Chronic pain (long)

[gwynhefar]

Some thoughts on chronic pain . . .

Those who have never had chronic pain can't possibly understand what it's like. Chronic pain, particularly intermittant chronic pain, is one of the least understood conditions out there.

People try to tell you you're making it up: 'What do you mean you can't do that? You look fine to me!' Just because you can't see pain doesn't mean it's not there. Just because I'm not on crutches or I'm not limping doesn't mean I don't hurt. And yes, I can hurt just sitting here.

If it's intermittant, you have to justify your good days. 'What do you mean you can't come into work today? I saw you out and about yesterday, but *now* you're telling me you can't work. Yeah, right.' Yeah well, yesterday was yesterday, today is today. Just because yesterday was a good day doesn't mean I'm not in pain today.

The pain rules your life. I'm hesitant about making social commitments, particularly ones that require activity or long travel. Because I can't know that I'll be up to going out on any particular day.

If I say I can't do something, don't argue with me. I know my limitations. I may be fine to go out and eat where I can get up occasionally and stretch, but I can't sit in one place through an entire movie. I can go walking in the park, but I cannot sit in a car for 3 hours to go somewhere. I can swim in your pool, but I can't go to the zoo with you -- too much walking. Trust me, these are real limitations. Don't say I look fine. Don't assume that the fact that I say I can't go out with you today means I'm avoiding you. It means I'm in pain and I can't go out. Maybe you'd like to come over? We can watch movies while I lie on my couch on a heating pad. Yes, that really is all I'm good for today. Try me again tomorrow.

And a realisation I came to just recently: chronic pain sufferers have a relationship with their pain that is not unlike the relationship between an abused person and their abuser. We make excuses. We blame ourselves. It's my fault really. I shouldn't have gone to that concert last night. I should have known better. I overdid it and so I deserve not to be able to get out of bed today. I was being silly. If I didn't do all those stupid things like going to concerts and spending the day walking around sightseeing or taking that long trip out of town then I wouldn't hurt so much. So it's my own fault, really. I should have known better . . . We get to the point where we no longer believe that we deserve to be able to do normal things.

We feel shame. We don't want people to know that we simply aren't able to do something because of the pain. It makes us feel weak. Because we should be stronger. We should be able to handle it. And most of us have people who don't understand telling us all the time that we should be able to do things we can't do, and so that shame is reinforced. We either find other excuses ("I didn't really want to go out today anyway, I'm not in the mood") or we grit our teeth and do it, knowing we'll pay the price later (which will, of course, be our own fault).

Chronic pain has a life of its own, and it affects every aspect of the life of the sufferer. People who suffer from chronic pain are more likely to also suffer from depression than non-chronic pain sufferers. Living your life in constant pain with little or no relief is one of the most discouraging and frustrating feelings imaginable. There will be times when you will want to give up. When you would do almost anything just to make the pain stop. There will be times when you will want to throw a temper tantrum that would put a two-year-old to shame. To scream and hit and throw things. You will cry tears of pain and tears of frustration and sometimes you won't know which is which.

The only thing I can ask of you is this: If you know someone who has chronic pain, let them know that they are not alone. Let them know that you understand their limitations and that you will be happy to work within them. Let them know that it is *not* their fault. Let them know that you understand that you can't fix it, but that you are willing to listen to their fears and their frustrations. Understand that their pain is like an unwanted tagalong that will always have to be factored into any plans. Let them know that you understand this and that you don't mind. Let them know that they never have to justify either their good days or their bad days to you. Rejoice with them in the former and be there for them in the latter. They will appreciate it more than you can ever know.

Comments

[maida-mac.livejournal.com]

Gods, I can relate. Seriously.

Mind if I link to this?

[gwynraven.livejournal.com]

Go right ahead :)

[shadesong.livejournal.com]

Yes.

*hugs you*

[gwynraven.livejournal.com]

*hugs*

[shadesong.livejournal.com]

May I link to this?

[gwynraven.livejournal.com]

Certainly!

[noetickerf.livejournal.com]

thank you for this; you've given me something to think about.

[gwynraven.livejournal.com]

I live to serve :)

[rowancat.livejournal.com]

Except for the degree and type of pain i know exactly where you're coming from. You wouldn't think even severe "headaches" and useless OTC meds could rule your life but...

And ::Hugs::

[piratejenny.livejournal.com]

I'm gonna send this to one of my good friends (not on lj). She's got chronic pancreatitis. She sees a pain specialist. She's on such heavy duty painkillers that I'm simply astounded she can function on a day to day basis. And of course people are constantly harassing her about the painkillers. Dumbasses. It's not like she's taking the shit to get high. She'd just like to be able to sit down for a day of work without curling up in pain. And unlike some people (like some of her coworkers), I can tell when she's not doing well. I've actually seen it happen--I made her go lie down during her own housewarming party (I was the only guest there at the time, so it was okay).

Re: chronic illness and depression: tons of studies support you. Sadly, it's not only chronic pain but chronic illness. If you haven't read Against Depression yet, you should. I recommend this book like crazy, but it really gives the reader a great understanding of how depression is a physical disease. Also the fact that no matter why you have depression (predisposition for depression for whatever reason, or via a different chronic disease), it looks exactly the same in the brain.

Good luck to you Gwyn. I can't imagine how awful it is, but I know it is from my friend. And here's hoping people stop thinking of themselves and how awful they think you're being first and start realizing what's really going on with you.

