I’ve been messaged recently about the blog and a chap with Best disease is thinking of starting one and asked me how mine came about. I replied but thought I would pop it down here after considering my answer fully. He wants to remain anonymous.
The point of this blog started for me when I knew changes were happening and I couldn’t remember what or when the stages of the condition had started to become frustrating, thinking back.
So, I thought write it down and then I will be able to look back and have all the questions that I wanted answered back in the day. Admit to myself that I couldn’t get away with it as at somepoint (and from thereon) like a tipping point, I could literally ‘see’ what was happening. Before that it was just slight difficulty reading.
Used to say I’d forgotten my glasses, needed glasses.
I’m one of those people that if something comes along that I can’t change or haven’t caused myself, I will just get on with it and will always be forever grateful that I have late onset. As I could have easily been struggling as a child with this.
Having said that, writing this down does help me. It was a blumming shock. Frightening at times especially the odd rare occasion, (this is recently) you wake up and you are seeing through a grey blurry fog for 5 minutes wondering if it’s permanent.
Also, I thought it was a good way of describing what was happening to my friends and family if they wished to learn about my… difficult to explain or understand… eye condition.
A shortcut if you will. So I don’t have to explain to anyone really. Unless they ask.
At the moment, I’m blogging alot. I worry about when the glasses become useless and as I keep reiterating… They don’t correct the blank spots or wavy lines… What an earth will I do? I panic if I have misplaced them. Will I be able to carry on with the blog? I have a drive to get everything out now at the moment. There is a reason for this, but will write about it later.
My distance glasses are already defunct in my eyes. (No pun intended) As my distance is still relatively OK. I forget to pop them on. So now I’m left with the predicament that I’m used to my bare eyes outside and what I see. In the home I’ve lived in for 25 years, I feel confident enough knowing what in doing. Distance glasses make me feel unsafe outside as I’ve now got my way of dealing with the new fear of curbs and uneven ground. Putting my distance glasses on would just mess up my natural depth perception I’m used to I think.
Progression of the condition was the one thing that I was obsessed about. I searched endlessly for information.
I must stress. It has taken me 5 and abit years to get to this bit. Some people will get there quicker or slower.
When first diagnosed, I was told this would take between 5 and 15 years to present problems to a point where such things as driving would be advised to stop.
We are all different.
So don’t read this thinking… ‘Blimey, I’m going to be flagging down lorries at the bus stop, waving at people I don’t know and tripping over the dog in 5 years’… If you have just been diagnosed.
It took a long time for me to admit there was something wrong. Now depending on my mood I may even still try hide it if I can. Although I’m alot better than I was initially.
So, that’s where its came from really. Admitting to myself that’s what was happening. Mainly forced into it because I couldn’t hide it completely anymore.
The decision to make my blog public was a hard one. Lots of people didn’t know.
It wasn’t about giving up or giving in. I tried to hide it for so long. But the decision is taken away from you eventually. You just can’t hide it. Then you want people to know as I thought if I don’t tell them. They will think I’m acting a bit strange. So the blog was made public.
Someone asks a question or something happens that day, so I start writing a post. Add to it at a later date. Once I’ve typed a post, I will reread it… Alot, as I’m fairly dependent on the suggestions or middle button on my phone now. Which does seems to go wrong sometimes.
For example… This is what my last paragraph said before I altered it …
So if you do see something that shouldn’t be there or doesn’t make sense. Please message me. I love my eyes… but don’t trust them. They let some stuff slip through the net.
After that, the post goes on the website first, then the Facebook page later on.
I’ve spoken to lovely people who have varying sight loss with different conditions.
They have helped me and I’ve helped them… hopefully.
✌
One Vision Blog 