help! how to negotiate huge family events ie. brother's wedding!

Discussion in 'General Health & Wellness' started by spirit light, Jul 16, 2009.

  1. spirit light

    spirit light New Member

    hello everyone,

    i am needing some feedback/advice from people with more experience in the area of negotiating travel and family events.

    i was diagnosed with cfids in february of this year (2009) but have been ill since 2006.
    things have gone from bad to worse for me and i've been housebound and unable to walk on my own without help. even on a day that i can, i am so exhausted by the time i make it from one room to another that i've re-used my tissues as many times as possible before getting a new box :(

    my brother has been engaged for a couple of years and just spontaneously announced that he was getting married in september, only two months from now! he and his finacee live on the east coast with the rest of my family and i'm here on the west coast with my partner. they don't know the extent to which i've had difficulty walking, but they do know how sick i am.

    this news has brought up so many feelings for me.
    feelings of hopelessness about my condition, anger that he didn't plan it with more care to my condition, confused about what do (i'm in no state physically to fly anywhere, but how can i miss my brother's wedding?!) and angry at the people around me who are all telling me what to do ("well you'll have to miss it!" "it's only one day...who cares?" "it's his fault for planning it this way, don't feel bad!" and on and on)

    if i go, i will be done for. i'd have to be taken in a wheelchair (which i don't yet have and i'm unsure of the process to get one) and even then, sometimes i don't have enough strength to sit up. help! at the same time, i feel like i could summon the strength from the depths of my being, but it will cost me a high price.

    i've been doing the SHINE protocol and seeing a dr. through the holtorf medical group. so far i'm not noticing any dramatic shifts, but apparently my thyroid dose was too high which may be underpinning this new level of wipe-out.

    any thoughts on navigating this tricky situation?

    thanks for reading!

  2. rockgor

    rockgor Well-Known Member

    Is this right? You want to go, but you can't? Seems pretty clear to me
    that you'll have to stay home.

    When was the last time you flew? It gets worse and worse. The last time
    I flew from LAX it took hours to go through security. Three different lines
    to stand in.

    I was exhausted by the time I got on the plane. And then the plane sat
    on the runway for 20 or 30 minutes before it took off.

    And the airport personnel get ruder and ruder. If you look at them funny they say,
    "SIR, do you want me to call a Federal Marshall?"

    Do you have a friend w/ a video camera? Maybe you could make a short
    video to your brother reminiscing and wishing the couple happy years ahead.

    You can send a nice present for a fraction of the cost of travel.

    Nobody can do more than her best. If you do that, you have no reason to
    apologize to anyone.

  3. TwoCatDoctors

    TwoCatDoctors New Member

    Spirit Light, I am mobility disabled in an electric scooter due to surgery and then damage from a fall to my back. The damage is permanent and there is nothing they can do. I refuse to take the load of narcotics, pain pills and anti-inflammatories to try to ease pain--all of which did not work. I now use meditation in bed with my one cat in order to lift pain. I can stand up only about 2 minutes before I fall and sitting is something where I have to constantly shift and get into another chair or actually go to bed to get comfortable.

    My Dad lives all the way across the country from me and is 92. I have discussed with my Dad and my brother my inability to travel to Dad should anything happen to him. They both understand that with the damage to my back, a doctor would have to pretty well knock me out to travel and no airline would allow me on board (because I would not be able to obey orders in case of emergency). I have had to resign myself that I will not see my Dad again, as he cannot travel. That means when Dad passes, I will not be able to attend any viewing or funeral and my Dad wants to be buried in yet another state in almost the extreme Northeast--many days from where he lives right now.

    I have told myself and my brother and Dad that I cannot travel because my back just won't tolerate it. So what I do is that I write letters to Dad and every so often I do a phone call. My Dad loves the letters and reads them over and over again as he savors everything from them. I often include a brochure or something else I find just to make it interesting.

    Please know that if you explain that due to your medical situation, you cannot anticipate being able to travel again, your relative will understand why you can't be there. The suggestion of recording a video was terrific (get all dressed up as if you were attending) and it will be with them as a keepsake forever. If you don't know anyone with video equipment, talk to Kinko's or some other places to ask if they can do it. Then prepare a whole script and discuss what you enjoyed about your relative when you were younger and really bring in some wonderful memories. On the video explain that this is the way you are able to attend and how excited you are on their happy occasion. You can make this video so wonderful and special that they will remember it forever. Many hugs and don't you worry as you can appear by video.