is there a point to live with this?

Discussion in 'Fibromyalgia Main Forum' started by SCAP, Mar 4, 2009.

  1. SCAP

    SCAP New Member

    i have reached the edge of tolerating all of this,,,,,,,,,,im a single 41 yr old w/a 20 yr old son ,,,
    i have been out of work for 7 months,,,,,,,,my family has totally shunned me,,,,,,,,I have fibro,cfs,ptsd,depression,ect,,,,,,,,,,,,,,,,,,,,,upon the urging of family,,who believed all my problems were medication related,,i quit all pain pills,,all vicodin,,tramadol,,,zanaflex,,ect
    I was able to barely work for the last 6 years,,but now I cant ,,and they just dont get it?
    My dr has no anwsers,,,,,,,,,,,,,,,,I am soon going to have no money,,and i dont have any experience with disability,,,or any government programs,,,I have never used them,,,,,,,,I have worked since i was very young,,since my family had a business,,,,,,,,,,,,so basically I worked since I could literally work,,,,,,,,,,,,,,,,,,,,,,,,I worked full time right until the day i deliverd my son,,,,,,,,,,,,,,,,,,,,and have been working for same company the last 20 yrs,,,,,,,,,,,i have been on paid medical leave,,,only because its a family business,,,,,,,,,,,,,,but now ,,my has decided that my TIME IS UP,,and I need to get back into the swing of things,,,,,,,,,,,,,,My son is totally understanding,,,he defends me to them,,,,but ,,im just tired if this,,I cant be who they want me to be,,,,and I cant continue living in constant pain and constantly trying to convince family thatt this is real,,,,,,,,,,,,,,,,,,,,,,,I'm tired of it all,,,,,,,,,,,,,,,,,how do people deal with this,,,its been almost 20 years of this,,and I just dont feel I can go on anymore,,its surely not going to get better!!!!!!!!!!!!!!!!!!!!!! I have enough pain drugs ,and everything else here that basically i could end it any minute,,,,,,,,,,,,,,at this point ,,thwe only thing i worry about is my little dog,,,,,,,,,,,,,,she needs me,,,,,,,,,,,,,i feel everyone else would be fine without me,,,thats it,i vented
  2. spacee

    spacee Member

    Yes, indeed, we do need to vent. I hear you. Your misery index is off the charts. Plz give yourself a goal. To get through the disability and on the the govt programs. Ok, a smaller goal first...finding a social worker with the state to help you with the govt. part. THEN a disability lawyer to get you disability. And brace yourself that you will be turned down the first time.

    You are just about where my sis in law was at 41. I knew she was terribly ill but i lived in another state and that didn't help much. She has about everything you have but the ptsd. She has lupus.

    Her family near her were horrid. But she had a little dog that she loved.

    After much misery (getting on disability and living on very little) at the age of 50 she met a wonderful man who had lost his wife to cancer. They have been together over a year.

    Things can change. Now, find that social worker! and about disability too!


  3. SeaShel

    SeaShel New Member

    Scap - I'm sorry you're feeling so defeated and not heard. I know that feeling and how overwhelming it can be.

    Your son needs you, we always need our parents. You "need" yours and they're not there for you, don't do that to your son.

    There's tons of info here on getting your SS disability. That can be overwhelming also, but it's worth it in the end, and if you know it going in, you can get through it.

    I would venture a guess that you might be feeling even worse because you quit your meds. Pain amplifies all my emotions. You may also have been on something that should have been tapered off, and that could be messing with you. I'm NOT blaming you, just trying to give you some reassurance that where you're at this minute doesn't have to be where you're at tomorrow or the next day or the next.

    I have pretty much made my own family of people that accept me for where I'm at, and only see the "real" family when I have to.

    Is there a support group in your area? Even if there's not a cfids/me/fm one, there might be a chronic illness or ptsd or invisible illness group.

    Just know that there are ALWAYS more people that care about you than you realize when things seem so dark. I sincerely wish for you that you find a helping hand and things get better for you.

