Defeating Pain

One Person's Battle Against Chronic Pain


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Chronic Pain is Just the Tip of the Iceberg

I don’t often delve into how I feel about my own illness, some of it is that I mostly try to not think about it. Or try not to every day that I am not experiencing pain to forcefully remind me. It seems to be easiest to just not think about things unless you have to or it all becomes too sad. But to be brutally honest, some days I wish I had a better known and understood condition, I have had a lot of those days lately. I had to find a new chiropractor, and finding any health professional that has worked with someone, or is knowledgeable about my condition is hard enough, but finding people who understand what I have is even harder. You start to wish you have something that is known, anything that is known and treatable, you even begin to envy people with cancer. At least they are treatable and people know what it is, and how to treat you, or at least more would seem to. With CRPS I seem fine on the outside, and no one, but my husband and close friends, knows how hard I work to keep up that appearance. Sometimes I get the mottled skin, and swelling which can be hard to hide. The symptoms are so subtle right now to the casual observer, most would never know anything was wrong with me.

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Remember you can’t always see the pain someone is in.

This frustration is what leads to a lot of what I would call white lies, and the oh so common Southern method of avoidance by not mentioning things. You find yourself avoiding discussing your level of pain, or even saying you have something wrong, since that could lead to a depressing discussion. Or just simply avoid discussing things by answering the compulsory “how are you” questions with some version of “I’m fine,” which most of the time you really aren’t.

When people don’t seem to understand my condition, or when you feel like people can’t understand how you feel about everything that happens to you, it can be extremely frustrating. It is mostly stems from the fact that I have to patiently explain for the nth time what I have, and the why’s and the how’s. The frustration leads to isolation, since there seems like there is no one to talk to to who really understands everything, and a lot of people don’t understand your physical limitations which puts strains on relationships. You begin to become trapped in a double prison, the confines of your living space, and your corporeal prison. If you are at all like me, canceling on anyone already makes you feel badly, but also means you are not able to go out…yet again. Even though you really, really want to. It can be very upsetting to have to cancel things you want to do, even more so when it seems that you have to do it more often than not. Then sometimes people aren’t understanding of you having to cancel, or think you are doing it on purpose. Social life becomes crammed into the good days, and it sometimes hard to not over do things and end up right back where you were.

You start to feel like this

You start to feel like this

Even when it isn’t like that it can feel like it is, but the days you do get to do what you want are so precious it can seem overwhelming. Some days are better than others, and on those days do as much as you can, and try not to overdo things. This year has been a harder year than usual and it has been more difficult to deal with, luckily though I have looked and found a support group and am already feeling more positive about my predicament since there are people out there that are dealing with CRPS in most of their body, like me. I am glad I have more people that I can add to my wonderful support base that I am already more than thankful for.

Sometimes, people can take you discussing your symptoms as giving up, or that I have resigned myself to the worst. I have read about the symptoms and I decided that I will emotionally prepare myself for all that could come my way. Just reading the treatments, especially the ones about amputation, can be scary or a bit of a downer, but I would rather embrace them emotionally now than have them hit me when I am unprepared. That way if the worst ever does happen, I have already mentally prepared for it, and I hope by doing this to not be crushed under anything horrible hitting me unexpectedly. I have been told that my acceptance of symptoms can come off as me giving up. I think it comes from their fear of me giving up, or their fear of my decline, but ultimately it comes from their care for me. So because of that I try to not let it get me down too much, but I think it should be said that if you know someone who has a condition that causes deterioration for their body, encourage them to see that the bits lost does not make them less of a person inside. I have found from personal experience the more you accept them and are at peace with them, the less painful the loss will be. Life will not end with pain, or loss of  limb, or mobility, or anything really. Life goes on in different ways, as the saying goes if one door closes, another opens. Don’t ever give up, it is always worth the fight to keep going even if you have to accept limitations.

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There is the other problem of when you mention a symptom some people jump to conclusions that it is something else and attempt to press you to be treated for something they think you have. Then you have to explain how CRPS is diagnosed and that it is a diagnosis by exclusion, which means you have to rule out any, and everything, it could be that is not CRPS. It is pretty a much less dramatic House episode, lots of tests and “well that is ruled out” sort of thing over months. I know inside that it comes from the hope that it could be the treatable option, and again from a caring place. It can be hard to deal with but, keep reminding yourself (as I do myself) that it comes from love and not to frustrate you.

Overall, yeah it sucks to have what I have, but I still very strongly feel my accident, and my condition, have made me a more peaceful and compassionate person. It has helped me find out who real friends are, ones that you want to keep around you, and the importance of keeping things positive. Try not to dwell on the can’ts, and dwell on the cans. Even I have bad days but there is always tomorrow, and I truly believe that.


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How Do You Do It?

Sometimes I dread being asked this question, more than the small talk question of “how are you.” Unlike the inquiry of your state of being, that you may have to give the white lie of “I am OK” and be done with it, this question can’t be brushed off. Also I feel I don’t have a good, answer to this question. By that I mean I think – “I don’t know, I just do,” followed by a shrug, a pretty lame answer. “I just do” can even seem a rude, but in all reality, I don’t know any other way to be. People have told me I am unique, and that I am “strong.” I don’t know about all that, I personally think I am just a normal human. Anyone can do what I do, I really do think everyone is capable of living a happy and positive life even with chronic pain. So I will attempt to describe how I do what “I just do.”

