Are you missing M.E.? - Martin's story
May 01, 2019
I was diagnosed in April 2018 after forcing my GP to correctly diagnose me. However I believe I have had M.E since I was 18/19 years old. Over the last three years it has become severe and it is consistently getting worse.
In the first few years I never understood why it took me ages to get up out of bed, and why I never felt like I had slept. I thought it was normal because I was working. At points I was working two jobs and caring for two kids. I always thought I had just pushed myself too much. Then after a while I was working at British gas and kept falling asleep at work - just passing out for no reason. I struggled more and more. For the last three years I haven’t been able to work or do anything.
Right now I am bed/chair bound. I can maybe use the bathroom myself once a day if it’s an okay day. Other days I am fully stuck in bed. All of the symptoms are challenging. My fatigue means I can’t get to the front door or to the bathroom, I have light and noise sensitivity so the room is dark and quiet at all times. I get brain fog at times which is awkward and embarrassing. Managing my own temperature is hard. The insomnia is unbearable. I have a sore head, back and chest it’s so annoying. My depression is really bad at the moment because of my condition.
I can't move out of bed. I struggle to lift an arm, or my head. I usually just stay in bed. At first, the impact was like being a young child again wetting the bed. My partner has to take time off work. I struggle to eat so stick to liquids. It brings my mental state down. This happens from time to time depending on what I do.
Before diagnosis, my GP kept saying it was just my depression. They don’t visit me at home so it’s been over a year since I’ve seen any medical professional and over a year and a half since seeing an actual GP. I have no access to a wheelchair. My GP can’t support me to get a wheelchair and I don’t know how to appeal it. It’s hard as there’s no M.E specialist that covers this area or any awareness or support. I am on my own.
Although not a symptom, the isolation and misunderstanding/lack of awareness is probably the worst thing. Because you feel alone, we are not a large group of people to the rest of the world. If I had any other illness I would be treated differently and more understood. My lack GP's of knowledge and understanding is tough. The main GP I spoke to had a lack of interest and understanding about M.E. and my care.
The advice I would give to other people with M.E. is listen to yourself, trust your own mind, body and instincts. Be prepared to be misunderstood, if you can get an advocate get one. Make sure your GP understands M.E themselves. Join Action for M.E.‘s forum, I use it and I like the fact I can help others and I may find something that will help me. Sometimes I learn something I never thought about and other times it’s a space where I’m able to just rant and let out my frustration.
For people with M.E. who are severely affected, like Martin, understanding from medical professionals is crucial in managing symptoms and accessing social care. Knowing that there is someone who will listen and support them is vital for their well being and quality of life.
We have a number of resources available for medical professionals who are interested in learning about M.E. By taking the time to learn about this condition you can help tackle the ignorance, injustice and isolation that people with M.E. face every day. Help change lives now.