Stupid lupus, It is a lovely day and I am stuck indoors with a hyper 4 year old that wants to go out and Auntie Katie cannot go out as I over did the sunshine yesterday watching the Olympic torch through my mum's village.
I feel soo crappy and my Gp's solution to it is to increase the pain meds.
What are people's coping strategies as I spend in the summer most of my life outdoors as we show a Vintage Tractor and vintage Stationary Engines and in the garden with our neices and nephews I cannot spend my Summer indoors
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tinkerbellquo
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7 Replies
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Truly a tricky matter. Cover up and stay hydrated is the best I can offer. Large brimmed hat, sunglasses/tinted glasses, sunblock, SPF rated top, trousers ... the works.
Perhaps speak with your doctor about increasing and/or including Prednisone into your Rx routine? It can work wonders to avoid flare ups when used as needed - increased prior/during stress events and lowered there after.
Thank you Nouska, my Gp will not play around or prescribe anything for me other than never ending pain relief. I am on 40mg of pred a day as it is so will not do any more..
I think it is a case of grin and bear it until I see the consultant
Thank you Janice, at the moment my local Home Bargains have factor 50 and my friends have put some American sun cream in the post factor 100 but I will ask the dr monday
My mum has Lupus and when its the summer she has to take a few precautions or she'll come out in red raw rashes due to the sun. She sticks to large hats, long sleeved WHITE and COTTON shirts and light materialed trousers. She applies sun cream regularly. She doesn't stay in much though and she seems to manage fine! She makes sure that for every half hour shes out in the sun, she has about ten minutes in some shade. I think just planning ahead and drinking plenty of water means you dont have to stay indoors all summer. I hope this helps hun. But don't let your Lupus ruin your summer! You only live once! xx
I can totally empathize with you. I have a 6yr old daughter and 5 year old twin boys who love the out doors. They have some understanding off my illness and saw i have poorly legs- I have both knees and hip replaced. I have to force myself to the park but the kids will ride their scooters while i stroll around and have a rest on every park bench. I actual feel better for doing it but I must cover up and not overdo it. X
That is all I am doing, although I am going to spend tomorrow in the pool at my nephews house as he wants us to play, Seni is quite happy for me to stay in while she plays in the pool I can watch her out of the window
Well the pool lasted a long time, she is now having a tantrum because I would not let her write on the wall
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so cold
Another sun protection question
Help me please.
My son has chicken pox 
Photosensitive
