I all, I’ve looked on the site of the Lupus site and it was very helpful.

[Teanna]

I saw my Dermatologist last week and it seems that I am sensitive to UVA and UVB. I get burnt even when it’s dull but if a slight blue sky for 5mins, I blister even though I’ve got 4 different creams. I’m also suffering with severe fatigue, and it’s not just feeling tired etc, I don’t want to do anything, I’m in a lot of pain with other health issues. Has anyone got any idea which would help? I even cancel going out to other appointments. I can go days without sleep (half to do with pain). I know I’ve been on here moaning as usual, but I’m slowly giving up. My family live quite away, I do have a full time carer during the day, but nothing nor anything can get me out of this mess. I burn easily so my housing are going to up UV on my windows, but it’s this fatigue that I can’t get over this. HELP!!!!!!

[Paul_Howard Partner LUPUS UK]

Hi Teanna ,

I'm sorry to hear that you are struggling with these symptoms so much at the moment. Are you currently taking any medication for lupus?

We have a couple of articles on our website which you may find helpful if you haven't read them already;

Coping with Light Sensitivity - lupusuk.org.uk/coping-with-...

Managing Fatigue - lupusuk.org.uk/managing-fat...

[Krazykat26]

Hi Teanna 🤗

Sorry to hear that you're still suffering 💐

I've just had a dermy appt too n I'm severely affected by UV rays n indoor lighting..great idea to get the UV film up on your Windows..also u can check out the eclipse section on lupus UK website..that's how I found out about lightbulbs!! It's very informative n it might be the indoor lighting that's making fatigue worse for u.

I had a flare last February after we had had a lot of snow n thought that maybe that was the reason...but when I looked at eclipse I realised that led n flourescent lighting can trigger flares in us photosensitive lupies!! I had recently moved into a bungalow that has a five foot long flourescent light in the kitchen!! Others here have also reported feeling very unwell in workplaces where there is bright lights!! For instance we went to a super huge Tesco's near us recently to get the flu jab n the lighting is horrendous for me!! I had thought that I might have a little look round the shop (I don't get out much) but I decided against it because the lights were already making me feel ill!!

If u think u might be sensitive to indoor lighting..it's best to go for warm white lightbulbs..I tend to use lamps rather than overhead lights now!!

I'm glad that you've had a look at lupus UK website..does that mean that you've treated yourself to s new phone? If so great!! Now u can keep in touch!!

Fatigue is awful n I can't say that I've found any way to manage it other than just resting..if I try to carry on pushing through it it just gets worse!! However I do really congratulate myself when I manage to do something..n when I can't I try not to get too frustrated (easier said than done)😹

I've also found that talking about things really helped me..getting things off my chest helped me to get some perspective on how I could try n manage better. I phoned MIND n referred myself n I now have a wonderful lady there who I can ring whenever I feel the need to talk about what's going on!! That lady is priceless as far as I'm concerned..she listens..that's soooo important!! She doesn't know about about lupus but she's only concerned about my mental health n wellbeing!! She is learning about lupus now though!! 😹😹 If u feel isolated it might be an idea for u to look into getting some psychological support so that u can talk about issues n not feel judged..but supported!! It works for me!!

Take care

Kat 😽😽 xx

[Teanna]

Hi Kat, thanks for yr advice, u think that yr own yr own but their are people like yourself going through the same thing and understands exactly what yr going through.

Loneliness is one of the worse time for me, it gives u time to think etc, but as u said about Mind, I’ll have to find the number, I thought that they only dealt with the OAPs ?

I did not realise that I have a small lamp the side of me (it’s a very small amp) but that’s my worse side on my face, so I’ll be changing the light bulb, thank you.

Again thank you for yr info and taking time to answer and advice with this awful thing.

Take care and hopefully keep in touch.

Regards,

Teanna

[Krazykat26 in reply to Teanna]

Not at all..MIND care about everyone's mental health..of all ages!! If u Google it u will get there!! It took me ages to refer myself but I needed to get my head around things..being told that u have an incurable autoimmune disease..n that u can't go out in the sun..that's really heavy!! Trying to explain it to people..I was very aware that they thought it was mad!!

At our local branch they have a cafe n people meet up every lunchtime n have some munch or a cuppa..it's a really lovely vibe!! Whilst I'm having my appt..hubby sits n has a cuppa n some cake..he loves it too!!! Can't recommend it enough!! 👍👍👍

Physical health affects mental health..n mental health affects physical health..catch 22 situation..n when you're living with constant pain..well that's gets a gal down..it's natural!! Seek support when u feel able..coz after all you're worth it!! 🤗🤗Xx

[Teanna in reply to Krazykat26]

Thank you. There is not enough information about lupus and the fatigue that goes with it. Even the doctors seem to look at you as your going mad. Being alone don’t help!! But I shall google Mind, I always thought that it was for the elderly. Thank you again.

Teanna