Blue Indian

This evening I received an email from a fellow member of a forum regarding what we go through with chronic pain. It hit me especially close to home and I just felt led to share it here. At this moment I'm not wanting to shove it toward anyone in particular but most of what is contained is exactly something I've wanted to vocalize for some time now.  I really don't intend on keep this blog about me or what I go through in all this. Sometimes it just feels nice to share.


LETTER TO PEOPLE WITHOUT CHRONIC PAIN: 

Having chronic pain means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about chronic pain and its effects, and of those that think they know, many are actually misinformed. 

In the spirit of informing those who wish to understand ... 

... These are the things that I would like you to understand about me before you judge me... 

Please understand that being sick doesn't mean I'm not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit, sometimes I probably don't seem like much fun to be with, but I'm still me-- stuck inside this body. I still worry about school, my family, my friends, and most of the time - I'd still like to hear you talk about yours, too. 

There is a the difference between "happy" and "healthy". When you've got the flu, you probably feel miserable with it, but I've been sick for years. I can't be miserable all the time. In fact, I work hard at not being miserable. So, if you're talking to me and I sound happy, it means I'm happy. That's all. It doesn't mean that I'm not in a lot of pain, or extremely tired, or that I'm getting better, or any of those things. Please don't say, "Oh, you're sounding better!" or "But you look so healthy!¨ I am merely coping. I am sounding happy and trying to look normal. If you want to comment on that, you're welcome. 


Being able to stand up for ten minutes doesn't necessarily mean that I can stand up for twenty minutes, or an hour. Just because I managed to stand up for thirty minutes yesterday doesn't mean that I can do the same today. With a lot of diseases you're either paralyzed, or you can move. With this one, it gets more confusing everyday. It can be like a yo-yo. I never know from day to day, how I am going to feel when I wake up. In most cases, I never know from minute to minute. That is one of the hardest and most frustrating components of chronic pain. 

Please repeat the above paragraph substituting, "sitting", "walking", "thinking", "concentrating", "being sociable" and so on ... it applies to everything. That's what chronic pain does to you. 

Chronic pain is variable. It's quite possible (for many, it's common) that one day I am able to walk to the park and back, while the next day I'll have trouble getting to the next room. Please don't attack me when I'm ill by saying, "But you did it before!" or Oh, come on, I know you can do this!" If you want me to do something, then ask if I can. In a similar vein, I may need to cancel a previous commitment at the last minute. If this happens, please do not take it personally. If you are able, please try to always remember how very lucky you are--to be physically able to do all of the things that you can do. 

Honestly, please know that "getting out and doing things" does not make me feel better, and can often make me seriously worse. You don't know what I go through or how I suffer in my own private time. Telling me that I need to exercise, or do some things to get my mind off of it¨ may frustrate me to tears, and is not correct if I was capable of doing some things any or all of the time, don't you know that I would? I am working with my doctor and I am doing what I am supposed to do. 
Another statement that hurts is, "You just need to push yourself more, try harder..." Obviously, chronic pain can deal with the whole body, or be localized to specific areas. Sometimes participating in a single activity for a short or a long period of time can cause more damage and physical pain than you could ever imagine. Not to mention the recovery time, which can be intense. You can't always read it on my face or in my body language. Also, chronic pain may cause secondary depression (wouldn't you get depressed and down if you were hurting constantly for months or years?), but it is not created by depression. 

Please understand that if I say I have to sit down/lie down/stay in bed/or take these pills now, that probably means that I do have to do it right now - it can't be put off or forgotten just because I'm somewhere, or am right in the middle of doing something. Chronic pain does not forgive, nor does it wait for anyone. 

If you want to suggest a cure to me, please don't. It's not because I don't appreciate the thought, and it's not because I don't want to get well. Lord knows that isn't true. In all likelihood, if you've heard of it or tried it, so have I. In some cases, I have been made sicker, not better. This can involve side effects or allergic reactions. It also includes failure, which in and of itself can make me feel even lower. If there were something that cured, or even helped people with my form of chronic pain, then we'd know about it. There is worldwide networking (both on and off the Internet) between people with chronic pain. If something worked, we would KNOW. It's definitely not for lack of trying. If, after reading this, you still feel the need to suggest a cure, then so be it. I may take what you said and discuss it with my doctor. 

If I seem touchy, it's probably because I am. It's not how I try to be. As a matter of fact, I try very hard to be normal. I hope you will try to understand. I have been, and am still, going through a lot. Chronic pain is hard for you to understand unless you have had it. It wreaks havoc on the body and the mind. It is exhausting and exasperating. Almost all the time, I know that I am doing my best to cope with this, and live my life to the best of my ability. I ask you to bear with me, and accept me as I am. I know that you cannot literally understand my situation unless you have been in my shoes, but as much as is possible, I am asking you to try to be understanding in general. 

In many ways I depend on you - people who are not sick. I need you to visit me when I am too sick to go out... Sometimes I need you help me with the shopping, cooking or cleaning. I may need you to take me to the doctor, or to the store. You are my link to the normalcy of life. You can help me to keep in touch with the parts of life that I miss and fully intend to undertake again, just as soon as I am able. 

