These stats above mean that my eye condition is rare, which is why I take up so much of my time talking about it. If you think I mention Stargardts too much, then great, my mission is working and people are listening. If nobody spoke about rare conditions, how would anyone ever find out about them? Just because Stargardts only affects a small amount of the population, it doesn’t mean it should be hidden away and people should just live with it without sharing the impact it has on our lives.
I often wonder if this is why some people around me just aren’t interested in what I have to say because it doesn’t affect them, or they feel it will never affect them. Stargardts probably never will, but I would like to point out that currently over 1.5 million people have AMD in the UK which is age related central vision loss. This is not rare and as we are living longer, our eyes are becoming more affected by these conditions. I never ever thought I would ever get diagnosed with progressive sight loss, but here we are, and I will continue to talk and raise awareness about Stargardts for as long as I possibly can. People need to know the impact that sight loss has on people so that more research and future treatments can be put in place. Rare shouldn’t mean we are ignored, but if we are, we just need to shout a little bit louder ♥️.
This is a difficult post to write, but one I feel needs addressing. I often don’t feel like I fit in to the community that I’m meant to be a part of. I don’t use a cane or have a guide dog and it has also been suggested that I’m lucky I’m only losing my central vision. I also feel I’m often invalidated because I got my sight loss later in life and that I have been able to do certain things that others were not. Ableism is always spoken about from people who aren’t in the disabled community, but internalised ableism can happen within the community too and I often find this harder to swallow.
Me holding a board saying Internalised Ableism Exists.
It doesn’t matter that my journey through sight loss has been different to someone else’s, or that I have been able to do things someone else hasn’t, like drive a car. This doesn’t take away my experience and what I am going through and it also shouldn’t make others feel like I can’t tell my story. Sight loss is not a competition and it saddens me that acceptance is sometimes based on the sight you have and not the journey you are going on. I just want people to know that it doesn’t matter when your sight loss journey started, how quickly your sight loss progressed, what visual or mobility aids you use or what you can see, your journey is your journey and it is as valid and real as anyone else’s ♥️. Thank you to everyone who supports my journey, I would be lost without you xx
Today is world sight day and ironically mental health awareness day too. As most of you know, I was diagnosed with Stargardts 2 years ago. Unfortunately, there is nothing that can be done for my eye disease, no treatment and as of yet, no cure. I have in those 2 years, lost 2 lines of the eye chart in both eyes and am only just hanging on to my driving licence. Stargardts is robbing me slowly of not only my eyesight, but of my independence.
World Sight Day Image 2019
This has obviously had a massive impact on my mental health. I take steps every day to try and keep my anxiety at bay. A long daily walk, taking time out to breathe, eating properly and getting as much sleep as I can (which isn’t easy with a baby) if I don’t do these, then my vision will wander into my main focus. Blogging has been very freeing for me; it allows me to write down my thoughts and feelings and know that I am not alone in this disease.
World Mental Health Day Image 2019
My Stargardts is
rare and incurable, but so many eye conditions aren’t, and the majority are
fixable and treatable. People often ask me why I bother to tell people to get
their eyes checked, when one eye test changed my whole life, but that is
because I was unlucky, but so many people aren’t and the sooner a condition is
detected, the sooner it can be treated and vision loss could be prevented. If
someone doesn’t have to walk the path I am having to, then I will continue to
urge anyone reading this to go and get their eyes checked to protect their
eyesight, including your children too. I would do absolutely anything if I
could to protect mine, but I can’t, so for now I will just continue wearing the
biggest oversized sunglasses I can find, to protect my already failing eyes as
much as I can and ask you all to get your eyes checked. Your eyesight really
does matter ♥️.
Ironically
to end eye health week, it is my 2-year anniversary of my official Stargardts
diagnosis. 2 years ago, to the day I walked out of Moorfields Eye Hospital and
my whole life had changed forever. Being told you are losing your eyesight at
32 is just something that unless you have been through it, you cannot comprehend.
Some people may not understand me when I say this, but I felt in a way that I
had been given a terminal diagnosis that day. Some people will read this and
feel I am over reacting and I have no right to say this, but I’m afraid unless
you have been told you are going blind, you will never understand how those
words make you feel inside and the impact they have on your mental wellbeing.
The fact that there is no cure for my condition, and I have to watch my eyesight
fade in front of me, leaves one feeling completely helpless and in
despair.
Number Two Image
Have things got easier for me in those two years?
As much as I would like to say yes, the answer is no. I am learning to adapt to
my changes and new blind spots, but because this disease is progressive and
mine is currently progressing, time is not really the healer. As time goes on,
my vision loss just gets worse. I don’t feel the despair I felt when I was
first diagnosed and the feeling of sheer terror has thankfully passed, but I do
still often feel scared. I often worry that I won’t be able to cope as my
vision gets worse, but I know in my heart that I will have to. Lots of other
people do with this and I have no other choice.
A Year Changes You A Lot Image
After my diagnosis, so many people stopped asking
me how I was. I notice that people who are physically ill are asked how they are,
or people ask of them to see how they are and if they are getting better, but
it’s a rarity for me to ever be asked ‘how are you?’ ‘Are you ok?’ I feel this
may be because people are scared of the answer when it’s something that can’t
be fixed, or they truly don’t realise the impact this has on someone. I have
found the best people to talk to really are people going through the same
thing, this has helped me no end. I am lucky that I have a lot of support from
others I have met through Stargardts and am lucky to have the support of a
few close family members and friends.
