Posted in Any Questions?

Questions I’ve received #4

Questions I’ve received so far from my website, fb and Instagram.

So last time I did this I took the strange, odd, plain weirdos out and didn’t post them.

It doesn’t bother me… I’m still going to answer them. So remember people. If you want me to answer a really odd question. I will! Haha!

Back then, I was trying to be a sensible, professional type blog, but then thought I just have to be more like me.

This time, here you go. This is what happens…

🟢 Jane – Who’s your favourite sister?

Me – You sis obvs.

🟢 Anonymous – You have a very good sense of humour! Are you really so positive? I find it very hard sometimes.

Me – So do I Anonymous! In my opinion though, and this is just my own. I cannot be worrying about stuff that’s out of my control. That’s not my own choice. If decisions are taken out of my hands, I will give up until there is some hope or I hear differently. Then I’ll fight. I can only put it out there for a miracle!

🟢 Anonymous – Would you rather be blind or deaf?

Me – Pardon? 😉

🟢 Micheal – What’s your accuity now please?

Me – Last measured (end of 2019) (20/60) Left eye, (20/80) Right eye. Both corrected with glasses whilst reading the chart. Will update the blog when I have more results.

🟢 Andrew – Can people with Stargardt get guide dogs?

Me – Yes. Like any person with visual impairments. If you fit the criteria and think it would help. Yes, you can apply.

🟢 Rav – Did your toenails fall off due to your charity walk?

Me – No. Feet completely fine. My hips though…

🟢 Anonymous – Will you marry me?

Me – At least ask me out for a drink first 😉

🟢 Weirdo – Do us no we can cure md lady? Etc, etc, link, etc…

Me – No you can’t. Horrible how these people hunt you out to try to extort money from you. There’s no cure or treatment. As yet!

🟢 Angry Person – If your blind how cn you make people? C*** (I’ve censored this)

Me – First of all, It’s you’re. Secondly, I’m not blind. Never said I was. Thirdly, Not a clue what you are on about 🤔 Please learn to spell and use grammar.

🟢 Another weirdo – Were you live👌🍆

Me – Planet Earth.

🟢 Angry Person #2 Haaaa ur blind

Me – Which charm school did you fail from fella? Please read my blog properly. You may educate yourself.

Update…

Thank you for a few messages I’ve just got after posting this.

No. I’m not going to ‘out’ their names or aliases. That isn’t my style at all. I actually wish them well. These people are probably hurting somewhere down the line ✌️

Let’s concentrate on the positive ☺

Posted in Any Questions?

Any Questions #2 ?

PICTURE DESCRIPTION Picture of girl with red hair stood up with question marks around her head.

This blog isn’t just about me rambling on. It’s about you lot as well.

The sighted people, the people within the Macular Dystrophy rainbow of conditions, the family and friends that have a loved one with this condition. Each and everyone of you that read, follow, like, message me or comment, I’m so thankful for you each and every one of you. Means alot! 💜

I know if you haven’t got this condition and reading this blog to understand more due to a loved one having this, or you have this condition yourself, it is hard to understand. Hopefully by reading this blog, it’s gives you some insight to what we are dealing with here.

All of you have really stuck in there. We are all learning together as we go on.

Please remember though. Everyone is different. This may not be the way for some people with exactly the same condition as myself. There will be similarities and alot of ‘yeah, I do that’.

The progression maybe further on after 7 years than me, or maybe less. When I first googled for information (don’t Google ☺) I was hell bent on seeing how other people were coping years later. Obsessed. What their acuity was? Did you go blind? etc.

I’ve learnt since then, all that doesn’t matter. You can’t judge it. All you can do is hope for a slow progression of the condition. With long periods of plateau.

I also really love hearing from you! You are all helping me personally by being here.

Do you want me to tell your own story here? It maybe useful to hear another story other than myself, or are you doing a sight loss fundraiser maybe? Or have your own similar blog you’d like to promote so we can spread the word and gain more awareness for us all? Let me know. I will happily write up a story introducing you. Please give me a message if you fancy it and we can work something out.

Also. If there’s any questions you want to ask if you don’t understand anything, something to have me answer personally, Q and A style (no question is a daft question) and no question is off limits.

Want something covered here? Let me know.

So message me or comment below with your questions and I’ll post a questions blog up about them. I will just use your first name or if you prefer you can be anonymous.

