Pain, the physical variety

[jennyaxe]

For the past five years I've been in pain. During that time, I can't recall a single day when I was free from pain. People sometimes ask how I can stand living like this. I've answered that "you get used to it", which is the truth. Having this burning/aching sensation in my abdomen is a fact of my life, just like having to put on glasses or contact lenses each day.

So much for the "background pain". Then there's also the stabbing pain, but it's really not that frequent, and there are the cramps, which aren't that frequent either. I've been on Synarela for about four years now, and those years have mostly been OKish. Sure, the pain and the painkillers cause tiredness, and I can't do all the things I want to do, at least not as often as I'd like, but on the whole it's a fairly good life.

Yesterday I got a reminder of just how good this normal-for-me life really is. I'd slept well and was in a very good mood when my mother and I went down to the local shopping centre. Mom was staying here for three days, and we were going to visit my father in law yesterday, so she wanted to look for something a bit nicer than jeans to wear. I was looking for a gift for my brother in law. Mom went off to the clothes stores, I went into a tech toy shop.

That's when it happened. Pain shot through my abdomen, from somewhere low in the back all the way through to the belly. I was afraid I'd faint. I tried sitting down on a chair outside the store, but it just kept getting worse. I went towards the public loos at a sort of staggering run, got in and locked the door. I sat down on the loo and had to hold onto the sink to keep from falling down off it. I was nauseous, crying and sweating with pain.

After a while, it got a bit better. I took a painkiller and waited to make sure it wouldn't come back again. Mom called and asked where I was (cell phones can be very useful sometimes), and we agreed that I'd go and meet her when I'd recovered a bit more. A few seconds later the pain came back. Same procedure again, except I didn't need to run to the loo as I was already there. It lasted about as long as before.

Then I went to Mom. We walked home - slowly - and I proceeded to frighten the hell out of my husband by crying and telling him how bad I felt. More painkillers were fetched and I crawled into bed to cuddle with the heating pad. After an hour or so, the pain had receded from intolerable to merely horrible. Mom drove Calle to his father's and then came back to stay with me. The pain kept receding, and today it's back at a normal-for-me level.

The point of all of this is that I thought I was used to being in pain and could handle it well. I was wrong. I was used to being in this amount of this kind of pain, and when I got a different amount and a different type of pain, I couldn't cope at all.

The other point is that my life really is quite good. I remember that five years ago, I had this kind of attack two or three times per week, except during menstruation, when it was several times per day. The medication I'm on does have some irritating side effects, but as long as it keeps these attacks away, I'll try not to complain about them again.

The third point is that when I say that it could be worse, I really really mean it.

Comments

[supermouse.livejournal.com]

I don't know if you'd want them, but:

*hugs*.

And I know exactly what you mean and I am so glad the gallbladder was a temprary, easily fixed problem. Long may your painkillers work.

[jennyaxe.livejournal.com]

Thanks. My blessings on whoever invented Tramadol...

[megabitch.livejournal.com]

You do get used to a level of pain. Then a new pain is a whole different matter. I find when taking strong painkillers that they work for the background pain but that the sharp pains just pierce right through.

I was lucky, there was an operation for my biggest problem, and my foot has been helped by inserts in my shoes and slippers. The only pain I have is general headache-y and joint aching when I wake up. I started having it investigated, then left London, need to get back to the doctor soon.

[jennyaxe.livejournal.com]

I had an operation for the endo, four years ago. It got a lot better after the op, but they didn't remove the endo on the bowels and the bladder. There's also a problem with adhesions - a clump of scar tissue in which nerves are stuck is what's causing the "normal" pain. What happened the other day had something to do with the endo on the bowels, or possibly a ruptured cyst. Anyhow it's lots better now.

I'm glad you've gotten better! I hope you find what's causing your joint problems, too... hopefully it'll be something that can be dealt with, but even if not, it feels better just to know what you're dealing with - at least IME.

*hugs*

[jegra.livejournal.com]

I'm almost in tears, you are such an incredible woman to be able to continue to look at life in such a positive way. You remind me a whole lot of my mother, she is of the same kind, won't stop at anything. This holiday she took care of all the food work, she wouldn't accept help, even though her left foot is breaking down rapidly, I'm not sure she will be able to walk when it's time for here surgery. Still she does what she want to do and if no solution seams available she will come up with one of her own.

You are one of those every-day-heroes we all should think of when feeling bad about life... My mother is another one.

[jennyaxe.livejournal.com]

It's lots easier to be strong when there are friends like you around!

I hope the surgery will help your mother. From what you've told me and from what I've seen when I've met her, she's indeed a woman to admire.

[ailbhe]

This is one of the things that makes me grateful I have reduced my chronic pain levels so severely - I think they're probably gone, but my pain-recognition is so bad [1] that I don't honestly know. Whatever it is doesn't bother me any more, anyway.

