Doing it alone

Hi

I am so sorry you are suffering so, the lives we lead are difficult at times.  I myself have struggled from about 40 to 47.  I was awarded (finally) my disability at 51.  My retirement date is when I was 47.  I was a tax auditor for the state and a college instructor who loved teaching those who strived to better themselves and their families.  I found it extremely difficult to do nothing anymore.  I struggled until I found a niche...I found that my brain still worked somewhat so I could give what I could back, to those who need it.  I spent years on boards of not for profits, so I involved my self in organizing(with lots of notes because of the meds) different functions at my church.  I can talk on the phone and make lots of lists.  I stop and rest often, more so lately but I have found that the struggle in finding a need to survive is finding a purpose.  That has helped me so much.  The more you do however you do it, the less you think about the pain.  I have also found solice in this web-site.  Check the off topic area...people here have all suffered as you have, and understand everything you are going thru.  (by the way, I live in a mobile home also....its not so bad.  I have always given so much to others that where I live is immaterial, as long as I am warm in the winter(chicago) and cool in the summers.  I, fortunately can still walk(may loose that ability at some time)and as long as I can, I say a prayer, thank God , get up and do something to help somebody...PLEASE FIND YOUR PURPOSE.  join us often and you will find people to share everything with.  I recently(last week) had to have a new catheter placed in my spinal cord for my pump, and really appreciated the prayers and ability to communicate with others the things I have gone thru.  My prayers are with you.  Have a good nite's rest.

As far as your children go, there are areas on this site to help them understand pain.  This may help them see where you are coming from.  Try to make memories for your grandkids however you can, and don't feel guilt,  just keeping trying. 

Hope to speak with you again

Again, as I just mentioned to someone else I have found that finding a good pain managment specialist at a larger hospital is the best way to go if you are trying to treat pain.  Only the best are usually there, hospitals will not tolerate anything less.  Find one that is board certified in pain managment, they are the specialists in this area and can help you at least try to manage your pain and they have different things available to them, many medications and other things that can be helpful.  Had I not done that, I don't know what I would have done but I find that I have pretty much reached my target goal of 70% pain relief which I think is good.  Some things that we have wrong with us cannot be fixed but they can be helped and staying out of pain as much as possible is the best goal so my advice is to find a good pain management specialist if you have not already done so, they can be very helpful.

You haven't done anything wrong, you have gotten yourself caught up in circumstances beyond your control.  Nobody wants to live the way that you have had to.  Perhaps you can find someone to be with that shares similar things that you do so you don't have to be so alone with all of this and having someone that truly understands your pain as much as possible can be wonderful.  You can start over and have a decent life with whatever time you have left, I know that is my goal.  For me, just sitting and feeling bad isn't something that I want to do, I want to start over and have the best quality of life with someone that I possibly can have, I still have some living to do and I always think that with someone that you are compatible with is much better than alone where all you have is the things that you are trying to get away from.

I wish you the very best and hope you can get this under control soon and that you can then go on with your life, rebuilding and starting over is possible and it seems to beat the alternative to me.

Randy.

I just won my disability fight of 4 years this past January. I, too, suffer from chronic pain due to fibromyalgia, bursitis, osteoarthritis, and degenerative disc desease. I have 2 sons, one of which is on his own and one who is a senior in high school . I am also main caregiver for my mother who is also disabled and recently suffered both a heart attack and a stroke. Yes, some of us know the pain you suffer. I also know the thoughts you have had among many others. I had alsways wanted to be the fun mom, the fun grandma.....won't happen. All I can do is all that I can do and hope the world and family can accept that. It's hard, I know. But you know the saying.... He won't bring you to it if He can't bring you through it. And all things are possible through Jesus Christ. My prayers are with you and all who suffer chronic pain.

Honey,

I am so very sorry for everything that you are going through, but I can tell you, that I absolutely understand you. I also live alone, and deal with the pain alone, I am 49 years of age, a mother of 4 and a grand-mother to 2 beautiful boys, but non of them live with me. I live alone with my dog Malcolm :-)  How do I deal with the pain you ask? Well..... I have become a researcher of my own condition and I have dedicated all of the free time that I have to become an "expert" and an informed patient. I read a lot of books on how to live with chronic and/or intractable pain, and foremost I keep the faith!

