Last post Thu, Jun 12 2008 5:18 PM by DavidZ. 27 replies.
i feel so alone in my pain. i have a shattered l1 vertabra, beulging and degenerating discs, and sever arthritis in my lower back. With no one to talk to that is goig thru the same thing[ cronic pain] , i feel like i am going to lose it. i cant stand being looked at like a junkie when i get my meds filled or when i end up in the er. and how do i explain to my 2 year old duaghter that daddy cant play cause my back hurts too bad. it is a terrible mind blow to see her cry because i cant pick her up. what do i do to coup with this? some one please help me.
Dear Jeeper75,
I very much understand you and what you are going through. I have also felt so very alone, like I was gonna lose my mind. I have constant chronic pain, pretty much everywhere. But specifically I have HLAB27, which is a genetic disease, and it causes inflammatory arthritis in my hands, elbows, lower back, knees. and ankles. I also have spodolosing arthropothies (which is closely related to ankolosing spodolitis) and I can't even find specific info online for becasue they just don't know much about it except that it will eventually fuse my neck and spine and it has already bulged 2 discs (L4 & L5) in my back and causes my spine to sit on the nerves that run through my hips and pelvis. I have CF (chronic fatigue) which also causes muscle pain and the HLAB27 has just now (Although someone should have seen it earlier because of constant sprained ankles and knee surgeries) attacked my feet in which I have a form of clubfoot which is totally concealed (you can't see it from the outside) and it makes the bones in my feet break occasionally. Wow, I've never typed that out before, sorry its such a long description. Anyway, my husband and I used to cringe every month going to the pharmacy because inevitably one of the pharmacist was going to lecture us about becoming addicted and they didn't want to fill it even with a doctor hand written prescription and even after speaking to my doc every single $&*&*! month (I'm sure you know what I mean). We finally spoke with the manager and explained in great detail that we knew that I would get addicted but I had NO chance of ever coming off of these meds because my disease will only progress and get worse over time. We told him we were tired of be lectured and treated like criminals. he then told everyone who worked there the situation and it had become a non-issue. I recommend having a heart to heart conversation with the manager of your pharmacy like we did and if they don't respond well, I hope there is another pharmacy for you to go and try again until you find one that is sympathatic to you and your situation. Now as far as kids go I have also been there this all started for me when my little girls were only 1 & 2 and I was still able to take them to the park for about one more year , they are now 81/2 & 91/2 and the thing that breaks my heart the most is when they say "Mommy we wish you could run and play with us again", I tell them me too and they crawl into bed with me (I'm in bed 90-95% of every day) and we snuggle and watch one of their favorite shows. We (When they were younger) also learned to play games in bed as much as possible, now I don't know your limitations but I hope this idea helps a little. As they have grown older we still do things in my bed like homework, reading books, playing board games and even the playstation (you'd be suprised how good your 2 yrd old can be at it, we were). As far a coping, day by day or hour by hour or even minute to minute; whatever you need right then. I hope you have faily and friends to talk to also, my support system makes sure they call me daily and even then I just can't take it somedays and want to give up and on those days I have it written close to me a sign "Tomorrow, may be better and it may be worse but it is HOPE and POSSIBILITY", and I say it almost like a montra evn if I'm screaming into my pillow and hitting my pillow (never in front of my kids though, I put a smile on for them). Hang in there and I'm happy to be there foy you as someone who understands almost all of what you are going through (I would never think I knew it all but I think I know most). Please write soon and try to keep your chin up.
Ihope to hear from you soon,
Daka =-)
hi Jeeper I know it sucks I woke up this morning another monday another day wishing I could make plans and be able to follow them through and enjoy life a little more, aparently we are not alone. I feel as though I am letting my whole life is gonna pass by, I have severe pain and live on meds, it too is my back, I know calling the doctor or pharmacy does feel embarrassing but oh well... I personally can't get out of bed till my meds start to work and sometimes I can't walk even after them so I need em and thats just a fact. I also feel that the narcotics tend to lead to depression along with the dependency, so its like a catch 22. Sit outside and watch your 2 yr old play even if its only a few minutes at a time.If you can take a few steps with her as she rides a toy. t gives you both valuable time and for a minute takes your mind off your back. I have a 3 yr old grand daughter whom I see each day. I know what its like when she falls and I cant pick her up to comfort her. but she has learned to run over and get up in my lap for love and kisses and that I simply CANT pick her up and weve managed and you will too.Small baby steps wll bring you alot of happiness look for those little times of pleasure, I just try to get through minute by minute cause one day at a time is sometimes TOO overwhelming. let me know if i can be of help.
