Picture description: A glass of pink fizz in a champagne flute bubbling. A plate of food is blurred in the background.
So last Saturday (24th October) it was exactly one year since I first started developing PIC symptoms and the journey of one of the most challenging years of my life. And being the weirdo I am, I insisted on a day of celebrations to acknowledge the occasion...
This time last year, I had no idea that over the next twelve months, the annoying flash in the upper left corner of my vision would result in significant vision loss, a diagnosis of an inflammatory/autoimmune disease, and a tonne of meds and significant vision regain. The 24th October last year was quite the day...
Not knowing the seriousness of my symptoms, and me being the idiot I am, as soon as I noticed the first flash, what did I do? I went to my eyebrow appointment 🙃😂 Clearly I have my priorities straight, and clearly they begin with a bottle of tint.
It ended up being a stressful day post eyebrow appointment, because a quick visit to Google (again, because I'm an idiot) convinced me I had a retinal detachment, and made me realise that I should probably get to the opticians ASAP. After a lengthy phone call describing my symptoms, my optician told me that I needed an emergency appointment (I think they also thought I was having a retinal detachment), but... they couldn't fit me in 😂
Instead, they attempted to send me to this other opticians in a town twenty minutes away... but just because I like to make life that little bit more difficult, I couldn't bloody find the opticians I'd been referred to 🙃. I even went into Boots and asked the cashiers if they knew where the opticians I was looking for was... but they had no idea either. So I walked into the only opticians I could find in this little town, asked them if they were the one I'd been sent to, and they said yes. Finally! Time to get this sorted.
But of course, that would be too easy. I then had to fill in *another* triage form (I think this was about the third one; each person that I spoke to over the phone from my usual optician team had asked me to do one then too), and by that point, I was starting to get a little annoyed. I was just telling different people the same problem over and over, and not getting anywhere other than an random opticians shop in a town I'd never been, and one which I wasn't even entirely convinced I was meant to be in. To really wind me up even more, the optician I was currently sat with, after filling in allllll the forms again, then said they couldn't fit me in today 🙃 Honestly, I was fuming. Why had I been sent to this one then?!
Well, as per usual, my sheer stupidity and poor orientation skills had literally lead me down the wrong road, because I hadn't been sent to that opticians at all 😂 I’d literally just walked into a random opticians and for some reason when I asked if that’s where I’d been referred to from Boots Opticians, they decided to say yes.
By this point it was about half past three, and no optician could fit me, so I was left with the casually offered advice of the random opticians I’d found: 'you can always try A&E'.
I wasn't about to head to the hospital though, because I wasn't fully convinced it was an emergency (and in hindsight, I’m also not sure my symptoms would of shown on scans at that point!). So I ended up driving back to the town where I live, walking into the opticians where I am actually registered and begging them to fit me in and examine my eye there and then.
Thankfully, they agreed, but not so thankfully it was that day that I had my first experience of dilating drops, and we all know how I feel about them. It was also the day I received the first misdiagnosis: floaters. Obviously, as we all know, it wasn't floaters at all (but ironically, I have since developed them), but it was actually the beginning of PIC. And the rest is history!
Picture description: The first ever experience of pupil dilation! The picture shows a close up of my blue eye with a large dilated pupil. My brows are freshly tinted in this pic 😬
So, as it all began to go downhill one year ago, (and then uphill, downhill, and uphill again), I thought I'd mark the occasion. It may sound strange to want to celebrate, but there have been some really dark times over the past twelve months when I didn't think I could get through, and I certainly didn't think I could or would have the vision I have today. I remember at Christmas time, I was *convinced* that it would be the last Christmas that I would be able to watch my niece and nephew open their presents, I was certain that my other eye would also become affected, and I was absolutely sure that losing my independence and drivers license was inevitable. I frequently imagined myself having to move out of my home and back in with my family. Daily I questioned how long I'd be able to work for. The sadness these fears brought was intense.
