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Living With M.E. - A Typical Day

Yuppie flu, as my illness is derisorily called by some, is no joke. If you think it is, then read on.
I am 43 years old. Before I was struck down by this affliction I was a fit energetic joiner and builder working hard both physically and mentally building up a successful business. All that has gone now, I have not been able to work since March 1993. The following has, for the past year, been a fairly typical day for me, and before that, for the previous three years it was not unusual.


Time-jump

Sometime around 8.00 am
Jill has just left for work. I get out of bed and run a bath, then go downstairs to switch the heating back on. I need to support myself on the handrail as my balance is poor and my legs are weak. On the way back upstairs, on hands and knees, I have to stop and rest once.
Strip the bed and roll the futon up, after which I need to sit and rest for five minutes.
It's not too difficult getting into the bath, but without the hand-grips getting out would be a bit of a problem. Getting dried is the really tiring bit, especially my hair, it takes such an effort and leaves my arms and shoulders weary.
Next I get dressed, I have to do it in two stages, resting for five minutes part-dressed, and then again after I have dressed. (If I hadn't been in danger of getting chilled I would have rested before dressing.)

9.06 am
I've just noticed the time. I start to go downstairs, sliding on my backside as my legs are shaky, but my arms won't take my weight so I sit on the top step for a few minutes. Eventually I get downstairs, leaning on the handrail and other bits of projecting woodwork, but I have to rest three more times on the way down.

Time-jump

9.14 am
I can't get my breakfast yet, I can't muster up the strength to open coffee pot etc. so I sit down at the kitchen table to write this.

9.21 am
The post drops through the letterbox onto the doormat. Perhaps there is something exciting. It takes me five minutes to summon up the energy to hobble the eight metres to the front door to pick up the letters; I have to lean on the table in order to stand up.

9.32 am
Begin preparing my breakfast. I have to lean on the edge of the worktop for support to get things out of the fridge and also the high and low cupboards. Reaching for things, even at shoulder height, is an effort. My legs and hands are tired and shaky and my tinnitus has started up like a jet engine idling before take-off.
I sit down to eat my breakfast (coffee and toast), but have to rest a few moments after the effort of spreading margarine and marmite on my toast before being able to eat it. (I find this hard to believe as I write it down; how can I expect anyone else to?) I was going to have a grapefruit as well, but I forgot, and I don't have the energy to do anything about it now.

9.51 am
Finished breakfast. I go into living room and sit on the settee to watch TV. After 10 minute I give up on TV, it's rubbish, so I change to BBC Radio 4 and lie down.

Time-jump

10.21 am
More rested now, I get up and go to clear the table. The shakiness has gone but I still feel tired out. I go down into the basement to put a load in the washing machine, I have to lean on the handrail on the way down and pull myself up on it on the way up. I have difficulty controlling a two litre bottle of fabric conditioner as I pour it into the machine's dispenser. After that effort and writing these notes, my right arm aches, but I did manage 9 minutes of activity before it's back to the settee.

10.50 am
Water the plants in the living room. It takes four trips with the little watering-can. I'm glad it was no more. After a short rest I put on my coat and shoes and go out to get the washing off the line (Jill put it out before she went to work) The effort and the cold make me shaky again and my legs are wobbly.

11.05 am
Back to the settee. First twitch of the day and my vision drifts out of focus as I relax, I get after-images which interfere with my vision. I have put the TV back on but my concentration is poor and I miss bits of what is on.

11.40 am
Get up and go into the kitchen to fold up the washing I got off the line earlier and take it upstairs. I have to lift the laundry basket up a couple of steps at a time and use the handrail to get up and down.Five minutes of this near aerobic exertion and guess what . . . it's back to the settee to rest.

Time-jump

12.05 am

Make a cup of tea and get the washing out of the washing machine. My sciatica starts to play up, on my right side, caused I think by poor posture and the way I manage stairs, always leading with the same leg. I hang the washing on the airer as I don't have the energy to go and hang it on the line outside. This time I manage 15 minutes before collapsing onto, yes, you guessed it . . .

1.05 pm
Open a tin of soup and fry some croutons for dinner. Left feeling shaky and weak with the effort. I eat my dinner off a tray sitting on the settee.

Time-jump

1.25 pm
Look through Leeds Weekly News, my arms ache with the effort of holding the paper up.

2.00 pm
Go upstairs, the second half on all fours but I manage without having to stop for a rest. Begin typing this.

2.20 pm
I need a rest now, my back is aching from sitting here and my arms aching from typing. Time for a lie down.

2.45 pm
Continue typing.


3.05 pm
Finish typing this. My back and arms are aching and my legs and feet are tingling. Phone up Leeds Met University to cancel the Internet course I'm meant to be doing tomorrow as I doubt that I will be fit enough to go. I'm going back downstairs now to slob out and watch TV. I've missed the schools programs, which are often the best things on during the day, although they do lack novelty when you see them for the third year in a row!

Time-jump

4.30 pm
Prepare tea. Some days I spend a fair while cooking, it's one of my main pleasures, but today I don't have the energy for anything elaborate, so I just throw together a tomato sauce with mushrooms to go with pasta.

4.50 pm
Go back to settee and TV. American chat shows and cookery game shows seem to be the staple diet at this time in the afternoon. Boredom.

5.30 pm
Back into the kitchen to wash up the dishes. My legs are shaky again now and the sciatica is worse. . . washing up always seems to get my back.

5.40 pm
Rest on the settee again until Jill gets home from work.
It is too depressing to continue a detailed account of the rest of the day, I'm amazed I got this far with it, but basically I do nothing else except hog the settee and stare at the box until until bedtime.
I'm not much company for Jill, the day has tired me out too much to be able to take much interest in anything or to conduct any kind of interesting conversation

Nick

Time-jump



 

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