Like so many of you, I live with chronic illnesses that have restricted my life. From first-hand experience, I know that, when you become physically ill, you do not also become emotionally or intellectually ill. I still have the same needs for closeness and intellectual stimulation that I’ve always had.
How does a person with chronic illnesses get his or her intellectual and emotional needs met? One part of the solution, for me at least, has been the World Wide Web. This link to a world of caring people and interesting ideas has truly helped me to address those needs and, more than that, has enriched my life in many, many ways.
Counting Marbles and Finding Balance
Many articles on living with chronic illness recommend that you find balance. Balance is a talented juggling of all your responsibilities and needs. Balance is kind of like walking on a small wire, finding your way one footstep at a time. If you also live with chronic illnesses, you know the struggle you take on to balance all of your needs.
In one self-help group, I heard this struggle described as “learning to live with the limited number of marbles in a jar.”
Let’s imagine that you have exactly 100 marbles. You use perhaps 25 marbles to earn your living, and another 30 in your important relationships. You didn’t realize it, but you use another 25 marbles following your physician’s orders. It takes marbles to muster your determination and to perform all the activities necessary to manage your illness. We haven’t yet listed the normal activities of daily living. By the time we get to your emotional needs, you have no marbles left!
At the beginning of my sickness, I still had the determination of my old, willful self. I still thought that I could beat the illness; make it go away. Or, at least, find a way to have the life I used to have before I got sick.
I would imagine that many of you have attempted to hold onto as much of your pre-illness life as I did. Perhaps you found different tools and techniques than the ones I used. But your intentions were still the same. You wanted to find a way to include your illness in your life. Instead, you had to find a way to include your life in your illness.
Right away, I looked for things that would increase my efficiency. Then I tried to simplify my life. Finally, I looked for tools. Each and every possible tool that would make any task even one-eighth marble lighter.
I color-coded all my work to reduce my thinking and search time. Then I subscribed to every traveler’s catalogue I could find. I thought I could purchase reasonably priced items that looked like they might work for me. My thinking was that there are all sorts of gadgets and ideas for making life easier. My personal all-time favorite is my “Save Your Sanity Wallet.” Although I neglected to realize I’d use more marbles learning how to use it effectively, my second favorite is my Palm IIIx handheld computer.
Living Large on the World Wide Web
Finally, I realized that I wasn’t going to make the sickness go away. I actually had to change my lifestyle. That was when I purchased my first modem. This was the major find in my search to live as fully as possible with chronic illness.
On the Internet, I found support groups, libraries, ideas, friendships, and even the opportunity to be creative. I can shop. I can now even order my groceries online and have them delivered. Even during an illness “flare,” I am able to surf the net.
During a really sick period, I cannot do my most demanding tasks, like work on my webpage. But I can go to mellow sites, and enjoy the positive ideas. Or go to the jokes and find laughter. I love looking at all the different artwork. Perhaps I cannot work on anything, but I can save art to use later.
At these times, I can also go to my online illness support groups and complain to understanding, nonjudgmental people. I have read that some people believe you cannot have the same quality of relationships over the Internet. That has not been my experience.
I would not be able to have relationships with so many supportive and caring others without the Internet. I just had to learn a different way of communicating, a new language, to let others online know how I was doing. Emotions and even body language can be communicated over the Internet. Once I got the hang of it, e-mail and real time support groups felt the same to me as the face-to-face meetings I used to attend.
Perhaps the biggest bonus of all was that I didn’t have to use as many marbles. I didn’t have to get dressed, drive somewhere and know I’d have to drive back. I also didn’t have to use extra marbles to do that undefined something I do to be with other people. You know, that thing you do to mask how bad you are feeling during a period of serious sickness.
I think you, too, can find what you need here on the World Wide Web. I hope you enjoy the search!