HOW DO YOU DEAL WITH THE "LONELINESS" OF THIS DISEASE?

Discussion in 'Fibromyalgia Main Forum' started by catgal, Dec 8, 2002.

  1. catgal

    catgal New Member

    I'm 53, work three days a week, and have had FM/CFS for 35 years, severe asthma since birth, osteo & rheumatoid arthritis as I got older, and was diagnosed with advanced degenerative disc disease (ddd) last year.

    The ddd got so advanced because I thought all the pain I had all over my body including my back was from FM. Major mistake.

    I live in an isolated part of the Rocky Mountains with a mate, 5 cats, and one dog. I live a long ways off from my family and best friend. But even if they lived close, I wouldn't bore them with all my aches & pains. I don't bore my mate about all my maladies although he can tell I don't feel well on various days. And, I often feel bad or guilty because he wants to go places and do things on weekends, but sometimes I am just too worn out putting up with the pain and everything else that goes with my illnesses. I often feel like he is a "victim" of my disease without having the illness.

    People ask me how I am, and I just say "fine" because I see no point in going into it all.

    I lay awake at night and hurt; I go to work in pain; I have been on narcotic pain management for the past 17 months for the ddd which also helps with the FM and arthritis, but after 17 months on the same dosages--the meds are no longer effective, and I have been undermedicated since April and need to have my physician re-evaluate my meds and up the dosage which I am reluctant to do. I have lost 35 pounds in the past two months because I have no appetite due to the pain & weariness. Depression has set in. The harsh winds and cold climate chill me to the bone and make the aching and pain worse. Seems I can never get warm. My bones feel like shattered glass.

    Yet, other than this Board there is no one to talk to. My memory is gone, and I forget things all the time, can't remember how to spell words, lose my train of thought mid-sentence. I've missed more work this year due to being sick than in my entire career. When one thing flares up--everything flares up, and I am bedridden--much to the frustration of my mate. I have to work as I am my sole financial support. My mate is too indebt with his own finances to even help with the household bills. And no one wants to hear how miserable you are all the time. And so I suffer in silence, and it gets to be a very LONELY experience of living. All this pain, aching, and fatigue running around in my head day & night with no outlet. I'd see a therapist~~but I am a therapist.

    I wonder what do others do who suffer in a silent world of pain as I do? I keep a journal, and I think that is the only thing that keeps me sane. The continual aching of the FM was bad enough, but the pain in my back from 3 degenerated discs, a shattered vertebrae, and multiple other back problems gets to be unbearable. I tire so easily from the pain and chronic fatigue that after working 3 days a week, I have nothing left to keep the house up, but I do what I can.

    It feels so lonely living inside a body wracked with pain all the time and knowing that no one wants to hear how miserable you are--I would just sound like a recording saying the same thing over & over.

    I am in alot of pain this weekend with everything flaring and just feeling down. Such a silent, lonely, painful way to live.

    HOW DO YOU (anyone)DEAL WITH the LONELINESS OF THIS DISEASE? I would appreciate any reponses. Thanks, Carol....
  2. catgal

    catgal New Member

    I'm 53, work three days a week, and have had FM/CFS for 35 years, severe asthma since birth, osteo & rheumatoid arthritis as I got older, and was diagnosed with advanced degenerative disc disease (ddd) last year.

    The ddd got so advanced because I thought all the pain I had all over my body including my back was from FM. Major mistake.

    I live in an isolated part of the Rocky Mountains with a mate, 5 cats, and one dog. I live a long ways off from my family and best friend. But even if they lived close, I wouldn't bore them with all my aches & pains. I don't bore my mate about all my maladies although he can tell I don't feel well on various days. And, I often feel bad or guilty because he wants to go places and do things on weekends, but sometimes I am just too worn out putting up with the pain and everything else that goes with my illnesses. I often feel like he is a "victim" of my disease without having the illness.

    People ask me how I am, and I just say "fine" because I see no point in going into it all.