Right now I am reading a book by Dr. Jennifer Schneider called Living With Chronic Pain that is helping me a whole lot! I also read "The Intractable Pain Patient's Handbook For Survival" (this you can find on-line), by Dr. Forrest Tennant and that also gave me some tools to deal with the intractable pain that I suffer from.

Like I told you, I live alone. I was a Social Worker with the local health department dealing with patients that had HIV and AIDS and made a decent salary. Like you I had a home and lived comfortably..... then on Nov. of 07 everything changed! I had a 360/3 Level Lumbar Fusion due to DDD and some other issues with my back. The surgeon that did my surgery, screwed up to say the least! 3 weeks after the 1st surgery I was back in the hospital and he was doing an emergency surgery to remove pieces of the cadaver bone that was put on my fusion that had broke off and traveled to my spinal canal and put me in incredible pain + I was unable to walk due to the pieces of bone impinging on my nerves. Well to make a really long story short, I fired that Doctor, found a great Neurosurgeon, had 2 more Laminectomies, a Spinal Cord Stimulator installed, I was just diagnosed in June with Saddle Anesthesia and now I have to catheterized myself and to do #2, that is another adventure!  I am under the care of a great Pain Management Doctor, and he helps me and has great compassion. I use a cane or a walker to get around depending on the day.... I am on strong opiods, Methadone and Dilaudid, and my life consists of going to Doctor's, living in a 1 room efficiency because that is all I can afford and constant pain.....

I told you my story to let you know that you are not alone. There are a lot of us out there fighting our intractable pain alone; and that lost careers, live on Social Security Disability, lost homes and a lot more due to chronic pain, surgeries, bad Doctor's, etc..... Is important to work with the power that we all have within us and it is wonderful that you came here to ask for help. I myself, just became a member yesterday, and I haven't even told my story until now......  You will find a lot of people here that are in the same boat that you are in, I have been reading a lot of the posts, and you are not going to feel so alone.

I wanted to ask you... Are you under the care of a good pain management Doctor? Have you seen a good Neurosurgeon or an Orthopedic Surgeon that specializes in Spines to see if you are able to get surgery? What are you doing now for pain management?

I have found that walking, stretching, mild yoga, ice and heat help me feel a bit better, and my PM Doctor gives me spinal blocks and trigger point shots that also help me for a little bit. I just do anything to live a few hours or a few days without pain!! And I am sure that you know what I mean.

OK, this is getting very long........ but I just wanted to welcome you and let you know that you are not alone, and that you can come here anytime to talk and to vent your frustrations, we will listen, OK?

Take care and Welcome.

Millie

I have run pain support for years and live with NIP but clearly you either require pain management, and or if on it titration of your current regimen or a change in medications.  WE have no right to make ourselves feel worse and it is totally within us not to ISOLATE and cause further desolation.

Unfortunately and you may not believe it there are those less fortunate than you without a home, without children, any friends the list goes on.  People with NIP die from their own hand as well without taking the initiative not to be different but to have a diagnosis which today is known as a disorder not a symptom.

I do not mean to be cold I have over 40 pain disorders and end stage systemic RSD without pain management I would not be alive today; my CNS shuts down from untreated pain.

Treat the pain take the chance to live again.  I wish you well it can be done.

Karen Bryan BS,RN,UM,QC,DON

Dear Klsylady,

This might only be my second time posting at this website -- I too am no stranger to pain and multiple health problems. I developed CFIDS/ME while my kids were in grade school - they are now 25 and 30.  Sometimes it was like trudging through mud, but I did manage to get through what, at that time, also felt like a hopeless situation.  Back in "those days", there was no internet, but with prayer and persistence, I discovered two helpful organizations that provided with some info and a contact list.  I called the volunteers on these lists and eventually was told about a few doctors who had "heard" of what I might have -- getting help was even harder then, as we'd have to physically go to libraries and hunt down for material.  But what I knew then, as I am sure the other pioneer patients knew, was that we could not continue our lives in that way.

