Trip/Beth In Florida

    • Anonymous
      September 13, 2008 at 2:47 pm

      My husband wants me to go to Canada for the Canadian thanksgiving on Oct12. The drive up and back would come to about 13 days.
      I tryly do not feel strong enough to make the trip. ANd all of the equipment I would have to take with me, walkr, power chair, oxygen, seems overwhelming.
      He feels like he doesn’t want to leave me alone for that lenght of time I remind him I have friends and our son if I have to go som where. I’m still not driving.
      I feel confused and as if I’m really letting him down, and he has been through so much this year with me. One year of dealing with CIDP.
      How havae some of y ou managed things like this.
      THanks ahead of time.

    • Anonymous
      September 13, 2008 at 3:29 pm

      If you have a car where you can stretch out in an catch some “z” and get all you stuff in plus cloths snacks etc. you might think about taking a three day trial tip: one day out, one day R & R [relax and recreation] one day back. That will give you both and taste of what the longer trip would be like.

      If you don’t have and car or van like that and you can’t rent one…From personal experience, I can remember one pre-CIDP “vacation” with my wife and two teenage daughters. All three of them still allude to it as the vacation from hell. The car was to small, we had to much junk and the trip was long. It was so long that I was one who kept saying are we there yet. I would hate to think of what that trip would be like that now

      Carolyn and I are planing to drive from NW Florida to Convention in Nov. We are planning on drinking only 6 hours per day; 9AM – 3 PM [2 gas stop and a sit down lunch]. We will have our motel reservation already made for each day. Lord willing and the creek doesn’t rise we should be able to make it. Of course Carolyn will be doing most of the driving and I’ll be doing the navigating.

      The bottom line is that both have to arrive in good shape or the trip will not be enjoyable. Trust me I learned this the hard way [several times – men sometime don’t get it the first time out, but we do learn – eventually – most times – OK there may be a few exception, it’s a guy thing]

    • Anonymous
      September 13, 2008 at 4:53 pm

      Hi Beth,
      I’ll give you what my opinion is, but then again I’m a slow moving turtle and a very careful person. If I was in your circumstances, I’d want to be two to three years into the syndrome before I went on a long trip like that. Which is stronger, the desire to want to go or the fear of how you’ll be? We can understand that you’d want to do this for your husband, but do not make the decision to go unless you talk to your neurologist and have his approval..

    • Anonymous
      September 14, 2008 at 4:32 pm

      Thanks for the info on making a trip. I have decided not to try. I can not maintain any activity for even one hour before having to lay or recline for a few minutes. I do something, sit, or lay, and then do a little more. I have an energy level of -2 and fatigue level of +9. So, have decided the stress of the trip would undo all of the progress I have recently made.
      I’m ? 30 % of former self.

      This will be a long week with phresis on Mon and Wed, app’t on Thurs and bone marrow on fri.

      Will be thinking of everyone and saying prayers.

    • Anonymous
      September 15, 2008 at 9:36 am

      Hi Beth:
      Sounds like you have a lot on your plate.. I think if you are 30%, you are probably right in taking it easy… Jim has a good idea about a trip, but I don’t quite know about the drinking for 6 hour thing.:) If it were me, I’d shoot more for the 2 day at most trip, just to get your feet wet… Then again, everyone handles travel differently… I “survived” three camping trips with the family this summer… I had good times, but also suffered some residuals and fatique.. My cranky meter notched up quite a bit too… Was it worth it? For the childrens sake, yes.. For my sake no…
      I sure hope you get better soon, and no more medical issues, o.k.?

      Take care nice to hear from you again…dean

    • Anonymous
      September 15, 2008 at 12:08 pm

      Hi Beth, I’m fairly new and inactive so you don’t know me yet.

      I think of your situation from a husband’s perspective in a similar one. I’ve taken care of my wife for many years and feel so responsible for her that she has become my mission.

      My point is that it is obviously his being uncomfortable being away from you that drives his concern. If you can show him a plan with who will be on-call when it will go a long way to relieving his concerns. Too many times we say don’t fret I have lot’s of people but no one specific, but then you have no one in his mind and he needs reassurance.

      It would probably be good to have this experience as he must need a break and you won’t have him hovering over you.

      Again this is from my perspective as a husband caregiver. Good luck to both of you on this experiment.

    • Anonymous
      September 15, 2008 at 12:18 pm


      If your hubby wants to travel to Canada for Thanksgiving what about him flying up? That way he won’t be away from you for so long.

      Where in Canada is he planning to go?