ok, the whole story is july 13, 2003 the floor on the job site i was working on collapsed and i fell 20 feet and landed feet first. that is how i sustained the L1 fracture. following that was the bulging and degenerating discs and in the past year or so the rapid onset of severe arthritis in my lower back. at the present age of 34, i have always done physical labor my whole life starting at the age of 14. i still have a very hard time accepting the fact that i cannot do the things i used to. i was a bit of an adrenaline junkie and into rock climbing and rappeling, roller coaster fanatic, avid outdoors men[ very primitive camping and long hard hikes]. since the fall, i cannot pursue any of these things anymore. on top of this, it has greatly affected my marrage. although my wife is the most understanding of all my family, i can only imagine how hard it is to see her husband crippeled in the prime of my life. this has affected everything from daily activities like the painful brushing of my teeth, to the lack of intamicy. i have reacently started to see a therapist which helps alittle, but it does not take the place of speaking to someone dealing with same daily pain , both physical and mental[i have just been diagnosed with clinical depression]just finding this forum and the few responses i have recieved have really helped alot making relize that i really am not alone in my struggle to deal with this. some days it is a marical that i dont blow my brains out to just end the pain, but the thought of my family helps me to struggle on, day by day, hour by hour. i cannot thank you and the others for the support that i was searching for. for i feel it will make a very big impact in my abilitiy to cope with this. i hope we can all stay in touch and continue to help each other with our daily struggle to survive. if there is anything i can do, please do not heasitate to ask. i hope i can be as supprotive as you all have been so far. from the bottom of my heart and soul, thank you and god bless.
Hey Jeepers!
Welcome to Disaboom! Really happy to have ya' here! I'm dealing with constant pain also, however, mine isn't so much back pain really. My pain stems from something called RSD (Reflex Sympathetic Dystrophy) which I suddenly had after being a passenger in an accident that broke nearly half of my body..lol. There isn't a lot of info. on this because it was first diagnosed about 10-12 years ago. So I will put the worst symtom in layman's terms here. My skin feels as if someone has poured gasoline all over my body and dropped a lit match onto me. It is a progressive thing which started in the knee area of one leg, within a few years, it literally covered my entire body. And...lol...there is no known cure..yeah me!..rofl
Anyways, I don't want to ramble on about my symptoms or the medical issues that followed the accident. What I want to do is tell you how I handle all of it and still keep the depression at bay so that perhaps, you can find something helpful from my situation. :)
In the beginning, I was bedridden...where before I had been SO active...lol. Just knowing I wasn't able to jump right outta bed at night and use the restroom was depressing (sigh). On the funny side, there were times I would actually attempt that though...course, you really had to be there to see it happen in order to understand why it was so hilarious.
I had become isolated from my "old" life and even the huge amount of friends I had were rarely seen after the first, "Omg, I'm so sorry about your accident." I found this to be really depressing..lol. Well, no point in going into great detail about how far into that pit of depression I had sunk...I can just guarantee you, I was there.
It had become almost like a dang security blanket for me, I held it close and toted it with me everywhere. It was there in my dreams, my doctors appts., my public outings (rare..usually consisted of going to a doctor), and even there when I fought to see my lil' girls smiling face. I felt like a failure. The key word in that last sentence is, "I", for nobody else felt that way about me...certainly not my baby girl.
At one point, I finally decided (after months and months and months of exploring the Depression Hotel...place reminded me of the dang Roach Motel...check in...but don't check out...lol)...to reinvent myself. I knew I could no longer lead the active life of a professional bartender/dance instructor (course, I wouldn't find myself on Dad's roofing crew anymore either...lol)...so, what could I do? I knew my brain worked, my body didn't.
Now, it wasn't overnight by any means, but I have become a successful writer.
As far as my daughter (sigh) I think that is where I tortured myself the most. She was focused on playing with me. That's all she wanted, she didn't care "how" we played as long as we played and laughed together. I would beat myself up over things like, "Omg, I can't even hug my own child anymore." My attitude would make her sad, for as much as I told her, "I can't", I never came up with any other options. I would just say, "I can't."
Having an epiphany one day...lol...I realized I was always stating the problem but not offering any potential solutions. For me, it was easy to complain about my situation but "who" was I expecting to fix it? I mean, I finally thought, "Well, if I can't find at least 2 potential ways of fixing what's wrong, then I'm not doing much to help me or my daughter, am I?" (I've laughed, belly laughed about how simple that one thought was yet I had been in my 30's by the time it crossed my mind..lol) .
