Cannot Make or Keep Plans and Appointments

Discussion in 'Fibromyalgia Main Forum' started by TeaBisqit, Jan 5, 2010.

  1. TeaBisqit

    TeaBisqit Member

    Anyone else get so stressed when they have to be somewhere because you don't know how you will be that day? I have a few things in the coming months where I have to be there and I'm just dreading it cause I don't know how I will be. I never know day to day how I will feel. I try to never make real plans anymore because I cannot keep any of them. I'm not reliable. I can't even volunteer for anything. I'd love to, but I can't. And I hate it when people ask me to be someplace because I don't like to say no, and if I say yes, I know I'll end up canceling.

    All this makes it a million times more stressful when I have to be someplace. And that can actually cause a flare, so it's like almost self perpetuating. I dread it, I worry about it, I make myself sick over it, and then I end up really flared out and sick like the night before I have to be someplace. And I really don't see a way to stop it. It's sort of a never ending cycle. I worry cause I'm sick, I get sick from worrying about how I'll be that day, it just doesn't end.
  2. FibroFay

    FibroFay New Member

    I could have written your post word for word! Yes, this is one of the most frustrating parts of these illnesses. I never know how to plan for anything. I try to go to medical appointments no matter how I feel. But, I don't even try to schedule social events anymore. I never can go to them.

    I'll bet there are many others here in the same boat.

    Hugs, Fay
  3. fight4acure

    fight4acure Member

    People do not understand. We want to be helpful but cannot be reliable due to our illness. I had to stop volunteering for the reason of not being able to make it. I did not worry about it so much, but knew that I couldn't complete duties at the assigned times, and could not do much of anything physical anymore, unless it was a few minutes worth of paperwork. I worked my but off for the agency, but now they do not bother to contact me because I asked to only do non-physical volunteer work and they need someone who will do physical work, apparently, and who will be reliable every day that the person is assigned to volunteer. I cannot offer reliability to them like I use to be able to. So, they cut ties with me and I accept that. I'm more sad about it than stressed. They lost a good volunteer, even though I could not make it every single time. It is not my worry, but I understand how worried you would get, because this illness does take away our lives.

    Fight :)
  4. AuntTammie

    AuntTammie New Member

    This is one of the things that I hate most about being so sick. I used to be incredibly reliable, and now I come across as the opposite if I actually try to do anything. I had reached the point in this illness, where if family or friends want to do something, I would tell them that I would love to (if that was the case, and it usually was/is), but that I honestly never know how I am going to be feeling until the last minute. So, if they needed a firm commitment from me, I would have to say no, but if they were ok with more tentative plans, I would say maybe. (Unfortunately, at this point, I so seldom feel up to anything, that I don't even give this answer all that frequently. Most of the time, I just say that I wish I could, but I am just not well enough.)

    Now when it comes to Drs, that is a whole other story. I am blessed to have found a regular Dr who understands and who was willing to conduct my last appt over the phone. I also have a counselor who I have done many phone sessions with.

    I have a foot doc that I have to see fairly often (long story, but I had major surgery on my foot and ankle yrs ago and have to wear orthotics and when getting a new pair, it requires several visits for adjustments, etc). I am in the middle of that process now, was hoping to make it in to his office today, in fact, and am having a really hard time getting back and forth to get this pair rt. Unfortunately, the only time he is in the nearest office is Fri mornings (impossible for me to function in the AM) and Tues afternoons (still very hard for me to get there before he leaves). He is very understanding, thank God, and so is his receptionist, so I literally call them an hour or two before the end of their day on a tues, if I am up to going in, and they will fit me in. However, it is getting to the point where it is so hard for me to get there, I wind up stressing the night before about whether I will be able to make it in, or not, and then I don't sleep well at all (which obviously makes it far less likely I will get there). I realize that I am incredibly blessed to have a Dr who will do this last minute scheduling thing, and I do really appreciate it, but even with that, I am beginning to get very stressed about these "appts". (Bc of my situation, this round with the orthotics has already been going on for a lot of months). If having proper orthotics wasn't so vital I would probably have just given up by now.

