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I can't do this anymore

Dec 19, 2015 9:03 AM

I can't get medication that works to even ease the symtoms because my consultant won't suggest new ones with out a song and a dance and my harassing him my symptoms are geting worse and the doctors don't care I have a gp a consultant a physio and phycologist and know body cares or try's to do anything helpful. I'm 22 and for the last week I have tried to sleep mostly failed sat in my sofa watching tv not taken any of it in and then gone back to bed and that has been my life because I can't cope with the pain created from doing more. All my friends are out partying or starting family's or geting jobs to start careers I can't see a way of doing that I don't haven't found a single person with my issues who has managed even one of these things after the onset because people's disks don't degenerate this early and seams that people who get this have started there lives and got the family's and then it starts so they just have to keep going keep doing what there doing. I have to build everything in my life from scratch while in pain with apparently no help and I don't want to be this person it's just not going to work for me so I've decided eather my doctors pull there fingers out and get in my corner or I jump ship this is not a life and is definitely not a life I want to live so that's it I'm done one more year and if it's no better im out

Dec 19, 2015 10:12 AM

Jelly..thank you for trusting us with this. Let me say that I understand it is hard and I know the feeling of wanting bto wuiy everyday.
I have the pain of lossing my dream job and the life I knew and loved. As of now I can't give u the answers to hiwnto get these things done like family jobs ect. But I'll give you the advice my boyfriend have me. This illness us horrible. But it outs us in a great position to find a new way of living. Learning a new skill ect. We r all good at something and if we have had to stop doing one thing that means we have something else we are good at we just have find it. I'll admit when he fisrt told me this I thought he was an idiot.. Ha.I actually thought he was mocking me
But after s few times if hearing this I began to really think . sadly with the pain we are in at times. It causes us to have to lay down we have plenty of time to think . I encourage you to start a journal if I have nkt already. And write down thinks u like and thinks ubfeel you would like to do. Maybe start a business and then hire people to do the things u can't. My uncle has fibromayalgia Nd he did that.he is a contractor and the heavy lifting and getting under things he hires young men to do it.
I've not found my thing yet but I feel im close.
Until the. The most important bthing to do is let your body heal. Figure out what your new normal is so when the time comes for you to do your thing you'll be ready.

Dec 19, 2015 10:26 AM

I'm good at math so I've study's to be an engineer but I can do the job because of site work and geting to an office every day. I thought teaching but I can't have the energy to do a whole day let alone all the extra In good at making things but my hands seaze up really quick so I can't do that and I don't have the know how or energy to start a business of any kind as my family started one I actually know what it takes to do and it's more than I have I use to dance competitively as a hobby I can't do that any more I can't make things as a hobby my hand seize so I have no hobbies left and yes I have looked at tried a lot of things I can't lift a 2 litre bottle of pop that's 5 lb the average baby is 7 lb and everyone in my family is born big so I can't have kids because I wouldn't be able to lift them my sister in law doesn't trust me to hold my nephew have jack be like that with me about our kids would kill me my family stress me out because they just don't get it and don't get y I'm not better yet and friends get it even less I often don't hear from them for months and when I do I often have to say no to plan because I can't do that I have thought of everything I want to do and everyway around it and there are no options left the only way I can have a life now is if things go better health wise and I don't have the support for that to happen so I don't see what I can do I have spent two years exploring and googling and trying and I've had enough of doors in my face so I will do one more year and that's it that's will take me up to five years of pain and trying and if I don't feel hopefull or like I have options that I would like I know what I'm doing this is as low and as small as I will make my self I refuse to go lower for any longer

Dec 19, 2015 10:35 AM

I see where u are. Right now things look dark. I have to admit I'm in a dark place too. And I.struggle daily with depression. Even though I just now got strong enough to admit it. All I can. Say right now is just give it time honey. It's harder when your family don't get it. They do more harm to you then the actual illness. Keep trying with your family. I'm blessed I've got my uncles to help buffer for me. But my mom is a hard sell even though I've got a diagnosis she still says she forgets and just plan don't get it. Asking me to do stuff I should not. I've tried giving her the spoon theory info and she just won't take it in. But she is slowly coming around. I encourage you to nkt give up. It is hard and I'm so sorry you have to deal with this but you have all the support u need right here. We are here. Feel free to message me here if u have an android or start a. Topic to get my attention. But everyone here is selling and ready to help you through this. I know many people here who work. They have to make adjustments but its possible. It will be OK.

