Opps this is a long one 🙂
Twice in the last month good friends when I told them I had M.E. had never heard of it. Fair enough English isn’t their first language. When I then said sometimes it’s known as Chronic Fatigue Syndrome* thinking they may have heard of that, they responded with, “Oh I think I have it too! Hee, heee!”
The other day my curmudgeonly neighbour said to me, “I hear you’ve been ill.” “Yes, I have M.E.” “Have you had a few weeks off work then?” “No, I’ve been off for four months!” “It’s not that you can’t be bothered going back to work then, hee, heee!”
When I first went off work after two weeks I tried to return, just doing two hours a day. I had heard that some people had been bad mouthing me, saying that, “we’re all tired, she should just go to bed earlier!” One lady completely blanked me, I purposefully said hi and she walked on by me. She was disgusted with me for being so lazy! Yes, those that know me – lazy! I only used to work 11 hours a day having cut it down from 12+ as I didn’t want to burn out!
The first three people were just examples of ignorance. How many people you know could tell you what M.E. is? My two friends are fabulous and would be horrified if they knew that their comment made me feel quite raw. The last example is also ignorance compounded with plain rudeness!
Ignorance about M.E. is to be expected. It is the hidden disease that rarely shows it’s face. If you’re meeting somebody with M.E. outside of their home, you’re meeting them on a good day and you possibly wouldn’t even notice that something was up. On a bad day, I can only drag myself to the sofa, on a really bad day, I can’t drag myself out of bed!
I’m lucky that I only experience mild to moderate symptoms – I’m very aware that there are people who suffer significantly more than I do. There is a scale for assessing the severity of your M.E., I think I’m roughly 38% as active as I used to be pre-M.E. and this is a huge positive – I could be 37% worse!
So how does M.E. affect me: fatigue, headaches, muscle pain, joint pain, appalling sleep, pins and needles, frequent urination, stiff and painful joints in my hands, pain in eyes and blurred vision, sensitivity to noise, back ache, neck ache and random others that come and go for no apparent reason. I don’t get all of them all of the time and they are not always debilitating, sometimes it is just a dull pain in the background.
By far the most debilitating aspect is the fatigue – this is definitely moderate to severe always. Do you recall a night out that probably started at lunch time the day before – you drank, you walked miles to different pubs, you danced all night? Do you remember waking up the next morning, feeling so tired you couldn’t get out of bed? You doze all morning and yet you wake up feeling no better? Well that’s me or M.E. I’m not that bad all the time but it does always feel like that languid hangover dullness and exhaustion to one extent or another.
There is a fundraising campaign at the moment for an organisation called Invest in M.E. There is a group selling t-shirts that show an empty petrol gauge and the slogan ‘running on empty’.** It feels like I’m never able to get that gauge above empty yet I still need energy for my pure existence.
If I don’t pace myself and plan out all my activities for the day the consequence of that gauge running completely on empty is really frightening especially if I’m not at home.
Last weekend we went to Cardiff just for the Saturday night. I hadn’t really left the confines of Stratford since early January and was desperate to see a different world. We thought we were being careful. We broke the trip half-way to get breakfast so I didn’t stiffen up too much; I rested when we got there; we went out for a coffee and a little walk around (20 min walk with coffee and various other stops); I then rested for two hours before we went out for food at 4 p.m. We ate dinner and then decided to go to the cinema. This was going to be the longest I had without being able to rest for months – 4 hours out of hotel.
About an hour into the film I began to feel the usual signs that I’d done too much – a fog descends and pain levels increase. I was a fool and stayed, it was the first time we had been out like this for months, it felt like a date and I didn’t want it to stop. By the end of the film I was in a state of near collapse.
Under normal circumstances the hotel was no more than a 2-3 minute walk from the cinema – it took us at least ten minutes. I needed to stop every couple of steps to get my breathe back and rest. My entire body was in agonising pain and I was fighting not to burst into floods of tears. Chris effectively had to hold me up. We always joke at this point that others must think I’m absolutely drunk out of my head and at only 8.15 as well!
We eventually returned to the hotel and I went to bed, aware that my poor pacing would now lead to a four day recovery pattern – these days it’s always the same. Day One – collapse and get to bed; day two – in bed all day (though this time we had to drive home too – fun!); day three – out of bed but not able to do much but sit on sofa and make basic lunch; day four – able to leave the house and walk to town (0.3 miles) have coffee then struggle home and then on sofa for rest of day. By the next day I’m back to normal whatever that actually is!
This is probably quite shocking for people who know me or people who know nothing about M.E. but remember I’m one of the lucky ones. I get to leave the house at least 4 days out of 7, I’m not bed bound, I don’t need crutches or a wheelchair, I can wash myself and dress myself, I can feed myself.
I wrote this not to get attention or have people feel sympathy for me, far from it. I simply want people to know the reality of M.E. I want to unearth this hidden disease, I want to reduce ignorance about it so that at least you the reader never make a throw away comment to a sufferer that hurts them through ignorance.
* yes! I know that some people say it’s different but the Canadian Consensus Criteria doesn’t.
** to buy a t-shirt go to http://www.mamachill.moonfruit.com