In the two years that have passed, I am proud of
the way I have handled this. They aren’t words I ever thought I would say
coming from someone who usually puts their self-down and picks out all the
negatives, but I am proud. I look back and the way this disease made me feel, I
could have fallen into a pit of despair and some days I still feel like that
when it has frustrated me so much, but I won’t let it beat me, my life is worth
more than Stargardts. Stargardts can make life harder for me but it can’t take
my life away from me and that’s what I need to remember. I am still me, I’m
still Katie, Stargardts won’t change that ♥️.
If
I was stood in a room with 50 other people, would you know that I am the one
going blind? Would you know just by looking at me how much I struggle to see my
children’s faces or how I can no longer read easily from a book or that
watching TV is becoming really difficult? Would you know just from looking at
me that I have flashing lights in my central vision all the time and doing my
make up every day is really hard work for me? The answer is no, you
wouldn’t think any of this just by looking at me.
Not
everyone losing vision has a cane or a guide dog, I don’t, and I may never need
one, but I will probably still be classed as legally blind in the not so
distant future. I can still use a phone because technology has come a long way
and is very accessible for the visually impaired. Just because I use a phone,
it doesn’t mean that I still don’t struggle to see what is on it.
Be Kind Words Written In Italics
The point of this post is that by looking at me, you can’t tell the struggles that I go through daily and the heartache I have from knowing that one day I will have a large portion of my vision missing and there is nothing I can do about it. This post is just a simple reminder to all, to be a little bit kinder and a little less judgemental, as we can’t ever tell what someone is truly hiding just by going by what we think we know from looking on the surface ❤️.
So tomorrow I will be 36 weeks pregnant. This pregnancy has really
flown by and it’s scary to think I had Harvey at 38 weeks so may only have a
couple of weeks left, eek! I have come out in a horrible cold the last couple
of days and I’m struggling to sleep at night as much as I was because I can’t
get comfy at this stage anymore. I have noticed a big change in my eyes the
last couple of weeks which in the mornings, sometimes make me panic first
thing. I can only describe my blind spots as like looking through honeycomb
when I wake up and it lasts a good half an hour until my eyes have settled.
This has also started to happen when I get tired later on in the afternoon too,
but then doesn’t seem to last as long as in the morning.
Honey Comb Picture
My eyes also, in the last few days, seem to have excessive
flashing especially in my right eye which just doesn’t settle at all and is
really frustrating, I just hope if it is permanent, I adapt and get used to it.
All in all, I can’t moan about this pregnancy as it has been relatively easy
once the severe morning sickness eased at 15 weeks (and I haven’t even had
heart burn this time!), but I am saddened at the deterioration of my eyes. I
just hope they settle somewhat after I have had my baby boy, but if they don’t,
I know he will have been worth it all.
I totally understand there are other mums who are dealing with a
lot worse than I am and I am lucky that my Stargardts disease doesn’t cause any
physical difficulties for me, but every week when I go to my pregnancy relaxation
class, I have to admit I feel envious. I would love to be like the other mums
who can just enjoy their baby fully and take in everything about them. I can’t
deny I am sad that little bits of my baby boys face will be missing as I look
at him and I will struggle to do up his little poppers on his baby grow or that
by the time he is at school I really won’t have any clue which is my child. I
always try not to think too far ahead as none of us know what is around the
corner and it is best to just live for the now, but it does make my heart heavy
when I think too much about my vision and what I will lose. All I know is that
vision loss doesn’t stop you from being a good mum, it just changes the way you
have to do things and hopefully, like Harvey has done, this little one will
adapt with me on my vision loss journey 💙.
A week today and I will be at Moorfields and will find out how much my vision has changed in the last 18 months. The last 18 months have flown by and I really can’t believe how quickly it feels that this appointment has come around.
Moorfields Sign
My anxiety is still high about this appointment, nobody wants to hear they have lost vision, or their vision is progressing, it’s devastating and I’m just worrying if this is the case, then I will spend my time worrying about what I can and can’t see even more after my appointment. I still often feel like I am living a nightmare, but I’m aware this is an extreme way of thinking about my situation and that actually whatever happens, I will adapt, and I will be ok. This week has also been very stressful in my personal life, things have happened yet again, that are out of my control that have really added to the worry and stress of my upcoming appointment. I have also had some comments about my vision that have really aggravated me. I really wish people would think before their mouth runs away with them. I would say this is just ignorance, but some of the comments I have received can only be classed as stupidity!
My Eye Photo
Today I have also reached 28 weeks pregnant ♥️
through all of the heartache Stargardts has given me, I need to remember to stay
relaxed as I am growing a little life that is one of the main things (other
than my other gorgeous 7-year-old boy) filling me with joy and excitement at
the moment. I think I have maybe forgotten how difficult the new born stage can
be lol, but at least he will be a much-needed distraction. If he is the same as
Harvey, I will only have 10 weeks left of my pregnancy, but I have a feeling
this one will stay put for a bit longer, although I don’t know how I can get
any bigger so we will see!!
Close Up – Make Up Done
I try and stay as positive as I can whilst living with
this disease, but sometimes it is only normal and important to take onboard the
sadness you maybe be feeling inside so that you can address it instead of
letting it eat you up. I truly do try and accept that unless people are going
through this themselves, it’s ok not to fully understand, but people need to
remember to be kind and think about how they would feel in another person’s
situation and more courteous on how they address your vision loss. Just because
I blog about Stargardts, it doesn’t mean people can just bombard me out of the
blue with personal questions whilst I am going about my daily life. I have
struggled to blog on the run up to my appointment as I haven’t wanted to think
about my eyes more than I have been, so I hope once next Friday is out of the
way, I will be back on track and writing again. I appreciate everyone who
continues to follow me and support me, and I will let you all know how Friday
goes 💙 fingers crossed for the best outcome of no
progression 🤞🏼!! Have a lovely weekend everyone xx
