Sun

[Bronn]

Hi everyone, well my chest infection is starting to clear up 😃 and I'm feeling a heck of a lot better. My task now is not to overdo things, hard when your a mum. Hoping to enjoy a bbq at the wkend 🤞🏻 but being careful to stay out of sun I need to protect my head when out but hats look ridiculous on me, has anyone any suggestions please, I really suffer bad if I go outside it doesn't have to be sunny, I need high factor sun cream any recommendations there too would be great. My new gp not great and not much help.

[maggielee]

Not easy, Once you get really sick with Sun 🌞 you start thinking less about appearance, remember shade has uv too so watch out... So 50 factor, at least something over your head, go with a baseball cap or lovely scarf if not a wide brim hat, some dark sunglasses & cover up.. I have invested in scarves & uv shirts, uv jacket knowing this is (,Sun sensitivity) not going away.... just need to figure out how much is too much....

been lately of being the crazed woman with umbrella 🌂 in the sun 🌞so I can go for long walks again 🏃 with my family... Good luck..ml

[Bronn in reply to maggielee]

Thanks for your reply maggielee. I don't see why this stupid Lupus should claim all rights to me. I am a woman and women like to look their best even tho feeling my best has long gone lol. I look absolutely totally ridiculous in wide brimmed hats, my head just gets so hot in baseball type hats and my RA usually doesn't allow me to hold an umbrella 🌂 for longer than 5 minutes. I have reaacto light prescription glasses, and I will definitely go for factir 50, and try a scarf thanks. Yes I cannot walk but it would be nice to take my beloved dogs for a walk and play, hubby gets all the pleasure at moment 🙁 Thankyou good luck to you too 👍🏻

[maggielee in reply to Bronn]

I do understand about looks & not head....miss swimming in the sea so very much...even with a wetsuit....Been looking at lovely cotton scarves on esty, two others way, hopefully cool to wear..... Fingers crossed about this weekend....ml

[Bronn in reply to maggielee]

I don't miss the sea as i suffer with Aquaphobia, just want to get out of the house, at the moment the garden is as far as I can go due to panic attacks being so bad. (Oh god I sound like a hypochondriac) My brilliant lady rheumy is referring me for help with those thank goodness. Mmm thanks I'll take look at Etsy, wkend here we come lol, hubby wants my input on putting up some hanging baskets, ye a lil late but we haven't long moved and I've been poorly since.

[maggielee in reply to Bronn]

Sorry to hear about your phobias, that makes life very challenging...Hope you find support soon to help you. Have you ever investigated hypnotherapy? Works well for phobias....have a good weekend...ml

[CarolMcl]

Hi

No idea about the hat but you can get factor 50 prescribed by your GP. When I'm on holiday I tend to get a baseball cap. Keep well

[Bronn in reply to CarolMcl]

My new gp rather useless, looking for another that's not and in my area. Thank you hope you keep well too

[honeybug]

Hi Bronn🌸🌿🦋

Hope you have a great and relaxing time no problems. What about an umbrella ☂. It covers more than a hat would.

Have fun take care.

😊🌸🌿🦋 🤗💕😘

[panda2]

Hi Bronn,

It's a real pain and so I chime in with the others who understand here. For me, my extreme sun sensitivity has been the most distressing part of the disease so far, as I also cannot handle the sun through windows inside or in the car either. However, over this past year I have found some solutions and some acceptance (which is the harder thing).

Others have mentioned the umbrella, but you say about the RA making holding it too difficult. I've found just the thing -- a 'Jane' baby umbrella for a pram. Got one on eBay for half price. Normally about £25. They have a hefty clip that can be attached to the back of chairs. I have rigged mine in my garden and just have to move the chair from time to time with the movement of the sun. Instant comfort because it has uva and uvb light blocking layers. Virtually nothing gets through. I also prop it on the sofa (no attaching required) to block the sun on my favourit spot.

It's so frustrating, but you will get used to it in time. I wore my driving sleeves while pumping petrol and while paying for it yesterday and no longer cared a hoot.

Panda x

[Bronn in reply to panda2]

Thanks, as im wheelchair bound I could fix the 'Jane' baby to that, and factor 50 a deffo.

[panda2 in reply to Bronn]

Yes, that should work! What I also like about the Jane baby one, is that it is not so gigantic and in the way.

[DJK99]

Hey Bronn - so sorry to hear you are having so many health issues. I am still pretty new to my diagnosis of SLE but have noticed the sun really is kryptonite for me - it's so much worse this year. I thought it was just about getting rashes - which I used to get as a kid but then stayed out of the sun as just thought I was allergic to the sun creams and grass and er, sun! My family brought me up to be anti orthodox medicine so no GP visits for me... Since I was 18 I took it upon myself to sleep as much as I needed (always 10 hours at least - sometimes 13hrs - and who could do that with kids though) have the most pure and healthy diet, drink tons of water and, very importantly, started to wear seriously thick factor 50 and in those days (I'm 55 so you can imagine!) there was only Clinique which was very expensive... These days I use Ambre solaire Factor 50 for kids with sensitive skin (you can often get 2 4 1 in Boots) - I think it's water proof too but you'd have to check.. not that you'll be going in the sea anyway, what a pain. I wanted to check how the sun affects you, if you don't mind. I generally feel like I've been poisoned or something... I have to lie down.. my joints and tendons flare everywhere more than usual, I get migraine and generally flake out. Is it the same for you? I had to have three days off the other month when I went into the garden for a couple of hours, mostly in the shade and had (!) forgotten to put on my sun cream! The other initially cloudy day I got caught out in it in the community during work so I couldn't get out of it, and whilst I was fully clothed, my head caught it and yep, migraine, exhaustion, and straight to bed when I got indoors. Dreadful. You must be superwoman having kids with this. Well done you - and your partner for supporting you. Hope the recommendation helps - but, yes, get it on your prescription from your GP I say (will probably be some other make of course) - I'm going to try now too. All the best, D

[Bronn in reply to DJK99]

I used to love the sun, but not for a long time fed up of sitting in the shade away from family and friends. Being almost completely deaf I miss most of what is being said too. My rheumy says stay out of the sun but that's unfair and impossible. I'm just fed up of going outdoors and feeling nauseated, tired, and feeling hungover, without the pleasure of the alcohol. No way am I super woman, my kids are nit little anymore but the yougest is autistic, but they've been brought up with my sickness. It wasn't easy till I married a caring man who cooks cleans and does laundry 😀😀 and he suffers osteoarthritis arthritis and had a heart attack about 5 years ago.

Take care Bronn

[imsickandtired]

I have severe sun sensitivity. I cover everything; pants, socks, long sleeves, hats, sun screen, sun glasses and thin white cotton gloves. In the height of summer I don't go out at all when possible and, if I must I go out, I go early in the morning or in the evening. I have UV coating on my house windows as well as black out drapes for the worst days, and am getting UV coating put on my car windows. After suffering enough horrible flares from the sun I've practically developed a sun phobia and love dark rainy weather and winter when the UVs are low. There is also the issue with going indoor places that have florescent lighting as the UVs can be just as bad. LED lighting is the safest lighting for lupus sufferers.

[Bronn]

I hate having to be so restricted but as I'm suffering badly it's time to take action and grab back my life. Interested to know more about uv coating on windows.