Hi all. Those with sun sensitivity, I need some tips and ways to deal with the isolation during this season please. I can't go on feeling like this every summer. I can't just put sun cream and a hat on, I'm far too photosensitive. I'm so down....all I do is work and housework, that is my life...no existance.
How do people distract themselves from not being able to go out?
Feeling so low....
Hello Comeonpeeps, sorry to hear that you are feeling down. Like you and many others on here at the moment, I can totally relate. This whole lockdown situation has led to rather dull routines and what probably doesn’t help is that there is no end in sight at the moment. I have tried to make the most of my confinement by creating things I have never done before, I know it’s only a little thing, but I made Nutella from scratch yesterday! We had run out (next shopping delivery not for another 7 days) so I ordered some hazelnuts from Amazon, followed a really simple recipe and bingo! It was delicious. I just try and stretch my creativity (I dont have a lot tbh) in any direction. We have a lot of wild bird life in the garden, so we sit and watch them and I try and snap pics with my phone and post them here. I make bread from scratch and research the best ways to make it and try new recipes. I even bought an ice cream machine and have been making my own ice cream with trying my own recipes (some disastrous - especially the chilli and ginger one that the kids said should be served up with chicken & rice! 🤷♀️) Friends recommend books and films to me that I would never usually choose and give those a go - I just try and do/try things that I wouldn’t normally - it’s a change and it’s stimulating and it’s a break from the monotony. I try and have regular Zoom calls with groups of friends and family, nothing like a video call to enrich a conversation. If you have a close friend or someone you can talk to, try and tell them how you are feeling. That’s important too. Or post here! There is always someone about to touch base with anytime of the day and night and share. This forum has kept me going during my darkest times particularly in the last 10 weeks, a great help indeed. Anyway, some suggestions at least, which may be useful Xxx
I think this can be one of the hardest things about Lupus. Early morning/Late evening? Do these times work for you? I seem to have a little bit of mycophenolate induced remission ATM - but even when my lupus is very active I can usually tolerate the sun before about 9.00am.
But this can be isolating, I agree. Most people don’t have to confine themselves to short periods at odd times to be outside in the sun. There is factor 50 clothing that you can buy - not always the most flattering, but it can help. I wear a hat pretty much all the time - with a brim in summer and a beanie for warmth in the winter because my hair is thin and I get a rash on my scalp if it’s exposed. Shades - even cheap ones can look quite cool and very large ones cover a lot of face! I use neutrogena factor 100+ on my face - which helps for a little while, but I do have to limit my outside time a lot in this weather.
I totally get where you’re coming from. I was a sun worshipper before lupus and finding I could not do it anymore was hard, especially when everyone else is enjoying the weather. I still sometimes feel excluded and sulky - but most of the time, I get on with life in the best way I can.
It’s awful to say this - but it is true - I think you will get used to it in time and eventually work out a regime that you can live with. When first diagnosed, I remember phoning a friend in despair, feeling that my life was at an end because my joints hurt and I’d been told I had an incurable illness. My friend, who suffered dreadful arthritis, told me - you will get used to being in pain and it will all become normal. I didn’t believe him - but it is true. The same for the sun. I still love it - but tiny doses are all I can stand at this time of year. I am used to it - the sun makes me ill and I don’t want to be ill so I am careful. You will learn too. And it will be fine. I know that is hard to hear. But you will.
So sorry to hear you’re struggling Comeonpeeps. I’m praying for clouds and rain soon so I can go outside during the day. I walk before 7am some days, with a hat, gloves and sun protective face mask as well as the cream, but it still causes some symptoms. I have UV protective shirts but usually need sun cream on my arms under them.
Before Lupus I was an outdoor hobbies person and it’s taken years to get over that. I took up writing and did lots of online courses. I’ve nearly finished my first novel, finally. There are lots of writing forums you can make friends on, if that interests you. Hope you can find things to interest you but be kind to yourself. It’s difficult to be motivated or concentrate on even good stuff you usually enjoy during this horrible pandemic, so be gentle to yourself won’t you. XX
I put factor 50 on plus a baseball cap,f I’m not wearing a wig.