I know that I have asked a lot from you, and I do thank you for listening. It really does mean a lot. 

AUTHOR UNKNOWN

In Color

Throughout the previous posts on this journal page I've strayed away from getting too personal with what's exactly going on in my life. I feel now is as good of a time as any to finally say my peace and be done with it for a while. So, just bear with me if anyone reads this. I'm doing this for me and I really want nothing in return from anyone.
Honestly, talking about what I deal with day in and day out regarding my chronic back pain issues is still tough for me. Usually I'm so open with most everything in my life but I feel like I've been holding on to this and I don't really have a valid reason. I've recently come to terms with my ailment and am more confident that God has a plan to use me for something good.

The previous two weeks have been therapeutic in many ways. Being without Penny has allowed me more freedom with my schedule away from work and I've been able to visit family a few times. The house is quieter, for sure, without her but I've enjoyed not having the demands of a dog around the house.

Most don't realize the toll chronic back pain takes on all aspects of an otherwise normal lifestyle. The simplest things such as turning to get out of bed or standing and reaching into a cabinet for a plate and even still, just sitting in a straight-back chair all wreak exacerbating pain throughout my entire lower back. Because these simple tasks turn into mountainous hurdles to climb on an hourly basis, days always seem to feel like a competition with myself that never ends. Laying back in my recliner at the end of the day is my only reward or respite of comfort. Sometimes I just have to laugh at how simplified and dumbed down I've had to gear my life. I can't say there haven't been tears either.

I used to be so active with sports, man how I miss golf.  I've given thought to selling my clubs. Being able to mow and string-trim 10 yards a day is now behind me to some extent. My best memories of younger years are filled with soccer and mowing. There's more things I truly enjoy doing that I think up everyday that I'll continue to miss. I won't list them all because it would look like a pity party. The point is that I'm trying to stay positive through all this. Obviously I'm not able to see into the future and know if I'll ever be able to do certain things or if they are forever in my past, but I'm slowly coming to terms with the fact that it's a good possibility that I won't be able to.

At first when all the doctors and nurses would say "you're too young to be having back problems" I would just kinda chuckle and agree with them. That was when I didn't fully understand my condition and what Bertolotti's Syndrome meant for my future.

From Wikipedia: Bertolotti's syndrome is a form of lumbago in the lumbosacral transitional vertebrae. The syndrome is not usually treated, as not much is known yet about these spinal segments. It is named for Mario Bertolotti, an Italian physician. Bertolotti's syndrome is defined by a transitional 5th lumbar vertebra resulting in partial sacralization. Of importance is that this syndrome will result in a pain generating 4th lumbar disc resulting in a "sciatic" type of a pain correlating to the 5th lumbar nerve root. Usually the transitional vertebra will have a "spatulated" transverse process on one side resulting in articulation or partial articulation with the sacrum or at time the illium and in some cases with both. This results in limited / altered motion at the lumbo-sacral articulation. This loss of motion will then be compensated for at segments superior to the transitional vertebra resulting in accelerated degeneration and strain through the L4 disc level which can become symptomatic and inflame the adjacent L5 nerve root resulting in "sciatic" or radicular pain patterns. This is a congenital condition and is usually not symptomatic until one's later twenties or early thirties.

Mom has helped me put into prospective what it means at my age to go through something so rare. She, too, is a 'survivor' of a rare congenital affliction. To have my own mother know what it's like to have to explain to everyone what is going on and why I'm doing certain things has helped keep me sane. She's comforted me in a way that only a mother can but also in a way that only someone that's been through so much pain can also.

The overall support I've had from family and friends has been so inspiring. I'm lucky to have each one in my life. I've always said that You Get What You Give. Throughout my young life I've tried as much as possible to treat others how I would want to be treated. It's come back to me 10-fold for sure, and that's not gloating on my side.

My daily reality is that every action made when not in my recliner causes unbearable pain. The goal of not taking medicine for the pain has past. It's no longer an option to live without the medicine. Part of me has been taken away.

The part that can never be taken away, however, is my faith that God has something special in store for me. My ultimate goal is now through my affliction to make Jesus known. I've chosen to use my ailment for His glory. Behind me may be a lot of good memories of being active, but what lies ahead is even greater. The future, in my mind and heart, looks brighter than anything that I've been through yet.

I'm not going to turn into some recliner couch potato who whines about how he can't do stuff anymore. Please know that I've made a commitment to shed my past and give God the glory for saving me from selfishness when I could have thrown in the towel being faced with all this pain.

So that's what I've been chewing on lately. I'm absolutely miserable almost every hour of the day, but this body is not mine. I'm living proof that our bodies are literally HELL. Every day is an example to me that this world is hell but Heaven is the only reward I should seek. Most people don't ever realize this because they don't suffer through chronic pain, or have a body that they don't want to be in. God has shown me this and I want to make it known. I continue to pray that He will work through me so that I may impact the lives of the few that would read this.

May the grace of the Lord Jesus Christ, the love of God, and the fellowship of the Holy Spirit be with you all.