What do you do to manage your illness symptoms when you’ve tried the usual treatments but they aren’t working? That’s a question I’ve had to consider recently. In the last several months, I’ve been trying to cope with SI joint and sciatica pain that has inexplicably increased. Physiotherapy treatments give me several days of relief, but eventually, the pain returns. I’ve tried changing footwear, chairs, exercise regimens, acupuncture, massage, and many other types of treatment. Yet, on countless nights the pain still keeps me awake. I’ve lost certain abilities, like being able to do floor strengthening exercises or wearing some types of shoes.
My regular doctor told me to try heat and stretching as if I hadn’t already done that 10 000 x. When I explained that, I got a referral to a specialist, which will likely take several months. Of course, one of my next attempts at finding a solution was to consult Dr. Google. The number of potential solutions to SI joint and sciatic pain is dizzying, from magnesium to capsaicin to yoga poses, among many others. I tried to limit my research by eliminating potential sources that were trying to sell something or had no research references to back them up. Independent reviews from other patients also help to prioritize certain options. I’ve started with the most workable treatments for me and then gone down the list.
So far, some things have helped bring down the pain for a few days, like capsaicin and changing to standing exercises. I keep what helps and then try the next thing. Only changing one thing at a time helps me to make sure I can connect any changes in my pain to the treatment. If you have too many new variables you won’t be able to tell which one actually helped. Keeping a symptom and treatment log also helps me to see cause and effect.
But even after all that, sometimes, it’s 2:30 a.m. on yet another night, I’m still awake due to pain and it occurs to me that, temporarily at least, there’s nothing left to try. Now what?
My initial reaction to solving a problem is to always do something. I hate feeling helpless. Very few people calmly accept losing control, especially over something as personal as your bodily functions. Maddeningly, powerlessness is a key characteristic of life with illness. For example, I think it’s a safe bet to say that virtually everyone with a chronic illness has at some point been up in the middle of the night in pain, fruitlessly scrolling through web searches on their phone, looking for solutions.
Now when I reach a dead end, I’m trying to accept that, at least for the time being, there’s nothing more I can do. Actually, that’s not quite true. There’s nothing more I can do to plan my future steps at the moment. I’ve run out of options for things to try in the middle of the night that will improve how my future self feels tomorrow. Obsessively worrying about the lack of options or reviewing what I said in the voicemail I left for my doctor doesn’t count as ‘doing’ anything to help.
But even at a dead end, I still have the ability to take care of myself in the present moment. I took a meditation course a few years ago and at the end of a short three-minute “breathing break” the instructor asked, “what’s the next, best thing you can do for yourself right now?” That question came back to me recently. When I am awake and in pain in the middle of the night, what’s the next, best thing I can do to help myself? It might be to just get up, change positions, distract myself by listening to an audiobook, or make a cup of (non-caffeinated!) tea. You won’t solve all your problems that way, but you can make the here and now a better place to be.
Of course, it’s quite frustrating to know that the next day will most likely involve a lot of fatigue and pain. But I would argue that the frustration of pointlessly trying multiple pain management techniques that aren’t helping, while getting more and more worried about the impact of sleeplessness on the following day, is far greater! There is always something available to us right now that can help to make the present moment a little bit easier. Taking refuge in following the breath, looking out the window, holding someone’s hand, or petting an animal are all ways to practice self-care right now. In the middle of the night, it helps to remember that there’s always some next, best thing you can do for yourself right now, even if you’re at a dead-end when it comes to trying new treatments or solving worsening symptoms.
Chronic illness is isolating. Spending hours alone every day can be lonely. Here’s what I have learned about embracing solitude and learning to be comfortable in my own company.
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