I used to love sunbathing,no more.
I try to sit on the shady side of the house.
I tried wearing loose clothes,it drove me mad.
My summer clothes are baggy anyway,I seem to have lost some weight.
I’ve got a sun lounger,but I lie in the shade on it.
Photo sensitivity is just 1 way n which lupus Punishes me.
At least that’s how it makes me feel
Great advise, first summers are really hard & we have had a fabulous May. I have thought I will never enjoy the sun again & I realised I can have my moments and slowly try different things...
Sunblock, goid sunglasses, uv clothes, hats, I even found fingerless light weight gloves/sleeves so I don't overheat in the car etc...
For the last two nights I been going out into the garden to weed until the sun is setting (cooler too)...
I had hoped to go back in the sea again with my full wet suit, now have wet gloves & shoes...just have to work on what to put on my head... will hope after my op & warmer seas I may try ....end of day again...
It is an adjustment & if your very fatigued often rest is a priority...with lock down I can get the rest & do other things when I'm up to it....
ml
I wear an ordinary swimming cap.
We had a gazeebo in the garden for a few years but when that wore out hubby put up a sail which gives loads of shade. Also I got a parasol which gives good shade if walking about or sitting on the beach or in a park. I don't really like the sun so I don't mind that I have to avoid it. I like sewing, knitting, and crochet. I am currently learning French on Duolingo but doubt I will ever go there now. Trying to use exercise bike and stepper when I don't ache too much. Hope you find enjoyable ways to pass the time.
Thank you all so much for all the kind words. I'll write back later after work. Thank you X
Hi I’ve been taking Methotrexate for last 4 years and have always taken 5mg folic acid on the 6 days a week x
Does this help with sun sensitivy?
Sorry no I answered the question on the wrong thread - it was meant for someone else x
I look forward to walks at sunset. It is definitely the best time of day!
Firstly please accept a gentle cyber 🤗🤗 from me comeonpeeps 💐
It's so hard dealing with photosensitivity at first but I do agree with the other replays that u will adapt your lifestyle in time!!
Same as everyone else I have to wear all the kit..suncream..shades..wide brimmed hat..keep arms legs n hands covered at all times..I've got a UV brolley which is great if I'm sitting but not so great when hubby's pushing me in wheelchair coz he can't see the path ahead!! 😹The man has pushed me into so many drain covers n little footpath potholes I've lost count!! 😹
I've never been a sun worshipper due to being fair skinned so have always been a shade lover..but with lupus I've got to be really careful..I don't really go outside much at all this time of year!! When I do sit in the garden..it's in the evening n I sit under a beautiful hawthorn tree n listen to the birds n look over the fields in the distance..sometimes I have a little sing to myself..if the mood takes me!!
I've recently invested in some acrylic paint pens so I've been having a go at painting horseshoes..I used to do it but stopped when I found it too difficult to use paintbrushes..but now I'm doing it again!! 🎨🖍️
I do a lot of puzzles too I love sudoku n I play online Scrabble!!
I have an inkling that I'm older than u though so I've probably bored the pants of ya!! 😹
U will find your way forward it just takes time n experimentation with different things..life has changed drastically n it's a shock (putting it mildly) to find out that UV is a problem..but once u accept it u will find ways to make it part of your everyday life!!
I found it so hard explaining to friends n family that I'd got photosensitivity..all I could think was that I'd become some kind of lazy vampire!! Now though it's easy coz I can just say I'm not going out in this..the weather's awful..anyway u guys enjoy your picnic!! 😹
It's important to nuture yourself so I'm gonna make a suggestion..when u get home from work..forget housework (or do minimal) ..have a cup of something..sit down n take a few deep breaths n just enjoy the moment..what's going on around u..what r u sitting on..what can u hear, touch, smell etc. It just helps to calm the mind n relax the body..put on some soothing music if u like!! Treat yourself kindly!! 🤗
🌈😽😽Xx
Really good thoughts KK. Working & juggling such life time changes is a big adaption, especially when your tired...treats are a must and some down time...ml
🤗👍🌈😽😽xx
I am photosensitive and it has profound impact on my mood. A sunny day would give me the blues a rainy day made me happy. I readjusted my thinking by at least spending 15 minutes outdoors in the sun doing something pleasant, water a few plants and sip a cup of mint tea. My best time to spend lengthier period outdoors are early mornings and evenings – I do cover up. I go for walks, never forgetting water, sunglasses and head coverings. Over time I can expose my skin for short periods without devilish, prickly itches and rashes.