    And, then there's the fact that I need to get in for an ultra sound sometime soon (major issues with nausea, vomiting, etc). I have no idea how I am going to manage to get wherever and keep the appt, so I have not yet made it. And, I also really need to make appts with quite a few other specialists, but aside from the fact that I can't afford to see them, I also have no idea how I would be able to keep those appts. Those are the ones where I would only have to go in for a few appts. and tests. There are also people like the chiropractor and an OT who could possibly also help quite a bit, but for those you usually have to be there one or more time a week - no way could I do that! I wish we could go back to the days of house calls. That is about the only way I could handle most of these.

    As to volunteering, I wish I could do that, too. I tried to talk to someone at my church about this possibility a little over a yr ago. I asked if there was anything that I could do that would be on my own time, so I didn't have to risk letting anyone down, if they were counting on me to be somewhere. They just did not understand that all the volunteer possibilities that recommended were not doable for me. They seemed to think that it was unreasonable to be unable to predict how I would be feeling, considering that some of the possibilities were only once a week! Ugh! I wish I had said, "Sorry guys, but this is my life. If it is hard for you to deal with, and for you to find a place where I can be of help, then try to imagine how it feels to be me." At the time I didn't really say much at all, becasue I was somewhat speechless by the implied criticisms/insult and when I feel that way, my cognitive processing gets completely tangled up.

    I AM currently trying to start a chronic illness/chronic pain ministry there, and I think that if I can get enough support and back up, it may be possible. (And there are many very caring, understanding people there - just not the ones I originally talked to.) The only reason that it may work, though is that since I would be the one starting it, I could mandate flexibility into the parts where I would be needed. I could also make sure that the times I had to be there would be late enough in the day, and that if I absolutely could not be there, someone else would be able to take over.

    Anyway, said all that to say that I totally understand where you are coming from. I was sitting here getting upset about missing the foot Dr again (& thus having to plan to try yet another time next week) when I saw this thread.

    [This Message was Edited on 01/05/2010]
  5. fight4acure

    fight4acure Member

    I'm glad that you have a doctor you can work with and trust and who will give you priority when you need it! It is nice to hear that some docs out there are worthy and nice and caring! If you know how much I hate (most) doctors, this says a lot coming from me.

    My ex-bf has foot and ankle problems. His swell up so much. He also has heart failure and is out of shape to say the least, but how can a doc expect him to exercise when his foot swells up like an elephant's foot/ankle, as his ankle is bigger than his calf muscle. He hurt it from falling out of a crane in a factory he worked at years ago. Now he has gout and arthritis attacking it, and how is he supposed to exercise? Swimming would be the only exercise I would recommend to him, but he doesn't listen to me, thus, that's why he's my ex, lol. It's got to be hard for you to deal with that on top of all of this illness. Hope you get a good foot doc soon.

    It sure shows that we have good hearts when we want to help others through volunteering, even if our fatigue and pain levels are out of control. Too bad most people do not understand our illness.

    Fight :)
  6. butterflydream

    butterflydream New Member

    for me and sounds like for you too, from what you describe.
    i have learned to say this when i am invited to whatever. i can't promise i will be there, so i may need to get back to you on this the day of. That line Tea is not commiting you.
    Also that line would be for an invite of some sort that someone would like you to attend of some sort. If i didn't say that (line) to them i would be worried sick thinking what if...

    You're so right all this just so doesn't end but we need to find the best ways to prevent ourselves from getting in such a worse flare.

    As for appointments, well honestly, the only appointments i ever make are of course my doc appointments. If i can't get out, i call the morning of and say lets reschedule.

    i did attend a special occasion months back and i paid dearly doing so.
    Muscle spasms and all hit me at this occasion, not a good picture.
    If you absolutely don't need to be at a planned occasion, send a card for their best wishes and all.

    i so know all involved with being asked this and that , know what , no one so much asks me anymore either and that's okay with me. i have had to learn to be content in my home, this is where i am and i have to do what may help with me. Not always so easy, but i'm alive in my home and come here to share what i can . Hopefully you can relate on what i am trying to say, i have such a time with what my mind is saying for me to put into words. Oh how i dread this , i can kinda laugh at times but its also pitiful that i can't always say in words what i really want to say. Hey, i think i accomplished, just hope you understand what i'm rambling on about friend.

    Live Life to Your Fullest

  7. greatgran

    greatgran Member

    This sounds as if I had written it. This is me but sorry I have no answers as to how to deal with it. I go if I can and if I can't don't. Most of the time don't, I actually canceled a doctors appointment today. I probably could have made it but it wasn't worth the effort.