  4. Rockismom

    Rockismom New Member

    Dear SCAP,

    Believe me, I have asked myself the same question lately! The answer of course, is yes there is a point. Sometime "mute" - but there ARE better days ahead! I hope you are a woman of faith because I can tell you my feelings are that without it your journey will be even more difficult.

    You must try to keep focused and take things a step at a time. Please start by doing these two things: Begin researching the disability route and PLEASE try to find someone to support and council you through these difficult times. Perhaps a pastor at your church (or a local church) or a referral from your doctor?

    Please go to the section at the top on *Social Security Information* and start there. I am sure you will find some helpful information and direction on how to go about filing for benefits.

    Is there any way one of your family members would go to a doctors visit with you so they can see and hear first hand what he/she has to say about your illness? It seems apparent that (other than your son) your family does not understand your illness or they would not have decided that your "TIME IS UP"!

    From this day forward try to concentrate on making your life more already know that it isn't going to be easy...but in the long run we both know it will be worth the effort!

    Please keep us posted - we care!

    Good luck and God Bless You!
  5. TeaBisqit

    TeaBisqit Member

    I'm in the same boat. There are alot of us here like you. I've had it for eighteen years. I had to stop talking to my relatives because they were so evil. Just stay with your son and your little dog. Do not listen to your family and do what is right for your body. It is none of their business and it's not their body that is in pain.
  6. bobbycat

    bobbycat New Member

    I am sorry about your support system being so bad. I think we all have lost some people due to their inablilty to understand. I am at the point that I like to be mostly by myself anyway with a few really good freinds and some family members. As far as you disability if you are going to apply I could not do it myself either due to health. Contact Allsup on this board. It is worth it to let them handle everything. Also Go to DSH (Department of Social Health Services) you can search online and they have applications online and see if they have any programs that might help you. Search the internet for local programs that might help you such as discounted programs, with phone, electricity etc. Good luck. Take care. By the way I have been where you are at many of times.
  7. AuntTammie

    AuntTammie New Member

    I totally understand what it's like to feel so depressed and hopeless, but I have learned that there is always hope, even when things are at their worst. I know that a lot of what I am going to say will probably sound trite, or not really believable, or not enough to make a difference....I know this bc I have been there many times.....but I also know that what I am going to say IS true and does matter..... & YOU DO MATTER.

    Family can be the most difficult sometimes to get to understand about out illnesses, and that's too bad, but there are other people out there who do get it. Sometimes it is only online, but sometimes it's in person, whether thru church, support grps, or other places. This online grp is a wonderful resource, but there are others out there, too. You may feel alone, but you are not....and you may feel like you don't matter to anyone, but you would be surprised by how much your life has affected others and how much they would miss you, even if it doesn't seem that way now. And, your son and your dog will miss you and they do need you. As far as support grps go, in addition to grps specifically for our illnesses, there are groups like emotions anonymous that can be really helpful, too. Also, it sounds like you could really benefit from finding a good, caring counselor. If money is an issue with this, there are sliding scale places, and places that will take little to no payment if you cannot afford it. Places like the YWCA (not YMCA) are great, if you have one available.

    Concerning all those meds....if you are not going to take them for pain, etc, then you need to get rid of them. If you think they helped your pain, etc and you want to start taking them again, I would suggest only keeping a small amount on hand and having someone else hold on to the rest. I know that might be hard since your family doesn't want you taking them, but is there anyone you could trust to do this? A friend, counselor, etc....or even a bank deposit box. There you could still get them as you need them, but they wouldn't be sitting around tempting you to do something that could be permanent.

    Also, as to that part, it is much much more likely that you will not succeed in killing yourself if you take a bunch of meds.....the more likely scenario is that you will either be found and taken to the hospital and committed, or you will wind up causing more damage to your body and brain but won't things will actually be worse than they are now. Or you will wind up taking too few to work or too many for your stomach to handle and you will throw them up involuntarily. Seriously, I have learned about this from research and personal and professional experience. I'm not just saying this to deter you (though of course i do want to deter you....I'm saying this bc it happens to be true).