    I lay awake at night and hurt; I go to work in pain; I have been on narcotic pain management for the past 17 months for the ddd which also helps with the FM and arthritis, but after 17 months on the same dosages--the meds are no longer effective, and I have been undermedicated since April and need to have my physician re-evaluate my meds and up the dosage which I am reluctant to do. I have lost 35 pounds in the past two months because I have no appetite due to the pain & weariness. Depression has set in. The harsh winds and cold climate chill me to the bone and make the aching and pain worse. Seems I can never get warm. My bones feel like shattered glass.

    Yet, other than this Board there is no one to talk to. My memory is gone, and I forget things all the time, can't remember how to spell words, lose my train of thought mid-sentence. I've missed more work this year due to being sick than in my entire career. When one thing flares up--everything flares up, and I am bedridden--much to the frustration of my mate. I have to work as I am my sole financial support. My mate is too indebt with his own finances to even help with the household bills. And no one wants to hear how miserable you are all the time. And so I suffer in silence, and it gets to be a very LONELY experience of living. All this pain, aching, and fatigue running around in my head day & night with no outlet. I'd see a therapist~~but I am a therapist.

    I wonder what do others do who suffer in a silent world of pain as I do? I keep a journal, and I think that is the only thing that keeps me sane. The continual aching of the FM was bad enough, but the pain in my back from 3 degenerated discs, a shattered vertebrae, and multiple other back problems gets to be unbearable. I tire so easily from the pain and chronic fatigue that after working 3 days a week, I have nothing left to keep the house up, but I do what I can.

    It feels so lonely living inside a body wracked with pain all the time and knowing that no one wants to hear how miserable you are--I would just sound like a recording saying the same thing over & over.

    I am in alot of pain this weekend with everything flaring and just feeling down. Such a silent, lonely, painful way to live.

    HOW DO YOU (anyone)DEAL WITH the LONELINESS OF THIS DISEASE? I would appreciate any reponses. Thanks, Carol....
  3. nitalynn

    nitalynn New Member

    I don't respond alot to things I read here but I felt I must respond to yours. I'm no doctor but due to your weight loss, I feel it is very important that you see a doctor as soon as reasonably possible. 35 lbs. in two months is not normal even for someone in a great deal of pain. Please do this, please, please, please.
  4. sofy

    sofy New Member

    I am 58 alone except for small dog. The isolation is the worst part. Had to quit work end of Aug. so now my people contact is limited to the check out people in the stores. With only one family membrer an hour away life is lonely but I know I will find a new way to live it just hasnt come to me yet. im the eternal optimist and self reliant person so I know its just around the corner. I try to look for what I do have each day instead of what i have lost. you have a mate and a job. try to make the very most of these relationships. reach out and bring these people into your circle by asking them about themselves and thinking about how you can make each encounter better. that way you have a positive focus with each personal contact. try to look at each person and see what you like in less than 30 seconds and then tell them. it might be that the color of their blouse is your favorite color but it is a positive and it makes you both feel good. it really is the little things that make life meaningful. You cant save the world but you can make this minute and this person you are with feel better and this triumph makes you feel better about yourself and makes you forget about your illness for just a short period of time and not be so mastered by it.
  5. kadywill

    kadywill New Member

    I fear I am no one to advise, as I am in pain and am very depressed for the past four days as well. The snow and ice have caused a routine change and my husband has been here all these days recently and I can't do a thing I normally do in the house with him in the way, so I have just watched movies on TV. The lack of movement has worsened my pain and I am frustrated that I feel so trapped inside this house. I have just been out of work three weeks and have felt good regarding my pain management and routine during that time, until now. My husband, too, gets tired of this.....
    I understand; that's all I can say. As a therapist, you know what SHOULD be done to make you feel more at peace with your illness, but it is so hard to be objective when you are suffering with it yourself. As a nurse, I find it hard to "advise" myself, too. This is why physician's shouldn't treat themselves or their families.....so, please see another therapist. Surely you know one who would see you pro bono as a professional curtesy. Talk to your doctor about a dosage change~~this is not unreasonable. Now, you ARE depressed and losing too much weight and too quickly...you know this! The doc needs to know about this, too, so he can treat this problem as well. You know the signs to look for. Don't let this go any farther......
    Keep in touch with us, as we all understand what you're feeling. I sure do.
    With love and much empathy!!!
    Kady
  6. mellow

