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Posted

I was trying to work out what I needed a holiday from and in the end I think its from my own body. If my POTS isnt playing up at the moment, my ankylosing Spond is and I either have fluey symptoms and achy joints from that.

Im doing much better and slowly improving from my recent relapse, but I think it would help me so much if I could just have a week or so of normal or relatively normal functioning so I could relax for a while. POTS and relaxing arent exactly cohabitants...

Posted

Can I come too? As long as it is not too bright or too warm or too cold...wait, IF I don't have to worry about my body then I could go anywhere! That thought alone is astounding!

How do you explain to someone that EVERY facet of your life is controlled by the condition of our bodies?. I think we all could use that holiday. Hang in there, you are not alone.

Posted

Let's make it a group trip. Perhaps one of the tropical islands or a POTS cruise? I'm in!

Cheers,

jana

Posted

Its very limiting wondering how your body will react to any given day or situation. Thankfully sometimes for me it settles down but at the moment its nine months and counting.

I took my wife out for dinner to a crowded restaurant and nearly fainted about six times from the lighting or something. i wanted to leave, but I swapped seats with my wife to see if that would help and my POTs went away almost instantly. Work that out! Only thing i could think of was the lighting shining in my eyes or something. peculiar.

Yeah I guess its such a long-term thing too. If i get a cold I know it will go in a few days, my AS gets sore but it only lasts maybe 2-3 days tops usually before settling, whereas good ole POTS when it comes back you know its gonna be around for a while.. To think this time last year I was living a 'relatively' normal life with it. Just when I thought the worst was over it came back to say hello for a while.

I guess on the upside ive got a lot of book reading done :)

  • 2 months later...
Posted

SORRY your having such a rough time... I just SAID A PRAYER FOR YOU AND HOPE YOU SEE THE BEAUTY IN the gifts of the day! I know it is hard, I can't remember when my last vacation was. Even a day trip is like packing for a baby with all the stuff I have to bring along.....

I'm cleaning out my life and just found one of my favorite books by Sark...

I met her once and loved her book signing... this book is "Change your Life Without getting out of Bed"

When I bought it I wasn't in bed all the time, funny kinda...

I'll read you a short page.

remember pajamas with feet? The feet had little white bumps that gripped onto everything.

Blankets

Are the outerwear of naps. A good Blanket

will surround you during your nap and pull

you deep into your dream state.

*I like pure white cotton comforters or brightly

colored comforter covers

A big stack of heavy blankets can be very comforting too!

by SARK

That where I go on vacations in my dreams and still have feet pj's... lol!

by BellaMia~

Posted

I've so enjoyed reading everyone's posts here!

Two to three years ago was spent being sick for an unknown reason. Last year was spent getting a diagnosis and treatment plan. This August, I decided to start pushing my limits and see what my body would allow me to do. Well, guess what... I found them (my limits, that is)! :rolleyes:

Before POTS, I used to love basking in the sun on warm sand with the water lapping at my feet... (In fact, while I was doing the sweat test at Mayo I pretended that is where I was, but after awhile the beach turned into an oven...)

I have to admit I do love a good book, or even a good TV show, to take my mind off of my body. Kind of like a mini-vacation!

Posted
remember pajamas with feet? The feet had little white bumps that gripped onto everything.

I LOVE footy pajamas! I want some! :rolleyes:

Right now in the winter, I just wear soccer socks to bed. They're so long that even if my pant legs creep up, my legs don't have to touch the cold sheets!

Posted

Grippy-socks! I got a pair from the hospital when I had some test that have PUPPY PAW shapes on them! I love them to bits cause they're blue, and they have grippy paws. I wear them in the winter, too! XD I love cold weather because I get to wear layers. It's only 70 degrees here now but I'm already doing layers and long sleeves thanks to A\C and propranolol. XD

I want to move to Maine soooo bad.

Posted
remember pajamas with feet? The feet had little white bumps that gripped onto everything.

I LOVE footy pajamas! I want some! :)

Right now in the winter, I just wear soccer socks to bed. They're so long that even if my pant legs creep up, my legs don't have to touch the cold sheets!

When I wear my foot pj's my little granddaughter loves it and my daughter looks at me like this :blink: . We giggle and I say always remember to be silly girls!

Certin things in life make us feel special, like pretty shoes, fancy drinking glasses, cozy blankets, laying on the laundry when it comes right out of the dryer, breakfast in bed, cuddles with family, sleep overs with grand kids telling you all the things they think in there little minds, a warmmed up bed to crawl into, finding a card in the mail from a friend, laying in bed with my dog with his head on my leg, and the list goes on and on...

By the way I always said I'd move to Maine one day...Love it there on the Ocean and the Mountains...

There are so many things to be thankful for, I call them blessings...

BellaMia~

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