I don’t use time so well and cannot give much help there other than I try not to beat myself up about it. Ah, making cloth masks by hand (two so far) and finishing off paintings I started five years ago and did not have time to finish.
Hi comeonpeeps 👋
Thank you for reaching out and posting this. I have been experiencing something similar and I feel like I’m in a sort of grieving period. I have been feeling quite low about it too.
I am now using the factor 100+ Neutrogena sun cream, long sleeves (I have one top with built in UV protection), and I bought a beach tent for the garden that also has built in UV protection. It’s not the same as sitting in the garden, but it has helped me just feeling closer to the nature out there rather than watching from inside. I have been for a couple of walks around the block but later in the evening, as like you say, no amount of protection seems enough during the day.
Sending virtual hugs 🤗 It can feel so very lonely x
Haubrey1 - I am still grieving the sun restrictions after almost thirty years. Most of my life I have managed to play tennis or go to the beach with major adjustments. Had a set back after going to the Caribbean this winter. But I discovered a new hat! You might want to check it out. It has a light-weight veil that covers your face. The company is Coolibar. Also try Solibar, an Australian company. I think you might be able to sit in your yard in the shade with this hat and maybe go for a walk. Hope so. I can tell you really miss nature.
XK
Thanks, I had a look. The site is great - how do you not boil in one of those and not be a sweaty mess?!
The hats are very light. But if you get flares through clothes, the hat won’t be sufficient.
I wonder if you have a reaction from the sun/ heat and a chemical in fabric in addition to photosensitivity. Photo allergy is on the continuum in lupus patients says my new dermatologist who specializes in connective tissue disease.
Kx
Interesting! I was finally diagnosed by UV tests at Salford Royal. Yes I agree the hat wouldn't be sufficient. 
xx
Thanks for this, KayHimm 😊
I’ll check those out, sounds like it could be worth trying. I’m trying to be careful at the moment as I don’t have an official diagnosis yet and so don’t have any access to any medical professionals who know anything about lupus, so just trying to do what I can on my own until I get seen.
I’m sorry you’ve been having a hard time with it for so long. It’s so tough, but it sounds like you’ve gotten pretty good at making adjustments. Thank you for sharing your wisdom with a newbie!
Get a referral to photobiolology. xx
Who are you seeing? GP or rheumatologist? We may be able to help you move forward.
What are your symptoms and test results?
XK
I’ve been referred to rheumatology at Chapel Allerton in Leeds after some test results came back positive for ANA and anti dsDNA antibodies (level was 129). I have been chronically ill since 2012 but after some gradual improvement over the years I had a sudden flare in symptoms over a year ago now that didn’t seem consistent with the pattern of illness in M.E. (that’s what I was diagnosed with in 2012).
I have a lot of symptoms, and this all started really with a bout of pleurisy back in 2012. I experience a lot of joint pain, as well as muscle pain and get a lot of chest pain (I can’t wear a normal bra any more, it’s just too painful!). I experience a lot of weakness and numbness, I had to give up driving again last year due to dizziness and my lymph nodes are permanently swollen. I’ve been experiencing abdominal bloating more recently, I get palpitations and my fatigue levels affect my daily living. We bought a wheelchair last year just so I could leave the house occasionally with my family. There are too many symptoms to mention really - I’m sure you’re familiar with that!
I have Raynauds, too, and lupus hairline (although I didn’t know that was what it was until very recently). I get rashes on my hands when exposed to sunlight and my skin can tighten on the backs of my hands and tops of feet and face.
