Too many problems, too little support...

Discussion in 'Fibromyalgia Main Forum' started by Jen F, Jul 16, 2003.

  1. Jen F

    Jen F New Member

    ...other than this board.

    I don't know how I will cope anymore.

    I am weaning off the Restoril and it is really hard. Tried to speak to doc on the phone today but he rushed me, wants me to come in -- i have other arrangements for tomorrow and Friday [Osteopath, homemaking help], and from my questions, he obviously does not have a lot of experience with benzo withdrawal. I am contacting an addiction centre which might be able to direct me to a doc with more experience.

    I am having some bothersome pain and discomfort with my neck, arm, shoulder thing. AT least it's not unbearable pain lately. Maybe, just maybe it is getting a little better.

    AFter 2 ER trips due to drug interaction, I don't want to take ANY drug right now, experience was so awful. I went through that alone. No family or friends with me or to phone.

    Friend that I DID call after 2ND ER trip is really stressed out right now himself, and doesn't know that he can handle me with all my problems anymore. In fact, he was YELLING at me while I felt deathly ill. If I want him to remain my friend I am supposed to adhere to a list of his requirements. He is using a toughlove method with me which I think he really thinks is justified. I don't. Well, not to a large extent. I don't think yelling at me while I felt deathly ill was appropriate. But, can I blame him if he just mentally can't handle it...he has his own problems and is very worried about me.

    I am willing to agree to SOME of his requirements. I am agreeing to force myself to exercise more, as difficult as it is. I am agreeing to be even more strident at avoiding sugar. I agreed to try to spend more time with people OTHER than him -- very hard for me to do since I don't have much light things to talk about, and it's hard for people my age to relate to me who don't have same kinds of health problems, but I'll give it a go. I will agree to try to rid my apt of some of the clutter that has piled up. I agree to continue my search for non-drug pain management options. I agree to continue the new psychotherapy I just started, [though I would rather some talk therapy, this is more of a feel your emotions and let them out spiritual psychotherapy].

    [I DO NOT agree to put my cat to sleep.]

    But, now, with the benzo withdrawal I am experiencing, I'm not even at the functional level I was at before getting sick on the 2 meds and I don't know how I will cope even with normal activities of daily living, let alone pushing these new activities.

    Also, friend accuses me of things that are not true, but hard to convince him otherwise. Makes one think of course of telling him to take a hike. But, if I lose his friendship, I will have NO good friend anymore. I have acquaintances only now...I lost a lot of close friends due to geographical moves and loss of my regular lifestyle. Hard to meet and make new ones when I can't get out much.

    Now, I also have come to a realization with my family...that they have to get on with their own lives and they are not there for me. This realization has been a long time coming, but sure is painful to have it fully manifest while I am this ill.

    4 years ago I had 2 granparents, an aunt, a father and a mother who lived far away but we spoke regularly and she cared at least somewhat, a half sister I saw once in a while, and a great uncle and great aunt I saw occasionally.

    Now I have a father who moved far away and is shall we say, somewhat LOST. My mother I may have to write off, no emotional support there anymore. Grandparents now dead. Aunt went very greedy with the Estate and tried to use me as a pawn in her arguments with my father over Estate and after 2 years we all ended up in a courthouse in April this spring - the stress terribly affected me and I felt so betrayed by her we no longer speak. Half sister I never see, her father died this year after an illness and she's very busy, also she believes FM is psychologically-based, so we are on different sides of the fence there. I can only contact great-uncle and great-aunt on rare times when i am having a half decent day, cause they need me to listen to their problems or talk only about good things, they don't understand C.F.S. They have no children of their own to take care of them if they need it. If I were well I would spend more time with them. I used to go at least once a month with them to visit my great grandmo in a nursing home prior to her death.

    I feel so alone and hopeless sometimes. I don't have adequate medical support. don't have enough emotional support. don't have enough fun, and have been suffering so much lately. It's hard for me to know where to start on the road to a fulfilling life.

    Maybe the benzo withdrawal thing will pass soon [I started tapering too much too soon] and I will be able to cope better, but right now I feel my life falling apart around me and I am so tired of doctors who look down at me and I have to argue with to get what I need and their desk staff who I think view me as a head case...

    I'd like to never have to go see an MD there again. but, to start with new MD takes a lot of effort and time. So, there is no quick fix to that either. How long til CFS is more understood????????