    No, it doesn't end and I realize I am doing more harm than good to myself but how do we stop this horrible cycle??

    Hugs and God bless,
  8. FibroFay

    FibroFay New Member

    After reading through this thread and how so many of us just cannot do these things, I remembered something I want to share with all of you.

    I saw a Neuropsychologist for counseling at one point in my illness, and I expressed my deep disappointment over being unable to attend my grandchildren's programs at school and church. This doctor told me, "You can change the way you think. Some people are GLAD they don't have to attend their grandchildren's programs".

    I just wanted to throw this out there for all of you on this thread to think about. Do you think you can get to the point where you change the way you think about missing out on all these things?

    Of course, this doctor was helping me to learn to live with my illness.

    Hugs, Fay
  9. pumkinhead

    pumkinhead New Member

    Is a very good tool. However, it has not worked for me with my illness. Sometimes i call it spiritual snobery. I actually had a church member ask me what i did to draw this illness tom me. I wanted to slap his face. Haven't been back to that church for years.

    When it comes to your grandchildren it is quite a stretch to think you should be glad to miss their events.
  10. SusanEU

    SusanEU New Member

    went out last night and I'm so tired, I volunteered to help at the local theatre with the costumes. There's a meeting tomorrow night and I've been worried about sick about it all day, which will make me not sleep and feel worse and not be able to go.....sigh
  11. TeaBisqit

    TeaBisqit Member

    We didn't ask for this, we didn't even know it existed. I blame the government and the media for covering it up. I remember a few years before I got sick, I had bought a book that had different support groups and stuff around the world for things. I forgot what book it was, but it was filled with info on all kinds of stuff and one of the things in there were groups for what was then called EBV Syndrome or something like that. This disease already had support groups and we're going back to like 1988. People don't form support groups unless there is a real disease and a real problem. After I got sick in 91, I remembered that book and remembered seeing that in here. But it wasn't something that was known about or talked about prior to when I got sick. Never heard of it, never knew what it was.

    Anyway, I agree, changing our thinking does not make it better. I want to do things and I can't do them and nothing is going to make that better.
  12. AuntTammie

    AuntTammie New Member

    thanks for your response.....and I am sorry that you had to give up volunteering

    also, I know what you mean about Drs - I am not a fan of most either - have just been very blessed to have found a couple of good ones
  13. fight4acure

    fight4acure Member

    I had a good one, well, sort of a decent doc, until I thanked him in a card, and now his head is too big to fit out in the clinic doors. He must sleep there at night and have everyone come to him, including his wife and kids, because his head won't fit out the door now.

    Now he doesn't hear what I'm saying and lists... ugh! He just types in what I'm saying. Um, can't he hire a receptionist to do that? Um, isn't that a nurse's job? I'm so confused as to where my doctor went. Maybe the Pengys got him in some straight-jacket, and hired a double. Or maybe he is moonlighting his jobs, taking on too much, and then he hires some mole that looks like him to investigate CFS and FMS for us? Oh, if only it were those two reasons.

    I think I'll be tempted to slam the lap top shut the next time I go in for an appt, but I don't want 'yet another doc' calling me "aggressive" in my files, lol. In fact, I'm thinking already about cancelling this coming appt, as I just can't get him to hear me. Maybe I'll mail him some ear wax removal oil or make him tie his hands behind his back so he cannot type?

    I swear, if I jinx myself again like this, I'm going to punish myself, lol, 5 more sit-ups!!! Note to self: Never send a good doc a thank you card, or they'll grow deaf and their heads will get too big.

    Fight :)
  14. jole

    jole Member

    Add me to your list. I totally understand also. The only place I go anymore is to the doc, and to get groceries occasionally with my hubby. The doc doesn't bother me anymore...we've become like friends, and she seems to understand. Stores are another matter. I've had panic attacks or simply became overstimulated and had to leave in the middle of grocery shopping. Hubby then pays and brings things out.

    Haven't even been able to go to church in years now, which was really hard to give up. And now I've decided even having my own children/families home is more than I can deal with. We've literally had our lives stolen from us, and we can either despair or accept it.....I'm still trying to accept.

    Bless you, are certainly not alone, although at times we all feel we are. I tell you, I honestly don't think I'd survive without my friends's all I have, really........Jole