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.