Hate My Life, Alone, Survival Mode (always)

[Chava]

I know "always" thinking isn't helpful. But it certainly feels like I can't get out of this. I do good work in therapy, take care of myself like I'm training for a marathon (minus my e-cigs and sleeping pills), and I'm still just falling apart. And alone, and don't even trust my doctors. Nobody looked at my MRI and even mentioned possibly an issue with my neck curving backwards!!! (would actually make sense with other stuff they found, but they don't have the right specialists so find it more convenient to say none of the malformations are significant enough to cause my pain...nevermind my spinal fluid is compressed and my head doesn't even sit right on my body).

I'm overwhelmed trying to know how to handle this on my own. I feel like a jerk asking so many of questions of my doctor. But if she wants me go away she should refer me to the specialists outside of her clinic (they are being selfish). I don't know how to manage this with my insurance company. I also know I can't retire for a very long time, I'm in chronic pain, and I'll also have to quit seeing my therapist in the not-so-far future because it's unlikely my new insurance company will offer a continuance. I recognize the most disabling feature right now being my lack of joy, but I don't know how to find it. My friends want nothing to do with me, though we were never very good friends anyway, because they want to talk about t.v shows and I understand they don't want to get involved in my shit. But this is how it goes.

It triggers lots of old shit too, but even then I had some faith in doctors and nurses to help. It feels incredibly isolating right now, suffocating, trapped, and I don't want to live like this for long. I'll just drag others down and in spite of continuous efforts I am sort drowning. I'd like to work on relationships but I always get hit with this survival shit where I can't freak out new people with my problems, and I know others already somewhat in m life can't really help me anyway or are sick of me. It's always felt like this...struggling by myself to survive through terrible body symptoms and pain. Nobody to even say they are "here" even if they don't know how to help. I'm just trapped. I have to find a doctor I have confidence in or I'm going to sabbatoge myself quietly and quickly. I want to like my life. I exercise, meditate, eat well, go to gentle yoga group, help others when I can, have a job I like, everything that I thought would matter. But I hurt all the time lately and am afraid to even ask for help because my primary doctor doesn't even understand it and I'm just sick of the triggers of asking for help anyway. I just have to make the pain go away without becoming a total drug addict.

 

[sun seeker]

Hi @Chava, I'm really sorry. I know it isn't the same, but we are "here" even if we don't know how to help, so keep talking to us. It's so sad that there are so few people who know how to stay with their friends through their pain. They do exist though. It really isn't your fault that your friends don't know how to be there for you or that you haven't found a doctor who knows how to help. You've tried everything you can think of, I've seen that since I've been on the forum.

About your neck, I know you've tried different things but I'm not sure what they all are. Have you seen an osteopath yet? Sometimes they can do amazing things to alleviate pain from structural malformations. I know money is tight but it might not take many visits. Just one more idea.

 

[darrenS]

i truly in many ways understand how you feel, i injured my back when i was younger and then went into heavy laboring for three years and further hard work else where , throughout this time i was put on painkillers on average every 6 mths , i was 16-20 at this time. I was always in some form of pain and actually thought it was normal, of course i also used every drug and thought anxiety was an active mind. I got older and of course once they found mri's they found many problems. I also learnt about the wonderful world of pain management. I have now been subjected to pain management medicine for over 12 yrs. I have had periods of disability (12mths the longest) with regular full months lost due to the inability to walk or stand properly. I still live on painkillers , but have learnt many things and have been through many moves and subsequently many doctors . I have had all those lovely injections, steriods , facet joints shots etc etc etc , none worked , costs a fortune, and financed many a drs golf game. Every time i have moved state , i have had to find a new set of docs , and even when i have settled it became a quest to find the "right doc" . When i settled here 2 yrs ago, i made a list and i rang the docs, found out their beliefs etc, i went to forums , searched all responses. I went through three pain docs, until i found the best one . I have learnt with experience this is the number one priority in getting things right - you must treat your pain and you should also venture a bit if possible. I know that insurance can be a bummer , but use any tool you can or alternatively , relax , sit down with your doc and talk to them, dont let them off the hook until your questions are answered. I have had great docs that reffered me to other specialists , if i did not like this referral the doc knew me well enough to know why and find alternatives. You must be able to speak or its simple..you will suffer..pain is not a joke and living with it is no picnic..but it can be managed , but it truly relies on your voice alone to direct it in the way it should be treated

 

[Chava]

You must be able to speak or its simple..you will suffer..pain is not a joke and living with it is no picnic..but it can be managed , but it truly relies on your voice alone to direct it in the way it should be treated

that's the confusing, hard, scary part!! Feeling like I am organized, have questions, am shut out or invalidated and somehow willing to do it all again...like I know more about my condition than these non specialists do, but I have to sort of bow down to them and yet ask all of these questions and expect better answers than "we don't really know what is causing your pain, it is complex" when they've seen my deformed neck, my brain malformation, and cysts in my spinal column. If I get that answer I'll ask for another test...test that cranio-cervical joint! Do an MRI while I'm sitting down..I bet it would be a mess!!

