M.E., Computers. and using the Internet.

It was on a dull November day in 1998 that I became <carolyn@c-r-b.freeserve.co.uk>. I had been diagnosed with M.E. in 1996 after illness had forced me to give up work during that year. Over the next 18 months out of the window went my marriage, my social life and, what felt like the last straw, my car, which I had no hope of continuing to run now I was on benefits.  In all this there was just one thing I had managed to keep as normal and this was my regular fortnightly visit to an aunt, uncle and cousin.

It was on one of these visits close to Christmas, that I was welcomed into their home to find the 'surprise present' all carefully laid out on the dining table. At first sight of the computer tower, monitor, keyboard, mouse and printer, I was both completely panic stricken and yet excited at the same time. "However would I learn to use it," was the first thought running through my head. ( I knew I wasn't well enough to go and get any lessons). Then again, interest and excitement stirred in me. Here was the means to discover the internet; e.mail; the world wide web. I knew that if I could learn to use this computer, no matter how long it took my foggy brain to master, then a whole new world of communication and information would open up to me.

I can't tell you the thrill during that first week when I managed to 'send' my first e.mail to my cousin to say "thank you" for providing me with a computer. He wrote straight back to say "well done - your email has arrived - I knew you could do it!"

Soon I found the UK M.E. e.mail group on-line and started corresponding with other M.E.'s all over the country. Then I found sites further afield in America and discovered so much information. By then I was receiving into my 'mailbox' an excellent little production (!) 'The Pathways', regularly too. Next, I found 'wings' - a live chat group for M.E.'s all over the world to join in and found, because of the time differences around the world, there is nearly always someone 'on line' at any time of the day or night to talk with.

Having become more used to the computer, I took the plunge and left a 'message' on one of the message boards especially for people with M.E. - just saying a little about myself and how I am managing my M.E. day to day; listing my interests and hobbies in the hopes that maybe I could be of some support/use to others.

As a result, others have made contact with me. Often they are people in the early stages of M.E.; some struggling to get a proper diagnosis; feeling isolated and just looking for some support/encouragement with others who understand without needing any explanation. I know have 'gained' much more than I can ever 'give' from the privilege of meeting others in this way - in cyberspace.

Recently, I've felt well enough to re-start an old hobby 'gardening'; in a whole new different way of course. I now potter around in pots ('scuse the pun) and containers and, I'm hoping in the near future to add veggie growing to the plants I enjoy growing so much. So once again I decided to put a short message on one of the UK E-pals lists for people in my own age group this time - 50 to 59 years, and mentioned my keen interest in 'all things gardening'. This time I had a great response from other enthusiastic amateurs. This is not a site for M.E's; it is purely a site for like minded people to find penpals (e.pals) but, I always tell people who contact me and those where I make the first contact, that I have M.E. so that they understand I am looking for "an e-pal friendship only", and that I cannot actually physically ever 'meet up with them'. So far, no-one has stopped writing once they knew and, most ask to learn more about the illness so that they can understand.

Most of us follow Gardeners World on television and then follow up, using our computers for a questions and answers session 'live' on the web for up to an hour or so after the programme has finished with one of the Gardeners World experts on line too, to answer questions. Its all very entertaining and such good fun.

The computer has more serious uses too these days.  It provided instant information when recently I was asked to make 'pewbows' to be fixed to the pew ends for a family wedding and I hadn't a clue how to go about it, nor, the energy to go searching for library books on the subject. I looked up pewbows on the web and, there I found step-by-step instructions, complete with pictures of the finished article. I printed out the information and slowly made the 20 bows needed. The whole thing was a great success and made so much easier, because I have the computer.

Having the computer also enables me to help/hinder a certain person known well to you, by proofreading 'The Pathways' with him. In fact, it is in no small part due to Mike's help/encouragement/ bullying(!), that I have slowly and steadily gained confidence with my computer. Each time I say 'I can't do something' Mike responds with 'yes you can - try it'! So, I try it and find out - he's right!!

So; what are the gains:- Many new friends reached by e.mail, with and without M.E. The computer keyboard is light to use and so normal 'snail mail' letters are written, printed out and posted off in the usual way. An excellent tool for information. I feel of use to others. I am in touch with the outside world and, another bonus, my concentration levels are getting better than they were.

Any downsides:- A computer is an expensive item but mine is very 'second hand' and rather cobbled together and does the job fine for a beginner at a much cheaper price.   The good news is that the price of a new computer is rapidly coming down right now.

You have to bear in mind that each time you go 'on line' you are using your 'phone. 'Phone bills can come as a 'nasty surprise' if you aren't selective about when to be on line. I am with British Telecom., and on Incapacity Benefit and at present I find evenings and weekends to be the cheapest time on line, using 'BT Together' package of discounts and with my computer listed in 'Friends and Family' as my very "best friend". (Don't do what I did and mention that to the human who was originally your "best friend" - they can be very offended!).
And in the future for me, my M.E. and the Internet:- most likely ordering my grocery shopping on line and, having it delivered to my door. It's a nice feeling to know that I can use that service and remain independent in those times when fatigue is overwhelming and the cold weather is too. For me the computer has proved to be a real 'lifeline' after M.E. walked in with all its limitations. I lost my own little world and gained the world wide web instead. Now I certainly wouldn't be without it.
Presidents Lecture (which you may have missed)

Confessions of a Supermarket Delivery Driver.

On making our regular supermarket grocery delivery of 4 miles drive from the store to one of our Internet customers, my colleague and I were welcomed into her home with her goods as usual, by the delightful very elderly, and somewhat frail looking owner.

I had often puzzled as to how she made her fortnightly order as she had told us some time ago that she lived alone; there was no sign of a computer in her home, and she didn’t appear fit enough to be making use of some cyber café.

This day I plucked up courage to ask her how she placed her order with us.

‘Oh, it’s simple my dear,’ she replied seriously, ‘my son in New York ‘phones me up and I give him my order which he e-mails to the supermarket along with my payment details and my chosen day and time of delivery, and then I get to see you two to have a nice chat with once a fortnight.’

Trying to hide the chuckles we left, thinking how truly wonderful is this technology that allows a thoughtful son in America to enable his Mother in a small town in Yorkshire to remain so very happily independent ! Anon