Posted in Any Questions?, How I'm Adapting

Questions I’ve received #3 – Coping

It’s cuppa tea time for this one I think…

Another Question. How do I seem to accept my condition?

Hard question… Very difficult to pop all this down.
Truthful answer? I don’t have any choice in the matter. I’ve always accepted lifes curve balls if there is nothing I can do to change the matter in hand. You just have to find a way to accept, adjust and adapt in a positive sense. It\’s not what happens initially, it’s how you cope through it. Makes all the difference. Certainly doesn’t make me bulletproof though.
This is my second greatest fear. Health wise. But not THE greatest fear of mine.
Throughout my life I’ve had some weird eye phobia. Squeamish and a fear of going blind. I had no idea why. But my eyes knew.
If my friends have had a stye, sore eye, black eye and they want to show me. I don’t want to see. I feel breathless and want to cry. It’s become a running joke. They would even tag me on facebook so I noticed. Buggers they are ☺
My Dad had 2 laser eye surgeries and 2 cataract operations. Guess who went with him? Me.
My mother in law at the time had her cataract done. Guess who went with her?
My sister had an eye op years ago… Who picked her up? Yep me again.
So it was joked that the most unlikely person. Was the eye op carer. Appointment taker.
A case of “don’t look at your dad” as he came out to the car as he had a clear patch on after 2 operations. Would put fear into me.
I ran out of casualty once because someone I knew got metal in their eye, the drops turned their eye green. I nearly fainted. Felt so bad for the person too.
I’ve always throughout my life felt terribly sad when I’ve seen a blind person. Not pity. But a great sadness for them.
So in a way, I really don’t know how I would cope if this could be treated. I don’t think I could have an injection if they found one. Can’t bring myself to type it. But you know where. They would have to knock me out.
I’m a lot better than I was. As I’ve had to get used to all the doctors near my eyes and tests.
Although, having said that. Whilst my sister was driving to my appointment last year for my ERG. I actually read the letter properly and started panicking saying I wasn’t going to have it done, because they had to put metal wire sensors upto your eyeball. I did though, because I need the results.
Also. The way I cope is. I’ve always said that I will cope with anything unless it’s a terminal outcome. This I won’t die from… Unless I don’t cross the road with due vigilance ☺
This could have been far worse news that day. I may feel differently when I’m having real struggles with seeing. At the moment I count my blessings and thankful this was late onset and not something life threatening growing in there.
I’ve seen what that can do to someone. I looked after my mother through a terminal diagnosis when I was 22/23.
So because of that, (my greatest health fear) I cling onto the fact it could be worse. I don’t have any other strategy. Worse in diagnosis. This is the best vision I will have. Right here, today. It’s not going to magically improve anytime soon. So I’m grateful. I don’t hate my eyes. I’m proud of them for giving me so many years before starting to fail. I feel time is running out with my vision. I know much, much harder times are ahead and will deal with those when they arrive. Will be nothing like how I live right now. It seems I don’t want to spoil the here and now for myself. To take advantage and appreciating me being free, right now.
This is my own personal view. Everyones ability to cope is all relative to themselves. So I’ve answered it openly and honestly about my coping mechanism and the one reason why.
So, in a way its easier for me to cope thinking this way…I have to… for now. I can’t change it. It’s nothing I’ve caused myself. Nobodys fault. A fluke of nature.
Don’t get me wrong though…
I get upset and frustrated. Worried I won’t remember faces. That’s the biggest sadness. Forgetting faces. Be independent. Having to rely on others for help. Think no one will ever want someone with this looming over them. Think people will avoid me as they are either embarrassed or it’s just too much hassle to cope with, for themselves. Treat me differently. All the things everyone seems to have with this condition.
You feel extremely lonely and alone. Because it’s not easy to explain or show someone what’s happening. Like you are in your own bubble. Sometimes you do just want to give up, hide away. Or make the most of the time you can go out independently, just go on massive benders, take risks all the time. Just because at the moment you can. Borrowed seeing time and all that.
I feel tremendously sad. When I think about it. I’m just a normal person. No stronger than anyone else.
This isn’t meant to be a sad post. It\’s just the facts as I see it. (No pun)
The future is worrying but I’m taking the now away from myself. I will sit back one day when that ticking time bomb goes off , the unstoppable train and think, when I was relatively OK, I should have gone out there. Done things. I’m borrowing trouble by dwelling on what’s to come. So, if anyone says to me… Do you want to do so and so… I will.
So if you want to… I’m in ☺