Advice? I usually know what to do, but not this time.

Discussion in 'Fibromyalgia Main Forum' started by ranger, Aug 30, 2003.

  1. ranger

    ranger New Member

    As you may know, I have been in a flare since the start of August. Newfound shoulder pains, lower back aches all day and I can't bend over. No joke. Maybe I should bend over and let someone kick me out of all this into a place where there is no pain. Now the trouble is, my husband and I are invited to a wedding in mid September, including a hour and a half drive to and from. That's the part that bothers me, not to mention the idea that I do not think I will be comfortable to do the wedding and subsequent festivities. It's like I had to say yes or the in-laws would roll their eyes again. (close family friend of theirs) Then, a week after this wedding, there is a fall picnic at another trip back there. At this point I can't picture being able to do any of this. They would say, how do you know you can't? (i don't-but they want an answer). I just am forseeing the fact that I am not going to heal whatever made my back worse by this month's end,(Sept). I am in worse pain since Aug. and even end of July and I know it is not like my everyday pain and fatigue from b4 all this. I have been worse. I am so confused. I don't like events hanging in front of me like this, when I can't make any promises. I was waiting until these weekends arrive to determine my ability. Perhaps a visit with the doc, for x-rays or whatever? He put me back on Neurtontin 2 weeks or so ago. I don't know what else he can do? I am going crazy and this stress is not a pleasant companion.
    I'm not strong enough to put all this in perspective.
    Help my jumpled thoughts please.
    [This Message was Edited on 08/30/2003]
  2. Shirl

    Shirl New Member

    Don't know if you can do like I do, but if I were in your place (and I have been more times than not), I would simply wait for the weekend or day the events take place, IF I felt up to doing them I would, if not I would simply say that magic word 'NO', that has become second nature to me.

    I have even went to a reception, and skipped the wedding ceremony, then another occasion, I went to the ceremony, and skipped the reception! I could make one, but not both.

    As for the family picnic, if you feel up to it, go late that way you don't need to spend an entire day, or give excuses why you are leaving early, or if you feel bad don't go at all.

    Stressing over these coming events will only make you feel worst than you do.
    I would say that is 'worrying' about something that is not so very important anyway. Your health comes first, and formost.

    If people can't accept you as you are, then don't let them worry you at all.

    Thats my take on it, and no gets a 'yes' out of me for any function anymore. What I tell everyone is; 'if I feel I can make it, then I will be there'. Thats the best any of us can do.

    HOpe you get it all worked out, and in the mean time, quit worrying about what others think! It won't change your life one way or the other anyhow.

    Shalom, Shirl

  3. PatioGazer

    PatioGazer New Member

    Hi ranger! Part of your post really struck a chord with me because I totally have to wait until "go time" to decide if I can do something or not (usually not.) Making plans, even for later in the day, is just something I cannot do right now, and haven't been able to do for over two years.
    So what if the in-laws roll their eyes?!? Roll A-WAY!!!You have to look out for YOU! Just tell them the truth: that you are planning to go but that you may change your mind based on how you are feeling the morning of the event. If for some reason that is not good enough for them, then just tell them that you're sorry, but if they need an iron-clad answer today then you'll have to decline the invitation. No one knows your situation and your pain better than you do, and you don't need to make excuses for it....Just be true to yourself!
  4. baybe

    baybe New Member

    You can only do what you can in the moment, that is part of this disease. One other thing I noticed in your post is that maybe you are still in the diagnosing or acceptance stage of this disease. You mentioned it being worse lately and trying different meds, also waiting for x-rays to see if maybe something that can change your state of health.
    While going throught this phase you need to take care of yourself and give yourself permission to sort out how you feel about what is going on and figure out what exactly you have. Some of these changes may be for good, maybe you have something totally different, but while you are still in a state of flux concerning where your diagnosis stands, it's pretty difficult to be getting together with people and explaining something you don't yet understand.
    Take your time and set a precedent of treating yourself well, it will make it all easier in the long run. Good luck with your process and enjoy whatever you decide to do, right now you have bigger fish to fry than a "friend of your in-laws offsprings wedding" Many hugs.
  5. jadibeler

    jadibeler New Member

    I do what the others have said, just say "It depends on how I feel". I didn't always, though. I would say yes, I would be there (often really looked forward to it), then have to let people down at the last minute. I try never to make actual appointments, and never for the morning.

    Maybe if we didn't try to look good, people would take us more seriously. Ever think of that? Use a cane, don't try to stand up straight when you can't. Go lie down when you need to. My cousin just told me she can't do something she wants to do with her son because there's too much walking. I told her to rent a wheelchair - silence. Then she admitted that it's pride keeping her from doing so. Nonsense! Let people SEE that you are not well. I read here all the time that people are trying to put up a good front. Why?? That only reinforces the opinion that you are really OK.

    I do have one suggestion if you do want to go to the wedding or the picnic. Is it possible for you to rent a small motorhome for the day, or better yet, overnight? In many areas, like where we live, older ones can even be purchased for as little as $2,000. My husband and I did this (bought)just so that we could attend functions that were too far away to make a round trip. I would make the trip in bed. I had a bathroom right there, a fridge, all the comforts of home. Park it in the driveway when you get there, in the reception hall parking lot. Spend the night in Walmart's parking lot (We RVer's call it Wally World RV Park). You are welcome there. If you get too tired, you can excuse yourself and go take a nap while your family continues to enjoy the function. It was also great for visiting overnight when we'd rather have our own little "house" to retire to if we were ready for bed before our hosts.