But, one year on, I can still see the big smiles on my niece and nephew's faces, my good eye is still hanging on in there (and my bad eye isn't really that bad anymore); I'm still driving, I'm still living solo, and I'm still working (and I’m still moaning about how tired I am from being on shift all day). Whether it will always be this way, I don't know. I hope so, but I guess we can't tell for definite what my immune system will do to my eyes in the long run. But we’re aiming for stability, hence why I willingly take so many tablets that I rattle when I walk, and I think my hospital is confident I’ll get there. Importantly, for now, things are okay.
So I guess I wanted to celebrate that one year on, I'm still here, I'm still fighting this thing, and that I hope to keep fighting it. And you can bet I didn't let Covid stop me from having my PIC-versary.
My little bubble (my older sister, niece, nephew) and I headed out for dinner (lunch) at a nearby pub. I even had a little tipple, because, I don't know if I mentioned... I was celebrating! Honestly though, if my liver function rats me out on my next blood test, I'll be fuming; I'm meant to be teetotal because my immunosuppressants put a lot of pressure on the liver. But, it was a celebration, and if you can't have a little pink fizz on the anniversary of your first experience of vision loss, when on earth can you?! 😂
Our pub lunch was a delicious cheesy heaven, because I am a woman obsessed when it comes to cheese. I had a Brie and onion chutney baguette, which came with chips that were proper chippy chips (the best kind of chips), and my sis and I shared a halloumi stack, because, again cheese 🤷♀️ To be honest, if there's halloumi on the menu and you don't order it, I will judge you...
We then braved the cold and threat of rain (because I'm mean and insisted), put our welly boots on and headed up to Mow Cop castle in Stoke-on-Trent. We'd never been before but I thought it looked lovely from what I'd seen on my Insta feed, and I knew it would be a hit with my seven year old nephew, who is army/king/prince/dungeon obsessed - I was not wrong.
It was only a very short walk (but made longer by our inability to find the closest car park), and the ruins were small, but it provided some amazing views of Cheshire and Staffordshire and two hours of entertainment as the kids ran about finding (and also revealing with their not-so-quiet voices) their 'secret hiding spots'.
Click the arrow to the right hand side of the picture to scroll through a few of the photos I took during our trip, or click each individual photo tile if on a mobile device...
(Picture descriptions are below and in order)
Picture description one: Mow Cop from a distance. It can be seen on top of a rocky hill with wooden fencing at the bottom and stone steps leading up towards the castle.
Two: A close up of Mow Cop. The 'dungeon'-like turret can be seen and there is metal railing to the right hand side.
Three: The views of Cheshire and Staffordshire as seen from the top of Mow Cop. To the left hand side there is some rockery and in the foreground there is some shrubbery.
Four: The kids and I with our back to the camera looking into the 'dungeon' area. Alfie is on my left hand side and Ida on my right. I have my hands placed on the children's back.
Five: The children and I with our backs to the camera as we look out at the views from the top of the castle. Ida and I are to the right hand side of the image, both sat down, whilst Alfie is to the left, standing and with his arms out wide.
It then started hammering down, so we headed home for a brew, Disney+ (can thoroughly recommend Spies in Disguise) and a Chinese takeaway, because yes, I am a pig.
I was shattered by the end of it but I really had the *best* day. It was a lot better than the 24th October last year, that's for sure, and at least I didn't spend the day this year driving round wondering which opticians I'm meant to be in, and whether the visual change I was experiencing is serious or not. I guess there were some similarities; my sister did spend some time driving round trying to find Mow Cop, but that’s apparently because my directions (aka me reading from the sat nav on my phone) are useless 😂 In fairness me directing is a lot of; ‘oh, you were meant to have turned left at the junction we just went past’, but, I'd rather be lost trying to find a castle than an opticians 🤷♀️
So that's the first PIC-versary done! I'm so very grateful to my sister for spending it with me and for all she's done over the past year, she’s been my absolute rock. I’m very grateful for all my family members and how they’ve helped me. I definitely wouldn't be where I am today without them.
And if anyone else is as odd as I am and celebrates the quirkiest of occasions, please let me know, and we can be weird together 😂
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