’m saying the incorrect words and as such I can become quite frustrated with people when they’re not grasping what I’m asking them. This has resulted in such wonderful exchanges as telling my son to put the dog’s bowl in the washing machine, the washing in the dog, and telling my then 5 yr old to go in the garden to wait for me (in the pitch black) when I actually wanted him to wait in the bedroom. Sometimes I think it would be best if I just mimicked the dude in Memento and bought a room full of post it notes and had the names and pictures of the different white goods tattooed onto my arms.
The gods of irony seem to have smiled upon people with M.E. to ensure that many of us also have to experience insomnia, despite the fact that we’re already constantly on the brink of sleep. These cycles of insomnia, then hypersomnia, help to ensure you can never have a life predicated upon routine.
The propensity for many of us to also suffer from depression (Is it any wonder considering all we have to put up with?) also adds to the exhaustion we generally feel. This is also compounded by the fact that good friends are hard to keep when your life is so confined and so loneliness and social isolation are big factors in our lives and huge triggers for serious depressive episodes and suicidal ideation.
There are also odd little things like I have a body temp of a tiny bit above 35 degrees, and a blood pressure that is consistently very low to the point where it doesn’t take much for me to faint, which doesn’t help with the general feeling of dizziness. Light, sound and touch can all be painful and overwhelming. I can’t wear fitted clothes because the touch of waist bands, collars and cuffs hurts me. I regularly have bouts of acne and my hair is falling out in clumps. My teeth and nails are very weak too and I’ve had to have several back teeth removed despite very good oral hygiene.
I spend my life largely alone in a dimly lit room, mainly with only my social media friends to keep me company. I live in pyjamas, and find it difficult to wash or change my clothes. I have far too close a bond with the guy who delivers take-aways, another with the Parcelforce guy, and again with the Tesco delivery driver. On the one hand because cooking and shopping or hard, but also because I’ll take the little social interaction I can get. I only have a couple of real life friends left who I love dearly and who are so understanding and always make the effort to visit me at home and seem to have forgiven me for the number of times I’ve had to shuffle off to go to sleep. My kids do most of the housework and my 11 yr old Is starting to cook a lot of the meals. They also wash my hair for me and help me get dressed when I have the energy. Even the 8 yr old has learned how to make teas for me using the one cup machine.
Despite having a life lived in this way, there are still those who see M.E. as a form of malingering. I still see people using the term “yuppy flu” on social media, and despite the fact that for decades the World Health Organization have classed M.E. as a neurological illness, the UK govt still employs a psychological framework when considering M.E. and benefits. This results in them espousing harmful cures such as Graded Exercise Therapy. People like Sophia Mirza have been sectioned in psychiatric units, which heart-breakingly led to her premature death. As such, M.E. Awareness Week is incredibly important. We need to break the cycle of minimalizing the severity of the illness, disbelieving sufferers and using outdated, disproven methods of assessment and treatment.