What I wear
- On certain days I can’t muster the physical strength to get dressed. On other days I am restricted by what kind of fabrics my skin can tolerate. I do though have an array of more colourful clothes, to help liven up the hardest days.
What I eat
- I’ve experienced an intolerance to gluten and dairy and lactose several times over my time with M.E. My body also has days where it can’t tolerate too much fruit or certain vegetables.
- I simply cannot be the friend I want to be because I often don’t have the capacity to even check in on my friends via text message. I forgot birthdays or can’t afford to send gifts. I have been unable to support friends at the funerals of their loved ones. I’ve missed the hen dos of my favourite people when I was meant to be helping to organise the event. My relationships are now often not evenly balanced because I cannot hold up my end of the friendship bargain; for the relationship to be about mutual support and give and take.
My sense of pride
- I get to feel proud of myself, in one way or another, most days! This time with M.E. has taught me that feeling proud of yourself can come from something like washing your own hair, remembering to eat lunch at lunchtime, or simply not throwing in the towel when doing these things might seem pointless.
- A biggie. I now live in a body that I cannot trust to perform the basic tasks a body should preform. It’s led me to question my other abilities. Society constantly reminds me that I am Less. Have you seen that social distancing measures in car parks are often using the disabled bays as part of new queueing systems? How do you think that makes the people needing those parking bays feel?
My financial security
- The disability benefits I receive are not enough to cover my share of household outgoings. I am reliant on the generosity and kindness of others, even with the higher rate of benefits I receive. I can no longer afford the very supplements that are recommended to possibly improve my symptoms.
What I watch
- Luckily for me I very rarely experience boredom, because more often than not I can only manage to watch animated children’s films that I’ve seen countless times before. Anything that could make me jump is a No-Go as the adrenal release I get is so extreme. Certain movie soundtracks affect me too. Most recently Frozen 2 exacerbated some of my symptoms because of the tempo of the music.
- Not only am I a prisoner in my own home, rarely well enough to go out on ‘Day Release’, I am also often a prisoner in my own body, at worst unable to speak or communicate.
My idea of strength
- Strength has become the refusal of my spirit to sink when faced with having to start over and build myself back up after each setback. Strength is the ability to accept what I cannot control. Strength is giving in but never giving up.