Becoming A Real Mental Case Over Pain

[Hope4Now]

Hi Chava. I'm sorry you're feeling so desperately bad. Specialist after specialist with no answers forthcoming is wildly stressful which probably just makes your pain worse. It sounds like you're doing all the right stuff. I spent more than a year on a similar merry-go-round for my current pain issue (and was on similar ones in the past for other pain issues in past years). It's awful.

I forget whether you have tried any sort of mindful breathing or other meditation? I turned to it because I've never been on any pain meds. I find it helps take the edge off my pain if I can lie down and use a guided meditation. Even if I can't get into the meditative mode, I find that focusing on my breath and visualization really helps (breathe out pain gently, breath in warmth and healing light, etc. or whatever images work for you). I picked up some strategies from Peter Levine's book, Healing Chronic Pain. I've also become fond of a meditation teacher named Tara Brach (who is also a clinical psychologist). I got her CDs called Finding True Refuge for Christmas. She has some free guided meditations on her website. http://www.tarabrach.com/audioarchives-guided-meditations.html

All the above stuff along with psychotherapy has helped me be more patient and gentle with my pain issues...not trying so hard to escape it or fight it, but more to accept it gently. Hard to explain.

Please hold yourself gently and patiently as you move through this very frustrating process. I'm sending you kind energy.

 

[Deleted member 28740]

@Chava your post sums me up. The pain physical and mental, and a dog that keeps me giving a damn. Tomorrow is dr and lawyer. And a bunch of S**t from a 'helpful neighbor'. Pain meds stolen, worked for nothing running errands. Finally I got my back up that the help was not helpful. So hard to stand up for myself and then slaps. No need for that kind of help. She set up an appointment with a Dr. who can prescribe… she sells what she gets and thought I am so broken that I would drive her around for that? Where did my life go? No one to trust for help. Except my dog. I live for her. Not providing any help here, but appreciate all you wrote speaking for what I can not but cry and choke and vomit about.

 

[The Albatross]

At a point I had to choose what I wanted more. a life or managing the pain. I have a good bit today though likely not as much as you do. Low to moderate grade pain is familiar to me though. I have peers however who most likely do and deal with more than mine.. We are peers cuz we all made the same choice. Life, even if it means not necessarily pain relief. We don't want to escape pain. We want to live a life even if that means with a moderate degree (or more for my peers) of pain.

 

[ghotiff]

You're being your own advocate in really trying circumstances and you're doing a great job! Don't lose hope!

I have a close friend who had chronic pain and the doctors all said they could do nothing. A pushy friend rang the hospital on their behalf and had the energy to fight for them and not take no for an anwser. Surgery (that was never offered before this) all of a sudden became and option and after it was done the pain was much much better.

My point is, you are tired and advocating for yourself is hard work. If you can ask someone to help you advocate then I highly recommend it.

 

[Seagreen]

I've learned to accept pain as part of life (both physical and emotional). I think knowing this frees me up emotionally from the stress of trying to control it. I find I have more space to allow ther things to take priority in my life. That alone provides much relief.

 

[Julesnaz]

Perhaps you could look into things like acupuncture or a chiropractor. Not sure what type of pain you have. A girl I know swears by oils for everything. Couldn't hurt right.

 

[Mishap]

Chava, I just signed up to reply to you. I've been where you are, not that long ago, just a few weeks actually. I will probably be there again at some point in the future. I have had PTSD for going on 15 years now. I've had chronic back pain for 8 which requires 24/7 opioid medication. I have now had chronic migraines for the last year with an average of 25-30 migraines a month. The last six months I've been confined to a dark room and my bed because even walking to my kitchen makes my migraine worse.

I know what it's like to think those thoughts you're having. I know what it is to hurt so much that all you want to do is escape your own body that has completely betrayed you. To just want rest, peace, silence in your own head. I own a drug store's worth of medication, most of which would happily take me out. One of my regular medications nearly did a few months ago because after six months of taking it, one day I had a reaction and ended up in the back of an ambulance with nearly no blood pressure or heart rate. Then I spent two days in the hospital. I'm just too chicken to do it on my own and really, I'm too damn stubborn.

