Advice? Frightened of the summer sun ... Photosensitivity. Claiming DLA?

[Elle-26]

As the weather is changing and more sunny days ahead, Im so worried about my Lupus flaring badly like it did last year. My health was battered last year and it accelerated in the summer months thats how I was diagnosed, not just with Lupus Lesions but IBS, Sicca, Fibro not to mention losing my hair,eyebrows and eyelashes. I went through hell last year dizzy spells, sickness, reddening of the skin even though I put on sunscreen 50+ and covered up. Im now not working and cant afford to buy stuff at the moment ... It seems even if my body temperature rises I suffer Could I claim DLA to help me? I would love to afford UV film for my windows & car. I just dont want to feel that ill again -x-

[misty14]

Hi Elle-26

It's always worth claiming DLA especially as your health sounds so unpredictable. I'd recommend that you do it via your local Citizen's Advice Bureau who would help you fill in the forms in the right way and would see what other help you may be entitled to as you've had to give up work! Best of luckX

[frankmcmanus]

I have discoid lupus which affects my skin really bad i asked for a prescription from my skin specialist she was a bit reluctant to allow me to get suncreme at first but when she saw the damage from the sun she agreed i could have it so the same should apply to you,.....Good luck

[onamission]

I know how you feel I'm told I don't have Lupus but driving my car today the sun was so strong I have the rash on my face purple marks all over me and feel so ill I'm fed up if I go out in winter the cold wind affects my COPD and can't go out in summer. Hope your feeling well soon

[Hidden]

Hi Elle-26, when I was first diagnosed in 2005, my dermatologist gave me sun cream. I think it was called, Roc~ or something similar sounding. My GP then prescribed it but, I stopped using it as it was awful stuff. It was so thick that I couldn't rub it into my skin. It left a grey/off white look,and I felt that my skin could not breathe. My brother had this too. Don't know if it's still prescribed with cutbacks etc... But it's worth a try.

[tracyxx]

hi mine gets worse in the sun. I try not to go out when im not feeling well. Try to rest. never possible with kids. wear sunglasses. hats.

[Slowmo]

you should apply for DLA or PIP as now is, due to the fact that you no longer work due to illness - it really is worth a try, I know lots of people get turned down but likewise many are awarded. I attended recently with someone (for an illness not related/linked to lupus) for their assessment with Capita and the assessor was very understanding and helpful. It really is worth a go.

Best of luck.

ps - I couldn't get on with the GP prescribed suncream either due to it being too thick to apply and very uncomfortable - I usually look for offers like BOGOF or half price and tend to stock up as and when I can.

[Shann07]

Hi Elle, i feel exactly like you I'm dreading the summer. Im diagnosed 3 years and although i was told I'm photosensitive i really wasn't sure what this meant. Until last summer it was dreadful i was so ill, with rashes, hair loss, short of breath, chest pain you name it i thought i was dying! Im now bracing myself im ordering u v film for car windows from eclipse, have a big sunhat & will wear long sleeved clothes, heaps of suncream & totally avoid the sun etc depressing isn't it - my rheummy told me the sun 'cooks my organs' and thats exactly how i felt like my organs were on fire! Get yourself protected elle incase its a hot one!

[sazzyb]

Hi Elle, DLA or soon to be PIP, is awarded if you need help with personal care, eg do you need help to get washed or dressed/ using the loo, help to eat food, & for the mobility part, do you need help with walking / moving around etc. It took me nearly 2 years to get DLA for my husband even though he'd broken his back. Nightmare!

[madmagz]

Hi Elle,

I can totally sympathise with you I too am a lupie who is photosensitive to the degree that I have had my florescent light fittings removed and have no low energy lightbulbs in my house as they make me worse. I have all L.E.D. or old style light bulbs. Every single time I go out I am totally covered up all year round I wear something on my head, a scarf and leather gloves as they are thick enough to block the UV. On any exposed skin I wear at least a factor fifty sun cream and re-apply regularly. I wear that at work too as they have florescent lighting, so any skin that is exposed at work has several applications of cream on it. My symptoms have been much better since I have been covering up like this and when the UV index is very high I don't go out unless I have to, I have even been nick named the Vampire as I only go out when it is dark when it is very sunny and a high UV index is forcast in our area. It is worth doing as I have been feeling really well and this is the only thing that I have changed in my life all on the advice on a very helpful dermatologist, I suggest you give it a go. The summer months need not be hell, just cover up and lead a full and active life

Good luck I hope it works as well for you as it has for me

Madmagz x

[Paul_Howard Partner LUPUS UK]

You may be eligible for UV film for your windows and car for free. If you contact social services they may be able to arrange an occupational therapy assessment and provide you with some aids to make life easier.

[flo_IarFachYrHaf]

can't see that anyone has mention the eclipse.lupusuk.org.uk/ page.

suncream 50+ is not enough for me. the stuff I can get on prescription is almost impossible to use, if skin is in perfect order can use on my body. I've bought SunSense for face and one for body. Though on body really only use like handcream as pretty covered up.

I too feel ill if I get hot - so keeping covered from UV and staying cool is a tricky business, last july was a disaster. but I'm more sorted now. I have made cotton clothing from UV protection fabric, 2 shorts with long ciffs and high nexk. two triangle scarves to ear over head and a to the ground loose garment for when it's hot [or when I can't wear anything tight round waist]. I wear a uv protection Buff over my lower face and have workwear glasses, anti mist uv protect.

Like madmagz I am sometimes called a vampire!

BUT things have improved since last year. my skin doesn't react so fast, but eyes can [both the eye and the lids] but it can mean I get a bit casual about covering up and end up with aching legs and back.

halogen and flourescent tubes are not at all good.

I check out the artificial lighting in places before I go - one arts centre bought uv filters so that I could give a reading. A museum/gallery where I am showing work has given me a full description of lighting so that I can gauge how much to cover up.

Hope you find ways to deal with the uv comfortably

[kimc in reply to flo_IarFachYrHaf]

Flofflach,

I went across of yours email and found my problems related to yours. I'd been trying so many things to see if I'd been protected from the sun and I failt so many times and very disappointed. But I think now I have to accept that I have lupus and very photosensitive and wanted protect my organs.

My friend, what you interpreted is what exactly I tried to learn to accepted, cope to change the way to fit with my health now. It's very hard to give up my life style I once having it.

I also learn how to eat healthier more vegetables, no fried, more water and more rest, breathing and control my emotions.

I have to get ready for work. But thanks for the website and you all to learn all experience about lupus photosensitive. God Bless.

[Elle-26]

Thank you all for your help. I will phone Social Services to find out whether they can help me. Since the warm weather we have had my lesions have broken out even though Ive covered up I wear a scarf on my head and rub factor 50+ but my Lupus still affects me ... I really am dreading Summer ... its only been up to 20 degrees at the moment and I make sure Im in doors, curtains closed between 11am - 2pm as Ive got to pick my littlen up from school ... I thought my hair was growing back but have started losing some again ... it just goes on and on ...

[virgo03]

Hi, all the above I share with you, loss of my hair, cut very short to look normal, no brows or eyelashes. Been off work for months...just want my. Life back.