I am so afraid....

Discussion in 'Fibromyalgia Main Forum' started by discoverygal, Jan 13, 2009.

  1. discoverygal

    discoverygal New Member

    I have to tell someone.
    I am so afraid.

    I can only work because I am on pain meds all day long. If I didn't have them, I wouldn't be able to even move around, let alone hold down a job. And I fear that day that the meds don't help anymore. I am so depressed thinking about it. I have gotten progresively worse over the years and I know the day is coming.

    I will never let it be that I have to rely on others to do things for me because of my pain. When that time comes I won't live anymore. I swear I won't be a burden on anyone.

    Oh please make this go away.....

  2. Pebbles730

    Pebbles730 New Member

    Hi Discoverygal,

    I know how you feel, all of this with this DD have those feelings or can relate. I have had CFS for 10 yrs and was recently diagnosed with Fibro. I've been dealing with some of the same feelings. I just got married in September and in November I was diagnosed with this. My husband is very supportive and he never complains about helping me and he tries to understand the best that he can. In the begining I felt so guilty. I didn't want him taking care of me and doing all my housework and taking care of our dogs. But..I simply could not do it certain days. I sat down and cried and I finally told him how I felt.

    So the point I am getting at is that you should not be letting this negative feeling affect you so much. Your loved ones will take care of you because they love you. It is not a burden to them although you might feel that way.

    I think that all the worrying you are doing about your pain meds not working is what is keeping you down, and as I am sure you know, stress makes this disease worse! You need to stop thinking about the days that they don't work and simply just enjoy the good days when they come along. Many studies have come out recently that say that when one medicine stops working they only have to try some different things and usually it is successful. Medicine rotation seems to be very effective. you don't even have to be at the highest dosage when you switch.

    Any good day that comes along you have to treasure and appreciate it as long as it lasts. There are probably more bad days than good ones with this disease. But if you think positively and try to keep a good frame of mind, this problem on your mind will not bother you. If I were you, I would discuss this issue that is on your mind with your doctor. Let them know your concerns. They may be able to set your mind at ease and take the burden from you.

    I have been reading alot on these boards since I was diagnosed, and I can see that there are alot of people on these boards that are good people, helpful, knowledgable and willing to listen or lend advice when you need it.
    I hope this helps and that things improve for you.
  3. Forebearance

    Forebearance Member

    I feel for you, discoverygal. It sounds so incredibly hard to facing the challenge that you have.

    There was a guy on here in the past named Erik who did get to that point of not wanting to live. He had CFS, though. I'm not sure if that's what you have. Instead of killing himself, he invented a way of healing himself. He called it "extreme mold avoidance". He discovered by paying attention to when he felt better and worse that being around toxic mold made him worse.

    Now he manages his symptoms so well that he is able to climb mountains. So there is always hope. Please don't give up.

  4. wanderingbluedragon

    wanderingbluedragon New Member

    I think that you will find that most of us feel the same way. I was a hard working career gal, who made it up from the welfare ranks after my divorce with two children, working full time and going to college full time. I then added another child and a husband to my family and I am truly grateful. I struggled for a little over 2 years at work before it became too hard to do anything but sleep, work, and see doctors. I left my career and just couldn't do it any more. I tried to commit suicide because I felt like such a failure and because no doctor would take my pain seriously. I have heard it all from them, exercise..walk at least 30 mins a day (I tried to walk 30 min 3 times a week and it about killed me, I tried walking 10 mins a day and I was able to do it for four consecutive days before it put me down for a week), trigger point injections 2x every two weeks (they are sooo painful, can't figure out if it is one of those situations where the cure is worse than the disease), pills for sleep because you can't sleep when you need to and pills to stay awake because you sleep when you need to be awake, depression medicine, I had two ruptured disks in my neck as well so physical therapy, massage once a week (which i wish i could do again), epidural steroid injections (ouch), surgery (fusion in my neck) and the list goes on and on.

    I now am trying to get SSDI and just got my first denial because I have no insurance due to leaving my job and so havent been able to see a doc in the last 6 months. The SSDI ppl said that my condition isn't severe enough, even though I have FM, ME/CFS, Chronic Epstienn Barr, IBS, Bipolar disorder, ADHD, PTSD, and anxiety. I tried committing suicide in June 2008 and have narrowly escaped being involuntarily checked in to the looney bin several times. They say that a part time job is "substantial work" and that I should be able to do it.