Why should I give up? I've managed this long. Sure I have a 15 page essay to fill out for the new headache clinic I finally got referred to. Really, why a 15 page book no one is going to read? Still, I'll do it because maybe they'll think of something my neurologist didn't. I'll endure another set of 30 injections in my face and head because I think it's helping a little. I fight with the horribly rude staff at my pain management doctor's office because after years of searching I finally found a man who will listen to what I say and what I need. Sadly, we're both already married. ;) I'll let him shove insanely big needles in my back, because it helps for a little while.

Does it all suck? Hell yes it sucks. It sucks majorly. Sometimes it sucks so much that it's just overwhelming. That's when you have to let it go. There is only so much you can control. Stress won't help. Worry won't change anything.

When you get to that point, vent, cry, scream, tell your friends (who cares if they listen, I bet they tell you their crap!), tell a parent, a sibling, a stranger, a bar tender (watch the drug interactions), a priest, your dog, read a book, take a bubble bath - with candles and chocolate, go for a walk or a drive, write it all down, find a support group, come here and tell people all over the world who understand.

You are NOT alone. I know it is overwhelming. I know it is incredibly hard. I know you want to just put it all down and quit, but nothing gets done if you quit. It's okay to stop and rest and ask for support and refill your reserves. It's not okay to give up.

If you have someone who can help you advocate for your healthcare, ask them to step in. It might surprise you who is willing to do that for you. There are also people you can hire as health advocates. I have no idea of the cost or your situation but it might be something to look into, even if to find a job description so you can clearly tell someone what you need from them.

One thing I've discovered in this journey, our loved ones often feel as helpless to help us, as we do ourselves. They don't know how to help, and we don't know how, or what, to tell them to help us. It's a very hard thing to do, even when you clearly need it.

I'm sorry for the wall of text, but I really felt the need to reach out to you. Two things I always try to keep in mind; "This too shall pass," and "there's always someone worse off than me." Both very true and they help me keep things in perspective. At least I've got a place to live. There are people who hurt this much who sleep on the street. The suck is all relative.

Keep your head up as best you can, and know there are people out here who really, truly get it, want you to keep fighting and are fighting the same fight right beside you.

 

[StellaBlue]

I know the last thing you probably want is another book to read...but...Darlene Cohen's "Finding a Joyful Life in the Heart of Pain" is a wonderful book about living with pain. My dealings with physical pain have been, thankfully, acute episodes - mostly associated with cancer treatment, so I can only imagine how defeating it must be to have this on a chronic basis. I am holding you in my heart.

 

[Friday]

My self worth is almost directly tied to my pain level. It's also got its fingers in a few other pies (how active I am, and how useful I am, for example) ... But, you guessed it, that loops right back to pain. Because I can't be active or useful when I'm hurting.

So the more pain I'm in, the more I hate myself. The more I hate myself, the more all my regrets and ghosts and PTSD-BS piles on with even more totally valid reasons to hate myself. The fear, the anxiety, the rage, the mopeyness. I'm just a peach! :p

I call this the Fear&Loathing.

Usually when I say I'm fat & fell outta the ugly tree hitting every branch of the way down & a terrible person... I mean it... But it doesn't affect me. It's just fact. It doesn't stop anyone from liking me. Well. It may. But I don't give a damn. In the Fear&Loathing? I'm a burden. No one's allowed to like me, much less care for me. Ball of quivvering insecurities. :roll eyes: I know it. Doesn't stop it from happening. Just keeps me from crying on people's shoulders cause it's even more obnoxious than I usually am. <grin> I'm usually fine with being obnoxious. But, again, not when I'm in pain.

I don't usually realize what a twat I'm being, and how sucky my attitude is until I've got my pain management back under control. Because the shift is so sudden. Eye of the storm sudden. Let there be light! But sometimes, like now, when it's actually been a few months of bad-management? I do actually remember in the moment. Double edged sword, that.

