A note about Chronic Pain- Hopefully it helps others understand myself & Doug and our lifestyle changes...
Having chronic pain means many things change.
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 care about school, my family, my friends, and most of the time - I'd still like to hear you talk about yours, too.
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. 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. 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.
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. 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.
"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. 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.
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. 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. 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.
AUTHOR UNKNOWN (This spoke the words of how I feel better than anything I have ever seen written. To whomever the author is, I Thank You!!)
3 comments:
I really love the anonymous letter written for people without chronic pain. It says exactly what I want said. Unfortunately, I sent a copy of this letter out to each member of my family a couple of weeks ago, and nobody, not one of them have sent any type of comment or reply back to me. That almost hurts more than anything else. I know it can be overwhelming to know a person who has chronic intractable pain, but for those who have never experienced it, all I asked is that they read that letter. I was truly hoping for something from even one person, but nothing. In fact, for the most part, I don't think any of them really even believe I have this horrendous condition. I can go without seeing some of my family for several months, yet when they do see me, not ONE of them asks me how I am doing-NONE of them. And that, is almost more difficult to deal with than the actual pain. Thank you for reading and listening to my venting. I wish everyone the best in their pain relief searching. Pam
I am so sorry that you have experienced that with no one listening or seeming to care. I thought of sending that letter out myself, but that is exactly what I was afraid that would happen to me too. It is hard, isn't it? And it makes you feel very alone if you are anything like me? And I think people think that same thing about me, that I really don't have anything really wrong with me, but that I am just faking it. If they only knew the pain that we deal with, literally, then maybe people would think otherwise.
Why would someone ask you how you are when they already know? You have put it very plainly that you are always hurting and not willing to try anything else to help it. Maybe weight loss or diet change for more than a week. Sometimes it takes weeks or a month or two for these changes to help. I will pray for you.
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