Living and working with M.E. by Maddy.
I am 31 and I have had ME/CFS since my teens. It was brought on after I had a virus.
At the time, I was told the symptoms I was left with were because the virus had weakened my immune system.
Over the years my symptoms became worse. This led me to go back to a GP. He referred me to a hospital consultant who diagnosed me with ME/Chronic Fatigue.
My worst symptom is the physical weakness in my whole body.
Simple things like washing my hair and cleaning the house leave me utterly exhausted. I have had to have my hair cut into a very short pixie style in order for me to better manage washing and drying it.
Over the last few years, I have also been experiencing brain fog far more than ever before. This is something that I’m actually finding quite frightening. I live with my parents and they help me as best they can.
I am supported by a wonderful NHS hospital Occupational Therapist. She has helped me learn to pace my daily activities, and she supports me trying to keep my muscles active (leg exercises etc).
I’m also lucky in that I have a supportive GP, something which I know is sadly not always the case for everyone in our community.
Working with ME
For the last eight years I have somehow (sheer strength of will more than anything else) managed to work full time, but it has been extremely difficult for me physically.
I come home and go straight into bed. My weekends consist of nothing apart from me being in bed to let my body rest.
I now use a taxi to get me to and from work as I can no longer drive. I persevere at the job because it allows me some small amount of freedom from the prison that is this illness.
At the moment I am in the middle of a major relapse brought on by short staffing and increased workload at my job. I am mostly in bed, although over the last few weeks I have been able to get out of bed more and start to do little tasks around the house.
I have asked to reduce my hours to allow me to manage better at work and to also get a full day off for rest. This request has been continually refused for the last year. I am now at a stage where my employer is telling me that I face losing my job on ill health grounds.
I am already in quite a low place emotionally much of the time because of my condition and how awful it is to live with, but this latest development is causing me so much more distress and worry – something that none of us with this illness needs on top of our symptoms.
Isolation
Having this cruel illness causes me to feel very isolated. It is utterly debilitating and seems to be getting worse.
My heart goes out to my brothers and sisters in the community who have the illness so bad that they are bedbound 24/7 because of it.
I have spoken to many well-meaning people who still think (despite me explaining the reality in great detail to them) this illness just means I feel sleepier than most people.
When I tell them that’s not even remotely true, it just goes in one ear and out the other.
Trying to get people to understand what we live with is very difficult. There needs to be better awareness in general about the multitude of hidden disabilities and illnesses that people live with around the world.
To be a disabled person does not mean that you must solely be a wheelchair user or someone with a physical deformity.
ME Awareness Week Monday 11th – Sunday 17th May 2020
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