Dec 19, 2015 10:45 AM

It took me a year and half to get seen by a specialist it took a further 6 months to get referred for scans it took another 6 months to get sent to a pain management team and then have discharged me in under 3 months I have been waiting since April to see my consultant I will not be the person on theses sites who has been struggling for decades and still geting knows where I'm drawing a line a logical simple line nothing you can say will change that discision icenthought on this a lot as you said we have a lot of time to think I've thought this through fully and I am prepared to make some compromises but this is not ok anymore .... All I want is to feel herd and like some ones in my corner and some one other than me is trying that's all I want it's not much and if I can't get that y should i bother

Dec 19, 2015 11:23 AM

Oh god jellyfish, I am right there with you. I know I'm going to get flack for this but I feel the same way. Why is it so hard to get ppl, especially doctors, to listen?? Just listen! It's like everything I say goes in one ear and out the other. They hear what they want to hear. They don't care. There is no compassion anymore. I have been struggling with pain for 35 yrs. It's been hell. It overshadows everything else in my life. I don't know what it means to be happy anymore. I have no hope. And honestly, talking to my doctors just confirms that I shouldn't have hope. I wish I could tell you differently. Maybe if enough of us start killing ourselves, someone will finally listen.

Dec 19, 2015 11:27 AM

For the record though, I don't advocate suicide. I just feel like it's terribly unfair to just let us suffer for years. It's not right. I hope...there I go, using that word...that you, Jellyfish, are able to find another way, and in a year you'll feel differently, but I completely understand where you are right now. Are you seeing a therapist or anything? Just wondering....

Dec 19, 2015 11:43 AM

I to tel my doctor n Wednesday my plan and I was being counceled and I don't want to die I just want to fee herd and have hope and they have taken that from me so u am going to let them know this and see if they move and if they don't wel I know it's not worth it

Dec 19, 2015 11:46 AM

Amie.. Like yourself and jellyfish.. I could not tell u what it means to be happy. Perfect example I got a huge blessing from my uncle. He gave me a check to pay 6months of my insurance plus extra pocket money. Niw the old me would have been jumping and crying and just over the top. But the me now could only muster enough strength for a thank you and I forced myself vto get up and huge him. Which hurt so bad to give that hug. Then we went to the other room and he gave me more pocket money. Now this uncle also has fibromayalgia so he understands which is why he helped because he could see the stress and the pain..but I felt horrible that I could not show any emotion. Primatlu because my pain increases with any emotional flux. Happy or sad. So this thing had stolen so much from us. I hate it.

Dec 19, 2015 11:49 AM

Jellyfish I know its a tiring process but I had doctor's like that. A nd I had to cycle through a few of them even going to an out of state doctor to get the help I needed. If they not listening then you fire them. Find another doctor. Keep looking because YOU MY DEAR ARE! WORTH IT!! Don't stop looking you will get there. It took me just under a year to find the right people. But I did and so will you.

Dec 19, 2015 11:50 AM

Jellyfish, first of all you are not alone. Secondly, in the depths of my struggle with my conditions, I must admit I have contemplated suicide. But the more I thought about it, the more I realize it's not the answer. Yes, my condition won't get any better and I realize that. Hell, it's only gotten worse this year then it has ever been. Yes, I'm tired of being in pain from constant fucking skin infections and back pain to the point that I can't even get out of bed. But you know, from the support of this community, finally I have a shoulder to cry on. Yes, I have family but they truly don't get it at all. They don't understand what it's like to not have your body cooperate with you even for 5 minutes.
And truly, I understand when you said it's difficult to get your docs to listen to you. I'm going through that same issue myself, between my surgeon and the infectious disease doctor. For months, I have been begging them to communicate. I hate being made the go between already. It's just NOT fair for me.
You are definetly worth it, even though you don't feel like you are being heard. We hear you!!!

