The aid I use most frequently is my pair of prism glasses. These fit over my regular glasses and contain a mirrored prism that vertically shifts the image I see by 90 degrees. This means that I can lie flat on my back staring at the ceiling and see my toes. Resting a laptop on my legs I can surf the internet, play solitaire or correspond with my friends, free from the nausea and aching body that result from sitting up too long.
I don't know if you can buy prism glasses in New Zealand, but you can certainly purchase them by mail order over the internet. There are a few different manufacturers who call them variously prism glasses, angle glasses and TV glasses. I also found that prices varied enormously, so it pays to shop around.
Two simple things that further ease my largely bed-bound existence are my packet of straws and the wireless doorbell button. Straws enable me to drink comfortably lying down, and eliminate the need to repeatedly raise the cup to my mouth when drinking whilst sitting up. The only drawback is that I'm perpetually giving away straws to children who want one for their drinks, too!
A more recent discovery is the wireless doorbell, which consists of a normal doorbell button and a battery-powered ringer unit. I use this to call for help when I'm unable to get up: the button is mounted by the bed and the ringer is kept whereever the active people in the house are. It usually lives in the lounge but my husband can take it with him if he's working outside or under the house. The big advantage of this device is that the loud noise is not made near me, but can easily be heard by the person whose attention I'm trying to attract. Such doorbells cost around $15 and can be purchased at hardware and home improvement stores.
The final aid I have that helps me to live well lying down is the computer program I'm currently using to type this article. It's a piece of free software called 'Dasher' that allows you to 'type' at a very respectable speed using your computer's mouse, so you don't need to strain to use the keyboard. I've described the use of Dasher in some detail in a previous issue of Meeting Place, and I could send you a copy of this if you are interested.
The above tools all help in various ways to alleviate the consequences of living most of my life flat on my back. I have another collection of items that address a more fundamental feature of CFS: lack of energy. By making use of these technologies I need less energy for the mundanities of life, leaving more for interesting pursuits.
I have a telephone headset similar to the kind receptionists or call center workers use, with a speaker that sits over one ear and a microphone that swings in front of your mouth. Mine plugs straight into a DECT cordless phone (I don't think ordinary cordless phones have a slot for this), but you can also buy headsets for use with normal phones. I find using the phone with a headset so much less wearing than having to hold the phone up to my ear, giving me more energy to focus on the conversation at hand.
Similarly energy saving are my bath robe and electric toothbrush. After I shower, I simply put the robe on and head back to bed, relying on the fabric to dry me instead of towelling myself off. Showering is quite exhausting enough without having to dry myself as well! With an electric toothbrush, you simply hold the brush against each of the surfaces of your teeth and it does the brushing for you. It does make an annoying buzzing noise that sometimes is too much for me, but I can almost always cope with it, meaning that I now brush my teeth almost every day. I figure that the cost of the toothbrush is off-set by the reduced dental bills I'll get in the future, because with its help I now actually manage to keep my teeth clean.
And what do I do with all this conserved energy? I still mostly have to stay in bed all day, but a few tricks extend the boundaries of my world.
Many of my activities revolve around the computer. Using 'Dasher' I keep in touch with my friends by email. I find this helpful even with friends who live locally, as email conversations stay at a leisurely pace and don't overwhelm me. I use internet banking and computer accounting software to keep tabs on our family finance, helping me feel that I'm contributing to the household. I also visit various websites to shop for seeds for the garden, sewing supplies, kitchenware and gifts. It's fun to choose things myself this way, as I don't get near the shops for months on end.
When I'm too tired for the computer but not tired enough to sleep I like to have something interesting to listen to. Listening to National Radio and the BBC World Service more or less all day every day has helped to keep me sane and made me a mine of useless information :-) My husband also borrows talking books for me from the local library. I find regular books too heavy to hold and too hard to concentrate on, so audio books are perfect. Within the Auckland City library system the fee for taking out such books is waived if you have given them a medical certificate saying that you can't manage regular books, and it may well be the same where you live.
To listen to these I have found buying a dedicated tape player (i.e. a machine that can only play tapes, not CDs or the radio) to be invaluable. Most of the books are on tapes, have had a hard life, and are prone to jam in the cheap tape decks they put into regular stereos. After trashing several tapes and spending many a nail-biting morning extracting tapes from players, we decided it was a worthwhile investment!
Finally, we have recently bought a digital camera and discovered it has a very unexpected side benefit. Now, if I'm tired but my husband wants my opinion on where to plant something in the garden or how to arrange the guest room, he no longer has to carry me to where he's working. He simply takes a photo, shows it to me, we make the decision, and when we've finished we delete the photo. Suddenly I have mobile eyes! It also goes with him if he's going somewhere I would dearly love to visit. He takes lots of photos, and uses them to tell me all about it when he gets home.
The camera is easily the most expensive piece of enabling technology listed here, but if you can afford it then I highly recommend one. If you are choosing a camera, I would recommend trying to find the lightest and smallest one available. Ours weighs around 100g and in cross section isn't much bigger that a credit card, so even with my weak hands and poor stamina I can use it without assistance. Consider purchasing over the internet (from a parallel importer): ours cost around half the street price this way.
These are some of the things that have helped me a lot in learning to live this new life with illness. All the best to you, as you also seek to overcome the your disabilities and to live more richly in this world of CFS/ME!
Arohanui,
Heather
September 2005