Just another day, there's murder in the air

[nilchance]

You know what sucks about chronic pain? That it's chronic.

I could deal with one round of ass-kicking pain such as happened on Friday, where all I could do was curl in the fetal position and cry until the drugs kicked in, if that was the end of it. I can breathe through that kind of pain, even if it's a 9 of 10 on the classic pain scale. It's the repetition that gets to me. Friday had pain, Saturday had a migraine and a fever, Sunday had a mid-level malaise and ouchiness, Monday was fine but I was hurting by about 5 and had to go to bed. That grinding unstopping pain, knowing that I'll wake up hurting and go to bed hurting and probably hurt in between, is just... it's brutal. It makes me live in twitchy anticipation, because I've been told both "don't chase your pain! medicate at the first sign!" and "don't overmedicate, you'll get rebound headaches!" by the same doctor.

I can't concentrate right now. Even when I'm not hurting enough to distract me, I'm probably reeling from the side effects of the pills that keep me going.

Which is my tl;dr way of saying that I've quit werewolf_bb. *koff* I've got about 5.5k that I'm going to round the edges off of and post serially, which is the way I roll.

One nice thing is that I have awesome friends, and I have a wife who will tuck me in with a heating pad and tell me I'm not allowed to drown myself in the toilet. She retrieves cats for me to cuddle, and she is writing my action scenes. You know that's true love.

Comments

[nephir]

People who have never lived with chronic pain have no idea of what it is like.

Sounds like you have a wondrous spouse and dropping out of a bb that is stressing you out should help with some of the pain issues.

Hugs!

[marvinetta]

This. So much this.

[wolfshark]

That sucks, hardcore. *hugs*

[embroiderama]

*hugs* That's overwhelmingly sucky.

[apetslife.livejournal.com]

God, I know. I know. There's nothing more crushing than knowing that it's NOT GOING TO STOP. It's sometimes the hardest thing, more than the pain itself or all the associated awfulness.

I have to choose between pain (the chronic knee thing) or other pain (if I take the one pain med that stops the knee pain, I get horrible GI reactions). It's like the Catch-22 from hell.

I'm so sorry you're feeling bad. And so glad that you have your wonderful wife and cuddly kitties. And I hope you feel much better very soon. *HUGS*

[jane-eyre.livejournal.com]

That's exactly what I keep saying, I can live with the horrible pain, but it's the endless cycle that drags me down.

I'm glad that you have people around to help you though.

seven year ache

[auroramama]

Yes, that's the worst thing. It doesn't have to be kidney-stone level pain if it's all the time. It gets between you and everything in your life. There's nothing like looking at blazing autumn leaves (or cherry blossoms) and remembering that this used to bring you joy, back when joy didn't have such a long, hard road to travel to you.

I hope you're soon back to chronic painlessness and full-strength joy.

[realpestilence.livejournal.com]

I know exactly what you mean, and have had the same thoughts-mine's a different situation, but still ~pain. Enduring wave after wave, with no end in sight, is spirit-quenching.

[katzb101.livejournal.com]

*hugs gently, sends good thoughts and positive energy* Look after yourself.

[elizaria.livejournal.com]

<3

Hugs & happy you got people around you to help. Hope things easen up for you with a good day :)

[beanside.livejournal.com]

Now, if your wife could lose her chronic pain, she wouldn't want to beat people with a shoe so often.

[atypia.livejournal.com]

This made me cry.

<3 x billions

ETA - I appreciate your honesty about this. It can be hard having no-one to talk about this stuff with in person who understands what it's like because they live it. Reading your words and feeling that pang of, "I'm not alone" is very......difficult/comforting in some way.

Which sounds fucked up, because it's not like I read this and was happy. But just.....you know. You get it.

Anyway, <3. Yay for lovely wife and lovely friends to help you battle through.

[atypia.livejournal.com]

It's like the Catch-22 from hell

And then you have the doctors who will tell you to take medication to cope with the side-effects from taking the other medication, and it feels like this endless spiral of pills.

[eviljy.livejournal.com]

I'm so glad you've your wife and friends. I think I'd have gone mad a long time ago without my mother around (I can't live on my own anymore) and the emails and calls from my friends.

Until recently I was at the same point with chronic pain for so long that you don't know anymore what it feels like not to be in pain and that damn question of what do you do when you reach the point where you simply can't stand the pain anymore.

I know it's most likely not of any help to you but I want to spread the word on this in the hopes that it keeps even one person from having to endure chronic pain for 15 years when they don't have to. It was no doctor who pointed me in the right direction but instead pure coincidence that my father talked to someone who knew someone else with similar pain to mine and remembered that she's better now. My dear doctors told me not to expect to get a diagnosis after 15 yrs. (I got the same contradictory talk about pain meds as well and one special case of a doctor who was sure the meds were the cause for my pain even though that the pain was there long before I started to take anything.)

The cause for my headaches (a term that sounds so damn tame in comparison, I hate it) seems to be a vascular loop around my Trigeminal nerve. I'm getting brain surgery on the 19th to correct this. So far a lot points to this really being the cause but one can't be sure until after the surgery. But I switched meds this weekend to epileptic medication to Gabapentin which works on nerve based pain.

