People have asked me what do I do to cope with pain and the only answer I have is quite simply anything and everything I can!
When deep agonizing pain strikes I will use everything I can to make it through each torturous moment. I am fortunate that pain meds are available to me and I use them as needed but often they merely scratch the surface. The deepest and unrelenting pain requires managing each moment as best as I can. Such times are physically and emotionally exhausting and after hours of pain it is usual for me to sleep spasmodically as my body just can’t physically continue.
You shut down rather than rest.
Usually sleeping through exhaustion will find me waking again in an hour or so to go through the exact same cycle again and again. I truly believe it is the equivalent of running an Olympic marathon on your own.
After many years I have become a seasoned pain fighter which means I have coped with the most indescribable pain levels but I never get used to it or find it less of a challenge. I don’t think anyone does. Not real pain at least.
People have asked me if I have had any other experiences of pain outside of autoimmune illnesses for which to gauge the pain levels and I have shared that I have;
- Broken my ankle
- Had a burst appendix
- Endured gallstones
- Suffered kidney stones
- Trigeminal Neuralgia
I don’t believe I am a stranger to physical pain and it’s not something that anyone should have to quantify.
Pain is pain.
Over the years I have tried many techniques to try and cope with pain and distraction has its merits but requires incredible self discipline. I usually find myself trying to visualize something happy or pleasant or reciting things that I learned many years ago, poems for example, over and over for hours on end.
Mindfulness has helped but does not pull me out of painful eruptions with any degree of efficacy or certainty.
My husband’s voice is a very helpful tool and also the presence of my furries can have a calming effect that I treasure, they seem acutely aware of my circumstances and have often lay beside me when I have needed them them most.
My husband has read to me during painful flares when I haven’t been able to move or eat and it has been like a breath of fresh air on the hottest summers day. Hot packs, sipping fluids, darkened rooms, gentle massage (feather soft), warm showers / baths and several pillows have all been employed to manage one moment to the next.
The thing about such terrible pain is that the sufferer is truly only able to think in terms of one moment to the next and it becomes a battle of inches and not miles. Days melt away and time becomes irrelevant in this battle. You fight until it’s done.
I have lost days, weeks and months to pain and I never know how long relief will last. Therefore I try to make the most of a better day and collect as much emotional strength as I can in the moments in between.
I have found that my battles with chronic pain have completely changed me and the way I look at world now. I didn’t foresee it having such a profound effect but it also irreversible. I find it impossible to comprehend those people who constantly say that pain doesn’t define them as I have seen pain change me more than almost any other life event.
It is also imperative that when you are battling chronic pain you can not allow taxing or draining people around you, not even for a moment. Many chronic fighters avoid people at all costs as it would mean disaster for their coping skills. Even a short phone conversation with an emotionally draining or self focused person is enough to break what little strength we have, so we avoid it at all costs. That doesn’t mean we don’t have affection for such people but their energy and requirements are just too much and has painful consequences.
I work very hard to ensure that pain does not mean that I forget the world around me but it has applied a permanent filter to the outside world that is both helpful and harmful. For instance I have become intuitive at recognizing pain in others and I am filled with empathy for those who know real pain and suffering, however it also makes me disinterested in petty worries and unnecessary drama.
Pain has taken away so many milestones, events, outings, opportunities and celebrations but it has also encouraged me to relish the little things. Sadly, those little things that I now cling to and treasure are looked down upon by most of society as inconsequential and uninteresting. Thus I have become boring and dull to almost all those that I once knew and spent time with.
There is no longer a day in which I am not battling varying degrees of pain but I can’t let myself think about it too deeply as it can drag me into depression thinking that this is how I will live out my life. I try not to talk about it or discuss it with anyone other than my husband who has been there for every painful moment. It is like a dark secret we try desperately to hide from the outside world.
I have seen my pain change my husband in ways I feel profoundly regretful for. He has become anxious, tired, saddened and depressed himself. He has been forced to age beyond his years and he also views the world in entirely different ways from before my health changed.
As compensations for these heavy burdens we have experienced love, inspiration, dedication, peace, humility and a deeper connection than either of us ever thought possible.
Prior to this stage of my life I could not fathom being able to live such a life as this but I marvel at how we have both endured through such painful times and such incomprehensible conditions.
I truly find myself unable to adequately describe the life we have today, the levels of pain we cope with and the ways in which we keep going. It is something that no other person can possibly comprehend, unless they themselves have struggled like this also. Thus it has become impossible for either of us to relate to almost every other person we encounter in our lives and we have to find the courage to live outside the realms of most people’s existence… This is incredibly painful too!
People assume that after decades of pain you must surely become used to it or master it and that tears and regrets become things of the past, to those people I can only speak for myself when I say that is completely untrue! You have no other choice but to make room for it and do everything and anything you can to survive it.