Just a few things I didn’t do before and I have learnt since diagnosis.
Take your time. Whether this is looking at items inside shops or trying to see coins. Washing up or trying to look at a photo. Yeah, it’s frustrating. But that’s the way it is I’m afraid, so, go with it and give yourself a chance.
Wear sunglasses. Not just in sunny skies.
Depth perception leaving me is probably one of the most frightening things. I’ve got to know where the uneven, broken ground is where I live, paths, ginnels and the like. I will walk over it. Defiantly. As if I’m saying ‘I win’… all cocky like. Steps in the dark are terrifying. Especially going down them… No exaggeration. If I’m somewhere unfamiliar, my head will be looking on the floor unless I’m linked arms with someone, them I’m back to being all cocky again.
It’s not your fault you have this. You didn’t cause it by anything you did or didn’t do.
It’s not your fault you were a carrier and now your child has the condition. My parents were, unknowingly. I don’t blame them at all.
Makeup, I’ve bought a large palette of eye shadows instead of the individual ones that I got mixed up with blusher. No lip liners anymore. All my pencils are eye pencils. The brown ones now have bright coloured nail varnish on the ends. The black, I’ve left alone.
You can type and bring an emoji up… Like smile brings up ☺. Monkey 🙊, lollipop 🍭, sad 😔, horns 🤘… etc.
Can’t see emojis.. Usually use the same ones and you learn their names. Saves putting the wrong one up. Especially when you have just given the big blue thumbs up to something sad like I used to do.
Read about the condition. Don’t obsess over it. Your story with develop over time and will be unique to you. Try and relax.
The doggos tins of food, have ring pulls on. So does an increasing amount of other tinned goods. Like tins of beans, tomatoes and jackfruit. Didn’t tell my sister or son this one ☺ (she bought my lad the jackfruit) but the dog ended up having it. I only realised as I emptied it into her bowl. She’s had beans and tinned tomatoes too in the past. She’s loved it. I’ve now changed her food to the big bags and she’s happy enough as she now always has some for treats too.
The progression of the condition will hopefully make it easier for any transitions you find coming along the way. You will get to learn what maybe coming next. Adjust and develop the new skills to deal with it to make your life easier.
This eyeball, headache thing…. Ocular migraines… I had them alot a few years ago. Really debilitating, and painful. My tip… put your sunglasses on even on a cloudy day. Even in the supermarket. Get a blue light filter app too for your phone and devices. Really helped with mine.
Bigger phones and TVs aren’t just for show offs. Some people actually need them.
The sun is sometimes my enemy. Yes… The actual sun.
You aren’t alone. I know you feel alone because the people around you have no clue what it is. You are probably just learning yourself. You just want to have someone nod their head and go ‘Yeah…I get that’ There’s loads of bloggers, support groups, vloggers that are sharing different eye conditions. There will be a support group you can join for a chat. The Macular Society have a list on their website for this. Your hospital eye centre will help get you into contact with groups also. Have a moan… Message me.
Another thing I’ve learnt is you have time to adapt and sort of realise you are doing something one day that was easy a few weeks or months or years before. You just think… ‘Ah right… This is happening’. Like painting. DIY. Need the glasses to paint now. It was a little surprise.
Give yourself some credit. You CAN cope with this. There isn’t a choice. It’s not what you are given in life, it’s how you deal with it.
I never did take looking at a lovely flower, a beautiful sky, a buzzy bee, a loved ones face, etc… for granted anyway. I will have a good look at loads of things on my travels and not just because I’m trying to focus on it. You should too.
Going out for a meal has become less stressful. For now. As I can see (or not see) something happening with this in the future. Ever since I stopped fighting to read the menu. It’s daft really as if I brought the magnifier out I could. But I won’t yet. It’s actually quite nice not to have loads of decisions to make and ponder endlessly over what I fancy eating that day. I can look at an online menu if they have one before I go. Normally, just think what I fancy, and ask whomever I’m with if they have it on the menu.
If you are having a down day, Frightened or struggling. Just let it happen. It’s only natural. You will be grieving for the loss of something we all took for granted.
Ask for help if you need it.
Loved ones may seem abit shocked at first, they will be, but they are also sad and worried for you and have to deal with this in their own way too.
I’ve learnt people will stop at nothing and have no shame. I’ve had scammers in my inbox because of this blog and on the website.
I’ve had people from other countries saying that their doctor knows someone that can cure them. For a hefty fee. Is that true?
No, no, no, no,… no.
The ones I get say they can improve my eyesight. They can’t at the moment.
I’ve also learnt how supportive and helpful people can be. Both the sighted, and the sight loss community.
Kerbs are hazards. Just there waiting for you. I will walk down the road abit further, just to find the dropped part instead, so I can walk over that bit. They are definitely not my friends.
The shock and fear has diminished to a degree. You won’t feel as freaked out and as upset as you are when first diagnosed in later years.
You will understand alot about this condition. Eventually it will all click. Don’t be hard on yourself to learn quickly. It’s complicated and hard to explain.
You have no control over it. What I do have now is a different way of making my life easier, either by reading online blogs, watching youtube videos with people with similar conditions. Some tips I’ve never thought about.
Eyes are very clever at how they help you adapt. What I have found out mostly is, you find a way yourself to work around problems. My eccentric viewing happened naturally without me even thinking about it. My eyes give me the heads up sometimes.
I’ve never loved looking at peoples faces so much. I don’t know whether it’s trying to get a muscle memory of them for the future or just so pleased I can still see them. I just can feel a storm brewing here for when I can’t, so appreciating it’s all now. Would love to see a face like I did even a few years ago, more than anything.
Don’t worry about what happens to your eyes for the future. You can’t stop it and it takes away the enjoyment of now. Appreciate the sight you have right now, this very minute.
I will add to this random set of skills as I go.
One Vision Blog 