    My poor husband does not sleep and goes to work and works his brains out. I cannot handle the bills any more so he gets all the stress of dealing with that as well, I cannot drive atm so he does all the shopping, I have been out of my home only 6 times in the last 7 months.

    I know what it is like to hate this and hate it with a passion. I have had to assign chores to my children to help me keep up the house because I just cannot do it, I'm too tired and hurt too bad.

    I have had to learn that I need to appreciate the good things in life. There are wonderful books out there and movies to be seen. I love seeing the joy in my children's faces when they show me they are proud of something they've done. They write me love notes and draw me pictures. My husband loves me and may not alwasy understand what i'm going through, but supports me none the less.

    You have to find pleasure in the little things in life, it isn't easy for sure and I have my bad days as well (today is one of them). I scared the life out of my husband that day and I don't want to do that to him again..it would just hurt him more than I could ever hurt him by being a burden. I watched a video on youtube the other day and there was a man on there talking about his wife who had FM and killed herself. It was very sad and very eye opening to me...look what I had almost done to my loved ones.

    From my experience..nothing really helps the pain..it sucks..but I'm willing to live with it if the people in my life, who love me, are willing to take some of my burdens.

    I'm sure your family would feel the same way for you. Please think about that before you make any hasty decisions. I would also recommend some counseling so you have a neutral party to vent to.

    Your friend,

  5. Janalynn

    Janalynn New Member

    You are not alone. I understand completely where you are coming from. I could not make it if I did not have something for the pain.

    People just do not understand this kind of pain. It's not like "I hurt". I "hurt" so badly yesterday morning (and many many times), that I literally can't think, I can't talk, my brain shuts down.

    I have had that talk with my rheumatologist - the 'what then' conversation. He relieved my fears and said, "we'll change doses' - there are a lot of different combos, doses, quantities etc that you can go to, regardless of what you're on now.

    TRY not to worry about way down the road right now. As someone else said, that is adding stress to you which you do not need!

    I admit, I've said to myself, if I didn't have something for the pain, I could NOT live - because I simply couldn't function in that much discomfort. BUT...I will not leave my family, so I will have to figure a way to make life better. Remember, your pain will only be transferred to the people you have left - only tenfold. Your family would rather have you here, regardless of your situation than not here.

    Please know..I do understand, I really do.
  6. gotdirt

    gotdirt New Member

    don't feel like the lone ranger on that one. I too have a plan all laid out. thought a lot about it and how I will do it. went to a bishop of my church but could not tell him. he did not seem to want to help me for the other problem I went to him for. I have no support system. my kids don't really understand how hard it is for me. even though my son might have undiagnosed fibro. they live in another state. my boyfriend has given me a lot of money, but does not want to hear about my illness. my disability ended 2 weeks ago. and cannot live off unemployment. I lost my rental house of 6 years last feb. and have lived in hotels since. but that has come to and end and I am back living in my car. really good for my stress level and self esteem!! funny how your friends disappear when you are down and out. funny thing is my sister owes me $13,333. from my mom's estate for over a month. think she is trying to keep the whole estate for herself. might have to hire an attorney. even the financial adviser says he is not going to follow the will. what kind of crap is that??? several of my friends got screwed out the will too. I could get a place to live with that. so I really can relate to ending it all. if life does not improve soon I might go there.
  7. CanBrit

    CanBrit Member

    I know you're afraid. I am too, but we do overcome. I had to stop work last July because my FM so acute. It's important that you remember that there are those who love you and are there for you. If I could take all this pain away for you, myself, everyone here, I would.

    Have you gone back to your Dr. regarding your pain meds. I had to have mine adjusted several times. I know it doesn't take it away, but you may need more or a different kind. Are you taking something for depression? I'm on Zoloft which I find helps me a little bit.

    With our conditions, it's important not to isolate ourselves. We need support, we do need help. We are not a burden to anyone, we are sick. We didn't choose to be, but we are and we must accept it.

    I wish you all the best and hope that you have brighter and happier days.

  8. discoverygal

    discoverygal New Member

    Thank you thank you thank you.

    Although my situation is bad, some of you are living with much worse and you are finding a reason to go on. I am reading your responses and am so grateful for you.

    My husband loves me so much and is so worried about my physical and emotional state, I hate to put him through this worry for the emotional rut I am in. You all have said things I needed to hear about my family and my life.

    Thank you so much.