Saturday, May 02, 2009

Things That Can Make Life Easier for those with ICI

Those of us who suffer from chronic pain and fatigue have difficult lives. We find ourselves dependent on others for help, unable to do a lot or most of what we would like and/or used to do, and can find the sometimes mundane tasks of everyday living exhausting. Our quality of life suffers immensely, our self-esteem and feelings of autonomy and independence dwindle and dissolve. But there are a lot of things available today that can significantly improve our ability to lead productive, independent and fulfilling lives.
In a series of posts, I will be exploring various products that I've acquired over the years (or still wish to acquire) that have significantly made a difference in the quality of my life with chronic fatigue and pain. Some of these are quite simple and inexpensive, some are very expensive, but could possibly be obtained with the help of medical insurance in some countries. If you live with chronic illness, you've probably discovered many of these and others on your own. I welcome suggestions for items to feature in upcoming articles in this series!

A lot of chronic illness sufferers are on disability plans and have extremely limited finances. Being a poor, but crafty person myself, I will often make suggestions on how to make your own ease-of-life item. However, we need to balance our thrift with our activity levels. Taking on too many DIY projects can often add stress to our lives and drain our energy, and that is what these articles are meant to reduce. Prioritizing our purchases and activities is another constant challenge in the lives of those with chronic pain and fatigue.

Dog Harness


Not all of us have pets, but many of us with chronic illness often find ourselves spending a lot of time alone and housebound. Pets can be wonderful companions, and constant comfort in our time of need. I have both a cat and a dog, and they are my best friends! The most recent addition to my quality-of-life collection was this simple dog harness. My dog is not well trained for walking - she's an explorer and pulls constantly. She's a fairly small dog, but not a fragile thing at all. She's dense, and powerful. Her constant pulling really exacerbates my upper back pain. The first time we tried it, she immediately stopped pulling! It's amazing, and I have no idea why it works, but I'm sold. The basic harness, pictured above, costs less than $10. There are fancier ones, with shoulder padding for comfort, and I've also seen ones made of chain. However, any harness with this configuration will work!

Personally speaking, I am not entirely happy with the red harness I have. I've got a pet peeve about people calling my dog a 'he'. For the winter, I knit her a lovely pink dog sweater (which doesn't always prevent the gender assumption). Eventually I hope to either embellish the red harness, or make an entirely new, pink one. I think it could be easily accomplished - with a few metres of nylon woven strap material, some sturdy clasps and a couple of round metal links. Alternatively, I may use some interesting braiding techniques to attach to the links and clasps. Just make sure everything is attached securely. Even though pulling is greatly reduced, I don't put it past my dog to go running to the end of the leash after another dog!

Personal Shopping Cart



Unless you are lucky enough to have a car, mobility service, or can afford taxis, these shopping carts are a necessity. Mine even has a fold-down seat, so I can sit down while waiting for the bus if there are no benches available. It also has rotating wheels that assist in going up stairs and curbs. These are available in so many different configurations, sizes, materials and patterned fabrics, cart 'window' shopping has become a favourite activity of mine! When I first got my cart, it drew a lot of attention, some good - compliments, questions about where I got such a wonderful contraption - some not so good - stares, possible annoyance when it was in the way - but nowadays more and more people (and not just those of us with chronic illness) are discovering how convenient they are. I ordered mine directly from a warehouse in British Columbia after Mary Maxim stopped selling it (saving over half the price, even including shipping to Ontario!). Now they are everywhere, I get much less unwanted attention, and don't feel so odd.

One of my favourite cart-type items is the President's Choice Green Shopping Bag on Wheels.




















It doesn't hold a whole lot, it doesn't stand up by itself and it has no seat, but it does have a lot of other great features. The fabric is made from recycled plastic bottles, it is light-weight and can be folded up into and easily carried by a shoulder strap when it is empty, and it is widely available at all Loblaw's Company stores - Zehr's and The Real Canadian Superstore in the city where I live. Any store that carries President's Choice products is likely to have it. They also have a selection of smaller eco-shopping bags made from the same eco-friendly material. Best yet, it's only $15. Small carts like this are great for shopping at markets or quick, small grocery "runs". Metaphorically speaking of course - I don't recommend running when trying to conserve energy.

