I have tried a couple of times to sit down and write my end of the month reviews, but each time I’ve hit a wall. Quite simply, I haven’t been thinking much about the goals I set myself at the beginning of the year – I haven’t had time. For the past year now, I’ve been going back and forth with my doctor about some long-term chronic fatigue and pain I’ve been experiencing, and in the past few months, I’ve finally been getting seen, while the symptoms have still been worsening.
So, if you’d like to get some similar insights or make similar savings, but don’t know where to start, keep on reading.
The past year hasn’t been the easiest for my family. In the winter of 2016, I was on the phone with my parents, when they first mentioned something might be wrong with my sister Jessie’s eyesight. My phone signal was bad, and I was on a break at work, so I didn’t really get the full message. I guessed she probably just needed glasses – most of us in my family do.
It was only a few weeks later when I found out she had a referral to Moorfields Eye Hospital, that I really realised the severity of what was happening. By that time, her identical twin had also been to the optician’s and they had found similar symptoms with her – an unusual area on the back of her eye. It was the first of many appointments at Moorfields, one of the leading providers of eye health services in the UK. Each time, there was a little bit of hope that maybe it might not be that bad after all.
I remember the day of their final appointment pretty well. This was the one where we would be getting a definitive diagnosis, as well as an idea of how severe it would be. I was meant to be in lectures for my Master’s, but I didn’t feel I could sit through it without panicking. As a distraction, I ended up heading to the cinema to watch ‘Beauty and the Beast’ – but when I left and headed to meet up with them post-appointment, the dread had set in again.
When I got to their hotel, they gave me the news. They were both given a diagnosis of Stargardt’s Disease – something that we had suspected for some time.
What is Stargardt’s Disease?
Stargardt’s Disease is a recessive, genetic disorder, that causes fat to collect on the back of your eye – specifically, the central part of your retina, called the macula. It’s the most common form of inherited, juvenile macular degeneration, and symptoms commonly appear in childhood or during your teenage years but can go unnoticed until later in life. In the beginning, central vision becomes blurry and loses colour, before losing sight in that area completely. It is rare for those with Stargardt’s to become completely blind, but many are left with only peripheral vision. It typically starts slowly, before becoming more rapid and then tapering off in later years.
The news broke our hearts, but obviously, the primary impact was felt by Amy and Jessica. They are both currently in their final year of university, and both previously took time out of their degrees because of poor mental health. The news came just as Amy was returning to her second year at Cambridge University to study Veterinary Science. Jessie was starting her year out from the University of Exeter, where she is studying Animal Behaviour. Both of their plans have had to drastically change following the news – Amy will not be able to practice as a vet (unlike doctors, vets must be able to conduct surgery, which you cannot do if you are visually impaired.) Jessie has always wanted to work with big cats but now has to decide what she can do with impaired vision. She recently had the opportunity to go to Africa with her university, which we made sure she could undertake – because we didn’t know if she’d be able to see them again.
Doing things because we don’t know if Amy and Jessie will be able to see them again is a common thing at the moment. And not something we ever thought we would have to consider in our family. At the end of the day, we are glad that we are in a position as a family that we can make these things happen – we know some other people aren’t fortunate enough to have these opportunities. We’re a strong family unit, that can support them, and each other, through the uncertainty ahead.
We will be taking part, as a family, in ‘Eye to Eye’, a sponsored walk raising money for the Moorfields Eye Charity. They support many individuals and families going through a similar experience, as well as funding new research that aims to make blindness a thing of the past. We are proud that as a family we can participate in an event like this to not only raise money for a worthy cause but raise awareness of sight problems like Stargardt’s.
I understand that money is tight right now – no one has as much of it as they would like! But even a couple of pounds thrown in our direction can make a difference towards our goal of £600. So please, if you can, make a donation. We would really appreciate it – and it would make walking for nearly four hours (with my family) seem worth it!
You can make a donation by clicking here.
Can you believe January is over already? The only silver lining is that it’s nearly February – which means my birthday, and I’m off to see to see Hamilton on the West End! But before that, let’s have a look at how I’ve been getting on with my goals so far!
