As you hopefully know by now I am running the London Marathon in 2018. I am lucky enough to be a part of Team RNIB, a charity close to my heart. Sara’s story below is the perfect example of courage, determination, fear and bravery. If Sara’s story isn’t the inspiration I need to get through the last 6 miles on the day then I don’t know what is!
Huge thanks to Sara for writing this great blog and sharing her story 😉
My name is Sara Crowley, I’ve recently turned 30 and I’m from the Cynon Valley in South Wales. I’m bilingual, a keen traveller and a big Cardiff City fan. In amongst all of this, I’ve also been living with Type 1 diabetes for the last 27 years. This blog is a short insight into my experience of dealing with diabetes, retinopathy and sight loss.
When Bri asked if I would write a guest blog about my involvement with the RNIB, it was too good an opportunity not to raise some awareness of the amazing work that they do as a charity helping people who are living with or adapting to life with sight loss.
From an early age since my diagnosis, I knew that losing my eyesight is just one of the complications I could be faced with at some point in the future. There’s two ways of taking this information – I could either spend my whole life worrying, almost waiting for what seems inevitable, or I could use this as a reason to want to experience as much of life as possible, while I can.
Luckily, I chose the latter – and I believe living with Type 1 diabetes has pushed me to places I never would’ve gone without it. I work hard so that I can play hard, and if I’m not spending my weekends at gigs, concerts or doing something random, I’m saving for my next holiday or travel adventure. There’s two reason for this – it gives me something to look forward to, and if, at some point my quality of life is severely reduced because of complications associated with diabetes, I’d like to think I’ve used my time wisely, appreciating that life is fragile and not a given, and that I’ve made the most of it.
I’ve had a bucket list written in a notebook for as long as I can remember and I’m constantly adding and ticking things off.
In summer 2014, I took a trip to Italy – a week in Sorrento with a trip along the Amalfi coast, a few days in Naples and a train ride to Rome. ‘Eat carbs in Italy and not feel guilty’ is now well and truly ticked off my list with pizza, pasta, gelato, tiramisu and a taste of limoncello all devoured in moderation over the ten days – diabetes didn’t behave too badly, and the holiday was mostly what I expected; truly beautiful.
With just two days left, I walked from our hotel to the breakfast room, as I did I blinked and saw what I can only describe as several thick lines of liquid eye liner smear itself across the centre of my right eye. No blinking would clear it, as I moved my eye; it followed, stuck in the centre of my vision.
I’d been having treatment for proliferative retinopathy for a couple of months on my left eye and I had previously had a couple of small bleeds, but until this point, my right eye was what I’d called ‘my good eye’. I tried to carry on as normal. We had such a beautiful holiday; I didn’t want this to ruin what was left of it. I didn’t want my partner to worry. But, there was just too much blood this time for me to be able to ‘keep calm and carry on’.
I was petrified. Suddenly I realised I was also very far away from home. Retinopathy and medical speak is difficult enough to understand in English, and my Italian was limited to ‘ciao’ and ‘grazie!’
I’m incredibly fortunate that one of my partner’s closest friends Becky, also happens to be my optician, and an amazing one at that – so we made contact with her and she told me to call eye casualty as soon as I landed in Bristol for them to be able to see me when I arrived home to Wales.
The end of the holiday and getting home was a blur, no pun intended, but I did still manage to see the Bay of Naples on my final day, albeit through tears, anxiety and a small bit of resentment that this had happened during our holiday.
My partner Leanne, is amazing, there aren’t enough words for me to explain how grateful I am for her support, not just at points of difficulty but each and every day. When I’m overwhelmed or I don’t feel strong enough, she becomes my strength.
This was the start of what I can only describe as eighteen months of absolute hell. Someone once quoted Winston Churchill to me and said ‘When you’re going through hell, keep going…’ something I’ve reminded myself so many times since.