This (http://www.nvchome.com/index.htm) is a website that explains different consequences of the neurovascular compressionssyndromes that they know about and the surgery for it. Even though I'm living in Germany I doubt that the situation of most doctors not being able to see this on MRIs is much different in the USA.

I wish for you the fact that even after 15+ years there's still a chance of finding something, anything to make it better gives you some hope and strength.

*hugs*

[darling-lisa.livejournal.com]

*hugs gently*

Totally understandable about the big bang, and yay for posting what you have. The most important part however is to take care of you.

[hederahelix.livejournal.com]

1. {{{hugs}}}

2. I wish I could give you some spoons.

3. I know it's unlikely that you can stand to be in front of a computer screen much, but I bet beanside would read you the crack comment fic astolat is writing in which Kris signs up for the intergalactic military to protect Conway only to find that the military isn't all he was promised, and then ends up in charge of a landing party, where, well, he meets Adam.

It's not spoons, but it's maybe kind of distracting. And if it won't help now, maybe knowing it's waiting for you when it does will be something to look forward to.

4. Did I mention the {{{hugs}}}?

[niccy07.livejournal.com]

Oh babe, I'm really sorry! I'm happy there are people with you. They help immensely where the meds won't. *hugs fiercely* I hope you feel better soon!

[nilchance.livejournal.com]

It does suck. I'm learning painfully (ha) about why the MS symptoms made my mom crabby as hell.

*hugs back*

[nilchance.livejournal.com]

It is. But I am v. pleased by your icon.

*smoosh*

[nilchance.livejournal.com]

I'm sorry you're going through that, too. *hugs* I hope you get some peace soon.

[nilchance.livejournal.com]

Honestly, if my docs offered me a pill to knock out this nausea or make food even vaguely interesting again, I'd be ALL OVER that. But yeah, I'm afraid of the pill spiral, too. Especially with no insurance.

*hugs*

[nilchance.livejournal.com]

I'm tremendously lucky in love and in friendship.

*hugs* I'm sorry you're struggling.

Re: seven year ache

[nilchance.livejournal.com]

That's a beautiful way of putting it. Thank you.

And thank you for the kind fb! I will get back to you on each of those, specifically, but I wanted to say thank you because it really brightened yesterday for me.

[nilchance.livejournal.com]

Yes, exactly. I mean, I had depression before, but it's gotten worse along with the pain. *facepalm* And then stupid people are like "oh, but it must be psychological!" and I'm like "let me break your big toe every few months for a few years and see how YOU do on these psych tests, buddy."

Um. Long story short, I'm sorry you're dealing with this, too. And you're in my thoughts.

Aaand, I'm reading Zero at the Bone, and it's brightening my days. Thank you.

[nilchance.livejournal.com]

*pet, pet* Thank you, honey. Right back at you.

[nilchance.livejournal.com]

Thank you very much. *smoosh*

[nilchance.livejournal.com]

Where are you going to lose it? Is this a Jimmy Hoffa situation?

(Are you standing in a hole?)

I love you, bb.

[katzb101.livejournal.com]

*purrs* Thank you!

[nilchance.livejournal.com]

Aww, honey. *hugs* I understand what you mean; so few people get how it grinds you down over time. It means a lot to me that this may have helped even a little.

[nilchance.livejournal.com]

Iiiiinteresting. I hadn't heard of that! Thank you for the heads-up and I'm so glad that it's helping you. I'll keep you in my thoughts on the 19th. *hugs*

[tobemeagain.livejournal.com]

Is it weird that I find your posts like this inspiring. Part of it is that OMG someone understands, the rest is that you are spot on in descriptions. I mean I don't even have the same disabilities/health issues that you do, but that feeling is so true.

I've had an optical migraine since Jan 2008. The pressure on that nerve is bloody well constant. I was on 4 different pain meds in rotation - but yes the bounceback headache was a bitch. I've managed to cut down. It is not pleasant to always be expecting to be flattened by pain.

I'm hoping and praying that soon you'll be able to have more pain free days. Not days of anticipation, but actual no pain. (Also *crosses fingers* good luck on getting insurance soon.)

You're right your wife is amazing *hugs you both*

[eviljy.livejournal.com]

Gawd, I keep writing/saying the 19th but that's actually only the day I'm arriving at the hospital (this doctor is one that seems to know his patients and wants me there on a Sunday so I have enough time to de-stress from the 6hr drive before they start on me). The surgery is going to be mid-week and exact date hasn't been set yet because he wants to take his time and go slow to keep the stress level as low as possible for me (and the nerve!).

I don't know all your health problems in detail but if you've the feeling that this could be at least partly cause for your pain or other negative effects I could ask my doctor/surgeon for references of doctors in the US for you? Because from all I know he's pretty much the expert on this internationally and he made the "diagnosis" (as in "yup, I see it *right* there") from the same MRIs that all my other doctors said everything was perfectly fine...

Seriously, any thing I could do to help you I will try. We have to stick together and share information (good and bad) because if we hope on the doctors alone we're pretty much screwed. I only got this thanks to someone else talking about their experiences after all.

Thank you. *hugs* I wish you many good days with as few bad days as possible and only very small toilets around. ;)