Where has 2017 gone? I can’t believe it’s December already! As everyone gears up for the holidays, I’m looking back on my 2017 goals. So, let’s dive in!
1. Finish my Master’s Degree
This one was always a dead cert unless something went drastically wrong. There were a few weeks in August when I began to think about deferring my final essay until 2019 (this has been the year of continuous fatigue) but I manage to stick with it and get everything in. This was despite that fact that by that time I was basically working full-time! (More on that later). I knew that I probably hadn’t done enough at that point to get a distinction, but was happy with what I had achieved. I finally got my results back a couple of weeks ago, and not only passed by got a mark high enough for a merit – except my university doesn’t do them! Boo! Regardless, I am proud to have gone from a lower-second Bachelor’s degree to a Master’s degree, whilst also working crazy hours. I will be officially graduating on the 11th, and have basically been told I have to go because my family wants to come! I don’t particularly feel the need to spend a whole afternoon socialising and waiting for my name to be called, but there we are!
2. Fit in More Crafting
This goal has been a little bit up and down! I have added ten minutes knitting to my daily to-do list (although don’t really time it, I just finish one row of whatever I’m working on!). This has definitely helped, as it’s one of the easiest things I set myself to do. But, I’m still not managing to do it every single day, and non-knitting crafts have really fallen by the wayside. I’d love to be able to do some more papercraft and cross stitch, so think when my current knitting project is done I’ll have to mix it up again!
3. Develop My Career
This one has been a little bit of a rollercoaster this year! Way back in January, I was working as a stage manager for a brilliant new show. This was a fantastic opportunity to return to my first love, theatre. Shortly afterwards, I stage managed another show, this time a devised ‘dramatised tour’. Both experiences were great, I loved them – but they were so stressful. My anxiety and depression were all over the place, making it difficult to get anything done that wasn’t work. Not what you need when you’re also trying to finish a Master’s! I began to see that even though I loved the career, it wasn’t working for me. On top of my mental health, I’ve had more physical health problems during the year that, as of yet, the doctors have refused to diagnose. A job that requires lots of running around and late nights just isn’t healthy for me. I think I knew this four years ago when I first left, but because I had never loved anything the same way, I didn’t know where to turn.
I got lucky though. On a whim, back in February, I applied to do a marketing administration work placement for an arts organisation. I figured it would be good experience whatever I ended up doing. Well, soon after that placement started, their Student Recruiter left, and I was offered the position until that contract ended. Then, their Marketing Assistant left, and I was asked if I wanted to take on that role for an additional two days a week. Meanwhile, my previous experience working with adults with learning disabilities and driving minibuses meant I was asked if I would like to work with our after school disability programme, with the occasional Saturdays. ‘Why not?’ I said, suddenly working five and sometimes six days a week. By this point, I’d fallen in love with the organisation, and had found a new passion in marketing – something I never thought I would enjoy! But all of this was only until the end of 2017, when they were recruiting a full-time Marketing and Communications Officer.
Of course, I applied for the full-time role, really not expecting to get it but not wanting to let go of the job I’d fallen in love with. Much to my surprise, I found out last week that my application was successful! Plus, my manager wants me to continue my work with the disabilities programme, allowing me to be flexible with my hours to make that happen. I really couldn’t be happier, and am still riding on the high from the news!
Safe to say, I have achieved this goal for 2017!
4. Make Some Friends
This was always going to be a hard one. I did start off the year really trying, but as socialising isn’t always something I enjoy, it’s pretty easy to talk myself out of it. Now I’m starting to get a more regular timetable, I will continue to try to do this. I have been talking to people at work, and going out on our work socials. I just always struggle to trust people! But all I can do is keep working on it. I have been trying to at least maintain current friendships, which I guess is something?
This will have to be a goal that comes with me into 2018!
- I passed my Master’s degree, and didn’t just scrape through like I expected!
- I applied for and gained a full-time job at an organisation that I love.
- I’ve nearly finished another large craft project – this time, crochet, which I’m really not good at but determined to try!
Tune back in at the end of the year, when I’ll be outlining my goals for 2018 – and let me know if you have any suggestions or goals of your own!