    How do I meet friend that I like because we are alike in thinking, not just alike because we both have CFS???

    I have been a member of 2 small CFS support groups which is where I met current best friend, previous best friend and have a number of acquaintances.

    These days I am often getting by one hour at a time.

    I wish somebody on this board could just say something that clicks and resonates within me to help me move forward in the way I need to.

    Thanks for reading or skimming this.

    Jen F
  2. Applyn59

    Applyn59 New Member

    ((()))Hugs
    You and I are both struggling with serious issues
    these days. They are different issues but very difficult for both of us these days.

    Your friend seems so stringent. I can't believe he
    behaves like that with you. However, look at my
    neighbor. She is very caring and helps me alot
    but she also says things to hurt me. She doesn't
    do it intentionally but she told me I have no reason
    to cry or be anxious! Be real!!! She says I have been
    dealt a crummy life and have to live it. She is telling
    me this in the midst of health crisis after health
    crisis. She knows I am worried sick about my mother
    and me. I don't' think she means to be mean but
    she sometimes shows no compassion for me.
    As far as I am concerned, I wish I were never born.

    on the other hand, she lets me use her hot tub,
    she washed my hair, she made several copies
    of med reports on her copy machine for me to take
    to lyme dr. She truly wants to help people yet she
    seems insensitive. She often makes me feel bad.
    I told her the other day that she makes me feel
    terrible when she makes certain statements.
    She will ramble on and on about how you have to
    work, work, work to make money and you just have
    to get out of bed and do it! I take that as a personal
    attack. I told her and she said she doesn't mean me.
    She always tells me that I should drive. Right now,
    after that tumble, I couldn't drive! Driving is the hardest
    thing for my back and neck. My feet get numb and I can't
    feel the pedals. She says so what. Plus, I have
    only just begun to go out and she expects me to drive?

    Do you know if there are any lyme doctors near
    you or if Lyme even exists there? If one person on
    another board did not mention lyme to me, I would
    never have considered it. She said every single
    symptom is the same as CFS. She said they are
    extremley thorough. I am actually almost getting excited about going because I know he can point me in the
    right direction somehow.

    I am feeling somewhat alone lately. It is mostly because my mother is so anxious and I have
    to keep secrets. I miss her as a sounding board, etc.
    Although, that probably adds to her stress. Half of
    her anxiety is about me and the other half is about other stuff.

    My brother is in germany but will be back soon.
    I have family that really cares and will help.
    Whether they understand or not is a different story.
    My mother understands everything perfectly.
    I have a childhood friend who will give the shirt
    off her back for me. She does not understand either
    though. She says everyone has been waiting for
    me to go to the dr. HELLO!! I have been bedridden
    this past year for a reason. I go to drs and I chase
    after alternatives and traditional. My friend cannot
    believe that a dr. won't order any test you want.
    She doesn't know what we are up against.

    Like you, I know no one in my shoes. My neighbor
    has multiple health problems, but she is married
    and owns a house (not to mention hot tub), is functioning normally, etc.

    She tends to disbelieve things that I tell her.
    I told her the dilating solution bothered me immensely
    years ago. She says,'Lynn , don't give me that. that
    isn't true." I don't know,Jen. She has had a hard
    life with bad health problems and she has no
    family support either. Her father never went to see
    her when she was in the hospital with serious problems, etc. However, like you, she will drop everything for him.

    I wish you and I lived closer. I think we could
    help each other. Do you have a live chat
    program like messenger or aim? Maybe
    we could chat live some time.

    Tomorrow is finally a free day for me. Friday
    I see my chiropractor. I am already worried
    about washing my hair! It is at least 8 inches
    shorter so it should be easier. I also just may
    wash the front.

    Can't remember what else you mentioned.
    The psych who was supposed to call me tonight
    do not call. I really don't care because I think the
    one we can get in with in two weeks is superior.
    I wish the dr. could prescribe for me, too. I will
    be going to the appts with her, but I assume he
    can't do that. Although. much of my anxiety and
    my mother's relates to eachother. I know places
    do family therapy so why can't there be family
    drugging? LOL

    Hope you feel better tomorrow. I really feel for you.
    I hope you know that. I didn't know you had a half-
    sister. Too bad you aren't close to each other.
    I have always wanted a sister.

