Coming to terms with avoiding the sun

[AnonLupi]

I practically lived outside, swimming, walking, gardening, reading etc. Now I'm trying to come to terms with avoiding the sun. I'm wearing high spf constantly, hats, full length clothing etc but I'm feeling intensly sad about not going out. The sun affects my skin and definitely causes flares BUT my mental Health is suffering. I live in a very sunny place and people are staring at me for being covered up. My Dr (a Professor of Rheumatology) has started that I must stay out of the sun. Idk how to deal with this.

[StriatedCaracara]

I was always outside too.

I focused on finding an indoor swimming pool that was not too busy.

Going for walks early morning or in the evening is okay some days.

Some of it is around watching the weather forecast and finding places that are more shady to retreat to.

It is difficult but not impossible

I have been depressed about it too and even close family and friends don't really understand things that much.

Definately clothes change. Now have hoodies for every time of year, in lots of colours and weights- it important to have the zip, otherwise feel choked if gets too warm.

I have started to take mepacrine which I think might make me less photosensitive.

It is taking it day to day. In my diary I highlight good things that happen, and try to highlight at least one each day.

I try to let the feelings pass, just noticing them. Need to honour the position we are in and congratulate ourselves for coping living in this parallel universe.

[AnonLupi in reply to StriatedCaracara]

Thank you for relying, I will try to let the feelings pass too. I'm walking in the evening . Focusing on the positives is,slowly coming back to me 😊

[MrsMarigold]

Hi Anon. I’m surprised more people have not replied to this. I live in a sunny and hot climate: 6 months sunny and very hot; the next 5 months or so still sunny but milder temperatures. I loved walking for miles on the beach collecting shells, wading in the water catching crabs. Every year I rented the same beach house for my family and then my own escape later in the year.

So I get it. I think everyone has their own path of acceptance. So thinking back, I learned to get up early and walk, garden, etc., then early evening I also could be outside with my family. I learned going to the beach in cooler months was ok. Better than not going. And I actually enjoy it now.

I wear SPF shirts, hats, leggings. Wearing hats is very trendy now where I live it makes me laugh. I have 2 hats from a company called Tilley. Very fashionable and unfortunately expensive. Big dark sunglasses. I’m so photosensitive I wear them in grocery store. I am lucky to have a pool. I swim early morning or late afternoon

It is a change of Habits first. Then a change in Attitude seems to follow with hiccups of sadness along the way. Last a gracious Acceptance cements your new Habits.

I will always miss the wonderful feel of the sun. Now at night I share a cold drink with my husband under the moon and stars.

Last, I’m very heat intolerant. If you are not, and you are wearing high SPF cream or clothing, I think you can participate in some “sunny activities.” MM

[AnonLupi in reply to MrsMarigold]

Thank you for your reply, I think it was just from one extreme to another shock and I'm slowly crying less😊 I have bought a Stetson (life long goal!) And a,selection of lightweight hoodie etc. It sounds lovely to watch the stars 😊

[RosieA]

You have two super replies. It is not an easy path. I am becoming increasingly ill after (even when I take great care) being outside. My face becomes one great big malar rash in a wonderous puce colour, I can't breath through my nose as it becomes so inflamed and my heart starts to race - not great. I'm now going to have to undergo some cardiac investigations, so it really is important to take our photosensitivity seriously. I was very careful and relaxed before and now am careful but anxious - not great.

All that said, I carefully monitor UV levels and in the UK, in the height of summer, I am out early pottering / walking etc but am in deep shade or inside by 9 a.m and head back out when it's safe. Yep! it's a bore but good friends and the locals around me understand and when I do wander out -it's the cream, hat, parasol (F50) etc.

We have just invested in UV film for the car windows- cut out 99%. This will make a huge difference as I no longer have to count being in the car as sun exposure. We no longer 'holiday' in the peak of the summer but have come to terms with embracing more 'bracing' times of the year.

It is OK to feel sad, our lives will not be able to follow the same patterns but we do learn to slowly adapt - each in our own way. There really isn't an option. We're planning on building a small summer house - oddly with no sun coming into it! Ha! At least I'll be able to sit out in the garden snug and safe and have a sense of being outside. Some sail materials cut out an enormous amount of UV and can make good awnings etc. I do so hope you manage to find solutions that enable you to feel happier.

[AnonLupi in reply to RosieA]

Thank you! I've started some positive moves.... a sun screen shade so I can do my potting on the patio. I was thinking about the car, it's a great idea! Have a good summer 😊

[Olive12345]

I live in the uk so not particularly hot or sunny but I was incredibly photosensitive and reapplying sun cream multiple times a day plus avoiding the sun. But last year it wasn’t so bad and I found that I could tolerate more time in the sun. Then I overdid it and went back a few steps. I think with time, you’ll be able to tolerate a little more but in the meantime modifications can make all the difference. I have a small very outdoorsy child so I couldn’t stay inside but I found with the right clothes, sun cream and hats I could be outside. I sit in the shade when possible and avoid midday sun. You can get some uv liquid to put in the wash with your clothes to turn regular clothes into uv clothes. I usually wear maxi dresses or jumpsuits with long sleeves and high necklines.

[AnonLupi in reply to Olive12345]

Big fan of a jumpsuit! Thanks for your reply, useful tips, especially about the uv liquid. 😊

[IsleofWight1]

I’m jumping into this thread as it was recommended via the one I put on today.

How are you doing now AnonLupi? I think I at the stage you were when you wrote this - gutted, heartbroken, depressed, totally floored by this. I’m trying very hard not to cry, but to treat it head on as I’ve done with all the other symptoms. I’m really hoping you are feeling better than you were. I’m very interested in knowing how you are getting on.

[AnonLupi in reply to IsleofWight1]

Hello! I had some better days, I'm still feeling really frustrated and a little fed up but I'm getting used to it I guess. I went to a bbq totally covered up and just told everyone why. My friend had made a totally shaded area which was really thoughtful. Other than that I'm staying out of the sun altogether. Im hoping to see an improvement in my bloods when i see the specialist next month. Thank you for checking in, that's really kind x x

[posthinking01]

Hi there - I was especially bad before I was diagnosed with a thyroid problem - still have to be careful - but when I was bad there were no SPF umbrellas or clothing etc. and I was literally burning through the windscreen of the car - my hubby had to get a company to darken all the windows for me - I used to go out covered from head to toe in clothing even my ankles I had to wear socks or I would burn - and the exhaustion after being exposed to the sun was so bad I would not be able to do anything the next day. So I feel for you I really do - I am on steroids now and there are days when the heat is such a stressor I have to increase my dose to help the adrenal glands cope with the stress on my body. I have to wear 'sun' gloves in the car as I feel my hands burning as I hold the wheel. I tend not to go out in the sun at all and when there is a heatwave I just stay in - I suffer with the bright red face and dripping perspiration problem from the face - so it is embarrassing. it is not a good way to live I know - I have always since a child hated the sun so it is nothing new I suppose. I have just discovered an amazing sun cream - developed by a dermatologist - reasonably priced to and not sticky - if you don't use too much - amazing stuff and you can wear make up over it which most of them you can't - it is called Altruist - see their website for more information.

Take care of yourself and keep cool !

[AnonLupi in reply to posthinking01]

Thank you! 😊