Saturday, January 18, 2014

The things you don't get told!

Over the past few years I've learnt so much more about what is actually involved in being vision impaired. When I was diagnosed, I was not told much except I will progressively lose my central vision. I was not warned of any of the other aspects I might experience. Here's a list of things I've learnt and what I do to help. Please share any other tips!

1. Eye pain: Typically I experience eye pain after a day at work or a solid studying session (usually after about one hour). I'm assuming it is related to the strain I put on my eyes to try and see everything as best I can! I experience this daily and it gets VERY frustrating.
What helps: Before reaching for my Panadols (paracentamol) I first try and rest my eyes. Since I always have to be doing something I will either close my eyes and meditate or have a nap. Obviously I can't just lay on the floor for a nap at work (I have tried!) so in worst case scenarios I go for pain killers. I also have found an eye drop that has helped with the burning and heat (Systane Ultra) and you can use this as much as needed. I usually use this after being on the computer. 

2. Headaches/Migraines: This is something I've struggled with for a few years. Generally I get a migraine on my left side which is the weaker eye. Migraines can be extremely debilitating as not only is the pain intense it can cause nausea and further sensitivity to light. I've learnt my triggers for an attack, including sun glare and overworked eyes, so I try to intervene as soon as I feel it starting to take over. Sometimes the attacks are so severe I have to take time off work. At the moment I get about one a month which has reduced. 
What helps: If I am having an attack, I sit (or sleep!) in a dark room and usually wrap a scarf around my head (the pressure helps the pain). Generally I don't find over the counter pain killers effective and I avoid taking anything stronger. My migraines have improved since changing other medications I was on so it's best to talk to your doctor too. Someone also told me to put a drop of lavender oil on each temple and I find this relaxing. To prevent an attack, I'll avoid spending too much time outdoors on a day with high glare and always wear sunglasses outside, which is a given for Stargardt's. And drink loads of water!

3. Sensitivity to light: Some days are ridiculously hard to be outdoors and even inside with the curtains open. Not only does it lead to headaches and migraines, I find it harder to focus and see. I'm guessing this is because the peripheral vision uses light perception to form vision, and since that is what I rely on to see, I am extra sensitive to it. 
What helps: If outdoors always sunglasses! Otherwise unfortunately it's a day where instead of being outside I put on a movie and stay inside!

4. Neck/back pain: I'm surprised my neck is still attached to my body after all the bending it does to read! I'm constantly leaning closer to the computer screen, iPad or whatever is I want to see! This is another constant pain. 
What helps: Making sure that the desk you are working off is set up well, with an arm for the screen. Also any adaptive technology to make the font bigger to eliminate the need to lean. I've also found that getting a remedial massage once a month to be a great help (and I enjoy massages). Massage also helps with the migraines/headaches. 

5. Anxiety/Depression: This is a HUGE part of diagnosis that is not addressed. It is understandable that when you are told that you are losing your vision, feelings of anxiety and/or depression develop. It is a hard thing to deal with. The most important thing to remember is you are not alone in this!
What helps: Talking about how you feel and what you are going through can help a huge deal, if it means talking to friends or family or speaking to a therapist. There's lots of strategies to deal with anxiety and depression and it's not something to be ashamed of. I for one battle anxiety a great deal. As I've mentioned in a previous post the grieving process ties in with these feelings. Also try mindfulness meditation, I have found it really helpful and it's also a time where I can rest my eyes. 

Our experiences are similar but also unique. The best thing we can do is talk about them and help one another. Sometimes simply knowing somebody else is experiencing the same pain or emotions can make you feel a little better. 

9 comments:

  1. Yes! My husband has been on the same journey as you. I have followed your blog and each time you post, its almost exactly where he is too. He has all these side effects too. One thing he has found helpful is acupuncture and some Chinese medicine. When the headaches and neck tension get beyond relief, we get him in for a few sessions of the acupuncture and it stops things.

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  2. aspercreme--it is a rub in creme ---my neck goes through hell after too much time in the computer --i am 62 and have been leaglly blind from the age of 15 frustrstion is my middle name ---you will learn as you go along --don't know what your age is --but my advice is never let anyone tell you (you can't) only you can decide that --but before you say that at least try---i could tell you many stories good and bad stay strong -----my name is chuck candb250@yahoo.com ---good luck

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  3. I think I've developed over the years a bad posture as some would say. I also need to take time off from work, 1 day per month or sometimes more if the migraines get worse. I've also noticed that if I keep my eyes hydrated I don't get migraines. Sometimes, several days of migraines on and off also could mean that you need more magnification (increase it by few notches and see if it helps).

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  4. Thanks so much for this blog. I am 57 and have had stargardts for 25 years. During much of that time my eyesight would make small declines then plateau for a while. But the vision loss in recent years has rapidly progressed. I still have a small amount of usuable sight in my left eye. You are absolutely correct that we often get little warning of what to expect and I ditto everything you've mentioned above. Another concern I've dealt with is the reaction of other people. Some are offended when I don't recognize them in public. I try to explain but many can't grasp the concept of 'central' vision loss. They seem to equate stargardts to far-sightedness and ask why I don't get new glasses. I also never expected the personal battle to stay socially invovled and not hermitize. I never expected the anxiety and fear of public places to be so overwhelming. But I am working on that and reading the experiences of others is helpful. So we are challenged right? Honestly, with the all the pain, fear and confusion...I like being challenged. I like solving problems and pushing to be stronger. Anything else would be so boring...well, that's what I tell myself. Thanks for your blog again!

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  5. HEY ==CHUCK HERE ==THE PART YOU MENTIONED ABOUT FOLKS NOT UNDERSTANDING ==YOU ARE TOTALLY RIGHT ON THE MONEY-I HAVE BEEN LEGALLY BLIND FROM THE AGE OF 15 I'M NOW 62 AND MY OWN FAMILY ===SIBLINGS STILL DON'T UNDER STAND HOW STARGARDTS WORKS OR ===DOESN'T WORK--I DO WELL IN SPITE OF MY CONDITION==IN MY CASE MY EYES LOOK NORMAL AND I DO GET BY== SOME PEOPLE THAT AND SOME THAT DO KNOW YOU THINK AWWW YOUR OK YOU JUST DON'T SEE AS WELL AS OTHERS IT'S ALMOST NOT WORT TELLING PEOPLE --UNLESS WHAT I CALL (A NEED TO KNOW BASIS==I HOPE YOU ARE DOING WELL ========CHUCK

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  6. Here's what helped me: For the last 10+ years I'm doing Tai Chi, almost daily. The combination of gymnastics and meditation/concentration reduced my back and neck pains significally and gives me a inner strength and piece of mind that I can rely on dealing with the everyday difficulties.
    Cheers!

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  7. Good thing you have your own remedies for the pain you are experiencing, and all of them are positively working for you. Anyway, getting a massage and focusing it on your area of pain really does wonder. In any way, I hope you're faring great. Thanks for sharing that, Chrissy! All the best to you!

    Minda Mazer @ My Canton Chiropractor

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  8. Eye pain is often described as burning, sharp, shooting, dull, gritty, a feeling of "something in my eye," aching, pressure, throbbing, or stabbing. Sometimes eye pain is confused with other symptoms, such as a headache, sinus pain, toothache, or a migraine. Eye pain is a common reason for people to seek medical care from their doctor (or an ophthalmologist, a specialist who deals only with eyes).

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