Posted in Hospital Appointments

Hospital Appointment September 2022

PICTURE DESCRIPTION Picture of myself in cartoon form looking sideways into the distance with hands resting on face.
PICTURE DESCRIPTION Picture of myself in cartoon form looking sideways into the distance with hands resting on face.

So. I was really early hanging around the hospital for my appointment.

I was sat under a tree outside with a coffee just pondering stuff like you do.

Eventually went inside and you still have to wear a mask. Didn’t have one, but they have a box of them at reception.

As I was in the waiting room I looked at the board and it didn’t have the main mans name on it.

You can tell what’s coming next can’t you…

Was called for my eye test. They gave me the pinhole glasses straight away this time, which I thought was quite funny. They have obviously read on my notes that last time I needed them to help a little more. I seemed to be on the same lines as before. Although I do keep explaining that the pinhole glasses don’t correct or help the tiny blind spots that make some letters look like others (C instead of O… F instead of R and vice versa) at all.

Then I was sat in the long narrow corridor waiting for eye drops to be popped in. Apparently I was having a retinal scan. Saw the door that had the sign Octopus Fields on it again, (I’ve wrote about this before) smiled to myself and started singing that damn Ringo song in my head yet again.

The drops take about 20 minutes to take effect. They open up the pupil to stay open. Your pupil gets smaller when light shines into it. In dilation, your doctor uses these drops to allow them to see much more of the back of your eye, including the entire retina, the part of the retina called the macula, and the optic nerve.

Had my scan which entails looking into a lens with lines of blue light that take a photograph of the back.

“Am I seeing someone today I ask?”

“yes”. Well at least I’m seeing someone.

Wait to see the fella. While I’m waiting I start to shut down, which sometimes happens from time to time when I’m here. I look around at the packed corridor and feel out of place as I feel I shouldn’t be here. That part of me still believing they must have this wrong, even though I know I cannot see how I really should be.

Anyway. I’m called to go in and the fella explains that he’s looking today mainly at my PED (detachments)

Now, probably because I thought I was going to get answers to tests long gone and the fact I’m putting all my eggs in one basket for the main man that I have yet to see. Right at this moment I don’t want to know. Wanted to get out of there and forget I’d been.

I know what you’re thinking. But I’ve learned that this feeling isn’t all the time. Just disappointment that it isn’t what I thought it was today. I know I should ask questions and not just sit there while that bright light, in a dark room, is being shone in my eyes once again, while the eye doc is looking through his magnifier.

He says he wants an urgent Visual Field test because of the problems I’m having with my right eyes peripheral vision which shouldn’t be compromised with the condition I have.

He explains urgent appointments usually are within the week but it probably won’t be.

I leave my yellow sheet in the in tray and decide i need to debrief with myself and mainly get a grip. So take myself into the main hospital and get a cuppa, sarnie and an orange.

I make a few phone calls and just leave everything I’ve bought sitting there as I don’t want it right now. I’m really annoying myself now by the way.sup0

I suppose a lot of people in my position do the same. I’ve gone on my own again and at least now I’m here and will have a word with myself before I make the journey home.

My follow up letter for my appointment came quickly. It was for 16 days time. (Saturday 17th September 2022) I’ve already wrote about the follow up letter if you would like a read. Please click on the link below.

Follow up letter

Posted in Step around The World Challenge

Step around the world challenge – updated

Yippee!

I’ve received my certificate and medal for my Step Around the World Challenge, raising money for the Macular Society at Easter.

I must say. I do feel like wandering around wearing the medal just ‘cos I can.

It was more of a mental challenge.

Anyone that knows me, will know that I’m obstropalous (my Dad used to call me it. I don’t even know of that’s a real word) so I was gonna complete this regardless. All in one go.

I’ve learned that you can get through anything if you put your mind to it.

I only started walking/hiking really in February this year due to having to cope with a mental health situation.

I needed to make myself better.

I found that it took my mind somewhere else and seeing nature and being outdoors really helped.

When I started bobbling about initially, i did 3 miles, then I got to 5 miles, then 8 miles comfortably, I decided that I must do something positive with this random new skill I was enjoying so much.

Do many miles than what I was comfortable. Take me out of my comfort zone. Stretch myself mentally.

It was originally supposed to be 10 miles on the Saturday, then 5 on the Sunday at the Easter weekend.

This was suggested by my son. So I thought if he can think I can do it, I can.

But, once I walked around Derwentwater and got back into Keswick town centre, it was 11 miles.

I decided that it would be easier to walk an extra 4 miles that day than wake up on Sunday, aching and wondering what on earth I was doing and why I had set this challenge for no reason whatsoever.

So thought I will just carry on. Do it all in one day.

This is where your brain power kicks in.

A mental challenge rather than a physical one.

Don’t get me wrong. My hips at 13 miles felt like they had been smashed repeatedly by a hammer.
Considering, just a short while earlier in the year, I was moaning about walking a mile or so into the town center at the lakes.

Thank you to everyone that messaged me willing me on.

Thank you for watching the live feeds on Facebook and Twitch.

Liking, sharing and donating such an amount that I never could have expected at all.

I set the amount at £100.

And then I thought I was pushing it.

Hopefully this money will help to find a cure or treatment that many of us within the Macular Dystrophy spectrum, desperately want and need.

PICTURE DESCRIPTION Picture of certificate raising £516.42. Thank you note and medal from the Macular Society.
PICTURE DESCRIPTION #2 Picture of phones pedometer at just over 15 miles completed.
Posted in Follow up letters

Follow up letter.

I received my follow up letter.

I’ve got a ped (Extra small Detachment) still in my right eye.

My left eye hasn’t got one now. It’s gone!

My left is still 20/60 (with pinhole glasses)

My right eye is still 20/80 (with pinhole glasses)

There are macula changes, but this is stable.

Retinal photography shows the RPE has changes since last time photography was taken.

The RPE is a pigmented layer of cells that are located outside the retina and attached to the choroid.

The role of the RPE (Retinal Pigment Epithelium) is to nourish the retinal cells. It does this by bringing nutrients to the nearby photoreceptor cells and carrying waste products away from the cells and into the Choroid . This prevents damage from built-up waste materials.

Plan is to have urgent neuro diagnostics requested including Visual Field test and new OCT disc scan. Which I’m having tomorrow.