Friday, 9 May 2014

M.E. A Day in My Life

I got the idea to write a day in my life with M.E. after watching a young man in his 20s called Barry John Evans on youtube, a video in which he'd filmed a typical day for himself with this illness. Like most people with an invisible illness he looked well, but looks are very deceiving. Here goes, this is my day.

7.30 a.m. Wake to the phone alarm. I don't feel refreshed. My sleep is poor. I wake every two hours but I need to wake up at 7.30 because it takes me three hours to function. If I sleep any later I can kiss goodbye to the day. Dark winter mornings are a nightmare.

Once I've got enough energy I wash and dry my hair. I had a short style two years ago so that I could wash it in the morning. Previously when it was a layered bob I washed it in the evening in the bath but it was too exhausting. After washing my hair I need to get back into bed and just sit for an hour until enough energy comes back to get up and dressed. I watch people going to school and work through the bedroom window and how I envy them.

9 a.m. Downstairs for breakfast, porridge done in the microwave. I'd never have the energy to do anything like cook bacon. If I've got any washing I put it in to be doing whilst I sit. It takes an hour before there is enough energy to go back upstairs and clean my teeth. I mostly go upstairs on all fours, it seems to spread the energy out.

10.30 a.m. Downstairs with the laptop in a recliner armchair to do my tweets and retweet others who do the same for me, to promote my books. Check emails etc. Do any computer work. Put latest part of my book onto word if I'm happy with it. If I've got any washing I'll put it out before I start.

Midday. Tea and toast plus banana, well they're supposed to give you energy aren't they but I can't say that I've noticed that they do. 12 noon is the magic hour. If I'm going to have a reasonable day, e.g. if I'm going to be able to visit a friend for a couple of hours I'll usually have an idea if I'll be able to by then. If I can I will be wiped out the following day and all I do is sit on their settee and chat.

If I'm not having a reasonable day but a chair day as I call them I'll maybe do some writing, that's as long as I've got the energy to think and to pick up a pen. Stupid as it seems I often haven't got the energy to do either. As I've said in my author profile writing has saved my sanity through the long hours I spend alone. I can escape into a fictional world where there is health, energy, normal life, and live in the shapes of my characters.

4.30-5 p.m. Tea time. Usually something that comes from Sainsbury's/Bird's Eye straight out of the freezer into the microwave, or a sandwich. I don't have the energy to cook a meal - or shop! Online shopping is a Godsend!

5.30-6 p.m. Bath, to be in comfy pjs to watch TV in the evening.

6.30-7 p.m. Downstairs after bath. Completely wiped out. I don't know if it's the heat of the water having a relaxing effect on the blood vessels or the effect of gravity on the body after the water has supported it but I am exhausted after a bath yet feel better for being clean.

10 p.m. Time for bed. I can be falling asleep watching TV or drinking my cup of tea in bed but as soon as I lie down my brain goes into overdrive and it can take  me ages to get to sleep, tired but wired I've heard it described as. I then wake every two hours, sometimes able to go off again, sometimes not. Wake the next day feeling groggy and unrefreshed.

In his video Barry John said his limbs always felt heavy and on the day after he'd been out for an hour he felt as though an elephant was sitting on him. I can totally relate to those statements. My limbs feel like lead weights. He also mentions brain fog, which again I can relate to. That brings mental heaviness which won't be shaken off and causes lack of energy - and the headaches! They are like no headache I ever had before I was ill. I have a variety of different ones. There are the ones which feel like the side of my skull has been smashed in with a hammer, then there are the ones that knock out my central nervous system. They turn my brain and nervous system to mush and leave me so weak that I can barely raise my fingers. Reading a book or looking at the computer screen are out of the question. These headaches can last anything from a couple of days to several weeks leaving me housebound apart from an odd day's respite. On days like those I have no chance of even getting to the local shop - I can't walk there even on a reasonable day although it is only just up the road, I need to go in the car. My fifteen year old Toyota Starlet is my legs.

I don't have good days. That would imply having days where I felt well ALL DAY! I NEVER  feel well,only occasionally slightly less ill. During an exceptional week I might have two days where I can visit family and friends for a couple of hours in the afternoon or evening but the days either side and in between are either resting or recuperating, I can't go out on two consecutive days. Mornings are a complete write off EVERY day, my energy doesn't build until the magic hour and then only occasionally. I can never guarantee to be anywhere at any given time and I have so many cancelled arrangements, when before I was ill if I said I'd be there at I o'clock I'd be there at 1 o'clock. I am lucky in that I have understanding family and friends. I sink into manic depression though if I can't get to visit my son and his family. I don't see any point in being alive if I can't spend time with people I love.

This illness struck when I was 40 in 1995 so I had at least had half a life before it was totally destroyed by M.E. My heart goes out to young people with it who have been robbed of so much of their lives. I'd enjoyed my babies although they were only 14 and 11 years old when I became ill and I was then divorced, so it was a struggle to bring them up. This struggle is covered in my memoir BETTER OR DEAD.

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There is a lot of research going on worldwide and here in the UK though M.E. Research U.K. If anyone would like to leave a donation or organise a fundraising event please visit their website it would be greatly appreciated by the research scientists and sufferers alike, thank you.
Their postal address is ME Research UK, The Gateway, North Methven Street, Perth PH1 5PP 
I fervently hope that in the not too distant future there will be a breakthrough where a cause will be found and subsequently a treatment to correct what is malfunctioning and preventing energy production, which I think is the root problem. If there is not enough energy for the body to function it has a negative effect on every organ as you are pulling on energy that isn't there. You can work through a degree of pain, and I have done in the past but if there is no energy you can't do anything. I can't imagine what it would be like to have my life back but I'm eternally hopeful that one day I just might!

If you would like to see Barry John's video here is the link.