Category: How I’m Adapting

Posted in Hospital Appointments, How I'm Adapting

Change of diagnosis?

Posted on by One Vision
Green eye, with question mark on pupil level on a white background

OK. So, I’ve known this fact since September (2019) but couldn’t bring myself to write or speak about it until now.

The 3 tests I’ve had were a result of my diminishing peripheral vision and escalating light sensitivity.
They need to see what’s actually going on in there.
The spectrum of Macular Dystrophies isn’t supposed to take your peripheral vision away.
It can make you photophobic though. (Extreme light sensitivity)
The consultant was concerned by this. I’ve got the same pattern as everyone else with Macular dystrophy that he can see, but there maybe something else happening.
It seems to be my right eye that is the worry. That’s where the black blob is in the dark. The blank space at the side of me in the daylight. The reason I think someone is stood near to me when they aren’t and why I have trouble nearly tripping over the dog on long journeys. My eyes give up after a while having to concentrate. Isn’t enjoyable anymore. Or relaxing. Why I have to swirl my head like an owl when I’m crossing a road. The reason why, although I can’t see well in the dark, my room is always dark. I can’t have lights on to see, because they hurt me, cause glare and I am literally blinded by the light. A rock and a hard place.
I haven’t had my results yet. Although you always get a follow up letter after an appointment and I do know that there is a infernotemporal defect in my eye/eyes. It had that on the letter. I did a post at the time. This is your peripheral vision. It’s a biggy. I’m not ashamed to say that I’m very scared and of the opinion ‘ignorance is bliss’ at the moment.

Please click on the picture below to view my past post about this.

I asked him if he thought I would go blind. He said that this is why he wanted to give me some tests. The big ones to find out. I went to 3 different hospitals for them.
One of the appointments, me and my sister made into a lovely day out after we had been. As it was in a town far-ish away that we hadn’t been to since we were children.
I\’m undecided whether to go on my own for the results. When I had the news last year, afterwards I left the hospital, it hit me. I took myself away and just cried. Not full on sobs. Just tears rolling down my cheeks. Angry, frustrated and frightened. Felt very alone and at odds with everyone else around. I had to get the bus back home, 15 miles away. which actually helped, as I had to hold it together. Just staring out of the window trying to take all the scenery in. Thinking of something else, rather than that nightmare.
On the other hand, I want someone there. To actually listen to the doc himself as I will probably just not remember it if it’s bad news and be there for me because I won’t be able to cope with that. If it’s good news then, I will have someone to celebrate with ☺
The next appointment hasn’t arrived yet. I did have a phonecall 18th December last year. Wasn’t prepared, I didn’t really want to know back then. So said I would wait for a letter. What with Covid now, they will be reducing the backlog, and seeing to emergencies. So will just wait till a phonecall or letter to arrive.
Posted in How I'm Adapting, No category yet

Trying to explain the unexplainable.

Posted on by One Vision
Man with a notice board full of notes getting angry and confused
Me, explaining why I can see you’ve dropped something on the floor, or seen leaves on the tree.
But you have to really zoom in on the photo you’re showing me, whilst describing it. All at the same time.
Posted in Any Questions?, How I'm Adapting

Questions I’ve received #3 – Coping

Posted on by One Vision

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 ☺