    mellow New Member

    You really are having a terrible time. I think you should be seeing a doctor, if you aren't already. The weight loss is too much in such a short time. You say you are depressed and it is no wonder given the pain you are suffering. I know when I have been depressed I can't eat and lose weight very quickly. Are you on any meds. for the depression? These can help. The cold obviously affects your pain level too so I don't know whether you have thought of moving to a warmer climate. I know this isn't always easy what with jobs and everything. I wonder if your family might be able to help in some way? You sound very isolated from close contact with family and friends and I think we need these people to help us get through the bad times. This is a very isolating illness and few people understand the pain and loneliness that people can experience. Please see someone about the depression as this can be helped and let us know how you are doing. Love Mellow
  7. pepper

    pepper New Member

    You are so right. This disease is so isolating and the loneliness for me too often becomes unbearable. You can't expect your mate to understand because he doesn't live it. I have a husband and two sons and have given up trying to make them understand. They can to a certain point but when you say you "can't" do certain things, I think that they still think that there is a lot of "won't" there - when there isn't.

    Even though you are a therapist, I think you should see one yourself. My sister is a therapist who recently went through a nasty divorce. Going to therapy for the first time in her life was very helpful.

    Is there anyone with this illness in your area that you could talk to? I have one friend who is equally ill and it helps so much to talk to her every day, even if it is a very brief conversation. Being in an isolated area, this might not be possible for you but it would be so helpful to find someone who could relate to how you are feeling.

    Meanwhile, I hope this board can help you and validate you. Sending you ((HUGS)) and understanding. Pepper
  8. catgal

    catgal New Member

    I try and stay in Good Spirits most of the time and am generally a positive person. Being a therapist for over 25 years and being on my own personal spiritual journey, I do cherish my contacts with people and always seek out their good qualities. That is one of the major reasons I continue to work besides the fact that I have to in order to support myself. However, it is impossible to be "Mary Poppins" every day of your life, and there are times when you are just DOWN, and this is one of those times for me. Many of my friends here are therapists, and so that rules out seeing them as "professional therapists", and the closest other mental health agencies are six hours round trip over the mountains. There are few resources here; I live in a small village that has a post office, a cafe, and a trading post.

    I have talked to my physician about my rapid weight loss, but all he said was I had needed to lose the weight anyway to take the pressure off my back. Since I don't have insurance, only have a part-time paycheck, and my medical expenses already run me $400 a month, he doesn't order further tests as he knows I can't afford them. He appears more concerned about my "life-threatening asthma" than anything else. As far as the FM/CFS, he ignores that. He just told me once that FM was a conglomeration of symtoms and thus very difficult to treat; that very little was factually known about it; that it did not show up on tests and thus lacked evidence, and therefore many physicians didn't even acknowledge it.

    It has been cold, windy, and icy here this weekend, and it was a very busy and tough week at work last week. I over did it, and everything went into a flare. The holidays are coming up, and I had so many things that needed to be done this weekend before leaving for Oklahoma in two weeks to see my family for Christmas. But alas, I have been bedridden since Friday, and none of the errands or shopping got done. The piles of laundry glare at me; the kitchen is a mess; the house needs cleaned; floors need mopped; there is no food in house because I was too exhausted after I got off work to do the grocery shopping; my mate feels isolated and neglected because I've haven't felt good enough to do anything with him this weekend. Meds are inneffective. And all that needed to be done this weekend is going to be doubled up on top of all the stuff I need to do next weekend before I leave for Oklahoma. I feel exhausted just thinking about it all, and I have to work next week.

