As we all gasp at the thought its May already, I’m gasping that its been a year since it was M.E Awareness Month already.
So has anything major or exciting happened? Well in that year they havent found a cure. And I’m not too sure they are much closer to understanding it.
I know personally the support from my own doctors clinic has gone down hill drastically from nothing. How it can get worse is rather remarkable in itself.
I am rather sceptical in awareness days/months as in all honesty it doenst change much. The same people are still saying ‘oh you need to get out more’ or ‘oh you just need to try this new age thing or other’.
People get fed up of hearing about it all. It doesnt effect them so they read it, may say ‘ oh you poor thing’ and then thats it for another month.
Well for them it is.
Am I sounding a bit fed up or cheesed off? Probably because I am. When I had my gallbladder out people understood. There are operations, scars and everyone’s sisters, aunts brother has had it. You go to hospital get sorted out, come home and life carries on less painfully. Well in general it does. But what happens on 1st June when people have stopped reading and being aware of M.E. Nothing happens.
Do people understand ? Generally no. No one can be in that much pain all the time. They would go mad ….er hello?
And no M.E isnt where you feel tired all the time. I wish I just felt tired all the time. When your tired you know after a nice sofa and duvet day and a few naps you’ll be bouncing around again. For normal people they do too much, get tired, catch up on sleep and all better again.
M.E is sometimes explained as having a bunch of spoons or coins at the beginning of the day and you assign a spoon or coin to each activity. Getting dressed = a spoon/coin. Shower = a spoon/coin. But someone takes your spoons or coins so you never too sure how many you will have for the day but you know it wont be enough to get through the day.
I explain it like a phone battery. Normal folk have full 4 bars of battery when they wake up. As they go through the day it slowly drains so you plug the charger in and top up back to 4 bars. M.E folk wake with one bar flickering and the charger is a bit dodgy. As you go through the day your bar gets less so you plug in the dodgy charger but like with the old mobile phones when they get too low on battery they cant do much . Even when charging you cant use the phone as it needs all the power to just charge. And the charger never gets it above one bar. Some days the charger works but most days it doesn’t.
But the battery just explains the energy bit. The fact that you have none. It doesn’t tell you that M.E folk can hurt all over. Imagine your about to come down with the flu. Everything hurts. Your eyelids hurt to blink. Bits hurt you didn’t know you had. Your head feels foggy almost hungover. Your throat is sore. Just sitting still hurts something somewhere. M.E folk have that every day. Sometimes for weeks or months on end. A lemsip and day of work wont fix it. Sometimes the most painful bit is knowing you’re going to wake up everyday like it.
Brain fog ? We get that a lot. Its annoying, frustrating and makes us feels stupid and angry when we cant remember words or get them muddled. Normal folk think its hilarious and take the mick, we secretly want to scream its the M.E and punch people but we are just wasting our time.
M.E is so unpredictable, relentless and confusing. No two days are ever the same and not all Doctors treat the same. The last prescription check up I had the nurse referred to the tablets I have to take every day. I don’t particularly like the fact I have to take them every day. She asked why I took them. I explained they help with the pain and I had come off them but had to go back on as they really were doing something. She said it was ludicrous that I was on them and said she was putting a stop date on them.
So thank you for reading about M.E. Don’t say ‘you poor thing’ or ‘have you tried….’ and if you tell me I just need to go for a walk I may hit you
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