I have lived with chronic pain for many years and I know how debilitating it is. It’s not an easy life, but somehow I get through it, mostly with a smile on my face. For the last few years I have been very involved in support groups for disabilities and pain conditions.
A few nights ago, I was having a particularly bad night. My trigeminal neuralgia was terrible, I was having horrible side effects from my medication and I was struggling to sleep. One of my coping techniques is to think of a topic then go through the alphabet, choosing a word relating to each letter. Sometimes it’s food, sometimes names of places, sometimes animals…. that night it was pain. At that point, A stood for agonizing and it took me several minutes to get on to the letter B because that agonizing pain kept getting in the way. I persevered though, and a few letters in, I felt calmer and in more control.
Halfway through the alphabet, I decided I should remember all those words and write an A – Z of living with chronic pain. I didn’t get to the end of the alphabet because I fell asleep and by the morning I couldn’t remember most of the words I’d picked, so a new version evolved.
You’ll notice I changed agonizing to acceptance. By the morning, I was feeling much more positive. The alphabet game is a great coping technique, worth a try for anyone struggling to sleep.
Acceptance: It’s probably the most difficult part, but life can become easier if we accept our situation. If we constantly battle against it, it only makes the pain worse. Accepting the pain doesn’t mean liking the pain, it simply means we can learn to adapt to our situation.
Body: We have to get to know our body. We have to be kind to it. We have to respect it. When it says stop, we’re meant to stop.
Coping Mechanisms: Relaxation techniques, breathing exercises, counting, letter games. The list is endless, but what helps one person may be useless for another. And what helps one person today, might not help tomorrow. It’s all about finding things which we can keep in our tool box and bring out when we need them.
Distractions: So important to us. Humor, movies, art, music, books, coloring, crocheting, puzzles — anything which can distract us from our pain.
Expensive: Some people are fortunate to live in countries where doctors and medication are free or reasonably affordable. Sadly, for many people, that is not the case, therefore living with any illness can become very expensive. Paying for doctors, meds or surgery may be completely out of reach for some people.
Fatigue: It’s not like tiredness. It’s different. It’s like the whole body is heavy. A nap doesn’t fix it. A whole night’s sleep doesn’t fix it. It’s part of living with chronic pain. Part of our condition.
Guilt: We can’t do what we’d like to do and often that has an impact on the people around us. The people we love, our friends or our colleagues are often affected by us not not being able to do what we would like to do and we can be wracked with guilt. Somehow we need to ditch that guilt because it’s doing us no favors. It can actually make our pain worse.
Hope: We need it. We can’t do without it. Hope for cures. Hope for better doctors. Hope for better treatments. Hope for better understanding. Hope for better tomorrows. Hope. Just hope.
Inabilities: We seem to have so many inabilities that they overshadow our abilities. But we shouldn’t let them. We need to try to focus on what we can rather than what we can’t.
Judgment: We often feel as though we are being judged and are under scrutiny. Why don’t we work, why are we parking in the disabled bay, we shouldn’t be claiming benefits, we are just lazy! It’s often a horrible part of chronic pain. It’s easy to suggest we just ignore it, but the reality is, when people judge us, it hurts.
Knowledge: We need to become as knowledgeable as possible about our own conditions. We need to learn about every aspect, from medication to possible surgeries. We often need to search ourselves for the right doctors and do our own research about our condition. Knowledge is power, as they say.
Loneliness: Many people living with chronic pain live lonely lives. We don’t get out to socialize and family sometimes “does their own thing.” Friends often disappear along the way. It can be a very lonely life. However, we sometimes need to push ourselves to become involved in life outside our pain at times. Social media has been a fantastic addition to our lives. Online support groups have improved the lives of so many people.
Maybe: Maybe today we can manage to do something, but tomorrow we can’t. It is difficult to plan life around chronic pain. Can we make arrangements? Accept invitations? We never know exactly from one day to the next what we’ll be able to manage. There are a lot of maybes.
Normal: We want to live normal lives. Even just for one day. To be able to get up out of bed pain-free, jump in the shower and get on with the day. But reality says we can’t do that. But just what is this “normal life,” anyway? Does the guy next door live a normal life? The woman at the supermarket checkout? The call center lady who calls while you are snoozing? The truth is we don’t know what their lives are like. The truth may be that they are wishing their lives were “normal,” too. So maybe there is no such thing as normal anyway.
OK: Often the standard answer when we’re asked how we are. People may be interested to hear the true answer, but we don’t always want to give the true answer. This could be because it hurts to talk about it or it could be that we don’t want to bother people with the truth or it could simply be that we’d rather talk about something nicer.
Pain: Yes, pain….we live in pain. Constant, grueling pain. It might be burning, aching, throbbing, stabbing, shocking or agonizing. There are many descriptors, but it is normally relentless and very difficult to live with.
Questions: We have many of them. We ask them. We are asked them. But often there are no answers or there are answers we don’t like.
Rest: And lots of it! We need it.
Side effects: From constipation to heartburn, from dry eyes to dizziness. Those meds prescribed to help our pain can cause a multitude of other issues.
Triumphs: Small things can be a huge triumph to us and well worth celebrating. We’ve possibly managed a short walk, or cooked a dinner, or even simply got out of bed and cleaned our teeth. Those are every day tasks to most people, but to us, they are often huge triumphs.
Unfair: Living with chronic pain really is unfair. But sadly many other things in life are unfair, too. So many people get a raw deal in life.
Voice: We very often lose our voice and confidence and need someone to be there with us at appointments and sometimes to fight our corner for us. People who do that for us are invaluable. We also need to speak out about our condition to get awareness and fight for research. When we join together with support groups and awareness communities, our voices can be heard more easily. Together we can make our voices louder.
Why me? Who hasn’t said that at some point? No matter how upbeat people are, there are still days when they probably just want to hide under the duvet, cry and say, “Why me?” That doesn’t make them weak — just human.
X-rays: And MRI scans, CT scans, blood tests… the list is endless. Sometimes our social life revolves around doctor and hospital waiting rooms.
Yearn: We often yearn for the past or for what life could be. But doing that often gets us down. Perhaps it’s better if we could focus on now. Just one day at a time. Do what we can today. Enjoy what we can today.
Zest for life: Is it possible to still have this while living with chronic pain? Yes. Yes, it really is. If we try to have people around us who are positive and make us feel good, if we try to find things we enjoy in life, if we look for the small things which bring us pleasure, we can still have a zest for life. We can wake up each day knowing that we will try to enjoy something and we can go to bed at night remembering at least one thing which we enjoyed. This is our life… it’s up to us to make the most of it.
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Elizabeth is 52 and lives in a beautiful part of Scotland with her husband. She has lived most of her life with chronic pain — disabling back pain, rib pain, face pain and head pain, with a few extras thrown in for good measure. She tries to stay positive and looks for the good things in life – there is always something good. She has a blog about coping with chronic pain : https://despitepain.com/
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