    As far as the hospital goes, that might actually be a good place for you to be. I don't know what your feelings about that are, but I know generally people don't exactly jump at the idea. However, it can give you a break and a chance to physically and emotionally stabilize a bit, and it can lead you to some support and resources. Actually, even if you do not feel that the hospital is the place for you to be, it could be a good place for you to call to find out about any support groups, educational groups, other resources, etc in your area. Local churches can also be good sources of this kind of info, even if you do not go there.......and though I don't want to push anything on you, faith and church and the people there can be very helpful, too, if you don't already go to a church.

    Now as to the financial part of this.....People with our illnesses do get disability and there are other forms of financial assistance. If you make an appt at a social security office, they will assign you a case worker who can help walk you through the process, or if not that, then you can also get a lawyer who will work on contingency (will only take payment if you get disability). The lawyer will also be able to walk you through it, so it won't be as overwhelming.... still not fun, but at least you will have someone on your side who knows how to approach it.

    Finally, if you are really in danger of doing something to yourself, there are hotlines you can call....or even if you just continue to feel really bad - you don't necessarily have to be in immediate danger to call them....the people on there are volunteers who genuinely care and want to help....and they are yet another source of information if you want to find other resources. 800-273-talk is can find others online or in the front of your phone book.

    Please don't give up. You do matter and I will be praying for you.
    Hugs (if you want them)
  8. emmally

    emmally New Member

    You are not just have to keep the faith that things will get better. That is what helps me..
  9. LadyCarol

    LadyCarol Member

    SCAP, you're not along in how you feel, you described exactly what I've been through numerous times. Most other people don't and can't understand what it's like no matter how many times you tell them, it's tiring in itself to keep telling them over and over.

    At times the only thing that keeps me going is knowing my 2 dogs love me and need me, they are the ones who spend their time with me supporting me, licking me and loving me. Today has been a good day and I made the most of it and enjoyed it, when the many bad days come I feel dreadful.

    I hope you soon have a good day and are able to enjoy it.
  10. Janalynn

    Janalynn New Member

    I don't have much more to add to the wonderful posts above except a couple of things.
    Your son is THE most incredible gift you've been given. He will NOT be okay without you. Remember, the pain you're in...will only be transferred to those you leave behind. You would never want him to bear that would you?

    Also - no we don't always know the meaning of why we go through what we do. Maybe your words will touch someone, you have or will make a huge difference in someone's life. Maybe you need to continue to be a mother to your son to be there with him through his journey of life.
    None of us know the "point" of it really - we just try to find some meaning in every day or every moment.

    I am SO sorry that you have so much despair in your voice. There are times when everthing is on that list of what's wrong. BUT those times really do pass, sometimes we have to search for what's right - if only for one single minute, enough to help us hold on - enough to help us get through. What's right for you is obviously your wonderful son and dog.
    Those aren't small things. They're HUGE.

    I hope you have better days ahead!!
  11. shari1677

    shari1677 New Member

    Thanks so much for posting here when you need to vent - that is what we are here for.

    I have, and continue to be at times, felt as you do. Why bother? There's nothing to live for, etc. I'm also 41, but my daughter is 14 - and I'm a single mom too. She could easily move in with her father who has more money and more energy and I think about it everyday.

    My family is also urging me to go off all of my medications, but they forget I was sick BEFORE I went on the medications and I am better now - they just forget how I was before I was sick. I'm glad I didn't go off of them now that I read your story, it would be hell.

    I also know, for a fact, that if I would go on disability my family would shun me and I would have no one. In fact, I was so sick a year ago, I couldn't work for 3 months, went to welfare, talked to my doctor about disability, etc. My family absolutely FLIPPED. They stopped talking to me. They would roll their eyes at me, you know the deal.

    I've only been at this for about 5 years now - almost as long as you and I don't think I'll be able to work much longer either - I don't think I'll make it to retirement I'm almost sure.

    Contact your local welfare office. If you are on welfare - at least what I found here in PA, they will get you an attorney FOR FREE who will try your case for you. Not only that, but if you are on full disability, they will help with medications and such - which I'm always afraid of. If I didn't have my meds - I would probably jump off a cliff.

