My trip to Disney...

[BeckyM4]

Hello, All!

I had the pleasure of being a chaperone for some of our high school band members on a trip to perform at Disney World! It was a trying trip, to say the least. The kids were fabulous and did a fantastic job performing. The problem was one of the buses-the one our school was on (we went with another high school). No air conditioning for a 24 hour or so trip. Needless to say, it was VERY uncomfortable with 37 people on the bus. I have PV, Jak2+. My legs swelled like sausages. I began having a hard time breathing. Thank goodness we stopped to get air. Once in Florida and at the parks, walking around in high humidity and high temps took it's toll as well. Being with high schoolers, we walked quickly. Quicker than I could handle. Chest pains, racing, thumping heart, dizziness and shortness of breath set in. After finding a cool place to rest for a while, this passed, until the next quick jaunt across the park.

So here's my question: was I under any extra risk of health issues doing all of this? I didn't want to over-react, so I just asked if we could walk slower. But I sure felt like something was terribly wrong!

Obviously, I survived! And I don't see me going to any place that hot and humid again any time soon!

[rubyrubyruby]

I have PV and JAK2+. I really struggle with heat and humidity too and it has now become a determining factor on where and when we holiday. Obviously the humidity we get in the UK doesn't compare to the US, but I even find coping with the temperatures in indoor swimming pools difficult. Likewise I get short of breath and feel lightheaded.

[JediReject]

Hi Beck, I'm sorry your overall experience was spoilt by the humidity factor. I was there a good number years back well before my MPN diagnosis and I recall how hot and at times uncomfortable it was in the full heat of the day in the parks. Mainly though I coped well and loved it. But I think your post serves as a timely reminder to any forum folk considering visiting same or similar temp wise to think about when they go or even if they go or opt for somewhere easier on the respiratory system. And if like you their legs feet risk swelling not as much tramping around. Those parks are huge and you're on your feet most of the time.

Glad you are ok but I think you answered your own question re the onset of many symptoms and I'm pleased you rested and didn't need assistance from a Park Paramedic. Cheers Chris

[Loubprv Volunteer]

Morning folks!

Good reply Chris, how are you?

I was dreading the two weeks we spent in Mallorca last year to celebrate our 40th anniversary. It was 28 degrees every day and I LOVED it!

We walked, sailed, and just generally took it easy. Haven't experienced humidity for at least 30 years when we were in Memphis and it 94% humidity. Ghastly. Don't think I'd risk that again even if I didn't have PV.

I walk a lot, but at my own pace - as briskly as I can on the flat, more slowly ( I blame our elderly dog if we're with friends ) uphill.

I'd say, head for warmth and sunny climes, avoid lots of sun exposure if you take HU, - - you'll be fine, but avoid humidity, stressful situations etc.

I fancied Florida in the winter this year but maybe we'll head for Tenerife or Madeira instead! The old boy will be delighted, much cheaper.....

Louise

x

[Kinsalelady in reply to Loubprv]

If you decide on Florida this year we are in Vero Beach all winter. If near by let me know would love to meet you. XX Harlie

[Loubprv Volunteer in reply to Kinsalelady]

Will do!

[Kinsalelady]

Hi Becky, so sorry to hear about your heat problems. Many, many years ago before I was diagnosed with PV I began suffering with heat intolerance. I cannot tolerate heat and humidity at all. I do not know if this is a recognized symptom of PV but I must be very careful where I go. It is difficult and sometimes embarrassing as people do not understand what I am feeling. One time we were in Vermont with friends and went to dinner. Being Vermont , many restaurants do not have air conditioning. So, upon entering, my husband asked if we could have a table near the fan. One of our "friends" looked at me and said "suck it up you're an adult". Must I explain the hurt I felt. Ok, enough of my pity party. My point is, this has been an ongoing condition along with cold intolerance. The cold is easier to handle. I am never without a little fan in my purse. In my car I have a fan that also sprays a fine mist. Has saved me many times. Please let me know if anyone else has this heat and cold intolerance. Becky, is this the first time that you were overwhelmed with heat? I sympathize as I know exactly the scary discomfort. Happy the band did a great job and hopefully you will not be in that position again. Beware of non air conditioned places. Hugs, Harlie

[BeckyM4 in reply to Kinsalelady]

This was the first time it was this bad. Being from Illinois, we have our highs and lows with temps! I am generally not in the heat and sun for as long as I was on this trip. The cold really gets my Raynaud's going, so I watch it too.

[katiewalsh]

Hi. Nice to "see" you Chris. Becky I know exactly what you're talking about and you do need to be careful so you don't get heat stroke. I'm glad you survived it. I have the same reaction. Do you folks know if ET can also cause this. I have respiratory problems too so it could be that but it's much worse these past two years for me (in Florida). Harlie, can you please describe your purse & car fan? Hand squeeze, motor.....? Or where you bought them if in the U.S. I'd like to get one. Thanks. Katie

[JediReject in reply to katiewalsh]

Thanks Katie, I'm in a much better place than I have been so you should "see" me more oft. Regards Chris

[katiewalsh]

Very glad to hear such good news Chris!