The alarm clock isn't set to go off for another two hours, but here you are, awake, far too early. You knew from the second that you began to stir that this was going to be one of "those" days. A difficult day. One where every symptom of your disease or difficulty that comes with your disability manifests itself. A day when the simplest of tasks seems like climbing a mountain peak, and when difficult tasks become impossible. One thing is certain... days like this can be overwhelming. Whether we deal with physical or mental health-related disabilities, learning to deal with difficult days can be the difference between a life of frustration and a life of fulfillment. Follow me below the jump for a discussion about tools for dealing with difficult days.
KosAbility is a community diary series posted at 5 PM ET every Sunday and Wednesday by volunteer diarists. This is a gathering place for people who are living with disabilities, who love someone with a disability, or who want to know more about the issues surrounding this topic. There are two parts to each diary. First, a volunteer diarist will offer their specific knowledge and insight about a topic they know intimately. Then, readers are invited to comment on what they've read and or ask general questions about disabilities, share something they've learned, tell bad jokes, post photos, or rage about the unfairness of their situation. Our only rule is to be kind; trolls will be spayed or neutered.
I'll be totally transparent: today is one of those days for me. So was yesterday. I knew when I woke up yesterday morning that I was going to be in for a long two or three days... at least. But that's the nature of my disease. Ups. Downs. I had budgeted yesterday to write this week's diary, and feeling as I did - unable to get up out of my bed - I thought about emailing and letting Father John-Mark know that I would be unable to take my turn. That's my first response on difficult days: cancel, back out, isolate. After dealing with disability and disease as long as I have, I've grown to recognize how my natural response to difficult days can make these days even more difficult. So in the spirit of giving myself a kick in the rear end, and in hope that we as a community can encourage and share our own coping mechanisms with one another, I offer this discussion of a few tools I've gathered over the years.
First, in tribute to the Olympics, I offer the phrase, "Just Do It." It is far too easy to fall into a cycle of isolation (more on that in a minute) and depression for the disabled. I know that on my difficult days, I tend toward inactivity and allowing the difficulty to overwhelm me. But more often then not, even on the most difficult day, keeping as much as possible to my regular schedule helps me through the toughest times. Whether it's getting out of the house and doing something, or just moving into another setting within the house, movement and activity are a cheap and effective medicine. I know several people who suffer from diseases or syndromes that cause pain to the point of disability. A couple of them attended Mayo Clinic's Pain Rehabilitation program. Whether it's Fibromyalgia, post-surgucal pain, or any of the dozens of issues they treat, the Mayo program stresses movement as a primary therapy. Taking just five minutes to do something physical can change my entire outlook on my day. If it's at all possible, at least Just Try It.
Second, find a distraction. Even if I am unable to get out of bed, finding a distraction can help pass the time and make the day a bit easier. Research has found that distraction may work better at treating pain and depression than any drug. A movie may provide a couple of hours of enjoyment. A great book (or DK diary!) can transport you to a different place. Scientists are working with virtual reality as a therapeutic tool. While we wait for that to be widely available, computer or video game systems can provide a good portion of that same brain distraction, occupying your brain function, and giving you relief from your difficulty.
Third, and finally (from me), reach out. Don't isolate yourself. Nothing is worse than dealing with the burden of illness, disease, disability, or the care thereof by yourself. As easy as it can be to just pull the covers over my head and block the world out, I know that if I do, I will only be making my day longer and more difficult. I have found it helpful to have two or three friends with whom it's safe to call on difficult days. But here's the catch: I don't talk with them about how difficult my day is on those days. Don't get me wrong, having relationships, personal or professional, where I am honest about how I am doing and feeling is absolutely vital. But on my difficult days, I do my best not to focus on the things that are difficult. If it's pain, I have found that talking about it makes it worse. If it's physical, I have found that focusing on the difficulty can only make things more difficult. So I have safe people with whom I can relate, and we talk about how they are doing, about the world, politics, whatever. Just getting outside of my own head can lighten the load and make the day less daunting.
I didn't learn any of this on my own. Other people who have dealt with disability have helped me by sharing what worked for them, and I was able to glean from their experience what might be applicable to my situation. So... consider this an invitation to share what tools have helped you in your own journey in the comments section. I look forward to learning from all of you new ways to make my journey more rewarding.