So, you asked how do I live like this ... well, you don't and you can't. It's not healthy for you nor your children.  I read over your message and can appreciate that you are trying to inform us about all that has happened in your life as a result of chronic illness and difficult, disabling symptoms.  And now you are reaching out on this forum for some guidance - that's a good thing.  That's kind of like us (the pioneer patients) who rolled up our sleeves at the library or did cold calls to kind strangers who volunteered to lend an ear.

At this point, it is time to take the first step which is to stop living in the past as well as learn how to stop carrying around and bringing back to life all of these losses and pain (incl. heartache and other emotions). I say this because we all have suffered lots of losses, from careers to relationships, and suffered financially, socially, emotionally and physically -- though it seems unfair and hard, this is not where any of us can stay.  We all have been brought down to our knees from losses and all sorts of mixed feelings and painful ones.  Now it is time to look up and start the process.  Grieving one's losses and working through lifestyle modifications is hard work.  I might add that it is okay if you or anyone needs a professional 'tour guide' to help you navigate through this journey.  Either ask your PCP or contact one of the CFIDS/FM orgs. in your state and ask if they can give you the names of skilled therapists (those experienced in chronic illness). In addition,  I agree with what others have observed and written - it sounds like you need to push for better care of your primary symptoms, at least to bring you to a more comfortable, functional state.  It is possible that a good therapist or even PCP might refer you to pain mgmt. center and recommend other treatments/ therapies.  But most of all, you cannot go on as you have been and there ARE ways to RECREATE a new way of life. 

I have two book recommendations which I found very helpful. These should be at your local library.  You can review them further at Amazon books.

Chronic Fatigue Syndrome, Fibromyalgia, and Other Invisible Illnesses : The Comprehensive Guide by Dr. Katrina Berne. ISBN-13: 9780897932806.  This book is written by a licensed clinical psychologist who treats patients with CFIDS and FM as well as has the illness herself.  The last 100 pages are no-nonsense discussion of the necessity to change our perceptions, tips on lifestyle modification, self-care, coping with feelings, relapses, loved ones, and going through the various stages of grieving the old self and recreating the new, with new hope and purpose -- but one has allow time to go through these steps but also do the work - no one can do it for you - life will go on and it'll be different than before, but it still can be good and worthwhile.

Sefra Korbin Pitzele is Secr. of the Natl. Sjogren's Syndrome Assoc. as well as a frequent motivational type speaker who wrote an excellent book long ago, which I still reference - in my opinion, it is one of the best self-help books on the above process: We Are Not Alone: Learning to Live with Chronic Illness. ISBN-13: 9780894801396.  This book focuses mainly on how to learn to live with a new bedpartner - one's illness.  It is honest, candid and extremely practical and helpful in how the author tries to guide the reader through lots of things she learned and observed, incl. how to go through the various stages of grieving, then adjusting, gaining a better understanding of how the family sees things, and figuring out how to redefine oneself.

Klsylady, you have already made the first step by looking for help and coming to grips that you cannot remain in the state that you are still in.  Don't stop now and don't give up! 

I too can relate to many of your concerns.  I  graduated from college with three young boys and a great hubby and then was involved in an MVA which resulted in many neck/shoulder/back, etc., problems.  I then seem edto start to lose more each and every day since my MVA....my home-based excellent job I had, loss of many social functions, the socialite I was just became more and more of a houseplant and had limited times of being pain free or feeling "good" like I had been before the accident.  I lived at doctor's offices, specialts, neurologists, pain specialits, etc., each giving me different alternatives in which to do and then later was given the diagnosis of fibromyaliga on top of all the rest of my pain.  I was also told by all doctors I seen that I would be lucky to work again and by then was on a total of 8-10 medications and still not myself at all, and way to young to not be working, having fun in life like others my age.  I fight not only with pain but with tremdenous amount of fatigue.  Many days I just stay at home in my pjs all day due to feeling unwell.  Although, I often wonder why in the late night hrs is when I will feel my best?  Is it because of all the pain meds I have taken all day and now by 1 a.m. I am at my best?  It is then I feel that the next day I will do this or do that with so and so but of course this never happens or rarely because my morning I am back to feeling pain/fatigued, etc. 

