ME and Ophelia

Thursday, October 09, 2003


Living with ME

Yesterday I received an email from a fellow ME sufferer who recovered 80% of his functioning within eight years. What made the turning point happen for him? For some sufferers it happens within 2 - 8 years, for others it takes longer and, in a lot of cases, never. What is happening to these people? Is something healing or deteriorating - and if so, what? No-one knows.

Today is my fourth anniversary of living with severe ME. I am a shadow of my former self and it has taken a lot of getting used to. I have been unable to venture beyond my post box for the past seven months. I am up and about for less than half an hour of each day now, and did not achieve last year's goal of making it to the beach at the end of my road. Worse things happen at sea. Hopefully, things will get better next year.

Three months ago, I hired a fit young mother to visit here four times a week. She is very helpful and spends five hours weekly keeping everything spic and span and prepares daily portions of ten fruit and veggies so that I can maintain my energy management programme which involves strict resting and eating five times a day, every few hours.

It certainly makes a difference to my quality of life. Less burning muscle and joint pains - fevers and sore throats are weekly not daily - brain functions better and concentration lasts longer. I am able to enjoy my computer and blog which brings me into contact with lots of interesting new people.

Since acquiring my computer in June, I have had a lot of fun and games and laughs with some super bloggers but struggled with energy sapping techie stuff and time consuming downloads, firewalls, anti virus and Microsoft updates, blogs heavy in colour and graphics, RealOne webcasts, QuickTime (wrong name) and a grindingly slow (but still loveable) Blogger at peak times and weekends: not to mention unclear instructions when trying to fix or figure things out. Still can't get my head round RSS, XML, wikis and IRC - concentration wanes after fifteen minutes, before I can take it all in.

Home computing is a godsend but the techie know-how needed is time consuming, frustrating and costly. Have managed a defragmentation (thanks to the visiting Dell engineer) but not yet backed up onto CD or used my new scanner, webcam and speakers. The computer takes up so much energy and concentration, I have to use it instead of (not in addition to) watching TV, reading and writing. I read blogs and information online and use email instead of pen, paper and diary. Rarely speak on the telephone now. More than one visitor and telephone conversation saps a whole day's energy.

My goal for the coming year is to walk 50 yards down to the beach and back without it setting me back 24/7 in bed for 3 - 6 months on end.

Never in a million years could I imagine being stricken with such a disabling illness. If anything, I thought it would be cancer. Not this kind of life.

So, if you are fit and healthy and get to feeling low, cheer up! Make the most of life and appreciate good health. You never know what's around the corner.

# posted by Ingrid J. Jones @ 10/09/2003
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