September is Pain Awareness Month. And I do my best to raise awareness about it because there is still so much stigma out there.

Maybe explaining living with chronic pain to someone who doesn’t have it is impossible. Maybe it is like explaining infinity in a finite world. We can only count so far before we realize we can’t really comprehend infinity in our minds. And while everyone understands temporary pain the idea that pain persists, endures, and never goes away is beyond comprehension. The mind cannot imagine what that would be like. Mostly because the pain experience once over vanishes from the mind rapidly and becomes a vague memory. And trying to take that vague memory and imagining someone enduring that their entire lives is impossible. It is also impossible because chronic pain itself as an experience changes people and how we live in the world. It just is not the same as temporary pain… not the same in how someone reacts to it.

Open letter from someone with chronic pain

Living with chronic pain

Pain Awareness

Living with chronic pain is unpredictable. You never know the level of severity from day to day. It could be moderate and you could have some functionality as long as you pace. Or it could be intolerable and severe with little to no functionality. It can have triggers and sometimes nothing at all triggers it. But it is damn draining and you have to deal with the constant fatigue of the weight of it. And your concentration and focus are never quite all on what you are doing.

Baseline pain, that is the pain that we always deal with at some level, is something we just deal with. It is not something we comment on. We can modestly function with it. We can smile, laugh, and be sociable with it. Because although its weight takes a toll, and it does, it is a constant weight we deal with every single day. Nothing to write home about.

Other days the pain makes us immobile. And the emotional toll can be far greater as we just try to get through the pain. It is variable. One day I can do small amounts of things. Other days not a thing at all.

There are decades I didn’t cope well at all because I pushed too far past my limits every day trying to be ‘normal’ and fit into society and function. And it almost killed me.

There have been times when I cope exceptionally well with the same level of pain because I stay within my limits, pace, and know when to rest. Some would say this life is Smaller. Limited. But it is better mentally, emotionally, and physically. It is a mellow, simple life. But it is also one where I am on disability and struggle a great deal financially as a result.

Chronic pain and depression

The line poem

I am not sure anyone will ever know the dark places your mind can go with chronic pain. How suicidal ideation happens… not because you don’t want to LIVE but because you just want the pain to Stop. But it never, ever does. And sometimes you have unmanaged pain for a very, very long time and that is so hellish to exist in depression is just inevitable. No one can exist in survival mode for long let alone years or a decade without a hefty price. And that price is depression, burn out, and in my case a couple suicide attempts.

When you are in high pain day by day by day it is so very easy for thoughts to get deeper, darker and spiral down and down. But you can’t say those thoughts are lies. You can’t say they are unreasonable. Because the pain is real. It is unmanaged. It is not feasible to work with that level of pain and you are forced to. So you know those facts and you know the pain is going to be as bad the next day and the next day… and that is where this raw, desperate, despair comes from.

And don’t you dare tell me suicide is selfish. That level of pain? I wouldn’t let my cat suffer like that. But it is cool to let a human do that and force them to work through it? That is fine? Without any damn treatment? And expect them to smile through it? Not make a fuss about it. THAT is madness. THAT is hell. Give someone some damn hope. Give them proper pain management. Otherwise, I don’t know what people expected. Those doctors and specialists. That I could endure that forever? That I would want to? That an existence like that was worth it?

The only way out is when my pain was managed just a little, I stopped working full time, and I went on a medication for depression. If all of that had not happened, I doubt I would be here right now. One cannot endure the unbearable forever. The price is too high. Something has to give. And there is a reason why the suicide rates with chronic pain is high… we do not get adequate treatment and more often than not we have to push ourselves and work when we shouldn’t but Must. Survival mode is not meant to be lived it… something has to give…

Chronic pain and treatment

Pain Awareness- Needs diversity of treatment

Now, chronic pain is complex and therefore treatment is complex and varies from person to person. It is as unique as the person. I do not like this ‘opiate epidemic’ which basically restricts one option that helps give quality of life to Many of us, that without that, well, life becomes hellish. That is something that needs to change. Pain needs to be effectively managed to give a person a decent quality of life. We deserve that. You should just take away an option because other people have a problem with it, but barely a fraction of a fraction of chronic pain patients ever do. For us, pain killers just dull the pain a bit. Nothing more than that.