    We have attended weddings, gatherings, festivals, visited relatives & friends, arrived the night before so that we could be fresh and in relatively good condition for the event. Now we live where nothing is close - decent shopping, hospitals, specialists. This has been a lifesaver for us. If we are parked at someone's house, we run a heavy duty electric cord. If not, motorhomes have generators.

    Just a thought.

  6. ssMarilyn

    ssMarilyn New Member

    This RV idea is exactly what we are thinking of. I can never guarantee I can do anything until the exact moment, so we thought an RV would be perfect. We also want to do some traveling, but I find it almost impossible to sit in the car for long periods of time. Not only do I get stiff and uncomfortable, sometimes I get nausea, or anxiety, and need to be able to get up and move around. RVing is a super way to's a bed on the road, and just my style! My own bedroom, my own potty, my own living room, my own tv, my own kitchen, my own everything! We also want to take our 2 little dogs with us, as they are a source of comfort for both me and my husband.

    Marilyn :)
  7. ranger

    ranger New Member

    Hearing from others reaffirms what I should have been thinking all along. I was letting guilt get to me.
    -baybe; I do feel that lately, something more than FMS is going on. I doubt there is, I just remember better days. But thanks for getting me back on the reality train.
    -Shirl; You are absolutely truthful. You gently knocked some sense into me too.
    -jadibeler; I am a little tired of going to places, houses, etc. and then having to go sit somewhere alone by myself. (No offense):) But the motorhome/RV idea sounds like a great one. No $ now for such a think, but I'll bring it up to my husband soon.
    -ssmarilyn; You liked that Rv idea too. Good one. Someday.
    -Patiogazer; I agree. Let them roll thier eyes. When it comes to that date, if I decide to bail out, my hubby could go alone. I like your nickname!
    -Cureforpain; Does Miss Manners sell a book? Good advice.
    Thank you all for your reminders. I was letting them reign their thrown again. It's my life. I've been worrying about others feelings all my life.
    (A mom)
    [This Message was Edited on 08/31/2003]
    [This Message was Edited on 08/31/2003]
  8. NanceZ

    NanceZ New Member

    We often who have thesekind of illnesses are giving people who like to keep people happy. One of the biggest lessons we need to learn (I think) is to take care of ourselves first.....and only then do we consider invitations and the like.

    I was rollign right along gettign stronger when the power went out in Detroit and my sister and her new husband came to stay due to their having no power. They are both handicapped and man that 30 hours with them set me back like I couldn't have imagined. Next time I will really say no, or I will let them come here and I will leave.

    I will never get truly better if I can't be peaceful about taking care of me first. I'm certain of that. Then next I need to take care of my kids..

    Good luck I know it isn't easy by any means.
  9. Mikie

    Mikie Moderator

    If someone rolls his or her eyes. You are sick and it's up to you to take care of yourself. When you let others dictate what you do, you are not taking care of yourself. It is perfectly acceptable for someone who is chronically to say, "I will be happy to, if I am up to it."

    Your family already knows that they can bully you into doing things, so it may take a bit for them to come to grips with your taking charge of yourself and your healing. It is their problem, not yours.

    Our illnesses require that we make some serious decisions. Whether we continue with relationships with loved ones is one of those decisions, unfortunately. If a family member becomes toxic to us, we must get rid of that relationship and I know that's not easy to do. My feeling is, how dare these people treat you so cruelly by rolling their eyes and trying to make you feel bad. Shame on them. They are supposed to love and support you. It is not up to them to make judgements about your health. You know what you are capable of doing and not doing. Take charge of your life. Good luck to you.

    Love, Mikie
  10. ranger

    ranger New Member

    I can't end the relationship of these people, being my husbands family, but that doesn't mean I have to care what they understand and think about my disease. They still think Fibromyalgia is like any other disease. That it can go away once in a while, because they see me make it to an event. They don't know, and don't want to know that I am there with pain and a false sense of being well. In reality I am drugged on my meds, grinning and bearing it and trying to get through the day. When I have to leave early, they are all like, "Oh really?" and "I thought you were doing so well today." Did they ask me how I was? I may not have even wanted to give them the whole picture of how I felt, because they become uninterested as soon as I start, (giving me the impression that they don't want to hear it, or they don't want to accept it.)
    Problem I think with mother in law is that she has met others with FMS and does not see them as needy as me. One or two she has met are still working. I try to tell her that there are varying degrees of us. I used to be out there working and paying for it. Things got worse. It's like the more I say, the worse their attitude becomes. The less I say, the more they begin to feel that I am okay, well, healed. It's a vicious circle. My hubby could step in and talk to them, as he believes and helps me. But I think he is too shy to stand up to his mother and fight for my respect. I've tried, but still get the glances and the silence, after I have explained myself. I give up.

  11. Mikie

    Mikie Moderator

    I am so sorry that this ugly situation is so stressful for you. If they continue treating you like this, your hubby may have to step in and talk to his mother. If he does, it should be done in an atmosphere of calm and not when things are tense. He can do it in a loving way and it will be up to her whether to act like a loving mother/mother-in-law or to continue acting so childish. You should not have to justify yourself to anyone. Bless you and good luck.

    Love, Mikie