Although, I am  now awaiting surgery on my shoulder and neck I do set goals for my life and refuse to give up on myself.  I know this is so very hard when you don't feel well but we all need to have goals to look forward to.....even if you start with little steps such as getting out of the house for a short walk/drive to a store to sight see or talk on the phone to a long overdue friend, etc., just to feel like YOU do belong in society just now in a different role (pain management speaker/learner...).   Lastly, don't ever feel guilt for your PAIN!! Of course we would all like to stay healthy forever and be involved in our childrens, grandchildren's lives and do as much as possible with them but even if we can't the little things are just as good i.e. reading them a book, coloring with them, telling stories, etc, as someday they will all understand you were there if anything.  Keep your faith above everything and learn that health is the most important thing we have not the things we own or have or want.  Your remembered for what you say, do, actions, and so much more not by the home you had, the marriage that did not last, and the people that make you feel guilty were never understandable if they can't see it in your eyes the pain you have as well as depression all pain sufferers have.  Yes, we do try to hide this but who can have pain w/o depression? As your life truly changes drastically and we become depressed so do try to get on a good anti-depressant to get through the tough times and counseling could also benefit if needed too.  Remember nothing will get better until you take the wheel to change it, so my friend take control and make tomorrow a good day for YOU!~  I truly rambled much but hope if anything I did help someone out there, as we are all in this together and if possible strive to stay strong. God Bless!!

Have you filed for Social Security Disability yet?  You can go to the National Fibromyalgia website and find help to apply for disability filing.  I am so sorry that you are suffering in so many ways.  I hope this wiill help you.

Hello,

I'am so sorry to hear that you are suffering so. I have had so many health issues and pain that i thought it wasn't worth it. But, it is . it may not seem like it on our bad days, but your kids really do need you and love. It is good to hear you are going back to college. you will find your nich again just have the faith. I will pray for you and your family.

I hope to hear from you again. keep us all posted. it will get better.

take care and god bless you,

Eunice

I hope this doesn't sound trivial to you, because it has been a God-send to me.I am 69 years old and run a flower shop 6 days a week.When all my pain and suffering was finally diagnosed I was around 34 years old, and I had just recently opened my business. There was no way I could close it, for I had sold everything I owned and borrowed the rest from my father.This gave me the incentive I needed to look for alternative cures.If you are old enough you will recall that the name for fibro in the 70's was fibrositis (no cure, just walk, bike, and swim every single day).I couldn't follow all the physician's advice, but I did start looking at the way I was dealing with many of the things you are experiencing, the crippledness, the constant pain, the inabilities.I was lucky enough to find someone who knew much about food allergies.This was a great step for me in keeping my weight and pain down and I am still learning new things about how certain foods affect my pain.I know that I have to keep moving to keep my muscles limber;accpuncture and deep muscle massage help, too. I was very deficient in calcium, magnesium, c, and now I add d and B complex.The best thing was the advice I learned from the book, "the power of positive thinking" by Norman Vincent Peale.After reading the book carefully 3 times I learned  where a lot of my pain was coming from, from me.To this day when I get angry, or upset the first thing I notice is "the pain".I no longer expect my family to make me feel better, I can now do that for myself.I no longer get angry when I don't do something that I know will flare my condition. I no longer tell people what I've been living with for 35 years, for everytime you talk about it, you feel it.To this day I don't know which came first, the depressed thoughts or the pain.It's been a day by day journey that never ends, but life is livable and I have no regrets for they have been my journey and I'm proud of where I am today.I certainly hope this helps you get from here to there with more ease than you have been experiencing.It is not hopeless and no matter what, you are not helpless.If you have a support group to attend, then by all means do so.There is a great deal of helpful literature available.