We learned how to adjust the things we had done before the accident so they offered us the same joy but were actually different functions. Man, that's really diffcult to explain..lol. I guess my point here is this, we had to reinvent how we did things together so that we could still grow with each other. I couldn't actually do a lay-up on the basketball court anymore...but I could explain it and be there to instruct her and help her perfect her technique. Always smiling, full of pride for her accomplishments, offering words of encouragement, cracking jokes to make her laugh when she was bummed over a mistake....always there, just from a different spot now.
So, there are things I can't do...the same. I now take great satisfaction and joy in finding a new way to do the things I did before the accident. This tactic boosts my emotions is so many ways...lol...and I checked outta' that blasted Hotel because I just wanted to touch the sunshine again. I hope that you will come on out and touch the sunshine again too, Jeeper!
Bless you,
Ms. Jessie :)
Jeepers,Glad you dropped in here and reached out. Welcome to Disaboom. I live with daily constant physical pain. Before I get out of bed I recognize it from head to toe. I have problems getting around at times. Some times I have to ask for help. I too have had the looks when I'm getting up or down real slowly, and I finally had to tell myself those people don't know me. Don't know what I live with. If you need those pain meds that badly I'd say give them not a thought. Those that aren't in your life to be supportive are those just going to wear you down. I take some pretty heavy duty stuff and I have to have hard copies of the scripts and I get looked at like whose this person who looks normal getting all this medication. I take Oxycotin in 80mg Dosages, Fentanyl Pain Patches 25mcg/hr and when none of the above work I use pot. I absolutely hate the feeling of not being in control of my faculties. I hate that high as a kite feeling but some times you have to say do I suffer or do I take these so I can function a while. I've done the super girl routine of oh I'm going to show myself and other's I don't need these. So I don't take anything, and then I'm so down for the count in so much pain usually ER is the next move. I have refused help out of bed, refused help around the house, and my husband has this lil inside joke with our friends. He says I just wait for the clunk then come in and help her. I got tired of needing his help out of bed, so I found a way to roll out of bed gracefully. Then sitting on the floor, I think real slick dumbass, now what! So if you have to take them, take them. Don't worry about the people who don't understand. They don't live your life or get to hop inside you and see the level of pain and struggle you go through. As far as your daughter, she knows your daddy and I'm sure any contact with you is a blessing. Do you have some one there that can just put her in your lap so you can hold her, without physically having to pick her up? Pain can really affect how we view ourselves, self confidence wise it takes a hit, you feel weak having to take the medications to be able to function, and all along your just praying for one day without pain. Hang in there. Try to recognize and focus on the good in you even at the worst of times. We're still who we are, despite our disability, through pain, your still who you are. You have a heart, you have a mind, you can feel, you can think, you can love. Your still a human being.God Bless to you and hang in there. There are many who do really know how you feel.
Hi Jeeper,
I'd be happy to stay in touch, it helps so much to talk to others who understand severe chronic pain. I understand the feeling of isolation and lonliness. I send my girls to school and my husband goes to work and I'm here all day by myself and although most days I do ok there are those few days that I feel like the world is passing by and going on without me. I too was an active person, my husband and I played co-ed softball together as well as mens and womens teams respectively, we would go hiking as a family, we also loved roller coasters and thats all gone for me too. But I must say in just the few days of being here, my spirits have lifted just a little bit, finding people who understand is like gold to me. My own mother, who has been to the doc with me and know my problems, still doesn't understand. She gets mad at me for being in bed or sleeping so much because of either the pain or the meds or both and it can hurt my feelings. I'm glad to hear your wife is there for you, I know I said my husband is here for me, and I understand what you mean by having your spouse watch you suffer at a young age. I can also understand your depression, mu husband had an injury to his shoulder and was out of work for a year+ and he too went into depression. Br being here with people who understand and making friends and staying in touch should help for all of us and I hope to help you in any supportive way I can.
God Bless,
Karen=-)
Believe me, you are not alone. I too have severe lower back pain. In 2002 I had back surgery and have titanium screws and rods. It did not help. I am 53 and have been told that my arthritis is as severe as an 80 yr old. In addition I have Lupus, Fibromyalgia and the host of other diseases that go along with the above. In addition I am trying to oversee the care of my elderly parents who live just down the road from me. My Mom has alzheimer's and my Dad has heart disease, prostate cancer and is showing definite signs of dimentia. I just don't have the strenght to worry about what people think when I go get me meds filled. The thing that bothers me most is I don't have the energy and my pain is too severe so I can't play and spend the time with my Grandkids that I would like to.