Thanks @sun seeker "here" for you too. It does help to have people I can talk to....and writing is actually easier than talking. Helps a little when I feel trapped in this alone-and-barely-surviving place...

 

[darrenS]

They will never admit to it being a mess, they just wont do it, they don't think that way. What you can do is get them to accept that your in pain and its crippling, its affecting every facet of your life and yes your inability to experience joy, simply because your probably chronically fatigued from trying to manage the pain, and fighting the system to acknowledge it. Get a new Doctor and sometimes go to an older specialist, someone in their 60s that has been around long enough to be able to see the reality - I have had some remarkable docs , but it took some work , it took me getting every record, xray, mri and so forth and letting the relationship build - all pain docs are very suspicious or request for pain management will initially ring alarm bells - i can only take pain meds , so it takes about 1 in every 20 docs to find one that understands and allows the relationship to build - there is no other way - find a good doc or write down what you feel and the points youd like to make and hand it to your doc. They are also very open to this and it will get your case across just as well - There are sitting mris - i had one about 10 mths ago as i couldnt lie down long enough - you sit and watch movies and it scans around you

 

[Chava]

A sitting MRI would make perfect sense. For the past month I need to lay down for about every hour that I have to be upright. I never smile. I want to die...I've said that before but really suffer, need to try to get help from others, and also turn into a non-friendly person that can't even help anyone else. I did send stuff to a better clinic, hoping someone can help. If not, f*ck it.

 

[darrenS]

dont give up Chava - i know its incredibly frsutrating and can become demeaning....dont let it ...seriously if you dont get it treated properly it in itself will become a major trigger - i have been through the whole...lm gonna be living like this fr the rest of my life thingy..it gets better ..it really does ...allow yourself the time and space to let your body heal as much as it can - and you find a myriad of ways to deal with it...i awoke this morning in severe pain and even after 2 10mg Hydrocodone it did not subside..i couldnt breath or move my arms properly - i had a choice , there was no way i could work , and yet i didnt want to stay home and fall into the depths of what severe pain does so i went to work and as always just keeping yourself busy sometimes helps ...yes even when in severe pain - the other thing is to relax as much as you can if you dont have pain relief and let the endorphins kick in ...its a whole different experience and a great skill to learn...but please dont give up and if you need to vent and yell...pm me - i really do understand what a horrid feeling it is and i dont want to see you suffer

 

[Chava]

thanks @darrenS ...confusing triggers might be worse than the physical pain right now, I can't even tell...I just can't talk

 

[Chava]

p.s. I tried to talk to one person for a tiny bit today and maybe because people try to be helpful they just say things like I'm too worried and it will be fine...and it's so invalidating and worse because not only does that NOT change my pain or the messed up situation in my back and neck, it makes me feel like I'm wrong for caring or my sensations are wrong. I know people don't always know how to help (especially in my family). I want to just destroy myself because it's like all I can do to NOT feel worse is continue to totally isolate myself. What is the point.

I have the sensation like I can't talk, I try to share my fears in a subdued or right way, and it still doesn't feel okay at all. So again I feel like I am mute and I also want to die because I can't tolerate it all my own any more...makes me feel stupid for continuing on, like I'm willing to feel so powerless. I don't want to feel powerless. I'd rather just not be here. Sorry, everything I say sucks, but I can't even tell anyone about my physical pain. Nobody wants to hear it. I'm tired of only trying to make people laugh or feel good about themselves in order to try to have some relationship...giving them only what they want. As soon as I need help I'm reminded I'm not exactly worth it or nobody knows how to help me and it's all a crap shoot. I just want to feel like I have some power or control. My angry self can write a little bit. But until I figure out how I can or will feel any sort of power over the physical pain and isolated feelings, back to semi-dissociation and mutism.

 

[joeylittle]

Hitting "like" not because I like what you are going through, but am really familiar with a lot you are expressing. Thinking of you.

 

[Chava]

Meltdown. Needing the big medical institutions to respond to my fears and needs RIGHT NOW because I'm stuck in feeling like I don't trust them, or anyone.

I'm able to see that from a little more realistic perspective this morning. I took muscle relaxants last night (instead of knock-out sedatives), brought down some of the pain, slept well (they physically work on reducing the spasms, unlike painkillers or sedatives, so they are my more responsible option... I just don't love how sluggish they make me feel initially). I'd like to get off these meds or know I'm not doing things in my life to further some early degeneration. But I can't have it all figured out RIGHT THIS SECOND, damn-it. :poop: But when I don't feel so physically shitty, I also don't feel so overwhelmed by not knowing who can help (or fear that I'll try to ask for help and feel worse for it or invisible). It spirals so badly. I know it must be connected to early medical stuff and non-safe attachments...but the knowledge doesn't help much when things are overwhelming. But on some level I know I just have to get to the next day.

 

[darrenS]

depending on your pain meds...you have to be careful with muscle relaxants as they are similar to benzos and if your taking opiates ...be very careful. I have them too , but use them sparingly as continual use can cause emotional problems/reactions . Hang in there Chava , i know its not easy and at times its incredibly draining, and soul wrenching - and yes at times it is a day by day thing...but keep moving forward