RP reflections: A little sight loss update

In the moments I’ve spent away from my university work, I’ve been exploring new content ideas and a thought I’ve been mulling over for quite some time reappeared at the forefront of my mind.

And it’s the purpose of today’s blogging return. 

When I was growing up, I kept a little diary where I noted many aspects of what was happening in my life, from the dramas of school to the glorious stretched summer days spent with my friends. I suddenly remembered a few days ago that amongst those ramblings and memories were a few notes I had scribbled about my vision impairment and some of the daily challenges that were included in the deal of living with Retinitis Pigmentosa (RP). 

These little anecdotes about sight loss weren’t as common an occurrence as say, ‘I went to school today’, but they held so much more significance.

 I remember how cathartic it was to keep a little log of how I was feeling with regards to RP, and it felt as though some of the toxicity that was building up in my mind dulled as I wrote the words down. 

So, as I experience a little wave of nostalgia, I thought I’d bring something of a similar nature to the blog. Something I’ve decided to title ‘RP reflections’. 

RP REFLECTIONS: A LITTLE SIGHT LOSS UPDATE

It seems as though I’ve been sheltering myself from the vulnerability of sharing my story online for the past few weeks, sometimes I feel like I’m sharing too much and that thought often denies me the opportunity to start writing a new blog post. But there are days, like today, when I want to get a few things off my chest so here we are.

It’s Retinitis Pigmentosa awareness month as I write this and, ironically, I didn’t realise until a few days ago – I’m a top advocate for the condition, clearly. But the fact that the month is drawing to a close doesn’t mean that the conversation about RP has to stop. I therefore think it’s fitting that I’m introducing RP Reflections to the blog. 

Like I said, I used to note some thoughts I had about sight loss in my diary when I was younger. I wrote about how I saw the world and how that was changing over time, sometimes even from day to day. I’d like to introduce a thread of similarity to the blog because I know that I would have found comfort in hearing other people’s experiences when I was growing up just so I didn’t feel so alone in what I was experiencing. Hopefully my posts can act as some kind of reassurance to others who might be in a similar situation. 

It’s not often that I sit down to comb and untangle the finer details of living with Retinitis Pigmentosa. Sure, my blog is laden with sight loss related content but the posts are often much broader in their existence with a particular topic such as anxiety or confidence as a focal point. It’s not often that I acknowledge how I actually see the world and that thought is what has sparked the concept of RP reflections. I’d like to take posts in this series as an opportunity to dig a little deeper and explore aspects of RP that often go unheard of on here. Because the smaller details count for something as well and, actually, they might not be so fine in their impact. 

This might not sound like anything that’s out of the ordinary in terms of the posts I publish on here, but I think it will help me to capture some deeper thoughts I have towards RP and growing up with the sight stealing disease in a much more nuanced way. 

When glancing back at the past few weeks, I can’t say that there have been any major changes in how I see the world, my eyesight has been frittering away but it hasn’t been any more noteworthy than usual. However, if you read my recent letter to Retinitis Pigmentosa (thank you so much for all the heartfelt response to the piece by the way, your comments are always a great source of reassurance), then you’ll know that I mentioned my eyes had become much more sensitive to light which was causing constant pain and headaches. 

RP can often colour my life with these additional symptoms and strains and when the pain gets too much to bare, it has an impact on my productivity and, if you know me, you’ll know that taking a step away from work is something I can be very reluctant to do and it’s something I feel quite guilty for. 

But sometimes it can’t be helped. 

Veering back to talking about what I see; Something I don’t think I’ve ever mentioned on here before are the flashing lights I see. They’ve been a prominent part of my life for years now and yet they’re something I rarely communicate. 

When writing my diary all those years ago, I’d note (in Welsh) things like, ‘The flashing lights were unbearable today, they were like sparklers being twirled around and around in the corners of my eyes with colourful fireworks being set off in the centre.’

And that description is still valid. 

As I write this, I can see those sparklers flickering away in the corners of my eyes. They’re very light in colour, sometimes growing in their brightness and intensity. They can be paired with headaches when they increase in their ferocity but as they’ve been a constant fixture for such a long time now, it’s almost as if I’ve learned to look past them (no pun intended), I have to let them dance away as there’s nothing that can be done to dim their sparkle. 

To compliment those lights, my eyes have been rather painful lately as a result to how sensitive they’ve been. My right eye has always been my worst and it’s where most of the pain has been mounting up for the past few weeks. (I’m so sorry if this sounds like I’m listing all my symptoms to an ophthalmologist but hopefully some will benefit from learning a little more about the ins and outs of the impacts RP can have on me personally).

I feel like I sometimes burden my thoughts as I let myself think that the smaller details of living life with RP are insignificant so I don’t tend to speak or write them anywhere. But I’ve learned that keeping these affects and changes to myself can be just as consuming no matter how minute I brand them to begin with. Thoughts don’t discriminate and they will swell in their existence and in force if they aren’t aired and talked about, hence why I want to capture some of the finer details on here.

RP isn’t rigid in its existence so I feel like there will always be changes ahead. I’ve seen the same pattern repeated throughout my life, good moments bleeding into something a little more difficult as my vision deteriorates, and those difficult times slowly transforming into good ones again. 

Right now? I think I’m somewhere in the middle, possibly suspended in some kind of limbo where I can’t predict the next step but I’m ok here. I’m coping here and I have my own firework display to keep me entertained. 

So that’s where we are at the moment. The last few weeks have felt a little topsy-turvy, for lack of a better word, but in the face of new challenges, it’s so cathartic and refreshing to be able to quietly reflect and hopefully open a new conversation. 

I find that I’ve been limiting myself in my expression of sight loss recently, I haven’t been writing as much about RP in its entirety and I’ve reached a point where I’d like that to change. I’m hoping that this new little series will help me with that and that it will afford me the opportunity to give my experience of living with RP the platform it deserves again. 

 I’m thinking that maybe, eventually, I’d like to introduce other people’s stories to this conversation too. RP is intensely personal and unique in the way it affects people’s lives and I think that should be recognised more widely. There are a whole host of different experiences and that spectrum deserves to be given a platform. 

I’m not claiming it as a definite step yet, it’s just an idea I’m toying with but I like the anticipation that ties with new thoughts and new possibilities. 

Laying the groundwork to this new little series charges my thoughts with a new sense of anticipation and inspiration, and I’m hoping I can approach it in a different way to other content. If I can use it as a regular segment to answer your questions about RP, share some of the finer details of how the condition is affecting me in terms of how I see and the mental health impacts of that or if I decide to take the plunge and chat to others with the condition who are happy to share their experiences, I’m hoping it will act as some kind of reassurance or a source of information about living day to day life with this condition. Whatever I choose to write, I’m excited to see where it leads. 

I’ve already managed to decompress some thoughts but I know there’s much more to work on in the future. I’m hoping this will provide the opportunity to foster new conversations and new communication habits that can be utilised in a positive way. 

All of this is a process, grieving for the eyesight I’m losing is a process, but by writing about it in posts like this one, it helps me to work through my feelings in the best way I know how to. And I’m hoping this series will be something I can shape into something with purpose. If there’s anything you’d like me to talk about in relation to RP or if you’ve got a burning question you’d like to ask, send it my way and I’ll reserve your suggestions for a future post. 

In the meantime, I’d love to know if you document your sight loss journey in any way or if there’s a certain process you adhere to in order to relieve some of your innermost thoughts. I feel like we all have our techniques and preferences so I’d love to hear what helps you the most. 

Until next time. 

Elin x