This Is MS Multiple Sclerosis Community: Knowledge & Support

I'm sitting here on vacation crying in the back bedroom (which is air conditioned). Essentially, we rented a house on Cape Cod (which I have wanted to do for years) and we booked it about 6 months ago. I was just diagnosed with MS 2 weeks ago and had to go on a 5 day course of IV Steroids (believe me - I tried not to, but I was getting worse very day.). Now, I am at this beautiful home on the cape with NO air conditioning EXCEPT for the bedroom. Its about 90 degrees and humid and I can't leave the damn bedroom without feeling like a truck hit me. Not to mention, that I am still bloated and hurt all over from the steroids.

Our family has had such a tough year with the loss of my brother and all that came with that, now the MS, so I was really looking forward to relaxing at the beach. This is the worst vacation ever. My niece gets up at noon - and everyone gets moving in the heat of the day - I can't do that. I'm like a freaking vampire at the Cape waiting until dusk to leave the house. Then, I'm too tired to do anything anyway -- so should just stay home in the AC and watch TV. Don't get me wrong, I'm not a sun person. I have that milky white Irish skin that burns and peels. (yuck) But, I love to walk on the beach in the mornings and late in the afternoon, etc.

THIS SUCKS. I should have just stayed home. The house is immaculate and beautiful -- it is just to DAMN HOT.

Hey,

I'm sorry you feel so bad on your holiday, but you have just had a course of treatment and are trying to recover..stop being so hard on yourself!

If the sun is too much for you and all you can do is sit and enjoy the lovely house that you have rented, then do that...and you still have the evening to enjoy.

It might not be your version of perfect but please, try to relax and have fun..

That's just it. I cannot even enjoy the house because it is like a sauna. The rest of the family is out in the main area, and I am alone in the bedroom with the AC and my laptop.

Steroids can really play mind games with you. They can make you really emotional. So when you add them to your family troubles and recent diagnosis it is no wonder you feel so sad. There is a lot of adjustment that will take place over time so don't beat yourself up. Be kind to yourself. I promise it will get better. Enjoy the vacation during the time that works for you. Don't feel that you need to work around everyone else's schedule. Try to do as much relaxing as you can. Try to "go with the flow".

One thing we ended up doing when we went to Greece and it was really hot, was hire air cons. You know, the transportable types. We has one in every room which meant that we could wander around the apartments..just a suggestion:-)

Prauly:

Take heart. I think the whole mid-north Atlantic is going to get a break in this heatwave for the next several days. I'm in the mid-Atlantic, and we're getting some pretty fierce rain right now. It's been in the mid-90's here for the past week, but the weather reports are that we're supposed to go down to the 80's, and less humidity. I think the rest of the Atlantic coast is due for the same trend.

Dear Prauly,
I know you think it's hard esp. with the heat, but try to adapt and the good news is there is hope ( CCSVI ).
So hang in there for now. What I would do :
Frozen drinks, Margaritaaaaaaaaa !
Ice cream.
You can go out to places that are air-conditioned. There must be restaurants and cafe's out there with AC.
There are these neck ties filled up with some kind of liquid. You can freeze it or put it in the fridge and then wear it around your neck.
Please try to take it easy and start with little tiny things to enjoy.

I'm sorry you're having such a hard time. But I would hate for you to leave that place and regret everything that happened. Definitely try everything Vivianne mentioned.

Also, there has to be some sort of shop that has handheld fans. Some even come with spray bottles to spray and fan yourself at the same time. Fill that puppy up with ice water. Is there a pool? I'd be in it every minute if I were there as I am extremely sensitive to the heat as well.

I'm sure you're family is willing to help in anyway just to see you have a good time. Open up to them and see what they suggest. They're there so they may have ideas of places that are cool and then everyone can have a good time together.

_________________
October 29, 2009 - Dx with RRMS
June 22, 2010 - Dx's changed to Devic's (NMO)
January 4, 2011 - Dx w/Syringomyelia T4-T9, Migraines, and Possible MS (again - long story)

I have really adapted to taking naps from about noon to 2 and then coming out at dusk when it's like that. If you want to know the truth, everyone just bitches about how hot it was and how miserable they were so I just go with it and don't think about what I'm missing. Not the best answer, but I truly love the dusk of the day and the evening now. It's been too hot even in the damn morning here lately! It's just part of what I have to expect. It sucks even worse when we're camping and I'm stuck in the camper, but it sucks even worseR to try and stay engaged and then just killing the rest of the day including the evening.

This is all so new to you that I imagine what I'm saying seems overwhelming, but as the need to accept things arise (or go batshit fighting it and losing) I have become a bit better at that and this is a recent one to me. I could always go out and do it and get all screwed up and just take an hour of so in a cold shower or the AC and I'd be all better. Now my heat affectedness is such that I just need to stay out of it. The only other choice is bang my head off the concrete and try and do it anyway; it just has become too much when it's in the 90's and humid.

MS sucks.

_________________
http://myhopefuljourneyintoactualmsreco ... ogspot.com

It is official! I have a wonderfully supportive husband. He called the homeowners to get permission, and he went out and bought an A/C for the main room in the house so that we could all spend time together.


I still cannot do much during the heat of the day, but at least we can spend some quality family time together!



I also bought some Evian Spray bottles at Sephora and put them in the fridge, and if I wrap them in foil they will stay cool for a while. Perfect for my purse!

Good for you! Now enjoy yourself!

You didn't say where on Cape Cod you are but if you want to get out, go into the car with the AC and drive up to the Christmas Tree Shops (it's not Christmas stuff, like you'd think). There's a big one in Orleans and it has AC. You don't have to go for long, but you'd feel better than sitting in the house.

Kudos to your husband for asking the owners about installing your own AC. ;o)

Vivianne is right - with CCSVI treatment you have a good chance of this all seeming like a bad dream in a years time. Take a look at the CCSVI subforum. Take a look at the pre/post procedure videos, a sticky close to the top of the thread list..

And Margaritas are an excellent suggestion too. Two great suggestions from Vivianne.

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