It is incredibly difficult to describe how debilitating and life changing M.E. is to a non-sufferer. Foggy thinks that having a range of sufferers ‘guest blog’ with individual stories will show the wide range of symptoms and levels of suffering. This particular blog is written by Lisa who has severe Myalgic Encephalomyelitis (M.E).
Here is her story….
Hello there, I’m Lisa (@2lisaland); I wanted to share with you a few of my experiences of having M.E. I went to university as a mature student and had never had any health problems at all until I caught glandular fever. Overnight I went from having a full and active life to only leaving the house for doctor appointments.
I was told it might take a few months to get better, but it didn’t. It became M.E. and, up to this point, I’ve had 5 years of being housebound. I did have a period of much better health for a few years but then relapsed after catching a stomach bug. I had heard you don’t relapse for as long or as badly, but it turns out that isn’t true.
M.E. for me, feels like having the achiness of flu mixed with complete exhaustion. My body feels like it’s wearing a suit of armour, dragging it up and down the stairs is quite a feat. I have bad brain fog so writing this is a struggle and I have to write little bits and then put it down. I can’t read books as by the end of a page it’s all just a blur. I get exhausted very quickly when concentrating on a conversation. I often have pain in my legs, my temperature can be all over the place and I get erratic heart palpitations which I find quite unnerving.
I wake up feeling like I’ve run a marathon so spend most of the morning in bed listening to the radio to give my body a chance to recover. I carefully split the rest of the day into chunks of watching TV and lying in bed listening to music or radio 4. I need help to wash my hair and rely on others to do the housework, shopping and walking the dogs.
I miss so much about my previous life, like chatting with my friends, going to the cinema, going out for a coffee or for a meal, being able to walk round my garden. I miss not being independent and being able to trust my body in a way that I completely took for granted when I was well. I miss my job. That might sound strange but I worked in a role where I was helping people alongside colleagues who were like minded to make a difference. I miss being part of that community. It is hard to be on the sidelines when so many people have it tough and need help. Now I am the one needing the support.
M.E. is a difficult illness to live with. It dictates everything, is very debilitating and yet invisible. Not only is there the physical side to contend with, you also have to deal with the endless frustration of being ill and the grief of losing the life you once had. It takes a lot of courage to adapt to a new way of living and let the old one go. I don’t always recognise that courage in myself but can see it clearly when I look at other people with the illness who are a source of comfort and inspiration for me.
I’ve adapted by finding new interests. I’ve started listening to classical music which can be very soothing or deeply emotional. I’ve watched many gardening programmes and learnt about plants and design. I enjoy a lot of sport on TV and have discovered radio 4 which is full of comedies that make me laugh, dramas and programmes which teach me something new. A good boxset or audio book is a godsend. Whilst all these make me feel like I’ve reached my 60s, many decades too early, they occupy my time and help it to pass more easily. I’ve realised I need to take enjoyment from small things, value the things I do have, and let go of how I think life should be. This is something that takes practice and discipline and some days it is easier than on others. I don’t feel I’m fighting M.E.. I feel I’m trying to just get through each day as best as I can with as much peace and grace as I can find.
I am deeply grateful to those who have stood by me and continually supported me. They have kept me sane as have my 2 gorgeous dogs who make me laugh and love me even though I can’t take them out for walks or have playtime.
I am writing this because the illness and its impact is rarely understood and it takes a lot of energy to explain it to people. Hopefully by raising awareness of the reality of the illness we can at least save sufferers the feeling of isolation that comes with having an illness that is so misunderstood.