Hurrah for medication!

A.
[1] As in, I poured a kettleful of boiling water over my hand and didn't notice that the sensation I felt was "pain" - it was just "different". Also, I've fractured at least 6 bones without noticing. It's not a good idea.

[jennyaxe.livejournal.com]

Aiee! I hope I never get that level of pain insensitivity! It sounds dangerous indeed - what if you get appendicitis or something?

Though I'd imagine that sometime the next year you'll find reason to be thankful for it...

[ailbhe]

I've been working on it, and I think I feel most pains now. It was a matter of recognising pain as pain, and not just as "different". When I knew that my arms were fractured, *then* the feeling registered as "ow". Not recognising pain was useful many many moons ago, but it's not now, and for the past 2 years or so I think I've reliably recognised pain when it has been warning me of something. I'm still never sure of the level of pain I have - I can't seem to calibrate my painometer. I tend to go by how much or little I can do - if my fingers won't move when I want them to, the feeling in my wrists is probably pain, sort of thing.

Actually, this is hard to explain.

I have no idea what might have happened if I got appendicitis, unless there would be useful accompanying cramps that would inhibit movement and indicate something wrong that way? That's what happened with the gynae issues I had when I was 18.

[themerovingian.livejournal.com]

For the past five years I've been in pain. During that time, I can't recall a single day when I was free from pain. People sometimes ask how I can stand living like this. I've answered that "you get used to it", which is the truth.

Likewise. I've been living with constant, daily, disabling pain for nearly 10 years and while it's not pleasant, not fun and extremely frustrating on top of just plain old sore, you do get used to it.

That's when it happened.

I have always found that the human body has a very perverse sense of humour and chooses exactly the wrong moment to remind you that hello, I'm here and ooh, you will feel all sorts of new and exciting and absolutely horrific pain.

More painkillers were fetched and I crawled into bed to cuddle with the heating pad. After an hour or so, the pain had receded from intolerable to merely horrible.

On a tangent, what constantly amazes me with my own pain is the amount of watering my eyes do. It's not tears, it's a stream of water that trickles, specifically from my right eye at the present as I have severe TMJ in my right jaw, and my eye runs water like a very leaky tap.

The point of all of this is that I thought I was used to being in pain and could handle it well. I was wrong. I was used to being in this amount of this kind of pain, and when I got a different amount and a different type of pain, I couldn't cope at all.


It truly sucks. I know exactly where you are coming from - just when you think you have the coping mechanisms in place for the chronic pain and all that goes with it, the frustration, the medication, the changes to lifestyle, etc, the body likes to throw you a new curve ball so you have to go through it all again - but in an entirely different circumstance, AND manage to control the pain that you are currently used to and have a handle on dealing with.

I remember that five years ago, I had this kind of attack two or three times per week, except during menstruation, when it was several times per day.

Gods, that's horrible. I won't be trite and say I can't imagine how you feel, because in actuality, I *can* imagine how you feel.

The medication I'm on does have some irritating side effects,

Likewise. But for the amount of relief I get, even if it is only 10%, I will deal with the side effects.

The third point is that when I say that it could be worse, I really really mean it.

Yes. Agreed.

Star,
A fellow chronic pain sufferer with the lovely side effect of it having developed into a physical disability.

[jennyaxe.livejournal.com]

Thanks for your post. In one way it feels good to know that I'm not alone, but on the other hand I don't wish this upon anyone else in the world...

My endometriosis hasn't caused any disability as such. I walk with a cane, but I can walk without it, I just get tired more easily and it hurts more. It's restricted my life but it doesn't completely stop me from doing anything. (Except have children, but that's another topic...)

But the thing with pain is that even if there is no other physical problem, the pain is in itself a disability, in that it limits your ability to function in the normal world. You aren't able to carry as much, walk as much, perhaps you can't drive because of your medication, you may not be able to work with the job you love... it affects your life thoroughly regardless of what causes the pain.

Having an extra physical disability on top of that sounds like major suckage. You have my sympathies indeed!

[themerovingian.livejournal.com]

In one way it feels good to know that I'm not alone, but on the other hand I don't wish this upon anyone else in the world...

Yes, I know what you mean. Sometimes though, it's just good to chat to others in the same situation chronic pain wise. Chronic pain is so overlooked in our society - there's always that delightful response of 'you're imagining it, it can't be that bad,' when yes, it IS that bad, and NO it is not imagined.

My endometriosis hasn't caused any disability as such. I walk with a cane, but I can walk without it, I just get tired more easily and it hurts more.