Heading back to go curl under half a dozen blankets and be all emotional (yuck) and over analytical for another few days

 

[Mishap]

Heading back to go curl under half a dozen blankets and be all emotional (yuck) and over analytical for another few days

At least you have a plan. It's always good to have a plan. ;)

I relate to the uselessness. It's something I've really struggled with. It was hard when I was just dealing with back pain that keeps me from doing things like walking or standing for long periods. Now with the migraines I have to rely on someone else for almost all my basic necessities. Sometimes just moving makes me incredibly nauseous. I can't handle light over a dusk/dawn level. Even with my eyes closed I can tell when my husband turns on his phone and sometimes that little bit of extra light is excruciating. I'm having to give in to the fact that right now, I can't do more than my body allows. It's a very useless and sometimes hopeless feeling. I've had 2 hours of sleep in the last day and a half. It's hard for me to sleep at night, I'm afraid of the nightmares. When I don't sleep the migraines are worse so I nap during the day. I almost never have nightmares then. It's a strange cycle of what pain and PTSD will allow. I've learned not to fight it.

I know several men with chronic pain and the stress of it seems to weigh more heavily on them than on the women I know with it. I believe it's the typical "provider" role the men fill. They were usually the main income so it's doubly hard for them to cope with. I think the uselessness is probably a more common feeling in men who have these kinds of issues than women and I think if more men were willing to say it, we'd see more action being taken to help them. I applaud your honesty.

It bothers me when people talk negatively about themselves. I'm not sure if you meant it in jest or not, but thinking and trying to be positive in a negative situation may be the only thing you have control over. Also, if you can't treat yourself well, how can you expect someone else to? I know this is part of the struggle, though.

"Fat" does not define you. "Ugly" is subjective and doesn't define you either. "Goal oriented" defines you. Even if that goal is to go to bed and get through the next few days. Look for the upside. It really helps take the focus off feeling useless if you can see the positives and what you are good at.

 

[Chava]

Thank you everyone....I've read these and appreciated every word. Thanks for encouragement, resources, and relating. I don't like if others suffer, but it does help to know that others suffer and continue on anyway and we're not alone in knowing how horrid it can feel (@Changeling @FridayJones @Mishap ...thank you so much for signing up). Pain makes me hate myself too. Somewhere through therapy I gained tolerance and some compassion, but everything feels too uncertain, my best friend moved across the country for a dream job, I can't afford my therapist for much longer, and I feel left with alone with worse pain...pressure, pinching, stabbing pain pretty much non-stop, every day, absorbs my universe with its super-presence and it feels pathetic (past month I can't even smile even if I tell myself to...not even a likable person anymore). So it has somewhere tipped back toward self-hatred. I'm trying to not feed those ideas. It's really hard to feel useless, pained, and not even friendly. Like wtf am I doing here.

I don't have anyone to help advocate with docs, but am hoping to manage the process of just finding a pain doc, getting closer diagnosis and right meds for when I want to die. If I can't get better info about my body and some kind of route towards at least tolerance, really, just kill me. I can't handle chronic powerlessness. I'm so tired and sick of feeling like I'm also chronically behind and slowly but surely disappointing everyone. Anyway, I don't ask for much help because I can't add burden on top of feeling useless. Pain is really wicked. And while i'm pretty reasonable when not in pain, forget everything I ever learned when it's bad. Thinking about death just gives me some escape or sick sense of power. Yesterday felt like someone was gripping and wringing out my spine. Today is a little better. Still drowning but the pain isn't making me want to destroy myself.

I appreciate the book and CD/podcast ideas. I have no attention for books, though I love reading and that would be a sign of semi-sanity for me...am finding audiobooks, podcasts, guided meditations to help me through sometimes when I need to just allow myself to rest and not feel so powerless about it. Sucks.

 

[Friday]

Hospitals here in the States have paid advocates... By the by... Although they're not a real well known resource; Social Workers. Most hospitals have a whole department of them, and their job is advocating for patients in various ways; from case management, to locating resources, to finding funding, etc. Most people hear social workers & think CPS (child protective services)... But that's only one small area / most social workers are in other specialities. Medical Social Work is its own.