    Take Care,
    Lynn
  3. Jen F

    Jen F New Member

    both from my father and my friend. Similar to your neighbour about your eye thing....

    One of my previous best girl friends didn't get my illness and said something like, if SHE were having problems that the doctors weren't giving answers for, SHE would go to the hospital and refuse to leave until they fixed her.

    I remember a time I might have thought like that. A time when I would not take no for an answer or accept defeat, always believed anything I wanted badly enough I would make happen. But, when she said that, it really hurt me. Like she was saying I just wasn't doing enough for myself. I figured, yeah, I'd like to see you try doing that at a hospital here in Ontario these days. They'd have little qualms I would think about having security forcibly escorting her out of there. Some people come up with these ideas in their heads which put the lack of cure and blame on you...you are just not doing enough to help yourself. Doesn't matter how much research I do, how many books I read and tests I pay for and special supplements I try, It's MY fault. A couple of other incidents combined with a change in her situation [moving in with man and her life was full of him then] led to the demise of our friendship. I asked her help with a couple of things when i really needed a friend and she wasn't there for me which I found difficult to accept. My expectations of people are a tad too high I guess. Mind you, one thing I asked her help with was rather important. It was when I realized I accidentally left my room door unlocked with my keys in it which were gone in the morning, I was sure the crack addicts living upstairs from me took the keys and I couldn't leave my house until someone could come and stay there or bring me some locks so I could change all my locks. Kind of a mini emergency situation.

    Yes, having crack addicts living above me for several months did not help my health -- high stress, but I was too sick to move at the time. They kept waking me up at all hours of the night. I tried speaking to detectives at the police station but they said there was little they could do. My landlord promised to evict them within 3 months -- evicton process takes a while here. But, when the 3 month day came and the police who HAD taken an interest came by to see them off, landlord had not filed papers properly and so Sherriff could do nothing. I finally lost my temper and stopped playing little miss innocent, which helped me to survive. I got into a verbal fight with the tenant upstairs who threatened my life, in a way that he could not be charged for [he wasn't stupid]. But, hey, that's another story... but one that contributed to a worsening of my health. Fortunately, when my father had some time, he helped me put up security things over all the windows and a few improvements to some doors to help me feel a LITTLE safer.

    Anyways, about your neighbour and my friend...yes they sometimes say cruel or non-understandign things and yet they can be very helpful too. So we are accepting the help we get and trying to cope with the lack of understanding they show otherwise...

    I need a break from suffering and I know you do too.

    WEll, I think I am finally feeling a tad sleepy so I should attempt to go to bed. I may have 2 appointments tomorrow, though I doubt i will be well enough given the last few afternoons.

    Hope you sleep.

    jen
  4. Iggy_RN

    Iggy_RN New Member

    I think most of us can relate to what you are saying. I see things much better and with more wisdom as I get older and wiser. Friendship is something that is unconditional. It is not something that comes with a contract or guidelines. I feel strongly about this. My belief is that if one has to work so hard at just being someones friend, there is a problem there. I think that you need to seriously look at this person, is she or he really a friend? Do they accept the worst and the best of you? Do they have their heart open when you need him/her the most? Do they truly respect you? I feel that respect is the most important thing in relationships. I have personally gone through a friendship that was once so wonderful, she was my sis-in-law. But it got ugly to make a long story short. I soon realized that she does not have any respect for me. (or herself even) She was and is like poison to me. One day shes fine the next day she treats me like a piece of cr**. I went thru this for a year or two. She even had the gall to ignore me and go thru her attitudes when we would be at family gatherings and such. To top it off she is my daughters godmother. Yes we once were very close. But now she is trying to be so nice to me again. It comes down to respect. I know that our friendship is gone. it hurts like hell, but as the saying goes,"get burned once, shame on you, get burned twice, shame on me!" Life is short. I am a nurse in training and I work w/alzheimers and hospice patients, these are terminally ill people, you do not know what could happen from one day to the next. Jen, lose focus of this person and focus on something new and wonderful, such as a new support group to go to, or even better, fill your spirit by going to your church and just let things fall into place. I know its hard with this illness and all. But make a contract to yourself to do this w/in a certain time frame. Change can be hard I know it is so hard for me, but it usually is very exciting and a true blessing in disguise!!! I will keep you in my prayers, Iggy
    [This Message was Edited on 07/17/2003]
  5. Jen F

    Jen F New Member

    I was going to bed, looked out the window and there right at the corner of the moon is a small reddish dot. Did an internet search and sure enough it's Mars!