Dec 19, 2015 11:53 AM

This is y in drawing a line it's stole my life as it is its stole my hubby's my dreams and the majority of my future so I'm seting my sElf a line a set of rules and a deadline and Yh I don't want to die because that stops things maybe geting better but I don't want to live in pain if this is it and it's only going to get worse and that's the choice I've debated for a year so far and I think giving my self a year to decide and a year to improve for it to get better is logical and reasonable I would never just jump in to this I would always wait and set a deadline and goals but this time I'm not so sure even one of the goals will be met so I've given my self a year because then I will have been suffering for 5 years and well if there's no hope then I think that's enough

Dec 19, 2015 11:57 AM

This is not a snap decision this is not depression talking this is me making a logical well thought out choice I don't want to die but I don't want to live in endless pain

Dec 19, 2015 12:08 PM

Jellyfish, I am so very disheartened that you are suffering at such a young age. I can understand what you are saying because I have been there. Unfortunately, you, like myself, started to deteriorate at a young age. I was in pain in high school and after but really didn't think much of it. Not too long afterwards, I started having massive problems and my joints began to fail and the pain worsened. I was diagnosed with degenerative joint disease and sent to pain management. I have had physio, psych, biofeedback, ultrasound, massage, physical therapy, anti inflammatory meds, nerve meds, etc.. As time went by I was further diagnosed with degenerative disc disease, long thoracic nerve palsy, scoliosis, cervical spondalytic myelopathy, bilateral valgus deformities of the knees, a problem with the MTHFR gene that causes problems with vitamins being absorbed and a laundry list of other things. I had new cars, horses, spent my nights having fun with friends, etc. then, everyone disappeared. My horse died, I got sicker, "friends" said, you'll feel better if you just ignore it and go out.. Have a beer, get off the shit the doctor gave you, etc. I had to stop working at 34 and I am now 50. It's not an easy life Sweetie, but it is a life. Believe me, I and many others here have probably wanted to jump ship at some point. It's natural, you feel alone, you start feeling like your pain is your life and there isn't anything else. There is. I promise you, there is. Unfortunately, you have to get to the place that you can mourne the life you wanted and lost and embrace what you have now. I know, you probably think I'm nuts.. But I'm not saying embrace pain, I'm saying embrace life. You can have joy, do things you love and have whatever it is you want in life. You have to learn what your limitations are and go from there. Keep a journal of what your triggers are and what helps you feel better (if anything). And go from there. Know that this is a very safe forum to come and vent and ask for prayers or cry or ask for a hand to hold. Believe me, I wish I had more hands.. But mine's here, take it. If you're at the end of your rope, hang onto mine. This wonderful pain family is here to stand beside our members through the worst and best of times. You will never be judged and you'll never be alone. Remember something, your life is precious... All life is precious. We don't know why we were dealt the hand we were but here it is. Like I said, it's not easy but there is a lot of comfort here, understanding, compassion and love. Please, reconsider your way of thinking. We can help you through. In sure there are people who would be devastated if you were no longer here. So, I have two shoulders to cry on, a hand to hold, arms to hug you and a heart to pray with and for you. I am sending you positive vibes, love, gentle {{Hugs}} and prayers to give you the strength to see that there is a light at the end of the tunnel. I wish you peace in your heart and soul and know that I am just a keystroke away. You let me know, if you want to get in touch, my email is Ladygirl94@aol.com I will be here when you need meπŸŒ»πŸ™πŸ»

Dec 19, 2015 12:13 PM

Jellyfish, the one thing I forgot to mention is that I have been in pain for 22 years and have had 29 surgeries in that time. I have a good team of doctors now and the meds I get are enough to help me function. (Not be pain free but function just the same). Five years is a long time to be in pain. None of us know what the future will bring. They could have some medicine or some gadget that helps make it better. In a year from now, you may feel differently than you do now, even if you're still in pain. πŸ’•

Dec 19, 2015 3:57 PM

Ok so i didn't read every single comment here. ..but what I got out of it is that enough is enough!! There are so many people struggling with pain disorders that there are doctors out there that will listen. I went five years before being diagnosed the first time and almost 10 years and the scare of cancer beforw getting the second diagnosis. Then as for treatment I am still waiting for the right one that fully helps me.


I suggest getting educated, if your not already. I started Googleing everything!! I mean everything! I took all my research to the doctors and made them look at what I had found ... after speaking up, the doctors finally listened and now I have a great team of doctors that help me everyday! Dont give up never give up!!! You got this ...we all got this...