The bleed that I’d experienced was what’s known as a vitreous haemorrhage. What this means is weak blood vessels that grow as a result of retinopathy break, causing blood to mix with my vitreous, the jelly part of the eye. I was unable to see through this. It was unable to clear on its own and needed numerous sessions of laser. My care eventually needed to be transferred to a bigger hospital for an operation and I was placed on a very long waiting list for what is called a vitrectomy to remove the vitreous. Not understanding any of this at the time made it even scarier, but I learned I had to put my trust in my surgeon completely. I learned it helped if I asked questions to help me understand rather than letting my thoughts, worries and anxieties run away with me and the ‘what ifs’ that may or not be ahead.
The one thing I’ve realised is diabetes is never straight forward, something that’s trained me well to deal with the highs and lows of general life. It’s complex and to make a bad situation worse I was also due to start a brand new job the week I returned home from Italy.
I know that if this whole experience had happened under my old employer I would’ve been supported no end. One of the reasons I stayed there so long on top of enjoying my job was how well supported I was whenever it came to time off for clinic appointments and/or my health. I hadn’t had a day off in well over two years, and my diabetes or anything to do with it was never made an issue. Unfortunately we had all been made redundant a month before, so timings were well and truly not on my side. Again, I quoted Churchill…
I’d need a whole blog post and more to write about how discrimination at work made me feel, but having never experienced any bullying or negativity towards my condition growing up, nothing could’ve prepared me at 26 years old for what was ahead, working for a charity where supporting people was the essence of their existence.
‘I don’t even know why you bother checking your bloods, I don’t even think you’re a diabetic, I think you do it for attention…’
‘You can’t be a good diabetic, you don’t eat…’
‘It’s not that we’re not supportive Sara, we’ve got people here working for us who have been diagnosed with cancer and we’ve supported them through their chemo, so we are supportive’
These are quotes from one of my supervisors with the cancer comment coming from the director of the company. These words have never left me and it’s fair to say their ignorance haunted me for a very long time.
For four months I juggled a new job, fortnightly or weekly laser while I waited for news of my operation and the uncertainty of going permanently blind. But if I wasn’t at the hospital for treatment, I was in work. I had the freedom to manage my diary so was able to juggle seeing all of my clients around the days I wasn’t at hospital for treatment, so the impact this had on the quality of my work was kept to a minimum. I don’t take to having time off lightly and having a reason to get up and out in the morning for me is a coping mechanism. I like to give my job 110%. This is because I’d hate for someone to think I can’t do a job as good as the next person because I live with diabetes.
I took some time off over Christmas because I found dealing with the comments and the ignorance at work harder to deal with than the actual issue of losing my sight and dealing with recurring bleeds. The minute I’d get home and close the door behind me, I would break down in tears.
In January of 2015 just before I was due back in work, I had a phone call from the director to say she had to ‘cut her losses’. I was sacked over the phone, with no warning, no reasonable adjustments attempted and no formal process of dismissal followed. We live in a country where we have equality and discrimination laws in place, but that doesn’t mean they ever fully reach the people they are supposed to protect or are put in place for. This was another harsh life lesson.
The following four months were even worse. Both my partner and I had to move home to my parents’ house. I couldn’t claim any financial benefit because I was deemed ‘fit to work’ yet had just been sacked on health grounds so I felt like my back was against the wall from every angle. Outside of my partner and family, there was very little support available or offered to me.
My mental health went into meltdown, being made to feel broken by someone else’s ignorance led to me being unable to leave my house most days through anxieties. If I wasn’t facing anxiety there were days where I couldn’t leave my bed through depression. I was offered anti-depressants but I didn’t feel this was an appropriate route for me, I refused them. This shouldn’t be the only option available for the GP to offer. I broke down in diabetes clinic asking for help as I’d never felt this way about my condition before and I was losing myself. I was referred to a psychiatrist which has a stigma in itself. To this day I never had that appointment through. Waiting for treatment, hospital cancellation letters of appointments also would send my anxiety crazy – each and every day I waited for treatment meant keeping my eyesight long-term hung in the balance.
