Light sensitivity
Posted , 6 users are following.
I have had Sjogren's for 48 years. I live in Melbourne, Australia, in a house with all big windows across my living room which faces west. I have let my garden grow abundantly to block out the light (and heat) and had at the left a high gum stump covered with ivy that cut out both magnificently. Two days ago it fell down. Now the light is ferocious and I have to block the windows all afternoon. Even so, I find my dry eyes are so sore that I am miserable for most of the day. Has anyone found a way of relieving this? Special glasses? I live alone with no relatives in my state and looking out on my garden has been one of the few joys left to me in a life dominated by pain of one kind or another. I would appreciate anything anyone can suggest.
0 likes, 19 replies
christine26761 maureen05275
Posted
hiya maureen, im in Tassie,i have put up double roller blinds.the .top one totally blocks out and the white on underneath, blocks the sun out yet you can still see outside really well..we have 3 huge windows and a triple glass sliding door so we too are surrounded by light , we planted all around out fences with really high shrubs,they grew into a beautiful hedge now they do take a tad of looking after but my hubby a good job at clipping the hedges.,we are very private, they go right around our house the front too..., and have an awning outside but our beautiful Ozzie sun is so bright, but it cant get through the double roller blinds..Ive had SS for over 30 years now, apart from pharmacy drops and spray for sore dry eyes, I have managed to sort that part of SS out... Be blessed, and have a lovely week, its so good to chat to another Aussie..and dont believe the rumours that it is always cold and dreary down here.. its beautiful..gets very hot in summer and cold of course in winter, but the sun is soo bright, we lived in Sydney 25 years ago, had a holiday here then went back and sold up best decision we ever made..this state is definitely Gods best kept secret..
maureen05275 christine26761
Posted
Christine, yes how very lovely to hear from another Aussie. I grew up in Sydney (Lewisham) but have been down here since 1969, sooo long, almost 50 years! Thank you for telling me about the double roller blinds. I rang one blind man today but he hasn't got back to me; he was recommended by a neighbour recently when I was looking into a cover for the skylight but on the phone he said 'blind repairer' so I think I shall have to look elsewhere. Today I have been dealing with people who cut up and remove fallen trees. I didn't realise until today, which has been 'beautifully' sunny all day, just how much the tree, with its massive covering of ivy, had been helping me. I have four huge windows and a double glass sliding door facing west and two even bigger windows on the south side but I keep those two curtained anyway for privacy. Can you tell me what the high shrubs are? Did they grow really fast? I would have to get someone to do the work - very bad back to add to the woes. I have been feeling really miserable and frightened; your very quick response has made me feel so much better. I have been trying to tell myself "you can manage this; you will be alright" and now I really believe it! I will need to get on top of it before the major heat and light of the summer. I will try to let you know how I get on. Thank you again. Consider yourself hugged!
christine26761 maureen05275
Posted
hiya maureen, buy fast growing native shrubs, they grow quickly plant about a metre apart we have bottle shrubs on the back fence and .?? Ill send you a photos, the side and front..there a mixture of natives at the side including lots of PHOTINIAS which are beautiful wuthred keaves and huge white flowers at the right time of the year..some Calistamons -think thats the spelling , they have either very mauve ip, yelliw ir white bittle brushes..and atthe front we have.???? firget thebane but they all griw quickly and end up like a hedge...anyway ill send you pics you might kniw the bame, hope yiu end up with things all sirted..theres nothing worse than what we go through,,I akso have Fibromyalgua and Arthritis all auoimmune ..grr at keast the Sorgrens seems only be on the head....and the fibro I only getbad fkare uos and well arthrutis who hasnt got it today over 60...lol lots of hugs from over the seas, be bkessed have a kovely week..
they have changed how you add a photo so ill emaii them to you by using the little envelope under your name,hoping thats the same as it used to be.. soon see xxxx
christine26761 maureen05275
Posted
i really hope you can open these photos maureen, hubby just took them, it was a real job doing this I had to just email them to me then copy them and paste them here....gggrrrr..,things used to be soooooo easy on here... xxx
christine26761
Posted
oh look theres one photo..it was only wirds befire..yay...dony know what hapoened to the others..i dont know what this one is called but it is a native..its at the front...xx
christine26761 maureen05275
Posted
this has lilypilly in it but the other basically overtook it..lolxxxxxxx
Jalanez maureen05275
Posted
Hi Maureen, I live in Florida and I feel for you with the light sensitivity. I use the blackout curtains and eye drops and these help. I also have shades with sheer curtains that I use to adjust the flow of light into my rooms during the day. At night I will use yellow tinted glasses to help my sensitivity to the light while driving, they really help when I have to drive! When sunglasses are not enough (and I have super dark glasses) I combine them with the disposable shades the eye doctor office hands out for patients who get their eyes dilated, this helps a lot. I hope some of this is useful.
