Having lived with chronic illness for 13 years, now, you could say I have interest in the subject of how to live with chronic illness. I never get bored listening to how other people deal with the odd and unusual problems that we have. Many of us have a magic bag of tricks or an arsenal of weapons on hand to use in the fight against daily life. “Normals” would never think about ways to make opening a can of soda easier, because opening a can of soda isn’t exactly rocket science. However, when your fingers don’t always behave the way you expect them to, or if the back of the pop-top ring thingamabobber digs into your skin and causes you severe pain, you have a choice: never open a pop-top can again, or find a workaround. My personal workaround is a fabulous little doohickey my step-dad made for me out of lucite. I can’t even describe it, it’s just immensely useful and has a hole on the end so I can hang it on a hook and never lose it.
The pop-top can, though, is just one in a million little, everyday problems that those with chronic illness, or the elderly, have to learn to solve. Problems with sight, mobility, dexterity, memory, pain, and fatigue are so common in a sick person’s life, and everyone deals with them differently. Finding little workarounds is always a blessing, and sometimes feels like winning the lottery. For example, I have enough jammies that I can wait an extra couple of days to do laundry if I don’t have it in me to go up and down the stairs a half a dozen times to get it done. I buy silverware with fat handles that won’t dig into my fingers and are lighter in weight because some days my hands hurt too much to hold anything heavy. I have my calendar on my smartphone sync to my calendar in my Outlook and my calendar with my webmail so I always have my calendar close to me and don’t double-book myself or forget an appointment. These are all little workarounds and redundancies that I have in my magic bag in case I need them.
One of the bigger tricks in any magic bag is attitude. Those who take the attitude that nothing will ever get better never see the possible solutions all around them. Those who refuse to give up always find a way to make it through. My cousin, for example, seems to just barrel right through any difficulty she encounters. I think her motto must be, “You do what needs to be done and deal with the fallout later.” Whatever her kids need, she gives to them, no matter how her body argues. For example, her son plays baseball, a LOT, and there is always laundry to be washed. No matter how tired or in pain or busy she is, she will get those uniforms clean if it kills her. I, on the other hand, have always been lazier in my approach to life. I’m a problem-solver, so I’m always looking for a workaround. Whether it is delegating, or finding a version of a tool that works more easily, or sweeping said problem under a rug, I will always find the easier way out.
No matter how you deal with the daily challenges, there has always been one thing that I have seen that makes a huge difference in how a sick person copes: Support. I read a study once that showed that Fibromyalgia patients who had a strong support system coped better with flares, relapses, and symptom changes than did their counterparts who were alone, or whose family were critical or not supportive. This may sound like a gigantic DUH statement, but it goes beyond the obvious physical support of having someone around to do the dishes for you. Patients who had family around to help them, but were not supportive in their assistance, i.e. “I’ll help you but I think you’re just being lazy,” fared worse than patients who had supportive families who validated their illness and their feelings. This means, that just having someone around to say, “I believe that you are sick; I see that you need help; I understand,” actually makes your pain and other symptoms BETTER. In this way, love actually HEALS.
Right here, I would like to say, that I have the best husband in the world when it comes to support. He is so good to me, he knows before I do when I’m going to feel badly. He can’t always convince me to stop what I’m doing in order to save me from paying the price later, because I can be just as stubborn as my cousin at times, but he understands and supports me. And when I’m down, he gently hugs me and calls me his poor baby, and I feel better.
Another kind of support is support groups. I have recently met a new friend who is dealing with a lot of different issues, and I suggested he go to a support web site I frequent. I have made this suggestion to just about every “sick” person I have ever met, because I have met the most wonderful “sick” people there, they are my family, and I couldn’t survive without hearing about their day and getting feedback from them about my own life. He responded that support groups have never interested him because knowing someone else is feeling poorly doesn’t make him feel better. I suppose that’s one way of looking at it! I mean, hearing that my friends are in pain or having a bad day doesn’t make me happy or feel better about my own lot in life, but hearing when they have tried something new and it worked makes my day! Having a sounding board for new symptoms is also a valuable weapon in my support arsenal. I admit, I stopped reading discussion forums about FM a long time ago, because the tide of new FM patients asking the same old questions exhausted and saddened me. And there are a lot of chronically ill folks out there who will ask the same question over and over and over until they hear the answer they want to hear, and not the answer they need to hear. That is the down side to a support group.
But being able to go to my computer and type in the words, “I’m having a bad day and I don’t know why,” and knowing that a friend will come by later and say, “I hear you, I understand, maybe ____ has something to do with why you feel poorly today, and I hope you feel better tomorrow,”… this, to me, is GOLD. Of all the weapons in my arsenal, and tricks in my magic bag, this is the one that trumps them all.