Peggy
I CAN DEFINATELY UNDERSTAND HOW YOU FEEL ABOUT THE BABY/
I HAVE A BEAUTIFUL 5 YR OLD GRANDSON
A BEAUTIFUL 20 MONTH OLD GRANDDAUGHTER THAT I CAN NOT LIFT OR GET IN THE FLOOR AND PLAY WITH/
I HAVE ALWAYS BEEN AN ACTIVE HANDS ON GRANDMA AND I LIVE FOR THAT
IT DOES FEEL LIKE IT HAS ALL BEEN STRIPPED AWAY
CHRONIC PAIN AND OR FATIGUE WHAT EVER THE CAUSE IS LIKE NOTHING I HAVE EVER EXPERIENCED
ALONE AND HELPLESS IS THE ONLY FEELINGS I HAVE RIGHT NOW
ANGER IS AN UNDERSTATEMENT/IF THE DOCTORS HAD OF LISTENED TO ME MONTHS AGO I BELEIVE THINGS WOULD BE DIFFEENT.
YOU ARE NOT ALONE/WE ARE ALL HERE/NO ONE BUT US KNOW HOW WE FEEL
Thanks for the reply. My youngest grandson is 4 months old and already he is too heavy for me to pick up and carry. I understand completely the feelings you are having. I am pass the anger stage, but I am fighting depression. I have to spend most of my time in bed and just at the time in our lives when I thought my husband and I would be able to travel, etc. I have to go straight to bed after an outing to the grocery store. (That's on a good week when I feel like doing that.) I am trying to hold on to my faith.
Hi Pegster and Robin,
Hang in there you two. I know it's so frustrating having to give into pain and have it ruin your plans. It stinks. I used to plan everything, and if I didn't and I wanted to do something I did. Now to plan the most important tasks around the amount of pain your in stinks. Pegster I've been there. I'll have a giant grocery list, and go up and down 2-3 aisles and it hits you out of no where to the only thing registering in my brain is get out of the store and get home. It's hard not to be so down on yourself and kick yourself for not being able to do more. Pushing yourself some times through horrible pain can do even more damage. Just be gentle on yourself, and pamper yourself when those horrible moments come up. If you can't get things done, that's okay, they can wait a day or two. Some times for myself just doing absolutely nothing is what it takes for me to get stronger. That means no cooking, doing dishes, laundry, running all over town doing errands, etc. For me some times I don't even bother getting dressed, showered, clothed, the entire make up and hair thing. There are days when that 2 hours is too much. So it's okay to just stay in your pajama's and take care of yourself. Cuddle up with a blanket, and a cup of tea or what ever it is you do and watch a movie or something. Some times for me I'll find the comedy channel when my spirits are down, and I have to tell you even on closed captioning the jokes comes through lol. It sounds to me like your both stronger then you give yourself credit for. Hang in there. Just take things one day at a time as they say. Some times for me it's an hour at a time.God Bless you both!
PEGSTER I'VE HAD SYSTEMIC LUPUS (SLE) FOR ALMOST 5 YEARS NOW. IT TOOK DUMPING 4 DOCTORS TO FIND THE PERFECT ONE I HAVE NOW. I KNOW IM IN PAIN FROM THE MINUTE I WAKE UP IN THE MORNING, UNTIL I GO TO BED AT NIGHT. WINTER IS THE ROUGHEST FOR ME WITH IT. IN THE MORNINGS MY HANDS WON'T OPEN, RUNNING WATER OVER THEM DOESN'T EVEN HELP ANY MORE. I HAVE TO TELL MY HUSBAND TO GRAB A HOLD AND JUST BASICALLY PRY THEM OPEN. HE ALWAYS SAYS HE DOESN'T WANT TO HURT ME, BUT THEM STAYING CLOSED HURTS WORSE. MY MUSCLES AND JOINTS ACHE ALL THE TIME, I CRACK ALL THE TIME WHEN I NEVER USED TO. EXCEPT FOR MY KIDNEYS, THE REST OF MY ORGANS ARE STILL HOLDING THEIR OWN. I HAVE THE ISSUES OF GETTING OUT OF BED, AND IT'S HARD TO ACCEPT SOME TIMES I HAVE TO JUST DO NOTHING.
IF YOU EVER WANT TO TALK ONE ON ONE FEEL FREE TO EMAIL ME ANY TIME. MY EMAIL ADDRESS IS SHELLGVCHICK@YAHOO.COM I'M THE ONLY ONE IN MY PERSONAL LIFE WHO HAS LUPUS, I'VE GOTTEN A LOT OF SUPPORT FROM PEOPLE ON DISABOOM WHO ARE GOING THROUGH IT AS WELL. IT'S TOUGH TRYING TO TALK TO SOMEONE WHEN THEY CAN'T EVEN GRASP WHAT IT'S LIKE. ANY TIME YOU WANT TO TALK IS OKAY WITH ME.