    Just curious if you have tried anything to help, diet, herbs, exercise, etc? I feel like I've tried everything and I wonder if maybe I should just decide this is it and just live with it.

    [This Message was Edited on 03/05/2009]
  12. Smurfette17

    Smurfette17 New Member

    I felt like you all can see so well into my heart. Almost every day I wake up thinking the same thing-- there is no point to this, except for me to suffer. My life feels like an endless string of painful days to be endured.

    Then (very occasionally now), I will get a good day and feel happy. It's rare (and it's not today), but I try to remember those days. Of course, this is really hard because for me a bad day can erase any good that I've ever thought on the good days.

    It has been really important for me to surround myself with people who care. This has been very hard because I got this DD just after moving to a new city and don't have any close friends here. There is no support group in my area. I have my husband, and my family is 6 hrs away. Still, I have them. I worry that my family, my husband and my 3 close friends will get sick of hearing me whine about my health AND about my depression. I call them and I cry. My husband sees me cry all the time. But what can I do-- the worst thing is for me to pretend to be happy when I'm not.

    I wish I could tell you that it will get better, but the truth is that I don't know. Nobody knows. All you can really do is live one day at a time. Literally.
  13. loto

    loto Member

    Take the meds that help you feel somewhat better! My family calls me a "med-head", but I don't care. I tell them that's what's keeping me going! They couldn't imagine what I'd be without the meds. I know, from before I was diagnosed with FM and didn't have them! Make your family go to the doctor with you, and ask your doctor to fully explain to them what people like us go through! Fortunately, I am still able to work my administrative secretarial job, so I don't know what you're going through in that respect. But please, don't give up, make your family somehow understand that you need their support, not their constant shunning!
    love and best wishes,
  14. Smurfette17

    Smurfette17 New Member

    But remember-- we cannot MAKE anyone understand what we are going through. It's a fruitless effort. All that was doing to me was making my emotional stress worse, by trying to get people to see things my way. It was like banging my head against a wall, and why do I need to expend energy on that??? I let it go-- let them think whatever they want, and I'll still do what's best for me.
  15. deliarose

    deliarose New Member

    20 years is a long time to be sick. This illness breaks people down, on so many levels. I'm amazed that you have been able to work this long.

    Two quick things: in terms of treatment, the simplified methylation treatment that rich van k has talked about on this board turned things around for me and set me on the path to recovery after 15 years.

    You can start on your own without a doctor. it's all supplements.. it's cheap, it's accessible.. It gave me good sleep for the first time in a decade in just a COUPLE of week.

    Second: SSDI. I used a disability advocate ($50 an hour) and I got approved using her on my 2nd go around. I might have won first time if i had been using her. Lawyers get a percentage of your back pay.. so it pays for them to delay things until the ALJ level.

    There is hope & you are not exaggerating. Anyone who has had CFS for 20 years.. alone.. must be very sick.
    add fibro and your other conditions.. and it's a miracle you can still get up in the morning, so DON"T be hard on yourself.

    hang in there
  16. harmony21

    harmony21 New Member

    times get bad and worse, sleep and tomorrow will be better even if only a little and then there is your son

    angel hugs
  17. lynncats

    lynncats New Member


    Hi....My Name is Fibromyalgia, and I'm an Invisible Chronic Illness. I am now velcroed to you for life. Others around you can't see me or hear me, but YOUR body feels me. I can attack you anywhere and anyhow I please. I can cause severe pain or, if I'm in a good mood, I can just cause you to ache all over. Remember when you and Energy ran around together and had fun? I took Energy from you, and gave you Exhaustion. Try to have fun now! I also took Good Sleep from you and, in its place, gave you Brain Fog. I can make you tremble internally or make you feel cold or hot when everyone else feels normal. Oh, yeah, I can make you feel anxious or depressed, too. If you have something planned, or are looking forward to a great day, I can take that away, too. You didn't ask for me. I chose you for various reasons: That virus you had that you never recovered from, or that car accident, or maybe it was the years of abuse and trauma. Well, anyway, I'm here to stay!

