I've brought this issue up previously, and I think it's time it comes up again. Mental health is something I am extremely passionate about and anxiety is something I have been dealing with now for years.
I experience panic attacks. For those of you who don't know or have never had a panic attack, it is probably the worst feeling you could ever feel. There was a study done with people who had experienced both a heart attack and panic attacks which found that panic attacks were far more frightening and disabling! I hope this puts it into perspective a little!
When I have a panic attack, it feels like extreme fear, and my 'flight or fight kicks in'. I'm usually more of a flighter, I get out of the situation as soon as possible to reduce the feeling, but this only feeds the panic and makes it worse causing me to avoid.. well life.
The physical sensations can vary but include dizziness, trembling hands and legs, numbness in the extremities, dry mouth, rapid heart beat, shallow breathing, blurred vision, churning sensation in the belly, rapid bowel movements - pretty much everything in the body is affected.
My attacks got even more severe when I had to stop driving. I had lost my independence. I was holding on to that last bit of control I had, I couldn't handle being a passenger in the car and was always the driver. I wasn't venturing far from my home at the time. After I realised it was too unsafe to continue to drive I knew I had to stop. At the time I also quit my job because of my vision issues and anxiety. I decided that it was time for me to start from scratch, and so I hit rock bottom.
Rock bottom felt like a big, dark hole that engulfed me from every direction. All the light was sucked out and I was stuck, too scared to move forward. I got to the point where I could no longer leave the house and even looking out the window brought on an overwhelming feeling of claustrophobia and fear.
I knew what I had to do, I had to face it. At the time I was studying a subject called Behaviour Modification (awesome subject) and was learning about desensitization. My avoidance was feeding the panic monster within and the monster was winning. I didn't want it to win. I wanted my life back.
So I started small, I would walk down my driveway (which is like a street in itself) and start down my street. At first I would only get ten houses or so down before I started to feel panic, then I'd turn around and come back. I kept doing this until it got a little easier and then went further.
I was overwhelmed by the traffic on the busy road at the end of my street. There was too much for my failing eyes to take in and process and everything was a blur to me. It made me feel nauseous. So I would sit on the bus stop on the main road and force myself to breath and take it all in. Slowly I became more comfortable with the rapid movement and the little of it I could process.
Next was getting in a car with someone else at the wheel. Now I'm a HUGE control freak, if I could control the weather I would! It was hard enough just to get inside the car with someone let alone actually drive somewhere. It also comes down to trust. I had to trust someone else to be my eyes. Miss Control Freak had to give up her control! Let's just say there was a lot of tears, screaming and emotions flying around when I tried to do this with my friends and family. It started with going 100 metres down the street and coming back. Anyone I go with is now a pro u-turner (as we say in Australia, 'chuck a u-ey').
This is a slow process and I am by no way back to normal. It tests your patience, your courage, your bravery and your belief. I am slowly working my way back, and I want to emphasise that this process is slow and draining. It doesn't happen overnight. There are always times when I feel like I'm going backwards but I need to keep positive and push through. Everybody has bad days and I know I need not take it to heart. Just get up the next day and try again.
Unless you have been through a similar situation, it can be hard to truly understand what it's like. Time and time again I've been told to 'just get over it', 'try harder' and 'just do it'. If it was that easy do you not think I would?! Mental illness is a REAL illness, it's not for attention, it's not anyone's fault and it is just as disabling as a physical illness, if not worse. Most importantly, it should not be something that we are afraid to share, after all, in Australia 1 in 2 people will experience anxiety or depression in their lifetime. Support is the key.
Having a double whammy of illness is hard. But you're not alone. There is help available and most of all support. I get a lot of emails saying that my blog provides 'inspiration', but it's everybody else who inspires me to keep going and keep fighting. Community is one of the strongest forces to produce change and ensure happiness.
Let's continue to stick together to make a difference and keep living our amazing lives!
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.
I've had an overwhelming response from my post "Not just a vision issue" so I have put together a list of links that some of you might find useful for counselling, psychology or even just to have a chat. These are all Australian organisations and if anybody has any from overseas please share.
Most importantly, stay positive and you are not alone :)
Lifeline 24 hour telephone support - 131114
Lifeline
Beyond Blue - Not just Depression but anxiety, bipolar disorder and other mental illnesses
Beyond Blue
Headspace - Youth Mental Health for people 12 to 25 years old
Headspace
