sick from heat - vent

I know I've vented about this before, but I really hate when lupus gets in the way of doing fun activities with my kids.  My daughter danced at the Iowa State Fair this morning and then we were going to try to let both kids do some of the fun activities at the fair like rides, games, etc.  It was actually kind of cool this morning but by the time the dancers were all done, the sun was very hot.  Before we even made it to the midway, I was nauseous, exhausted and had an awful headache.  I even covered up and used major sunscreen.  The kids did get to ride a few rides and play a few games, but we had to leave earlier than planned because of how sick I felt.  Luckily my hubby was there too or I wouldn't have managed.  I barely made it back to the car.  My kids were very good about it all, but I could tell my son was a little disappointed. It seems I become more and more sensitive to the sun and heat the longer I've had lupus.  There was also the embarrassment of being drenched in sweat as we were walking around.  I started thinking that if things don't change, I may end up having to be in a wheelchair or scooter for big outings like that.  It just makes me sick to think about doing that. I'm so ready for fall and cooler weather.  I think I'll head up to bed and hopefully with some extra rest tonight I'll feel better tomorrow. Thanks for listening to my vent. 

Hey Hippi! Way before we even knew the word "Lupus" . . . we usually brought along my "throne". LOL . . .it was a great lawn chair that rocked or the folding chaise lounge, depending on how I was feeling. I still bring at lease my own comfy chair and a folding foot stool so I can sit and get my legs up. If your hubby is with you, you could find a good spot and rest while hubby and the kids go off and do some of their activities. They leave all their junk with me so they don't have to carry the backpacks and all. We do a form of pacing where I'm resting during the hottest and most active part of the adventure. Example: If we went to the Zoo . . . I would park myself in one of the indoor exhibits for a good while. Its amazing how much longer I last if I take frequent breaks AND stay out of the sun. I also always carry and use a golf umbrella. I'm SO sorry you are stuck with this blasted situation of making such hard choices with the kids. We even did our vacationing close to home and usually no more than 2 or 3 days. I just couldn't manage the trip AND the fun. So if we eliminated the long drives, we had more fun. *sighhhhhhhh* I'm so sorry sis. I know this is hard. Blessings!

Hi hippy,

I noticed you have been on prednisone for quite some time. I do know that one prednisone it is known to make you much more sun sensitive and heat sensitive on top of the Lupus. So although it does help the Lupus to some degree, it is a double edge sword. So coming back from your one vacation I think from last summer in Colorado it helped you if I remember correctly (if I did I am in shock ) so it can help with recovery to heat and sunburn) but it can also make you much more sensitive again. It sucks as one way we get better but then we have to avoid the things more that make us sick on top if it.

I am on Plaquenil and it only makes a rare percentage of those sun photosensitive. Well I already am uva/uvb and the house is dark, the Plaquenil actually makes me worst along with my other meds to help me. Wish we could win.

Anyway just a thought, have you purchased some sunscreen clothing? I have found it to really help and it keeps me cooler here in AZ and I thought it would make me hotter.

Leta

Thanks so much for the support and the tips for dealing with this in the future. As a family we are still trying to figure all of this out and we talked some yesterday about some different ways to be able to still do these kinds of activities together. I think I felt a little extra guilty because my family has gotten used to me doing a little better and even though I still struggle at times, I haven't asked for much help, so I hated telling them how sick I was yesterday. I am blessd that both my husband and kids are supportive and very caring. I still feel kind of crummy today with pain and fatigue, but that flu-ish feeling is gone for now.

(((((((((HIppi))))))))))))) I know how you feel as far as being extra sensitive this year to the sun and heat. However, I do not have children. I think that must make it so much more of a challenge to deal with Lupus on many levels. You are in my prayers, Judy

(((( Hippi )))) I am sorry your family time was interrupted by lupus! I am just like you, I have no tolerance to the sun / heat anymore. I get that same nauseated, weak feeling with a headache to boot. You have such a great supportive family!

I understand what you mean about sweating. Here lately I sweat A LOT even around my house..... and that's unusual for me! I am sure it's a lupus thing. I have also had the thought about a wheelchair, I don't like it but I know it may be in my future especially for long outings outside, etc. There are times when I could use it at Wal-Mart.

Take extra good care of yourself! Hugs and love

Hippi, I was looking around online and found a great chair that we should all have. It's called a backpack canopy chair. I know we can't advertise items here so I'll email the site to you. It's your basic camping chair with cup holders, and has an added canopy that gives your head and back protection from the sun. It won't protect you from the heat but will keep the sun off you. I'm going to order one. I hate going to events and having to look for little bit of shade under a tree somewhere. Invariably I have to stay away from my family or the rest of the crowd. I refuse to sit in the sun for even 5 minutes. That chair plus a handheld fan might be just the ticket. And if I look like a weirdo, so what. It will be better than sitting at home by myself. It's the kind of thing that I'll leave in my trunk all the time. I just love it. Hint: If you'll google the name, you'll find it.