HANG IN THERE.
I know what it means to feel alone in your pain. It's so frustrating when others don't "get it". I have MS, live alone, have no family nearby, and most of my pr-MS friends have moved on in life. It's easy to get down and feel alone out there. Sometimes, I wish others could just live one day with the pain and limitations I have, just to see how hard it is to get up in the morning, shower, dress, and have some kind of meaningful life. Well, that just isn't going to happen. Others just don't "get it" and bably never will. I found to set my own pace, my own expectations of myself, to let go of what my life used to be and to just accept that people aren't going to "get it". It's so hard to accept these things, but you are not alone. There are other out here who understand. I'dlove to have a daughter to tell that Mommy can't play! While your little girl might not understantd what's going on with you, she knows you love her and will grow to know that you are there for her in other ways. If you ar't seeing a pain management physician, I'd strongly suggest you look into finding one. Through trial and error, my doc and and I have found a suitable combination of medications that work to keep me moving.
HEY JEEPERS,
I HOPE THINGS ARE GETTING BETTER FOR YOU. I AGREE WITH YOU ABOUT THE DRUG STORES NOT TO MENTION THE ANAL DOCTORS OUT HERE THAT ARE IN FEAR OF WRITING WHAT YOU NEED TO LIVE EVEN A HALF WAY DECENT LIFE. IT IS AN UPHILL BATTLE, OR THAT HAS BEEN MY EXPERIENCE ANYWAY, I HAVE TO TAKE SOME REALLY STRONG PAIN MEDS JUST TO BE ABLE TO WALK, WITHOUT IT I WOULD HAVE ALREADY DONE SOMETHING THAT ALOT OF FOLKS WOULD NOT UNDERSTAND. BUT THE PAIN IS SO GREAT THAT THERE IS NOWAY I COULD SURVIVE IT, NO WAY. I TRY TO KEEP MY MIND OCCUPIED WITH SOMETHING SO I DO NOT THINK ABOUT THE PAIN SOULY, AS THAT ALWAYS LEADS TO SEVERE DEPRESSION TOO. NOW AS FAR AS YOUR CHILD GOES, TRY EXPLAINING IT TO HER IN A MANNER THAT SHE WILL UNDERSTAND, I HAVE FOUND THAT KIDS ARE VERY ADAPTABLE AND ONCE THEY UNDESTAND THAT YOU ARE LIMITED IN WHAT YOU CAN DO WITH THEM PHYSICALLY, THEY WILL APPROACH YOU WITH THINGS TO DO WITH THEM THAT IS FUN FOR THEM AND VERY SATISFYING AND FUN FOR YOU TOO! THERE IS ALOT OF THINGS YA'LL CAN DO TOGETHER, JUST USE YOUR IMAGINATION AND YOU WILL FIND A HAPPY MEDIUM. BEST OF LUCK WITH WHAT YOU ARE DEALING WITH AND I HOPE IT HELPS SOME.
SOUPY
Hi,
It gets better, you just have to get used to some things. Its really hard, its taken me 7 years to finally get it in my head. I cant do things like I used to, I have to ask for help.
Its hard, but when you get the right medications, doctors and physcial thearpy, it gets easier. I found this site and its great, you are not alone . Sometimes just talking to someone that know how you feel and understands makes it alittle bit better. Everyone gets down, but with us, its a little bit different. It harder to deal with the pain and trying to live a normal life. Ok, in our cases as normal as we make them.
I personally wouldnt worry about people or the pharmacy. Your in chronic pain you need them to have a normal life. There is no reason for you to be in such pain that you have no life. I have to use crutches and it never fails, some one always ask if I been in an accident or some thing. I just smile and sometimes say yes or tell them I have O.A., depends on my mood. Dont worry about other people, you take care of yourself first, and little by little you find what you can do with out over doing it. There are days I dont hurt so I dont have to take the pain killers but I take my other meds, and those are the days that I clean the whole house. I may cook several meals for the freezer and do things that I wanted to do but was in too much pain. Then there are days like today, that the painkillers arent working, and I know I have to be taken it easy.
Just have to learn what your body can cope with, I understand with a 2 yr old its even worse. Try to do things with her that makes it comfy for you. My husband is constantly overprotective. Its drives me crazy!! You will cope, and you will find out about your new body. It just takes time. My goodness, I think I wrote a novel. I have to say, I was feeling pretty down myself and I feel a little bit better hoping I helped you even just a little
Good Luck
