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Surely there are vacations that don't feel like death

Discussion in 'Relationships & Lupus' started by NapMaster, Jun 5, 2017.

  1. NapMaster

    NapMaster New Member

    There was a year-old thread about how difficult vacations can be and how family and friends can be clueless or thoughtless to the challenges we face.

    I love to travel. I would rather travel than do anything else. But our last family vacation - to D.C. In January to see my Best Man sworn in for her 10th term in Congress - was miserable for me. My wife likes to keep moving from morning to night, walking or public transit everywhere, and I thought she was trying to kill me with museums. This was before my diagnosis, so I didn't know there was a reason why every joint in my body hurt or I hat to nap before I could go out to dinner.

    Tonight I mentioned that maybe our next vacation could be something that wasn't quite so physically demanding for me - maybe a cruise - and she told me I could go wherever I wanted, that we'd just have to take separate vacations. This felt like a punch in the gut.
    Lupusdude likes this.
  2. s_warrior89

    s_warrior89 New Member

    Wow separate vacations I feel your pain. Since I've had lupus I've come to realize that no matter how much family and friends see me suffer they still act as if they are completely clueless about my illness and sad to say no one understands but other lupus patients and my dr... I totally get the vacation thing, school is out I have two boys and they want a summer vacation to six flags and I know my body so that would be complete torture for me, so instead of breaking their hearts and saying no we can't go my brother and his wife have offered to take them and I am so very greatful for them, it still hurts that I can't go but I know I wouldn't get a chance to enjoy myself.. Vacations are suppose to be fun and exciting lupus just sucks the fun out of everything

    Sent from my iPhone using Tapatalk
    Lupusdude likes this.
  3. lazylegs

    lazylegs Moderator

    Vacations take some planning. We try to get a hotel close to the action even for day trips like 6 Flags. It is always more expensive but is worth it in the long run. We plan excursions in the sun for the morning hours then I hightail it back to the room for a nap. The family can keep going or hit the pool and we can meet up again later. It is easy now with cell phones to find out where the rest of the party is.

    Another tip is to use a wheelchair or mobility scooter. You aren't using all your energy going from point A to point B. I never travel with my own, I usually rent one locally so if I have a problem they can switch it out for a new one. Your hotel usually knows the most reliable vendors. In most cases they are delivered directly to the hotel and can be waiting when you arrive. Amusement parks have their own but sometimes run out and they are usually more expensive than from a local shop.

    Cruises are a nice way to travel. We make sure to get a balcony room so if I am having a bad day I still have a view. I am limited to the easy excursions so if my husband wants to do something more challenging we split up. Neither of us is really on our own and their are usually others traveling as singles also.

    Rapid transit can be tricky. Not all vehicles can take mobility vehicles. There have been times we have had to wait for one equipped to handle the scooter. When in doubt rent a break apart scooter and take a taxi from point A to point B.

    Take care,
    s_warrior89 likes this.
  4. LLLin

    LLLin New Member

    I have had a trip before my lupus was diagnosed and when it was very active. Obviously not recommended. I plan everything to be within 6-7 hours, was on NSAIDS and told my friend that at times I have to walk very slowly or take a cab. The friend understood about my "lupus schedule" and tried to accommodate. But sometimes she still walked too fast because she's taller. But it helps to take the edge off lupus.
    s_warrior89 likes this.
  5. NapMaster

    NapMaster New Member

    My wife is in what I call "hostile denial". It's like she thinks she can trot the lupus out of me. If I ask her to slow dow, she says she can't. I've stopped asking and trying to trot after her. I know where we are going - I'll just have to catch up to her later.
    s_warrior89 likes this.
  6. Bane

    Bane Member

    I can share your pain with lupus. Its hard for others to realize how we suffer especially on vacation to somewhere new
    s_warrior89 likes this.
  7. x_claire_x

    x_claire_x Moderator

    My husband unwittingly would stride off ahead on walks...drove me insane as I used to be able to outwalk him !! But he does stop and wait...which also drives me mad...I have an elderly black Labrador who tootles along so I stay with her saying not to rush an old dog.....LOL....good cover for me; however my husband has been having cardiac difficulties and procedures and breathlessness has been part of there has been a gradual dawning...and it is he who is tootling along at the moment and I am upfront.

    He doesn't mean to make me feel like this, it is hard enough for me to recognise my new pattern of exercise etc, and it has significantly improved since I have been better controlled...walk twice a day at whatever speed I can at that point....I can understand how sad you feel at your wife's lack of empathy, separate holidays are quite extreme, surely they can just be adjusted with planning so that you can accommodate both your needs ?...........Take care, Claire
    s_warrior89 likes this.
  8. NapMaster

    NapMaster New Member

    Thanks for all your comments.

    I'm starting to realize some things. I shouldn't have any serious conversations on a Friday. I am always exhausted by the end of the work week. (Yesterday I yelled at our mortgage banker, after the sixth supplemental request for documents. "We've had a mortgage with you for 20 years and never missed a payment. We have a 442 credit score. and we've been banking with you for 32 years. And your underwriters seriously need a cable bill? ARE YOU INSANE?" I had to apologize. But they decided I was right. They didn't need the cable bill.). I also can't make any plans for Friday night, because even a nap doesn't help.

    We decided this year just to spend a week at our weekend house, doing nothing. That sounds like heaven to me. Maybe we will drive an hour away for a day trip to Amish country for some pie and shopping, but other than that, naps and nothing. Dreamy.
  9. lazylegs

    lazylegs Moderator

    Sounds like a wonderful idea, especially the pie.
    wolf1 likes this.

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