Anyway, there are an assortment of medication options. Medication procedures. And we will still have a lot of pain with those. So we need pain management outside of medication as well. That can include various alternative treatments. It can be some sort of modest exercise (and finding an exercise you can do that helps you) and physio. It can be diet changes and lifestyle changes. It can be utilizing meditation and relaxation breathing. It can also be taking care of your mental health and doing cognitive behavioral therapy with a psychologist… especially if you have comorbid mental illness such as I do. And part of that is not self-isolating (aside from the pandemic we find ourselves in) and socializing a little bit. It can be engaging in activities we find interesting and stimulating, and hobbies, so we feel fulfilled even though we cannot work. It can be all the things we do for self-care on those really bad days.

So treatment is a very complex thing. People thing we do so little but in fact there is a long list of things we do to manage pain. And that varies according to the pain level that day as to how we manage it.

But it is a puzzle or a labyrinth. Because it is so difficult to treat that sometimes no medications work. And all you have are your pain management skills to get you through. That means a whole lot of very, very bad pain days with little to no functionality. And less quality of life. And just doing what you can to get through without falling into that pit of despair. Doing the best to stay afloat. I know that certain times of the year, seasons, I am really not doing well pain wise. It is just the way it is. I don’t have anything to help me manage it so it is what it is. Funny thing about that is some types of pain do better in some seasons while others do better in others. So it seems one chronic pain type is always being a bit bitchy on me. Of course, sometimes it is more than one and then I struggle to do the things I need to do to manage the pain. But it can’t rain every day, and some days are better than others. Got to live in those lower pain gaps.

Conclusion

I don’t have pity parties about this. I don’t want pity either. I want to live with this pain and have some semblance of a life. It may be a small, limited life, but I will take what I can get. I want better pain management and every day I work on new ways to manage my pain. Because I don’t want to be consumed by depression. I want to manage that so I can be satisfied with what I can have. So i can be fulfilled with what I can do. And hope that one day I can inches in well-being and pain management and maybe do a bit more- nudge those limits and gain a little more life in there. I have acceptance for where I am and I will also constantly seek to improve my well-being.

There is no hiding the fact chronic pain is a shit-show though. I mean, I wouldn’t wish it on my worst enemy. It isn’t a life that is easy to handle. But everyone suffers from something in life and we all have to have resiliency. With chronic pain resiliency is hard earned and you need a crapload of it. The pain destroyed me. And by doing so it made me. That is the thing though. It has the power to do both. Break you. Make you.

And you never stop wanting. You never stop having ambitions, goals and desires. Ones that are now out of your reach… but you Have them. So you have to make smaller goals, ambitions and desires and be satisfied with what you can do and try to ignore what you cannot. Because when you deny the impact pain has… then you go about exceeding your limits and pushing and pushing and that pain, well, it pushes back harder. And then your back where you were… depression, burn out, shattered. So denial teaches you a very hard lesson in staying within your limits and pacing.

So I will take what I can get now. And I will be content with it. Maybe one day I will get more out of life. Maybe not. But I will be content with the life I have. And manage the pain as best I can. Rest when I need to. Pace at all times. And always stay within my limits.

Links

NIH Chronic pain information page
Healthline: What causes chronic pain
MedicinePlus: Chronic Pain

See other posts for pain awareness

Pain Awareness: Pain consequences
15 things I’d say for Pain Awareness
How to understand someone with chronic pain

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15 thoughts on “Open letter from a person with chronic pain

  1. Thank you so much for your honesty and resilience. It means a lot to be heard when you are in such pain and there seems to be no real understanding from health professionals.

    Liked by 1 person

  2. I tried explaining this to a friend a few years ago, but she didn’t really understand. She was very focused on the meds causing her side effects. I mentioned that pain can do this too. Having read your article, I’ve now learned a few things that I could try next time when someone wants to engage in a conversation about pain. I think it is hard for most folks who don’t know chronic pain because most people are programmed to forget it. When the pain goes away, it diminishes in how we remember it. Anyways, I’m rambling. Great post, Nikki.

    Liked by 1 person

  3. I so appreciate your words. The raw anger that comes through is justified by the reality of the pain crisis we have. It’s not an opioid crisis, not for those with this level of pain. And still, they have taken away treatment from the very few available without making an urgent call for serious research to go into traments for chronic pain in all its forms.

    Liked by 1 person

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