Dec 19, 2015 4:10 PM

I've done that they call me a drug seeker and remind me I don't have a medical degree and then refuse treatments so no if I want to give up I will it's my life my choice

Dec 19, 2015 4:48 PM

Jellyfish, you're absolutely right.. It IS your life and when the time you've set comes and you decide you're checking out, the that is your decision. I sure don't know anybody who WANTS to live in this condition and perhaps you're feeling ganged up on. After reading all of your posts, I can hear the frustration in your voice and manyy other emotions. I wish I could calm those feelibgs. Perhaps

Dec 19, 2015 4:52 PM

Oops damned Send button.. I always hit it too fazc

Dec 19, 2015 6:08 PM

Jellyfish.. The one thing inhooenyou get out of all our responses. Is that we ARE HERE FROM YOU ..not yelling just driving the point home. We all think about killing ourselves. I've even gone as far as having a stash ready. But I thank GOD I found this group. And GOD has truly kept me. Because my life stresses has not lightened up if anything they have gotten worse. And so has my pain. But honey I'm here to tell you that one day it will get better. It will..

Dec 19, 2015 6:38 PM

Newfibrogirl is right ! Things will get better. I'm not telling you what to do. Just simply giving suggestions. Trying to help. If you didn't want advice or seek attention then you wouldn't of asked. We all care. Or we wouldn't be in the group. I understand your feelings.

Dec 19, 2015 9:53 PM

hey, I'm so sorry you're going through this terrible time. I know the feelings regarding ppl our age going out and doing things (I'm 22 too). it's rly hard and I've been struggling greatly with depression and anxiety because of my feelings of hopelessness and pain. but something I've been trying to remind myself of is that pain is temporary. for a while I was harming myself to create tangible/visible pain so others would understand, but I've reached a point where hurting myself more than I already do isn't worth it. it's so hard to find love for yourself, but I've been trying so hard to focus on that and the good things around me. like, even though my jaw hurts like hell, at least the rain outside sounds beautiful or at least my eyes don't hurt right now. I hope any of this is helping or reassuring you that you aren't alone and the struggle is so very real. ppl don't understand silent or invisible struggles, and it hurts even more when we aren't validated. please know we are listening and care

Dec 19, 2015 10:19 PM

i was told at 34 believe had it my whole life i explain if u like me too

Dec 20, 2015 1:32 AM

This isn't a cry for attention this is a declaration to my self that I am worth more than this life of pain unless you can tell me your life story about how it was bad and the pains got better so you can live and your situation is anything like mine your not helping convince me your just priceing you don't get it

Dec 20, 2015 9:44 AM

Jellyfish, can you tell me if you have discussed this with your hubby and how he feels about your decision? (I'm just wondering what his input is/was).πŸŒ»πŸ™πŸ»

Dec 20, 2015 10:14 AM

I don't have a husband I have a boyfriend that claims he wants to be my husband but makes no steps towards that because let's be honest why would you marry some one who needs help to shower already? Atm it's cute and a little sexy sharing a bath shaving my legs but what happens to his feeling for me when he has to wipe my arse or clean my piss ... We have talked about future plans like kids but he just doesn't seam that in to it and I don't blame him I know I can talk to him about this and he will respect my reasons because he's living this too but since we are on day 2 of 500 it's a bit premature to bring it up in detail if we get to day 400 maybe I will but by that point if I still feel the same he will have noticed and will understand

Dec 20, 2015 11:39 AM

Jellyfish, thank you for responding. I really am sorry for what you are going through. I understand your thought process about your boyfriend. I appreciate that you took the time to give me an answer. I hope that during these days, you will join us if you need someone to chat with and need someone who understands to lean on. I just want you to know that I'm here for you if you want and so are many others. I hope the you are having a peaceful and less painful Sunday. {{{Hugs}}}πŸ’•

Dec 21, 2015 3:37 PM

Jellyfish, it's hard for me at 54 to look forward at the rest of my life from my chronic pain viewpoint. I won't even pretend to know what you, and others your age or younger must feel. I've lived most of my life pretty well despite medical problems that began in my late 20's. It's only been the last 6-8 years that I began to struggle, and then the bottom dropped out in 2010. Having raised our kids my hubby and I planned on taking trips to every state and doing new things and seeing new places, making new friends. Yet here I am living life more like a 70-80 year old with limited mobility. The saying goes, "it's funny how things change in an instant.". But it's not funny to me, or you, or any one of us in this community family.

We've all questioned ourselves, " Is life worth living? What good am I to anyone? " And no one can answer those questions but reach of us for ourselves. We have to figure out why life is worth living, who is worth living for, and what we have to offer this world despite our limitations.

