1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
New Exercise Study Brings Both Illumination and Questions
Simon McGrath looks at new objective evidence of abnormal response to exercise in ME/CFS patients, and the questions that researchers are still trying to answer ...
Discuss the article on the Forums.

Canceling Plans, Rescheduling Appointments

Discussion in 'Lifestyle Management' started by Carrigon, Sep 15, 2010.

  1. Carrigon

    Carrigon Senior Member

    Messages:
    805
    Likes:
    72
    PA, USA
    Sometimes I think this disease should be called "Rescheduling" disease because I'm always having to cancel anything I have planned to do.

    Over the years, I've canceled a million appointments, plans, things I was supposed to go out and do. I've missed so much time with family, friends, life. I've missed every family wedding and birth for the last twenty years. And birthdays and holidays.

    Today I was supposed to go with a friend to an annual thing. Really wanted to go. Can't. Can't even walk across the room today. I had to call and cancel and she sounded so disappointed. And I felt awful for canceling. But I can't go. I actually sat on the bed praying for energy today and it didn't work.

    It's just so frustrating. You want so badly to do something and you can't do it. Or you think you are well enough or will be and it doesn't happen. And not knowing day to day how you will be. I never know. I don't know if I'll have a good day, a bad day, or somewhere in between. Or there are days when I can be deadly ill in the morning and be okay at night. Or I can be feeling like I'm dying the entire night and then be okay to go out in the morning. I just never know. Last night, I was alot better than I am right now. Today I feel like death again. The unpredictability is horrible. It's life destroying. You can't make plans. You can't have friendships. You can't do anything. And healthy people don't understand at all. They think you can just push through it, and you can't. There's nothing to push with.
     
  2. illsince1977

    illsince1977 A shadow of my former self

    Messages:
    356
    Likes:
    22
    My experience is identical. I feel like I could have written this myself. I hate planning because I hate the inevitable dissappointment when I can't follow through. I don't do it anymore.
     
  3. alex3619

    alex3619 Senior Member

    Messages:
    7,425
    Likes:
    11,839
    Logan, Queensland, Australia
    Hi Carrigon

    I had to wait five years to get into the public dental hospital for free treatment. All appointments have to be made weeks in advance. I had to reappoint multiple times and the last time I was so out of it that I didn't even know I had an appointment, so couldn't even contact them - and now a year later I still haven't had one treatment appointment. I did the math: a simple series of five appointments is likely to take me three years to complete, or more, by which time I will need more treatment. This is a joke: I decided I am better off going to a private dentist even though it might mean I have to spend food money (from my food budget which is now half of what it was ten years ago, even though I was on disability pension then too) because I can control appointments. In the short term, my capacity is much more predictable, I could even just ring up on the day and if an appointment is available I can just go.

    Bye
    Alex
     
  4. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

    Messages:
    1,767
    Likes:
    331
    Southern USA
    Yes, that is hard with CFS and so hard with POTS. I have to reschedule doc and dentist appts. Thankfully, I get in to see them as soon as I feel better, only a fews days to wait. I was unable to get a massage for months and finally I have had two. I just keep plugging away and thankfully I am getting better.

    I have gotten better at just rolling with my illness. It is that or be stressed and upset.
     
  5. JAXintheCity

    JAXintheCity

    Messages:
    97
    Likes:
    0
    Philadelphia, PA
    I can SO relate! I once heard someone say, "A good day with CFS is making plans...and keeping them!" There is SO much truth in that statement, and I've found the ability of inability to make plans is a good gauge on how you're doing.

    I found it helpful to just say to friends, "I'm not feeling well...CFS." I'd rather them know I was sick, than think I was flakey! I'm also very careful to not plan ahead...if someone wants to see me, they have to call me the day of. Most of my friends do an open invite to parties/dinners/events -- but know that most likely, I won't show. I'm very lucky to have understanding friends -- but I also am very open about my disease.

    I always feel guilty when I miss plans... but I think it's important to try and let go of the guilt. It's not your fault...your SICK!
     
  6. SickOfSickness

    SickOfSickness Senior Member

    Messages:
    1,848
    Likes:
    929
    US
    I dislike planning in advance too. My pain and other symptoms aren't as bad but it's still very difficult because I don't want to be all tired or in a bad mood. I'm tired now and can't properly reply but hugs. Also for me I have anxiety issues and if I have a silly appointment which should not be a big deal, I often can't sleep well the night before, which makes it so I will be sluggish at my appointment.
     
  7. Mya Symons

    Mya Symons Mya Symons

    Messages:
    842
    Likes:
    171
    Wyoming
    Ditto.

    My daughter came to visit for two weeks. She just left a week ago. She is 19 and I have not seen her in a year. I live in Wyoming and she lives in Washington State. I managed to go to one movie with her and shopping for a half an hour. That is all I could do. I just happened to get a cold and have a horrible flare up while she was here. I felt so bad. My daughter understands, though. I have been sick for almost 10 years now. (I had the swollen lymph nodes, sore throat and low grade fevers for more than 15 years, but they used to last only a few months and then I would have several months where I was fine until 10 years ago.)

    I feel so guilty. I still haven't figured out how to accept that I have an illness, and this happens as part of this illness. Somewhere in my head I tell myself I should have tried harder to push through it. It doesn't make any sense.
     

See more popular forum discussions.

Share This Page