    I am? used-to-be an astronomy buff, took a year of it in Univ, not that I remember all that much nowadays.

    but, I think it's awesome to know what planets are visible at what time and nice to know I can still recognize Mars.

    If you are up and near a window, take a look.

    Jen
  6. Jen F

    Jen F New Member

    I appreciate your thoughts.

    I find it too hard to get up early enough to make it to the church I sort of like and there are few people my age there it seems, but when I can manage it I will go there again. I do think I am more likely to meet kind compassionate giving people there.

    Thanks.

    Jen

    Good night all.
  7. elaine_p

    elaine_p New Member

    Regarding your friend, maybe he's setting limits to "protect" himself. Or maybe he has control issues? Who knows. But you have every right to set your own limits. Sounds like you're willing to be flexible, yet stand your ground. (Why would he want you to put your cat to sleep!?!?!)

    I'm in a similar situation in that I have one friend here. (And I'm not sure about her these days.) I moved 3 years ago, and it's awfully hard to make friends when you can't get out. I guess I have an advantage in that I went to school here 25 years ago, so in a sense I know people. But people my age are working when I have the energy to do things....

    My point in replying is about counseling. If you want to continue the psychotherapy you just started, go ahead. I don't know that it's so much the "title" or methods a person has/uses as the connection you have with them. (Maybe you "should" at least give it a few more sessions.) But if you want to have a certain type of therapy/counseling, I think you should pursue it rather than the type of therapy someone else wants you to have. (Unless they're willing to pay for it, and maybe not even then.)
  8. Applyn59

    Applyn59 New Member

    Damn, I missed Mars!!! I see enough dots as it
    is!

    Am getting ready to go in the hot tub soon and hopefully
    relax. I hope I can go there and not break down.
    I love it there but sometimes it does induce crying
    the way a shower can as well.

    Worrying about washing my hair for my chiro
    tomorrow already. I figure since it is shorter
    that I may be able to do it. Depending on how
    my neighbor is today, I may ask her or just
    ask if I can do my own in her sink. Her sink
    is much higher than ours is. She really
    loves to do all she can to help. I think
    she thinks I should do everything myself
    and doesn't realize that when I say washing
    my hair is difficult it means washing my hair effects me for days with the pain induced by doing it.

    Slowly, I think she is getting it more. I am always
    telling her that no two people are alike. SHe kept
    telling me yesterday that I am not trying enough meds.
    I try every new med I hear about as well as
    supplements. She says I need zoloft and ambien.
    I told her I have those and they do zilch. She thinks
    zoloft is the answer forl all patients with FMS and
    that if anyone takes zoloft and it doesn't work than
    they are being misdiagnosed for anxiety or whatever
    the reason they are taking it for.

    My life would be much more brutal without my
    neighbor. She really is a kind and giving soul.
    She just tends to make me think that I am
    not trying hard enough or that everything I say
    is untrue. I know she does not do this on
    purpose so I try not to let it bother me. We both
    really need this friendship. As much as she helps
    me, I know that she needs my friendship as much.
    She has major health problems and she is always
    butting her head upt against drs and she is trying
    to get herselfbetter too. So, we have that in common.

    Hope yo are feeling better.
    Lynn

    PS the psych who was supposed to call last night
    did not.
  9. Jen F

    Jen F New Member

    how you can need a certain friendship even though the person frequently hurts you or doesn't have a clue about important things in your life...

    it's such a tough call...

    If you are up again around 3, check out the night sky, Mars will probably be out near the moon again for a few days in the wee hours.

    Hope your chiro appt goes well tomorrow and that you had a nice time in the hot tub. It's okay to cry, my psychotherapist would say it is really good, lets out some of the emotional pain you would otherwise push down inside. The reason he thinks he might be helpful for me is because I was able to cry in his office first appointment. He encourages you to feel your emotions and release them.

    so, even if you feel a little uncomfortable, let it out if you can.

    take care.

    I'm getting by hour by hour. And this is my better part of the day...7ish til abot 11:00 or later is very bad now.

    J.
  10. Jen F

    Jen F New Member

    will keep the 15 min idea in mind. Probably will have to use that alot, esp in evenings which seems to be my worst time.