Mobility Scooter




I don't have one of these, but I'd give my left...well. I would love to have one, and I think it would make a big difference in my life. I was recently talking to a woman with ICI in the U.K. who rents one of these whenever she needs one. In the States it is sometimes possible to get one fully paid for by insurance, Medicare etc. In Canada, Active Lite rents their very portable scooters in the GTA (Greater Toronto area), and leasing is available at Canada Scooters. It's likely that some disability insurance in Canada can help pay or even totally cover the cost of a scooter for certain chronic illnesses and/or chronically ill persons.

Personally speaking, I've always wanted a moped, so my ideal scooter would be this one:



The XB-420M Electric Mobility Scooter. It's more expensive than a regular mobility scooter, but goes faster, and thus can be used as a normal moped would - to do errands further away etc. I'll probably never own a car, so this would be my main vehicle. I love public transportation, but during busy times, even with my cane, people are not likely to offer me a seat. Further, public transit systems, such as the TTC (subway, streetcar and bus system in Toronto) still require a lot of walking, and a scooter/moped allows a person to drive right up to where they need to be.

If you are living with chronic fatigue and pain that limits your mobility and chances are things are not going to let up anytime soon, or ever, you really owe it to yourself to try to get one of these anyway you can. It can allow you to be more active, social and less dependent on family and friends for rides, shopping errands, going for coffee, and other daily activities. I know how much my life would improve right now if I had one. Anyone got an extra 1-2 grand laying around?


Walking Cane



Canes are not just for people with injuries, chronic leg/knee problems, or cranky, vicodin-addicted doctors on TV. Originally I did get mine because I had a nagging, re-curring strained muscle in my calf. But now I use it all the time when I have a lot of walking to do - shopping, sight-seeing, casual strolls, dog walks. It reduces the amount of fatigue accumulated from these activities.

In addition, it makes your chronic illness visible, making it a lot easier to ask for seats on public transportation and full waiting rooms. I've found it creates sympathy from people who would otherwise treat you like a fully able-bodied person, even though you are not. That is not a bad thing, and nothing to be ashamed of. Those of us with invisible chronic illness need all the compassion and help we can get, and using a cane is a small way to get it without having to explain how sick you are.

My walking cane is aluminum, like the one pictured here, but unfortunately a plain brown. Like the shopping carts, there is a wide variety of fancy-looking canes out there! I highly recommend getting a fold-able, adjustable one. You can shove it in your bag or suitcase, fold it up on long bus or car trips so it's not in the way. Aluminum is strong, light, and long-lasting. However, wood canes are traditional and can be very beautiful, so it all depends on what you like.

Note: the cranky, vicodin-addicted doctor on television uses his cane improperly. It should be placed and used on the side opposite the injured leg. In cases of fatigue or pain spread equally over both sides, a cane can be used on either or both sides.


Pillows




Pillows are one of my favourite things in the universe, and I don't have nearly enough. The best pillows are those that don't get permanently flattened with use. I have a couple that I use to help position myself for sleeping, they are covered in bright, super-soft fleece and have micro-bead filling. It's good to have a variety of different sizes and shapes of pillows, to help in various situations, with different needs and body positions.