[gwynraven.livejournal.com]

Thanks. Most people I know are actually pretty supportive, and my boss has been good about working with my limitations -- I get to have the student workers do a lot of the shelf reading and bending and lifting work I would otherwise be doing. But there's always those few who don't understand and expect more than I can give. It's just frustrating, on many levels.

[azurelunatic]

Chronic pancreatitis?

My bondmate's dad was down for about a month with pancreatitis, so it boggles me that someone with chronic pancreatitis is functional in any day-to-day way.

[piratejenny.livejournal.com]

There are a number of reasons we refer to her as the Amazon or the Valkyrie. Only one is her height.

Like I said, serious heavy-duty painkillers. As in narcotics. And she also refuses to give in to it. But her weekends are very often shot from getting through the week.

[cissa.livejournal.com]

Chronic pain is a miserably hard thing to cope with. I admire those who do. *hugs*

[riot-poof05.livejournal.com]

*Hugs* You know, I really thought about it, and I feel really bad about dragging you to the zoo :(

[gwynraven.livejournal.com]

Nah, it was ok :) And I did enjoy myself.

Hi :)

[azhure.livejournal.com]

Just wanted to let you know that I added you :) Found you on zarhooie's flist.

Re: Hi :)

[gwynraven.livejournal.com]

And I added you back! Welcome to my journal :>

[carocrow.livejournal.com]

:-(

It's good that you write about it so eloquently. I think the spoons analogy is useful for people who can't grasp it, and for those that won't try, I hope they never have to deal with it.

On my good days, I think about going back to work. On my bad days I wonder how I would manage it, even part time.

My big wish is that people would stop seeing pain as emotional or a sign of weakness. I'm not a martyr, but I don't need to be a saint, either.

[gwynraven.livejournal.com]

Precisely!

[gwynraven.livejournal.com]

Certainly! If it helps people understand I'm all for it.

[magickcat.livejournal.com]

Wow. Just wow. You said what I couldn't. I have tried so many times...
May I link here?

[gwynraven.livejournal.com]

Please do.

[magickcat.livejournal.com]

Many thanks.

[rhicat.livejournal.com]

Found you through 'song's link. Thank you. I hadn't realized how much blame (guilt?) I was placing upon myself.

[chorus-of-chaos.livejournal.com]

found you via azurelunatic

Yeah well, yesterday was yesterday, today is today. Just because yesterday was a good day doesn't mean I'm not in pain today.

if you are anything like me it is BECAUSE yesterday was a good day and I tried to get as much done as I possibly could and over did it and now the next 3 or 4 days are going to be screaming bloody.

Living your life in constant pain with little or no relief is one of the most discouraging and frustrating feelings imaginable.

I have several shot vertebra in my back from being naturally big busted. EVERY BREATH feels like knives driving through my spine. EVERY. BREATH. It NEVER stops. All day, all night, all week, all year...I hold my breath somtimes until I black out, just for that brief relief. I'm on meds that the dosage I take could kill someone else...but all it does is keep the pain just below the threshold where I'm not throwing up from the pain levels. I did that for nine months, lost over 100 lbs, and damaged my stomach and esophogus while trying to convince doctors I wasn't drug seeking, I was SICK. Drug seekers don't beg for breast reduction surgery. Drug seekers don't beg to be sent to endocrinologists, and rhuematologists, and all the other specialists (there is alot more going on then just my spine, alot of biochemical stuff screwed up. I've had to research and research because doctors here just want to throw pain pills at the problem and then give me grief because I'm on pain pills. Give me another option, I'll take it GLADLY! Do you think I LIKE not being able to go to the bathroom without screaming in pain from the side effects? Do you think I enjoy having no short term memory? Do you think I'm happy that I'm rotting my liver away faster than moonshine ever could? No, they just don't think. Period.

The woman who screamed rude things at me for parking in the handicap spot, even though I have a plate, saying that just because I'm fat it's not a handicap....and my hitting my limits, my edge, and losing it and screaming at her what, do you think people just wake up suddenly one day in a wheelchair? NO! It's a long degrading painful process of watching everything that you love to do and everything that is your life taken from you one thing at a time because your body is FAILING you, and there is NOTHING you can do about it. It's having to give up every hope and dream because you know that by the time you have the means, your body won't be able to hold up. It's giving up having and doing the things that everyone else takes for GRANTED, like being able to SHOWER without winding up on the floor of the bathtub screaming and sobbing in pain. It's having BEEN thin and watching yourself put on weight and struggling to exercise and hurting yourself FURTHER, and the meds just put the weight on FASTER.

A full parking lot of people, standing, staring....and one by one....applauding. It sank in I think...to a lot of people. She turned her nose up and got in her car and left...several people thanked me for helping them to understand what loved ones of thiers were going through, while I sat on a curb and wept, shaking, because all that truth pouring out of me had been things not even realized until then.

I hope you don't mind if I friend you...we all need support sometimes.

[gwynraven.livejournal.com]

I don't mind at all. I've added you back. It is always nice to connect with someone who knows what it's like.

[aurora-lamour.livejournal.com]

This was extremely well written. Since you had already given permission, I linked to it. I hope you don't mind.

[gwynraven.livejournal.com]

Nope, not at all. Link away!

[aurora-lamour.livejournal.com]

Mind if I add you?

[gwynraven.livejournal.com]

Nope, please do.

[gallowglass.livejournal.com]

I'm sitting here writing this at this hour because I haven't been able to get to sleep yet because of the pain in my legs and reading what you've written here, I can only agree with it. I thought I had a low opinion of people generally before all this began but trying to get them to respect the boundaries caused by a chronic illness and the concomitant pain has shocked even an old cynic like me.