I sat with my 85 year old father yesterday and he asked, "If the docs can't do anything for me, and all I have to look forward to is days like this, should I fight to keep living, or should I just give up and let it come to an end?". My father was very healthy until 2007, when his cancer showed up in his liver again. They did a double dose of radiation treatment and he's been going downhill like me ever since. He now has Alzheimer's. I looked at him for several minutes, and then I told him that at 54 I never expected my health to tumble so fast and furious that I could barely hold on. I told him my life was no where close to what I thought it should be, and it had taken me 4+ years to come to terms with it. Even though I can't work out travel or hang out like I use to, I can still find joy in living, by searching and listening and seeing "joy " in others & in nature around me. I told him that on days that are my new good days I do everything I can to enjoy that day. And on my bad days I take it easy and rest. Life will never be perfect or painless, but I am willing to make the best out of whatever I can get. And each of us has to decide for themself what our limited are and what we are willing to suffer through. I like to think that my children & grandchildren learn to be compassionate for those like us. And if they one day find the same road to walk they will trust in God to give them the strength to do so. As one very popular song out there days... "What doesn't kilo us makes us stronger!".

Take it one step, one hour, one day at a time. And if your doctors aren't helping them fire them and find new ones, until you have formed a good team for yourself. There is no magic pill to make it go away for any of us. Accepting that our pain is part of our life is the doorway to beginning to function through and around the pain. Sometimes we will have good days and sometimes those good days will cost us a bad week or two. We messed to ask ourselves, what is worth the pain? Many gentle (((hugs))) & I'm praying your doctors will be able to find a program of care to help you have much less pain & begin to enjoy life again. I do suggest finding a psychologist who can help you process and work through the pain. I just started seeing one in November, and after first assignment she told me I had unrealistic goals. It was an eye opener. You can do this! And on days you need help, we are all here! πŸ™‚πŸ™πŸŒΌ

Dec 21, 2015 7:46 PM

Jelly,

I'm not trying to preach, I just want to tell you, I understand. Yes, I got lucky, I'm mostly better, down from daily lowest 8 on pain scale to an average 2 to 4.

Do you use Skype? I'd love to talk to you. Heads up, I'm extremely awkward face to face.

I completely understand how you feel. I'm 15, and have been lucky to get somewhat better, then stable. Here's one thing to realize: the docs don't always understand how "kids" get sick, and they may be in denial because they don't want to see the reality of pain. They're human, and they can make mistakes.

One doc called me a drug seeker, and refused a referral to new specialists. One specialist told me my body wasn't like the 8 kids he'd diagnosed, and basically ignored me for my youth. That sucked.

I understand feeling like dying is comfortable, when I was stuck on the couch, unable to move, unable to exist without pain. My step mother blamed me for my illness, and moved my walker out of my reach.

I can't promise your boyfriend will stay with you. What I can say though, is I've been amazed by the kindness of people around me. I couldn't use the bathroom alone, and heck yeah, it was awkward to ask my friends to take me to the bathroom. I had two friends who'd run me from class to class, and some days we'd almost fall, dashing my walker with a seat (aka crap wheel chair) across the street to my theater class.

I couldn't write, walk, dance, remember anything, or as you mentioned, wipe my own butt. However, the docs tried to help me . Many treatments helped only slightly, or failed. It was finally my dad who stayed figuring out alternative treatments. I don't mean vitamins and minerals, I mean kava kava root, magnolia bark, and an industrial solvent.

I still live with pain, I'm just more functional. As my docs have repeated, "function before pain relief"...there may be no cure, but there's always a chance at better.

Please, keep talking to me, to us. We want to hear your voice, your story.

Dec 22, 2015 1:26 AM

Ferret, are you sure you're only fifteen? You have an amazingly adult way of speech that is full of an old soul wisdom as well as intelligence that even a lot of adults don't achieve. Your words are comfort, even when not directed my way. Have you ever considered a career in therapy? Just curious. πŸ’™

Dec 22, 2015 7:06 AM

Phoenix, I feel the same way about Ferretbandit!! She is amazing and I knew that once she saw Jellyfish's post, she'd be able to talk to her because she is a young person suffering with pain. I hope that Jellyfish takes her up on either Skype or just corresponding with her.

Dec 22, 2015 7:12 AM

I hope so too. I was amazed when she said she was only fifteen, and I hurt for her also to be so young. πŸ’–

Dec 22, 2015 7:25 AM

Me too. I do agree with you though about her being an "old soul" you just don't get that wise and strong on your first go round!!

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