PDA

View Full Version : what do WE do in summer??



Twinmama
05-03-2011, 06:31 AM
Hello friends,
this is gonna be my first summer with Lupus. what do we do in summer? the sun has been in and out now(mostly hiding which was good for me). but when the sun comes out for the summer, what do we do? does the heat affect you guys? or just the sun light itself? I noticed it affects me quite a bit,(pain and fatigue) but don't know how much YET.

pls tell me your input.
Thanks =)

steve.b
05-03-2011, 07:25 AM
hi twinmama, in australia, we are renown for our loverly sunny weather.
for me, i cannot stay out in the sun. i need to cover my body. i use a hat, long sleeves and sunscreen.
when the heat gets too much, i sweat more than usual, (or other people). i also become fatigued quickly.

this sun effect made me change jobs. (i have deteriated now to a point i am on the disability pension).

remember that ultra violet rays are not blocked by clouds. the heat may be less, but the uv rays are still there.

Peridot20_Gem
05-03-2011, 09:19 AM
Hi Twinmama,

Be very careful with the heat it's been hot here in it's 70s and 80s and i've gone out for just 10mins only in the shade but the heat still heats up my skin and burns it, already it's caused my face to form blister's, i've got my arms covered in small blister's which turn to scab's on their own without scratching, i've got a larger rash on my legs and this morning saw the first rash that triggered off 4yrs ago it's identical to ringworm but not pronounced and it's down to my psoriasis but the heat as helped it along, roll on thursday i say for my appointment to see my dermo and hopefully start on steroid based creams again.
I suggest covering yourself with 50 block if you need to go outside, cover yourself up as much as you can, wear sunglasses as the light can affect your eyes and also an hat if possible, as heats the worst thing for the skin and keep to as much shade as possible and if your skin starts to feel irritated get inside as the rays are affecting your skin.
As out breaks to the skin are'nt pleasant and can be so sore and irritable besides wanting to make you scratch.

All the best Terri xxx

tgal
05-03-2011, 09:37 AM
Hi Twin Mama,

Some people do fine in the heat and or sun but I am not one of them. I am one of the ones that can't handle the sun nor the heat. The head actually bothers me even more then the winter weather. Of course I live in Houston which means we will be in the 90's plus for several months. My family has a trip planned for June and most of them are going to be playing in the water all day and getting sun burned but we made sure that there is a place with shade where we are going (a water park resort). I will spend the day in the shade or inside but once the evening comes I will be able to go swim and enjoy the outside.

Summers will be different for you but will find new ways to enjoy it

rob
05-03-2011, 01:28 PM
Great subject,

I cannot tolerate heat that's much over 75f, or any amount of UV rays, as both will induce a flare. I live far enough north that it rarely gets above 70f, and the UV intensity in the Gulf of Maine is very low because of our location. But, I still have to pour on the sunblock, wear my boonie hat, and cover my arms usually with a lightweight long sleeved shirt. I enjoy sailing and kayaking in the warm months. But, I noticed that being out on either a lake or on the ocean can intensify the UV radiation in that the water reflects the rays upward, so you have to protect the undersides of your body, like under your chin and under your earlobes with plenty of sunblock. The same goes in the winter if you are into things like skiing or snowshoeing, as the snow, like the water, acts as a mirror.

I don't let the sun stop me from doing what I want to do, but I am very cautious, and very careful to always use sunblock, sleeves, and my trusty boonie hat.

Rob

Twinmama
05-03-2011, 03:42 PM
thanks for you reply's . I used to love the sun, I even moved to California because of it. Now I don't know where I'm gonna spend my (late)honeymoon or if we'll go for a family vacation to Mexico ever again :(

rob
05-03-2011, 07:13 PM
thanks for you reply's . I used to love the sun, I even moved to California because of it. Now I don't know where I'm gonna spend my (late)honeymoon or if we'll go for a family vacation to Mexico ever again :(

Mexico is nice, but there are a bunch of other destinations that are just as much, and possibly even more beautiful, and fun. Places without the incredibly intense sunlight of destinations near the Equator. One great alternative would be the region that consists of the Gulf of Maine, the Bay of Fundy, and the Maritime Provinces. The area both inland, and on the ocean, is stunningly beautiful. There are some major cruise lines that have regular trips here. Another option could be the inland passage of Alaska.

You can still have a great memory and trip despite Lupus.

Rob

Twinmama
05-03-2011, 07:36 PM
Mexico is nice, but there are a bunch of other destinations that are just as much, and possibly even more beautiful, and fun. Places without the incredibly intense sunlight of destinations near the Equator. One great alternative would be the region that consists of the Gulf of Maine, the Bay of Fundy, and the Maritime Provinces. The area both inland, and on the ocean, is stunningly beautiful. There are some major cruise lines that have regular trips here. Another option could be the inland passage of Alaska.

You can still have a great memory and trip despite Lupus.