    Well, I feel like I'm just whining. Just a bad & painful weekend in flares. Thanks for listening, and I truly appreciate your replies. Blessings, Carol....
  9. teach6

    teach6 New Member

    I'm sorry to hear you are having such a rough time of it right now. I remember how lonely I felt a little over a year ago when I was unable to work, go to church, or attend any of my previoius activities.

    At the time what kept me going were two longtime friends who also live with chronic illnesses. One called me regularly two or three times a week and the other IM'd and emailed me almost daily.

    Thankfully I improved enough that I can now get out and attend a few functions with other people. I have been lucky enough to keep a small business going through all this and when I work it I am out with people, which is a double blessing for me. I make certain activities priorities in my life because I know they will be a chance for me to interact with others.

    Posting on this board has also been a social outlet for me. When I am feeling lousy and don't have the energy to be with others I can always come here and post about it, or answer others questions. I almost always come away feeling better than when I got here.

    I agree with the others who said you should see a doctor now. If your pain is so bad that you are not eating something needs to be done.

    I also wonder why you think you cannot see a therapist since you are one. Over the years I have had several friends who are therapists and many of them have also gone to counseling themselves. Often we can be really good at telling other people how they should live, but cannot do it ourselves, no matter how hard we try.

    Take good care of yourself. If you don't it doesn't sound like anyone else will either. Please let us know how you are doing and when you go to the doctor.

    Barbara



  10. nitalynn

    nitalynn New Member

    I know you don't want to have any bloodtest done because of the cost but if you haven't had a thyroid test done lately it might be a good idea.
    I check this board almost every day. Pleas let us know how you are doing.
  11. JP

    JP New Member

    Hello Carol,

    I can only take this stuff a day at a time, sometimes an hour at a time. There is a part of me that loves to be alone...even more so with this chronic pain condition. I work pretty hard to stay out of my head. There was a distant past when I was very forward looking, planing, shaping my life. I now deal with each moment as it comes (for the most part). I wish I had some special magic to send your way. I can relate with so much of what you are sharing.

    I would encourage you to follow up with your doctor on the weight loss.

    Be kind to yourself, Jan



  12. LisaMay

    LisaMay New Member

    isn't easy. Some days I wish I could just disappear and nobody would have to worry about me. But that's just the depression talking. I also keep a journal. My doctor said it would help. I guess it helps somewhat. He also suggested writing a phantom letter to someone that has left this earth that you loved very much. I did this for my grandma and WOW! I felt so uplifted I could fly (maybe that was just the meds - LOL). My social circle has always been on the small side so it doesn't bother me that I only see friends once a week. As a child I was self-entertaining. At the moment I'm not working and I really miss that. I'm not sure whether I'll be able to return or not. I've thought about volunteering 1 day a week at the local senior center. They are just about my speed and bet it would be a lot of fun hearing the tales from their lives.

    These last few weeks have been very trying. I hope you find your way to coping with the loneliness. Hugs, Lisa
  13. evileva

    evileva New Member

    I found your story to be very touching. I try to keep a positive attitude, it's not always possible for me but I try anyway. I think that the working is draining you, though I know you need to have income. My husband and I are currently separated and at the age of 48 I had to move back in with my parents, cause at this point in time I am unable to work. I also feel that it helps to be able to talk to the people here, since they know what we are going through. If you need to correspond with someone, I would be happy to. Hang in there.
    Eva
  14. Shirl

    Shirl New Member

    You sure are having a bad time right now. I am so sorry you are feeling so isolated and alone.

    No doubt that bad weather you are having is not helping you over all health and attitude.

    I live in Louisiana, and although it does not get as cold as you are describing, it is very damp and humid. That is always a trial for me.

    Sometimes I bundle up so much, I look like a teddy bear. The one thing that helps my back is an body hugging rid knit tee shirt, then I start putting layers of clothes on from there. Long underware is a must for me when its as damp as it is right now.

    As for people not understanding, well thats 'power for the course' with these illnesses! I have had this 20 years, and I am still battling my family to a degree.