Kisylady...you do have so much going for you my dear...but I sooper know how difficult it is to reach down deep on the days that pain issues overwhelm and everything is so clouded.  Just from the one response I read from you to Nan I see

a brighter outlook...even your log on name is cute!

You have done a wonderful job with your children and it is soo hard I know when we want to provide more but just cannot.  I am a Canadian, living with a mean syndrome

similar to Lupus and know all about the daily struggles with pain issues and not knowing from one day to the next how I will feel.  Luckily, in Canada, we do have universal health care and I do have a disability plan thru my work...(now in a forced retirement but I do realize how we Canucks are just so incredibly fortunate).

Kisylady...please keep in touch via this website and share your concerns and pain with us...chances are one of us is going to actually be having a better day and can help you shoulder your pain.  I think it is fantabulous that you have thought now have

carrying on with your degree in Psychology...you sound like a wonderful woman and I am sure have so much to offer to lots of folks.

In terms of limping etc...doncha just HATE IT when that happens?  I just decided that I can only do my best...in terms of grocery shopping, I simply ask for help to the car, and often have my prescription meds delivered. 

I find writing in my journal helps as well as thinking of all the special folks in my life...mainly friends as family members are few and far between.  Once I think of all the great things I do feel better...don't want to sound PollyAnnish though...of course the bleak days do come but I seem to be able to manage them better these days.

Best luck Kisylady!!  I can tell you are a real dear.

Thelma

don`t feel afraid by the stigma of it ,you have to always weigh in the consequenses before it.Question ,how you feel now against before? is it letting you do your daily life,and also beware of deppression it could be a side effect of it,even do is a lot of proffesionals that don`t understand it they are very quick to comment on it with out knowleadge and that is not right for a person in your case to hear(not proffesional opinion)keep researching it in the internet is a lot of info from people like me if you want any other answer i`ll be more than glad to help you or point you in the right direction.I hope this will give you some relief,don`t stop looking for answers is your life!,i also have a couple of blogs on the issues(http://famtraditions.blogspot.com you are more than welcome to see it.

hi klsylady--i know very well what you have beenthrough.i have intractable chronic pain every minute of every day since bad surgery 25 years ago.i too have felt dejected and hopeless.i just want to offer you hope because,if i can function,i know you can too.you are not alone.my hands hurt so much that i struggle with one finger,banging away,pausing frequently to rest and rub my fingers to massage away the pain,if only for a minute.i might struggle to talk to you on a phone or in person.ordering my thoughts isnt easy when i keep crying and sputtering.but each time my finger strikes a key i am reaching out to you to say you are stronger than you know,and you can do it.when i was deeply depressed and unable to sleep for two hours,a man i barely knew sent me an email to inform me about the american pain society,which i joined.in 1997 they published a statement that explained that according to doctors who study chronic pain,it is perfectly appropriate for chronic pain patients to take narcotic painkillers-obviously under close supervision by doctors.this simple fact changed my life.it took me 13YEARS ofseeking help from doctors,none of whom had any helpful suggestion,especially the scurrilous individuals at the teaching hospital who maimed me.its not beneficial to spend time on what happened.just know that noone deserves alife of abject misery for serving as a surgical guinea pig.period.the meds have allowed me to sleep,to excercise,to date,fallin love,get married,and to stay home raising two magnificent children to happy adulthood.with medication ive been able to sit through school plays and hockey games without moaning or crying or limping home early.as i type im listening to my lovely wife sing joyously with her championship barbershop quartet.they practice in the next room.i only cry when they sing "why did i choose you?'it is so loving,so beautiful.i would not be here to enjoy it 25 years later,had i not found the benefit of pain medications.before that revelation,i would lie in bed wishing that i could just go to sleep and never wake up to face any more crushing agony.even though my pain worsens as i grow older,the meds give me a fighting chance to live in hope,until a cure is invented,someday.ive learned to pace myself carefully,mentally and physically.ive learned to spend time alone-resting,regenerating,reading good books,researching online the many issues related to being a responsible pain patient.i wish you every success in your life with pain..