Rob

Thank you Rob. You're absolutely right. I have been to lot's of sun destination in my lifetime. the maritimes sounds like something we could do soon! also I've never been to NY since |I moved to the east coast.
It's just the fact that my kids want to be outside ALL the time when the sun comes out.by the water, park etc. just need a sitter for everyday ;)

magistramarla
05-03-2011, 09:43 PM
Hi Twinmama,
I used to live in South Texas, as Mari does. San Antonio often has 60 or more days in a year with temps over 100. I didn't realize just how much it was affecting me until I got out of there. I now live in Northern California, on the beautiful Monterey Bay. The weather here is much like what Rob described in his part of Maine. People here complain if the temp goes over 70. I feel so much better here! I can go out for a short walk on the beach during the day and be just fine.
We will have to move back to SA in 2012 (military move) and I really dread it.
No matter what the temp is, always wear sunblock. I find it easiest to buy a daily moisturizer that is SPF 30 and top it with my make-up, which is also SPF 30. I'm in the habit of putting on this combination any time I go out, and I haven't had a sunburn since I started doing it.
Hugs,
Marla

Peridot20_Gem
05-04-2011, 04:43 AM
thanks for you reply's . I used to love the sun, I even moved to California because of it. Now I don't know where I'm gonna spend my (late)honeymoon or if we'll go for a family vacation to Mexico ever again :(Hi Twinmama,

Robs correct in what he's saying so try places he's mentioned and if you need a baby sitter for the kids then do it mate to save you suffering.

How you love the heat, i used to be like it plus had a sunbed but as soon as the heat kicked off my skin, the sunbed went and i'm mainly in doors alot now.

lizbond36
05-07-2011, 07:01 PM
Hello
I had become sick in the Sun and heat in 06 before I ever know about Lupus (Long story I had posted it :-) What I had done was wear Hats, now sunscreen, I carry a water bottle at all times. I also use those hand hold fans, and I am buying a cooling Vest. I get sicker then a dog and spend most of my time in the bathroom. But I avoid going outside when the sun is at the highest. I hope I had helped in some way.
Liz

rob
05-08-2011, 12:09 AM
Hello
I had become sick in the Sun and heat in 06 before I ever know about Lupus (Long story I had posted it :-) What I had done was wear Hats, now sunscreen, I carry a water bottle at all times. I also use those hand hold fans, and I am buying a cooling Vest. I get sicker then a dog and spend most of my time in the bathroom. But I avoid going outside when the sun is at the highest. I hope I had helped in some way.
Liz

Now that's what I call being prepared!

lizbond36
05-08-2011, 06:05 AM
LOL thanks Rob, U just made my day :-). I had family think I was nuts. But I am ok looking a little nutty.

Liz

Peridot20_Gem
05-08-2011, 10:37 AM
Liz,

I saw my rheumo the other day, my specialist as banned me from going in the shade for just 10mins because my skins got to bad now for cream.

I said i can't go out in the cold wheather with the raynauds and being cold and now when it's summer, so really i'm house bound and he nodded for Yes.

What a life this lot is ahhhhhhhhhhh, that's my venting done. lol

lizbond36
05-08-2011, 11:39 AM
I am sorry to hear that, The sun and heat is really bad. Going into a building with high heat can cause me to be ill. Shade doesn't bother me much only the heat, so I stay out as long as my body tells me no more. I got back in and pop my butt next to a fan. I know how you feel about this life, make me upset that I can't run around playing tag with my kids. As today my son who is 8 wanted me to play ball, I was out there for 10 Mins. It is 88 now. I feel anything above 75 is asking for trouble.

I have a 14, 10 and a 8 year old. Some days I feel like a worthless mother. If you want to chat I am here on my good days :-)

Liz

Peridot20_Gem
05-10-2011, 08:05 AM
Liz,

I get so down because the raynauds as damaged the nerves of my fingers bad and if they chopped 2 off i would'nt miss them and in the cold they cut right open onto the bone, so although i'm never warm, summer seems an enjoyment just to sit for 10mins and then the heat makes me feel like i've been stuck in the oven and because the rashes and my skin are so tender i'm banned now when it's warm, it's a good job me and my hubby came to an understanding about the heating because our's is still on now in may set on 22 to come on if it goes cold.

I really feel sorry for you having kids so young because i bet they think why you can't play but at least if you played with your son for 10mins, it's still showing your love and caring and please don't think your worthless as none of we can help our situation's.

I've never been blessed with children and at 29 i was wanting one so bad and the brain surgeon said you can't it's to dangerous, so he added me to the list for sterilization and i was done about 7yrs back, why i don't know never got caught for a child and i say now it's all down to the Lupus as it can stop it for some women.

((Hugs & Kisses)) xxx

lizbond36
05-10-2011, 08:16 AM
Terri
There is always adopten, I had my gall bladder removed, of course that didn't solve it, then in 07 I had a hyster at 28 I think. Hemoglobin was very low, again that will fix it. And in 08 went in to the GYN and I still told him nothing changed. He looked at me at said" U had major surgery and ur a full time mom got on with life" He walked out, that when I know it was in my head and I deal with the sun and heat and everything. Till 2010 when I can't take it anymore. Not having kids is upsetting and I can't put myself in ur shoes. But I know how your feeling, wish I can give you a big hug..
( BIG HUGS)
Liz

Peridot20_Gem
05-28-2011, 04:41 AM
Hi Liz,

Adoption would'nt even consider me because i've got a psychiatric history of manic depression plus over dosing, in this country your well out of bounds but now at 42 i'm way over it.
You've gone through a fare bit yourself Liz and i'm so sorry to hear it HUGS TO YOU MATE

Well our weather here went cooler and the last 2 days it's been warming up slowly and already my skins itching like mad, it's as if it knows as soft as that sounds, i'll be glad when the 6th of june is here to see my dermo and start something fresh it totally drives you mad.

Loads of love Terry xxxxx