Tag Archives: chronic pain

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It’s All About the Attitude

I’ve been told that I’m the happiest person that people know.  I’m always chipper.  I’m always in a good mood.  I keep thinking about that comment.  I keep thinking about the way I hear other people talking.  I keep thinking … Continue reading

RA Pain

I’ve been working on pulling together my first couple of Videos for WEGO Health TV on RA and I posed the question to a group of online friends (partly to get the answers… partly to generate a lively discussion about what RA pain is like).

I was partly surprised at the answers… and partly not so much.  The physical description was what I thought I was after initially, and I got that too.  Now, I’m not so sure that is actually the best way to attack it.  I think it matters even more to remember that all of the pain in RA isn’t necessarily the pain in our joints or the utter exhaustion that we feel.  The pain itself is only the beginning… and in a lot of cases not the worst.  The worst of the pain in what happens in your head and in your heart.

Think about the things that you treasure most in your life.  Not the money stuff, the stuff that really matters.  Now, think about what if it hurt to do them.

What if it hurt to hold your 5 year old child’s hand on the first day of school?

What if you couldn’t get out of bed to watch your baby graduate from high school because you were in so much pain.

Holding your first grandchild

Baby sitting your neices and nephews (maybe you can’t lift their tiny body because of the pain and fatigue and weakness… maybe you are scared to death that your joints will give way and you might drop them)

You wake up one morning and your kids are depending on you to get them to school or to camp or to a sporting event (maybe counting on you being there to watch them for the day) and you can’t get out of the bed because your body refuses to listen to what you are telling it to do (muscle memory works in reverse, too, sometimes your body just get pissed off at you and won’t do what it knows will hurt) and your kids are late for the imporant events, events you never do get to attend.

You love to take pictues of all of the events in your family’s lives, and you can’t hold the camera long enough to take the pictures any more, or steady enough to.

You write… communicate with friends or family, or write for disbursing information and pleasure (poetry, stories, journals) and you can’t type for long periods of time (if at all) any more and holding a pen is difficult on a good day.

Pealing an apple with a paring knife

Knitting

Crocheting (my mom remembers a great aunt crocheting with thread when she had RA, her hands were so knotted and her fingers so twisted that she had to use a pillow to help hold her thread and her projects and she fought the pain to be able to make the stitches)

Picking flowers… gardening… cutting the grass…

You are too exhausted to go to family functions (holidays, birtdays, celbrations)

You can’t walk to the mail box most days because your toes and ankles and knees and hips hurt too bad.  You fight your body after half a day at an ammusement park because your feel hurt so bad and are swelled to such an extent that they won’t carry you from one bench to the next or from the parking lot to the hotel room.

You see the hurt look in someones eyes because you instinctively (not deliberately) flinch when they try to hug you or shake your hand or touch you.

You cringe and fight back tears when you see that the guy is cleaning the revolving door and you know you are going to have to try to pull open the regular door with your hands.

You avoid going to the zoo, or on a field trip, or a concert because you can’t get a “good” seat or you don’t know what steps you might have to walk up, or if there will be a place to sit down to rest (or time to sit down to rest) or what the bathrooms will be like (autoimmune disease means that you have to think about what you are touching and who might have touched it before you, who wasn’t quite as clean as they should have been maybe fixing your food or opening the bathroom door)

You try to figure out how to make the keys to the car/door/mailbox big enough (or turn easy enough) that your fingers will be able to unlock or lock or start or shut off whatever it is that needs the key to work.

you can’t color because the crayons are so small

You know that someone avoids anything physical with you because they are afraid that they will hurt you.  You maybe appreciate that they are being careful, but there are times when you would much rather deal with just a little extra ouchie rather than dealing with feeling like you are a bother or that you are too RA to be touched and hugged and played with.

Not every day is this bad.  Not everyone has these situations or has them to the same degree (my RA isn’t your RA as the commercial says) but it is what it is, and it always will be. But everyone with RA has had the pain that hurts the body, but hurts the heart and the spirit even more more times than anyone would like to remember.  And that is a pain that Prednisone or NSAIDS or even Darvocet can’t chase away.  It is a pain that pokes at you every time you remember what you miss.

I try hard to stay positive most of the time in my life.  I figure that how I look at something is as important as the something I’m looking at.  But sometimes reality is what it is and some things just need to be said.

A Letter to People Without Chronic Pain

I found this this morning on an RA forum and it spoke to me a lot…

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 who 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, family, my friends, and most of the time, I’d still like to hear you talk about yours too.

Please understand 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.

Please understand that 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 every day. 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 social” and so on….it applies to everything. That’s what chronic pain does to you.

Please understand that 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.

Please understand 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 seomthing 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 that 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 I have to do it right now – it can’t be put off or forgetten 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 a worldwide network (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 of 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 your help 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 asked a lot from you and I do thank you for listening, it really does mean a lot.

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Friends are just angels who have forgotten how to fly