It’s been 16 weeks since I was referred, and it’s a 20 week waiting list so hopefully not too much longer before I hear about an appointment x
Oh, you have a lot of you are struggling with. I imagine at this point you would like to get a diagnosis so that you could get treatment.
Wish you the best of luck. Four weeks .. please keep us posted.
Xk
Hello, wow so many replies! What a thoughtful bunch you are. I forget and try and talk to family and friends but they don't understand. I feel like I'm the only one in the world with this terrible condition. I don't know anyone personally with it and just feel so jealous when I'm out driving and everyone is having fun in the sun. I even had a message from my dad and step mum the other week with a picture saying "hope you're enjoying the weather". It really upset me.
Yes my mood depends on the weather, if we have a break from the sun, I'm out with the dog and feel ecstatic. Feel on a massive high, really hard to explain. I like to fast walk with the dog 40 mins - an hour most days. I'm in a fab mood all day then, (the fact I've got out and endorphines from the exercise). And we're both piling on the weight.
Some of you seem to have got the impression that this is a new thing. It's not - started with sun sensitivity 5 years ago. Fully diagnosed 2 years ago. Which is why I can't understand how I'm not starting to accept the sensitivity thing yet.
I have UV film all over my car and still affected through a thick hoodie in winter! I'm very sensitive to lighting too. I really don't see the point in going out in blazing heat, and covering up in UV clothes, I would just melt.
So I've been working all through the lockdown (which I'm very thankful for), I wouldn't have coped not doing AND not being able to go out in the sun. Therefore I can't do sunset as I'm asleep and can't do sunrise as I'm up very early for work.
I took up sewing and enjoy that but it's even been too hot for that! I'm 42, female and single (happily for years) but even if I do start to get into dating, who is going to want a relationship with someone that can't go outside and on holiday?!!!
I can't hang washing out without it affecting me and I'm ill behind glass.
I do feel a bit brighter today actually because the weather is changing. But we've potentially got a few more months of this. It really sucks. I do sometimes think what is the point to my life. But then it's much easier in the winter.
Thank you again all of you.
Anyone in Cheshire?
XXXXXXXXXXXXXX
You describe my situation. I have the same extreme photosensitivity. It's so difficult. I am 38 and want a full life but I am stuck at home behind closed curtains. It's very frustrating.
It's the hardest part of lupus for me because it's so isolating.
You know, I was going to recommend a new item that I got this spring until I read your degree of sun sensitivity. Do you mind my asking your symptoms? I am only asking because there have been some of us with lupus or lupus-like illnesses who have a combination of things that can cause or exacerbate rashes.
We are always having to control our environments, right? Right now your situation is particularly hard since you can’t even go in your yard for fresh air. Really feel for you.
XK
Hi. Even a small amount of accidental exposure can cause headaches that are difficult to get rid of, joint pains (especially chest), fatigue, red blobs etc. X
Blurry and painful eyes. I have ankylosing spondylitis as well so I can get this for no reason also.
That does sound like an autoimmune flare. Hmmm .. will think. If you are getting symptoms through your clothes, there could be an allergic component. If I were in your place, I would ask your rheumatologist whether an immunologist or dermatologist who specializes in allergy might be of help.
These things can get complicated. I have photo allergy to sunscreen. That is separate from my other sun sensitivity. They switched me to zinc based sunscreen and the rashes didn’t come back.
You do sound highly sensitive to sun.
Kx
Before my diagnosis I had a skin biopsy which was inconclusive so that's when I was referred to photobiology and had UV tests. Bingo! Part of the tests there included allergy tests, am fine with sunscreen etc. I've always been a very allergic person especially as a child.
I appreciate every single reply, even if I don't reply to every one of them xx
I should have come back here much sooner. It feels so good to get it off my chest to people with the same. Thank you again xx
Glad we helped!
Hi , I have a day bed with a hood fitted also a retractable overhead canopy fitted so I can sit in the garden after putting on factor 50 sun block. I also have a sun hat and coverup that is UV50 which I bought online from Australia.
Hi everyone, hope you've enjoyed a cloudier day. I've had a long walk out!! : )
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