May is ME Awareness Month with a particular focus on Sunday 10 to Saturday 16 May being ME Awareness Week. I blog occasionally about Gardening with ME and this week I have been tweeting some of the impacts having ME has on me, and I have now collated these below. Note that this is only my personal experience of ME, other people with ME will have different experiences and impacts on their lives.
Having #ME means…
…paying full price for train fares as you don’t know until the day if you will be well enough to travel
…making plans with friends but knowing & letting them know, that you may not be able to make it on the day
…sleeping for 8 hours and waking up exhausted to the core and in pain
…looking absolutely fine to everyone around you, when you feel dreadful on the inside
…a short walk around to the shops to get milk leaves you shattered to the bone
…ongoing trials of new medication to find something that might stop or at least reduce the pain
…the chemist doesn’t even have to ask you your name, they just get you your prescription
…a constant battle between what the heart wants to do and what the body can do
…asking a question, getting an answer, then forgetting what the question was
…wanting to be politically active, but having little energy to do more than sign petitions
…even a wonderful few hours with friends means pay-back in exhaustion and pain for a week
…no matter how carefully you pace and look after yourself, the illness can still get worse
…with increasing regularity you are trying to get the words out but your brain simply won’t work
…dealing with people’s judgements from ‘you’re lazy’ or ‘not trying hard enough’ to ‘it’s all in your head’
…1 doctor tells you one thing, another the complete opposite, & your left trying to make sense of it all
…a steady draining away of your confidence and sense of self-worth
…your world gets smaller and smaller and smaller…
#MEawarenessWeek.
This is just a small example of the impact ME is having on my life; it’s not exhaustive. I wanted to share these in the hope that this will help more understand the illness, which effects something like 250,000 people across the UK. Though I do try the remain positive, the tweets weren’t upbeat because the illness isn’t upbeat. I don’t want people to feel bad but to understand and be supportive of those around you that also have this chronic illness.
If you would like to learn more about ME, I recommended the following:
Me and My ME – Ten Things You Didn’t Know About Living With Myalgic Encephalomyelitis, article by Laura Roche, Huffington Post
Plus:
ME Association – what is ME
Action for ME – about ME
This all sounds so familiar with what I am going through. My muscle problem started over 4 years ago when I had 3 doses of full blown flue in one year and doctors are still not sure what is wrong with me! I just do what I can, when I can, but my world has shrunk and I seem to be frustrated all the time because I can't do what needs doing,
I've had the slightly more unusual slowly insidious creeping over time version. For years we just thought I tired and needed to reduce my working hours. I kept doing this but wasn't getting better and the pain started. It was in the last 3 or so years it really got bad and I had to limit work further, then stop. I went from full-time work, gardener & allotment holder and campaigning activist for several organisations, to just occasional gardener and updating the Global Justice Sheffield group website. Our world really does shrink. I hope you got something that helps the muscle pain. Just dealing with the pain is exhausting.
I'm most thankful for my supportive partner and garden.
You do bring a lot of enjoyment to a lot of people via your blog and Twitter. Not much in compensation for all the downside you list above, but it's a significant contribution. Thank you.
That's very kind of you Helen, thank you. I have to say that when it's really bad, following and engaging withTwitter & Bloggers gardeners lifts the spirits & keeps me going.