    I hear you're going to see a doctor who can get rid of me. I'm rolling on the floor, laughing. Just try. You will have to go to many, many doctors until you find one who can help you effectively. You will be put on pain pills, sleeping pills, energy pills, told you are suffering from anxiety or depression, given a TENs unit, get massaged, told if you just sleep and exercise properly I will go away, told to think positively, poked, prodded, and MOST OF ALL, not taken as seriously as you feel when you cry to the doctor how debilitating life is every day. Your family, friends and coworkers will all listen to you until they just get tired of hearing about how I make you feel, and that I'm a debilitating disease. Some of they will say things like "Oh, you are just having a bad day" or "Well, remember, you can't do the things you use to do 20 YEARS ago", not hearing that you said 20 DAYS ago. Some will just start talking behind your back, while you slowly feel that you are losing your dignity trying to make them understand, especially when you are in the middle of a conversation with a "Normal" person, and can't remember what you were going to say next!

    In closing, (I was hoping that I kept this part a secret), but I guess you already found out...the ONLY place you will get any support and understanding in dealing with me is with Other People With Fibromyalgia.
  18. AuntTammie

    AuntTammie New Member

    just wondering if you have been able to read thru all the responses on here, and how you are doing now? I don't expect that things will suddenly get better, but sometimes just knowing that all these people do care and can understand can go a long way....anyway, I haven't seen any response, and bc of the tone of your original post, I am worried about you....please post back and let us know that you are still around
  19. yucca133

    yucca133 Member

    My answer is - that it helps to be grateful for what we do have.

    I, also, live in constant pain and get hit with bigtime depression at times. I have a good doctor that understands and does prescribe pain meds that help somewhat.

    Your son would be devastated if you were to harm yourself, even if he understands what you are going through.

    My son died in August of last year. He was only 34 years old. He was taking Methadone for chronic pain. He was never an addict. He died from taking the drug as prescribed. I will never recover from the loss of him. He was a very talented artist - an ivory carver in Maui. We hoped to go and live in an ohana type situation some day. Now, that dream is gone.

    I do not have the financial worries that you have, but I do know that nothing is really secure in this life. Anything that we have could be gone tomorrow and we could find ourselves in a similar position to yours.

    I also know how cruel families can be. My two younger daughters have not spoken to me in four years. I know that I was a good mother to them, but one of the things they wrote to me was: "You just want people to feel sorry for you!" Well, if you can't vent to your own children and expect them to understand, I'm not sure what to expect from anyone. Since this is an "invisible disease" for the most part, we don't get any respect. I've seen the difference in the empathy that people who are diagnosed with cancer or other terminal disease have heaped on them. We could barely be able to crawl and people don't want to hear about it because ours is a kind of "garbage can diagnosis".

    I know that each day is a crap shoot as far as how we feel and some days are better or worse than others.

    Please, please try to see the light at the end of the tunnel.

    You are a worthy human being, the same as anyone else. I've been so tired of the misery at times, that I don't want to be alive, but we have to keep on keepin on. You have two reasons - your son and your little dog.

    (I have 12 cats - hence I guess I'm an eccentric cat lady). Oh well.

    Please write to me if you need someone to correspond with that understands. Val
  20. blondie45

    blondie45 New Member

    I was exactly where you are for quite a while, trying everything I could to help with the fibro and IBS and feeling like all the money I was putting into things was not helping one bit. I kept going as I had to (have a husband who doesn't really help much with in-house chores). It was VERY hard most days so I understand where you are at. Please keep trying things and researching, as I am proof that there are answers and help. Since I found Lyrica for fibro I am in a totally different world. No excruciating pain just waking up in the morning, no feeling extremely hot and not being able to function after getting out of the shower, and no having a dull painful headache at the back of my head near the bottom where the neck connects. For me, this is my answer for now (hopefully it continues to work). Please just keep trying things and hopefully you also can find relief soon!