Something I know for sure is I am stubborn, I have always been as stubborn as a mule. While this hasn’t always been a boon to me in all situations, I guess it could be a large motivation in my need to keep going. I have an almost blind determination to just make it through today, because tomorrow could bring something new. New information, new techniques, and new experiences. Possibly even a reduction in pain, but you don’t know unless you make it to tomorrow. I absolutely know that I have to see tomorrow, and no matter how bad I feel now tomorrow will eventually come. This fierce determination springs from somewhere deep in me, bubbling up from a source that is, to be completely honest, hidden even to me. It could be my stubbornness, but a lot of days I am not really sure why I drag myself out of bed, and force myself to go through the motions of a normal day. There are a lot of days where just the act of getting out of bed is excruciating, but I do it. Sometimes its very, very slowly, but I still do it. I have to, something in me makes me feel I must. My stubborn mind tells me that staying in bed is not an option, so get up! There is stuff to do! I am even starting to wonder if I may actually be physically unable to stop completely. To just give up and wallow in a puddle of self pity and immobility seems to be something that is beyond me. I also think, just going through the motions makes you feel better, even if your pain levels don’t improve. More often than not it usually does improve my pain levels. Just like getting up, having a shower and getting dressed can make you feel better when you are feeling sick.

Another thing that helps me not start to slip into the quitter sort of thinking, is making sure I feel like I accomplished something. That feeling of despite everything stuff still got done, makes me feel like the day wasn’t completely surrendered to The Pain. You can say to yourself, “Hey Self! Even though you couldn’t do everything you wanted to today, you still did something. Good job!” And you really do feel good about it. Even if that something seems simple like just sitting up for an hour, reading, or walking to the mailbox. Because sometimes, even though you may not want to admit it, that is all you are truly able to do. I have struggled with it, but I feel I have gotten to a point where I have accepted my new limitations. I set daily goals I can meet, and adjust them according to my pain. Like I said it can be a struggle, especially if you are a person that was very active and forced to halt. Speaking as just such a person, it is hard, but not impossible. Before my accident I was working a full time job, a commuter cyclist, and avid student of two styles of martial arts when I wasn’t cooking, sewing, reading, drawing, etc, etc, etc. Then my life came to a screeching halt. But like the saying goes, when one door closes, others open. You have to embrace the fact that a simple task such as mopping the floor, cooking dinner, or even just walking the dog, could require hours, or even days, to recover from. Tasks you did effortlessly before some have now become difficult, maybe even impossible. This wears on the psyche, and for me creates thoughts like…

“I am not who I was before…I am broken…I am useless…”

Thinking like this can really throw you into what I call a “well of despair.” That dark pit of soul crushing sadness, that sort of depression that makes everything seem not worthwhile. If one thinks only negative thoughts, it will only continue the descent into negativity, and inevitably giving up. It is a deep pit, one you have to claw and fight your way out of once you are init. Not many chronic pain sufferers escape alive once they allow themselves to fall in. One thing you always hear is suicide rates and that they are extremely high for chronic pain. Negative thinking is a slippery slope into that pit. It starts small, and seems innocent at the start, but it grows quickly. This then breeds depression, anxiety and stress. Pain is already isolating, it cancels plans, it doesn’t stop for birthdays or holidays, and it can make you want to withdraw from people and the world. Feeding it negative thoughts only increases its power, so why give pain more power than it already has?

Pain, especially chronic pain can be very hard. The worst thing when discussing it with people is, it is invisible. If you have a broken arm, people can see the cast. But being in pain doesn’t always show on the surface, or it is intentionally hidden, and this can sometimes lead to further isolation. People don’t understand that sometimes you have to cancel plans. That you can attempt to plan in advance but things are always “pending how I feel.” Friends can think you are avoiding them because you were able to do something one day, but then not at another. To top it all off, it is frustrating for you since you aren’t able to do what you want. The invisibility of pain can destroy relationships if you allow it, and sometimes even if you try not to. Pain separates you from your loved ones, your support, and makes it far easier to slip into the “well of despair.”

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Sometimes its bigger than a well, sometimes its the size of the inside of a Tardis.

Also falling into that kind of thinking is a hard fight to get out of, harder still when you are fighting your own physical pain. So the best way to combat that is to not slip and fall into that trap, or, even better, be so far from the edge that it isn’t even a worry. Positive thinking, it is so so important, find that silver lining in all situations. This has kept me from the edge so far, and it really is an easy habit to keep once you get started.

Another way I have found works to fight falling in, is to keep my mind (or hands) busy. Up wandering the house at night because you can’t sleep? Time to fold that laundry. Time to do some research. Time to work on my stretching exercises, or other exercise routines. Time to do some baking/cooking. Time to work on creating something. Time to do anything that will take your full focus, anything that takes your full focus means that you can not be also thinking about anything else that might be going on. This includes how much pain you are in. Being able to focus your mind so intently on something diverts it from the task of reminding you that something is hurting. It can give you a much needed emotional break at the worst of times, and it can feed into that feeling of accomplishment I mentioned earlier.

Everyone is different, and everyone’s perceptions shape them, but I think everyone is capable of living happily. You just have to chose to be so, no one, and no thing, will ever make you happy for you. You have to do it for yourself, and chronic pain sufferers can be happy, I am living proof! Every day is full of potential, seize it! As long as you never give up, and never surrender. Just do it and tomorrow will be right around the corner.