Ramblings from Carole about Severe ME Day.
Today has been the first Understanding and Remembrance for Severe Myalgic Encephalomyalitis.
All my friends have been sharing links and stories about people who suffer from this illness. They’ve been trying so hard to raise awareness for that hidden 25%…the ones who are invisible and either housebound or bedbound. They’ve all been working really hard and from their beds and sofas that’s a huge achievement to think beyond just existing and getting through the pain and suffering.
I am immensely proud of them all. So many posts have brought me to tears as they open up their feelings and frustrations and let their thoughts come spilling out for all to see…to highlight how badly they are affected. They have let the world into their life for the day and it’s not a pretty picture I can assure you.
I lit my candle for the ones who have lost the battle and also for those who are still fighting it. This was a sad moment for me as I have lost a close friend to this illness too.
It’s made me think about my own situation. Like everyone out there I have my own set of problems that affect how life can be lived. Even without my ME…life is pretty difficult. As it is for so many others…different problems…same restrictions!
I would describe my ME as moderate with dips into severe. I am often housebound but I am never bedbound to the degree I can’t get out of bed unaided. It is a hard existence. One that still confuses me to this day after all these years. My ME fluctuates so wildly. I can be fine in the morning and in terrible pain two hours later…sometimes for no known cause.
For example…the past week:
This time last week I was torn between thinking of my own energy levels or going to my friends birthday party. That might not sound like much but it was a long journey (for me) and all the preparation involved and the actual enjoying myself at his do would probably mean I’d be stuck in my bed for days if not weeks afterwards…there is always payback in some degree. I never know how bad and I never know how long. So I made the decision that because the previous two weeks had been so up and down that I would not go. It hurt me to do that…I wanted so badly to be there to celebrate with him. I wanted to hug him…he gives the best hugs.
So to compensate Clive and I partied right here at home and sent him Skype videos, photos and communicated throughout the evening…we even dressed up and had party food. Not as good as the real thing but we enjoyed it. My energy was still depleted but nowhere near as much as the alternative.
I rested the next two days and that’s a hard thing to do when the fatigue hasn’t struck yet…and sometimes…yes…I get away with it. This time I did pretty much until Tuesday i had to break the rest and go to two medical appointments. Fairly local but one involved chemicals in my eye (diabetic eye screening) and it knocked me for six. I react badly to certain chemicals and boy this was one was a doozy! Added to the mix was my lovely dog had to go in for minor surgery and I don’t deal with stress too well at all these days…so woompf down i went into that spiralling rabbit hole of fatigue, pain and confusion.
My friend was meant to be travelling up this way for a visit so didn’t that get cancelled too. I always feel such a flake when that has to happen. I am not a selfish person but this illness is greedy and makes you have to be to survive.
Then lo and behold today I wake up feeling fine…my fine I have to say isn’t the ‘fine’ of pre ME me! The things I do now that takes me all day or uses up my entire day’s energy are the things I used to do for fun after being at work. Now they are jobs in themselves.
These days are so few and far between but these are the days i play catch up with house maintenance and garden. it’s not often i get to use a sudden surge in energy levels on myself…for fun and enjoyment. I am always playing catch up. So today involved cutting the grass…walking one length…sitting down…another…another rest on the bed for a while and so on…taking hours rather throughout my day. But it brings satisfaction and feeling of being blessed that I can still do these things. So many can’t even get outside and sit in the sunshine. I am so happy for these exhausting days…it makes me feel I am still alive 🙂
I don’t know how bad the payback will be from today. It confuses me that I can be so ill one day and then functional the next.
It plays havoc with my mind and feelings of doubt creep in. No wonder others don’t understand when my abilities can fluctuate so wildly. But it’s ME. I have had it in varying severity for almost 15 years now, I want nothing more than to be consistent and reliable and fun again.
That isn’t going to happen until the medical profession finds us a cause and a cure. And for those who are severely affected their time is running out and it needs to happen tomorrow!