Jalanez maureen05275
Posted
Hi Maureen, I live in Florida and I feel for you with the light sensitivity. I use the blackout curtains and eye drops and these help. I also have shades with sheer curtains that I use to adjust the flow of light into my rooms during the day. At night I will use yellow tinted glasses to help my sensitivity to the light while driving, they really help when I have to drive! When sunglasses are not enough (and I have super dark glasses) I combine them with the disposable shades the eye doctor office hands out for patients who get their eyes dilated, this helps a lot. I hope some of this is useful.
marie89364 maureen05275
Posted
So sorry you are all alone and not feeling well. Have you tried eye drops. I find that sometimes helps me. I was diagnosed with Sjogrens 20 yrs ago.
maureen05275 marie89364
Posted
Hello Marie. Thank you for taking the time to reply to me. I do get very frightened at times and being alone makes it hard so a kind word is always appreciated. I do use eye drops but find that although these help the dryness they do not help the light sensitivity. I hope you are managing your symptoms and finding things not too bad. Thank you again. With best wishes. xx
christine26761 maureen05275
Posted
christine26761 maureen05275
Posted
maureen05275 christine26761
Posted
Dear Christine - you have done an amazing job with these photos! I have been on Patient forums for years and never, ever seen photos like this! Thank you so much for the effort. Your shrubs are most impressive. I can't tell what they are (despite once being a biology teacher I am very bad at plant identification) but I can ask around. I am familiar with the Photinia. I have a very large one at the back that cuts out a lot of light where it grows but, even though very large, still isn't high enough to block the afternoon sun. I rang yesterday a friend who installed the kind of double roller blinds you spoke of and asked her for the name of her company as she was given very good service. So I am on the way. Thank you again for your kindness. xxxx
christine26761 maureen05275
Posted
happy your looking st the blinds, they will really help, i used to use the glasses toppers too, but as you say they really are cumbersome, i have glasses now that turn into sunnies but the sun still creeps in ..glad you liked the photos..it is the weather down here, but...having a great hubby help no end of course..hope you get sorted really soon, be blessed and have a lovely day. xx sooo good to have another OZZIE on here..XX
estelle44124 maureen05275
Posted
I HAVE ALWAYS HAD LIGHT SENSITIVITY EVEN BEFORE DIAGNOSED WITH SS. ALWAYS HAD TINTED PRESCRIPTION LENSES BUT DENSITY OF TINT IS RESTRICTED BY LEGAL LEVEL OF ABILITY TO DRIVE AT NIGHT. However, an optician sold me non prescription overglasses. They're just like sunglasses.
I then bought two more pair online.
I searched sunglasses, overglasses and this is the sort of result:
"Turn prescription glasses into Polarised sunglasses in an instant! Full UV400 protection, eliminate glare and improve visibility; Lightweight and stylish unisex frames; Shatterproof lenses; Also available in brown / tortoise ..."
They are very reasonable. About £15. GDP
They also have small side pieces to prevent eyes drying from wind etc.
I keep a pair in the car and another in my handbag. Fluorescent lights cause me sensitivity too.
I am sure you'll get yourself sorted. Australia is blessed with sunshine and you need to be able to enjoy it.
Apologies for all the caps at the beginning, by the way 😦
maureen05275 estelle44124
Posted
Hello Estelle
Thank you for the suggestion. Many, many years ago I wore over-the-top sunglasses but after some time seemed to find them cumbersome. I am talking over two decades ago. The ones you describe sound so much better. I have copied the bit you put in inverted commas and will paste it into Google and see what I find. I gather you don't wear them in the house? Do the tinted prescription lenses give you enough protection inside the house? I have the Vision side shields in my prescription glasses (the only one in Australia to have them I think) and these have given me protection for the last 20 years. I couldn't manage without them. I don't quite know if I could put all these things together but I will certainly look into it.
Thank you again for taking the time to help me. Best wishes Estelle. xx
estelle44124 maureen05275
Posted
we have recently moved to a very small retirement flat. I needed a comfort blanket around me after two years of fairly stressful events covering myself and my husband.
It only has two windows, and we don't get direct sunlight.
My son lived in Sydney for 5 years. on his return to Manchester UK, his comment was how grey everything is. We get ecstatic when the sun shines!! This year has been exceptional.
With me it's not just sunshine, but lights as well. I can attend a meeting, or be in a room with bright wall lights and eventually my eyes start to hurt. I used to feel self conscious about wearing them indoors, but am over that. At 76, life's too short.
Hope you get sorted. Vari-focals were no use to me as they only react to sunlight, not electric.
KEEP WELL xx