After a few months of feeling like I had completely lost myself, I decided that I had to do something, I had push myself, push boundaries and push my comfort zone. I was determined this situation had to make me better, and not bitter.
My Mum came home from work to say that one of her colleagues had read on an e-newsletter about an eye clinic liaison officer that worked at the hospital. I sent her an email explaining my situation and I pushed myself to meet with her the next day. She was absolutely lovely. She told me that she could refer me to the RNIB – she went through a range of services they offered and some further details of the services that could benefit me. She referred me to the employment support officer and emotional support telephone service.
I met with the employment support officer at the RNIB Cymru offices in Cardiff. When I visited RNIB Cymru in Cardiff, I was both amazed and inspired. I sat in reception for a short while and with the sight I had, watched people come and go, some with visual impairments, some without and some who may have, but I couldn’t tell – because it’s important to stress, like diabetes, that not every condition or disability can be seen.
The emotional support service provides a one hour telephone call at the same time slot every week for eight weeks, with a trained counsellor. It was through this service, talking things through I slowly regained confidence in myself that I got to the position where I felt able to apply for jobs again. I didn’t get them, but each application was one closer to the one I would get. This was a huge step as this whole experience had led me to believe I was no longer employable and would never be employed again.
At the same time, part of me felt like a fraud – I wasn’t registered blind or visually impaired, though that may well be the case one day. Should I really be able to receive support from a charity set up to help blind people? I was incredibly grateful and thanked the lady for meeting with me and then explained how I felt. She quickly put my mind at ease and explained that the RNIB help people affected by vision loss – and this was and had been my reality for over a year now, if not longer psychologically, so she told me not to worry and that I definitely wasn’t a fraud!
This taught me vision isn’t black and white or simply seeing and not seeing. It taught me there is a whole range of conditions that people are living with and adapting too, and just like I value peer support within the diabetes community, there are other communities helping people deal with their life hurdles day-to-day, every day.
‘Well, the best thing is, you’re aware of us now’.
She taught me that their services are there for people to dip in and out of as they feel they need and that the best case scenario would be that I regained my sight after my operations and will be aware of RNIB if I ever need them again in future. They were warm, welcoming and exactly what I needed at that time – my only regret is that I didn’t realise they were there for me to contact sooner on my journey with sight loss.
The RNIB is a charity that heavily relies on donations and it’s because of this I’m incredibly proud of people, like Brian who choose to do incredible things for charities close to their hearts.
In April, Brian is taking on the London Marathon, after what will be his first year of running. Have a look at his journey so far ➡ Here
Whether you’re part of the diabetes community that is experiencing or worrying about retinopathy, or somebody facing any other form of sight loss or just able to read this blog without any difficulty, both myself and Brian and the RNIB would be extremely grateful if you could donate to help him raise vital funds for their incredible support services to continue doing the amazing work that they do.
When I was going through hell, I’m glad I kept going – I have had three operations on my right eye and have regained my sight for the time being. I am employed and I love my job, but if somebody would have told me on that holiday in Italy I would go through all of that, and then hold down a National role in the NHS to help influence and develop better diabetes services for young adults living with diabetes and drive myself the length of my country for meetings I would never have believed them.
I am working hard at maintaining my diabetes management to the best of my ability and I was told last week that my retinopathy is currently inactive, so the hard work is paying off. My twitter handle is @type1hurdles as this is how I like to view my diabetes, a hurdle and not a barrier. A continuous series of hurdles, be this a blood glucose number that’s out of range or losing the sight in my right eye for eighteen months, I don’t believe there’s anything I can’t overcome with the right support.
This post is dedicated to Dawn, who listened to me wholeheartedly for those eight weeks and for helping me see clearly at a time where I lost sight of myself
– I am not and never was, broken.
Written by Sara Crowley, November 2017.
I think you can now understand a whole lot more why this cause is close to my heart and why raising these funds is an honour.
I am lucky to call Sara a friend and an inspiration to many, thank you once again for a great piece of work.
Take care, support is there