I have to wear a heavy duty wrist brace on my left wrist when I go out in public for the simple fact that people do not look where they are going. I discovered this after my first operation and had some woman colide with me even though I was in plaster. She was not at all appologetic. The brace doesn't really do much, but it does provide a psychological safeguard for me.

the pain is in itself a disability, in that it limits your ability to function in the normal world.

YES! Yes, exactly!

You have my sympathies indeed!

Thank you. It's an uphill battle but I'm determined not to lose it. I do admire your strength and tenacity in dealing with your chronic pain and associated frustrations. You have dealt with all of them with a great deal of dignity and I admire that.

[jennyaxe.livejournal.com]

Chronic pain is so overlooked in our society - there's always that delightful response of 'you're imagining it, it can't be that bad,' when yes, it IS that bad, and NO it is not imagined.

Or "you don't look like you're in pain". Well, what do you expect me to look like? Should I keep crying and moaning in public in a desperate bid for sympathy? What does pain look like? Should I tattoo something on my forehead, and if so, what?

I have to wear a heavy duty wrist brace on my left wrist when I go out in public for the simple fact that people do not look where they are going. I discovered this after my first operation and had some woman colide with me even though I was in plaster.

Part of the reason I'm using a cane is to make my pain problem visible. I've a saying - "There are three reasons for having the cane. One, to support me when I'm in pain. Two, to show that I have a legitimate need of that seat on the subway. Three, if you still don't realise that I need some modicum of civility and consideration, I can beat you with it until you start behaving yourself..."

I guess the wrist brace helps a bit in the first two respects, though since your wrist hurts I wouldn't advocate beating anyone with it...

The issue of seats on the subway or on the bus is a very real one to me. I've a friend, a twenty-something man who has rheumatoid arthritis. He's more than once been given a hard time for sitting down on the seats for disabled. I try not to assume that the people sitting there are healthy just because they don't look ill - after all, I try not to look too bad, too.

It does irk me when people put their bags on those seats (or others, unless there are enough free seats). I once had the opportunity to use the wonderful phrase "Is your bag very ill, or can I have that seat?" The person who'd occupied the only two seats with his bags looked extremely silly at that. See, there's all sorts of fun and games to be had when you're carrying a cane!

On the part of having others to share with - I'm on a Swedish mailinglist for women with endometriosis. It helps tremendously. I've made many friends there and whenever one of us is having an extra bad day, there are always others around who know what it feels like and are supportive and helpful. We try to be there for eachother in physical world too, by for instance going with a woman to her doctor when she's afraid and doesn't feel she's getting the treatment and care she should have. It means a lot to many of us. You talk about my dignity - yet I know that there are dozens of women out there who have at least as much pain as I have, and who lack the support network I have in my family, my friends and my very supportive and helpful boss. I know you can't compare two persons' pain - I can't even know for certain how the endo feels in someone else's body, I just know how it feels in mine - but like I said, it could be so much worse. It has been so much worse. I really need to keep that in mind...

[themerovingian.livejournal.com]

Or "you don't look like you're in pain". Well, what do you expect me to look like? Should I keep crying and moaning in public in a desperate bid for sympathy? What does pain look like? Should I tattoo something on my forehead, and if so, what?


Yes, exactly. Or perhaps a neon sign saying "WOMAN IN PAIN, MAKE WAY," or something. *snort*

Part of the reason I'm using a cane is to make my pain problem visible. I've a saying - "There are three reasons for having the cane. One, to support me when I'm in pain. Two, to show that I have a legitimate need of that seat on the subway. Three, if you still don't realise that I need some modicum of civility and consideration, I can beat you with it until you start behaving yourself..."

Yes, exactly. It's a great nuisance to me that we who suffer chronic pain have to make it so visible. Unfortunately, I cannot whack inconsiderates with my wrist, but I do have patented the Starkiller Glare of Doom (tm) which works nicely. *G*

The issue of seats on the subway or on the bus is a very real one to me. I've a friend, a twenty-something man who has rheumatoid arthritis. He's more than once been given a hard time for sitting down on the seats for disabled. I try not to assume that the people sitting there are healthy just because they don't look ill - after all, I try not to look too bad, too

Oh, god yes! I know this one all too well as well. School kids are absolutely shocking for this sort of crap - I never thought I'd end up being one of those people ringing schools to complain but I've done so several times now. I can't hold on to the straps with my left hand, and my center of balance is crap at the best of times as well, so if its a particularly bad day and a full bus, then I get rather rude. Amusingly, the elderly and other disabled passengers tend to cheer when I yell at the school kids.

On the part of having others to share with - I'm on a Swedish mailinglist for women with endometriosis. It helps tremendously.

A support group is a wonderful thing. There's a great group here on LJ for sufferers of chronic pain of all sorts, I'll find the link for you. It's run by my friend sorchar. Here it is: malingerers.