I can't sit in straight high-backed chairs at all. I have an expensive back rest, but nothing compares to a custom arrangement of pillows on a bed or lounge. (I have an Ikea chair that folds out into a small bed, and it is usually kept in bed position for napping and reclining.) You can shift and change pillows as needed to support you in whatever position you want or need to be in. For sleep, pillows are essential, for head support and whole body comfort. Long body pillows are wonderful, but I prefer smaller pillows that are easier to maneuver when I shift positions in mid-sleep - I have pain when I sleep on my side, but I literally can't fall asleep on my back, so I put a pillow between my knees and hug one to my chest. This keeps my spine in better alignment, and holds my back up so I'm not slouching, straining my back muscles and crushing my chest. When I am on my back, I put a pillow or two under my knees to relieve lower back pain. Smaller pillows can be placed under the arms in this position for even more comfort. Pillows can also be used on your lap, to prop up books and other items so you don't fatigue your arms holding them up.

In addition to body support, soft, cozy pillows are a great emotional comfort. They are wonderful to hug, and give me the feeling of luxury or emotional support. We all need comfort, and those of us with chronic illness are often deprived and in need of a lot. Pillows are one of the best ways to comfort ourselves emotionally and physically. I can squeeze a pillow as hard as I want in a hug - the same can't be said of my wonderful cuddly but breakable dog!

Blankets





The ultimate companion to pillows, blankets are fantastic for chronic illness sufferers. My body temperature fluctuates wildly - I'm hot, then I'm cold, then I'm hot again. Having a blanket handy is an absolute necessity. In my opinion, the softer, plusher the material, and the larger the blanket, the better! My favourite blanket is made of the softest fleece, which is very warm. Good quality fleece feels wonderful against the skin. That's important to me because I often have sensitive, achy skin, a symptom akin to that experienced in normally healthy people when they have the flu. Blankets also provide emotional comfort the same way pillows do. I know a few people who's ultimate favourite possession is their electric blanket. It's best to have a number of blankets in different thicknesses. The warmest wool or electric blanket is not always appropriate for a slight chill. Slankets and Snuggies, blankets with sleeves, are a great invention. They free your arms while keeping you warm and covered, helpful for reading, knitting and other sedentary activities. Snuggies are much cheaper than Slankets, but if you are at all crafty, it shouldn't be hard to make one yourself with some nice fleece purchased at a fabric store, like Lens Mill or Fabricland.

Pashminas




I have yet to find anything more useful in dealing with body temperature fluctuations than pashmina scarves and similar large pieces of fabric. Even better than a blanket or sweater, these are portable, fashionable, and easy to put on. Like a lot of chronic disease sufferers, I wear a lot of layers, so I can take on and put off clothes as needed. But when pain and fatigue levels are high, struggling with buttons, zippers and sleeves, or pulling shirts on and off over the head can be troublesome and irritating. Having a pashmina or two on hand instead makes life a lot easier. At home, I wear a t-shirt or tank top, and just throw it over my shoulders. If I become hot, I just shrug it off. Simple as that. I take a couple pashminas wherever I go, and they can also be used as scarves and hoods in colder-than-expected weather. Heck, you could even use one as a bag if you needed to carry a few extra things. Pashminas come in an amazing variety of colours and patterns, and can be purchased for less than $10, especially in large cities like Toronto (they are everywhere downtown, and can be found for as little as $3). True pashminas are made with silk, which is wonderful for sensitive bare skin, but similar large scarves can be made with other materials, even wool for a thicker, warmer feel. Making your own is probably the easiest project you could ever try - find a big enough piece of suitable material, sew seams along each edge. Adding fringe is optional, and fringes can be purchased ready-made at craft and fabric stores.

Coming up:
Pill boxes
Step stools
Pre-cooked, pre-cut, frozen chicken strips
and much more!

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Disclaimer

I sometimes write things that I don't really mean or believe. These are not to be taken literally, nor as definitive statements about me or my beliefs. Thoughts and emotions are transient, and I reserve the right to change my mind, generalize, exaggerate, give strong opinions, or write other possibly offensive statements. I don't lie, but I may say something that's not true to check whether I believe it or not, or to make a point. Call it creative license. This is my blog, and do have the right to say what I want. I'm using it in creatively therapeutic ways. Whatever the reader may think of me and my words, please believe that my core intentions are always good and I never willingly hurt anyone.