    I think most of us do suffer in 'silence' with this, as it is of very little use to keep explaining how you feel, and no one really has a clue. The back pain just with the Fibro and three disks out of place is more than enough, but when you have all the other miseries that goes with this, then its awesome pain and agony. I have been living with the above for many years now.

    Your asthma is really bad, I don't have it, but my brother did. I used to hold my breathe when he had an attack! He would frighten me so badly that he would just keel over from the coughing.

    The memory thing is a heartbreak to me, I love to read, and serious tv programs, and I forget where I am in the book and have to go back and reread things.

    I have solved some of the problems, but all I take is supplements, and one prescription drug; Xanax, 0.25 milligrams at 6pm so that this racing brain will calm down and the ZMA and Melatonin can work to help me sleep deeply.

    I also drink half my body weight in ounces of water a day, that along with 'Ultra B-Complex (HIgh potency with Folic Acid), has helped the forgetfulness almost 80%. I can now read and not have to keep going over what I read! It has also helped with those 'lost' words when I am speaking to others too.

    I don't work, so its a lot easier for me, but when you do work it is so terribly hard to get up and go when all you want to do is stay in bed with a heating pad! I truly feel for you and hope things get better and you can relax more.

    As for these holidays, I wish they would abolish them! They are making so many of us ill, we are either working too much, or worrying too much. Neither one is good for our health, as it is so stressful.

    Yes, I live in this body too, and I don't complain, if it helped I would just scream it to the world. But no one really understands anyway.

    I am isolated to an extent too. I live in the country, the closest store is at least 15 miles away, and I quit driving because of the back pain.
    I have no friends in this area as I am new here, and the people in this area are not very friendly. My daughter is the closest to me, and of course she has her life to live too, I don't interfere with her life, when she has free time, we shop and eat out etc.
    My husband works off-shore for an oil company and he is gone off and on for six months out of a year, home for a week or two and gone for the same time, right now he will be home for a month, and I am about to climb the walls with him underfoot 24/7! He is helpful, but I don't get my rest like when I am alone.
    So I am alone a great deal. My five dogs are my constant companions, they are the greatest, and keep my spirits up a whole lot!

    I have my books, the computer and a few close friends here from the board, and a few 'phone' friends that I speak to now and then who live in other states. I do not discuss my DD with them. If you do, then you are given then a 'lesson' in Fibro, as most have not even heard of this!

    Its an illness that you have to live day by day, and sometimes hour by hour with.

    I make no long term plans or committments, I just say I will be there if I can, do not give reasons anymore.

    I try to keep myself occupied, and I have a tendency to be a loner anyway, so it works out for me. I don't feel lonely, so much as disappointed that people are so uncaring.

    I guess I like my own company, and its a good thing I do!

    You take care, and I do hope you get to feeling better soon.

    Please come here as there is always someone to talk to that truly understands, and is willing to listen. We have the greatest group of people on this board as I have ever seen anywhere in the real world!

    Shalom, Shirl




    [This Message was Edited on 12/08/2002]
  15. klutzo

    klutzo New Member

    Ditto everything the others have said. I just want to add that I am a Psychiatric Social Worker (or was before FMS put me on SSD), so I know how you feel about not seeing a therapist. I suffered for 17 yrs. and just started seeing someone 3 wks. ago. After only one appt. I felt like a weight had been lifted off of me. I know that you have seen these therapists in their "off" time so you know that they are not perfect, all-knowing Gods, and they have their problem areas in life too. That lack of separation makes it harder, I think, for us to trust their insights. In only one appt. I found myself wanting to correct her diagnosis of my problem, because I thought I knew better. I still feel it will be worth it to you. The relief of telling someone who didn't immediately judge me was immense. If you feel you just can't go that route, is there a clergyperson you could get some counselling from? My minister is one of my best friends, but that makes me less hesitant to go to her for help, not more so, because I don't have to fill in the background material, as she already knows me and what my private life and family are like. You have no reason to be embarrassed about having this illness and being up front about it with those who know you, you are doing a remarkable job of handling it and keeping on with life.
    In empathy,
    Klutzo