Living with Retinitis Pigmentosa and talking about it during the month of February – Which is Retinitis Pigmentosa month!!

February is Retinitis Pigmentosa month and I was diagnosed with Retinitis Pigmentosa 21 years ago. I had never heard of this eye condition before nor had I come across a Blind or partially sighted person, term, or knew really anything about sight loss.

 

I first noticed symptoms such as night blindness – I was having trouble seeing in dim lighting like restaurants, cinemas or in the dark for example walking in the streets during evenings and street lighting was just not enough. I was also bumping into a lot of people, lamp posts, trees and tripping over things. I simply couldn’t understand how or why this was happening and it soon started to stress me out.  At first I put it down to clumsiness, but overtime with more and more accidents I started fearing there was something wrong with me. My friends would laugh at me or sometimes with me as all I could do was to laugh but secretly worry inside. I soon started avoiding my friends and declining offers of social meet ups or after college gatherings and became really isolated as more and more bruises appeared on my body.

 

Almost a year later, I plucked up the courage to book an appointment with an Optician and I was soon referred to an Eye clinic at my local Hospital. After several months of testing, almost 9 months to be precise, I was given the shocking and devastating news that I have an eye condition called Retinitis Pigmentosa. The consultant explained I would lose my vision either in years, months or maybe even weeks. I cried in horror on what I had just discovered, I was totally numb and couldn’t even open my mouth to ask questions. I was informed that there was nothing they could do as there was no treatment or cure.

 

My whole world was turned upside down, I was about to go to university outside my home town, how was I going to cope, my driving lessons I was taking at the time – was there any point in continuing? I was completely shattered, I pondered through the next 18 months or so isolating myself, I lost my voice, confidence and the ability to look beyond my life as a Blind woman, I saw no future for me.

 

Fast forwarding a few years I started coming to terms and thought I will be okay if my vision stays the same as I can just go around claiming I was just naturally clumsy. Dating or even marriage was the last thing on my mind, and if I am completely honest, I never would have thought anyone would be interested in me, a girl in her early 20’s who is going blind. I was so wrong and fell in love with a lovely gentleman who supported me from the moment I informed him of my eye condition, I dated and then later married my soul mate.

 

However, it was until after the birth of my first daughter that I noticed my vision decreased, at first I thought it must be the exhaustion and stress of the labour and being a first time Mum, but weeks and then months passed and I didn’t see any improvements.  My next appointment at Moorfields confirmed that my field of vision had decreased which meant my tunnel of vision was in fact closing. I suffered in silence, not having anyone to talk to, to explain how depressed I was feeling, how scared I was at times, all whilst trying to be a mum for the first time, a good wife and a doting housewife. The only thing that kept me happy and looking forward to each new day was my beautiful daughter who was constantly bringing me joy apart from her not sleeping as much and only having quick naps.

 

Whilst I adjusted my way of doing things yet again, I came across new challenges such as not being able to see the toothpaste if it had dropped in the sink whilst trying to put it on my toothbrush, keeping the house completely spotless, sweeping the floor, making sure I had covered the whole floor space but then not being able to find where I had gathered everything up, missing a few toys when clearing up and then tripping over or stepping on them as they were out of my field of vision. Bumping into chairs when they were not tucked in after use and not being able to see glassware on work tops or tables as they would get camouflaged- one wrong move would mean 100 pieces of shattered glass everywhere – became a constant, unavoidable hazard. Another frustrating element of RP is dropping something on the floor and not being able to find it until you manage to get it into your field of vision, resulting in going onto my hands and knees, and sweeping across with my hands until I have found it, sometimes taking a very long time.

 

Four years later, after the birth of my second daughter, I lost further vision, my tunnel had closed yet again and I was developing cataract. I became more withdrawn as I wasn’t able to walk to the health clinics or local shops, as locating the entrances or differentiating between the shops would be difficult, sometimes I wouldn’t even be able to see my daughters, depending on my surroundings, so I gave them jingly rubber bands so I could always hear them. I had to be extra careful positioning things in my home, so I would always know where everything was. It would get pretty frustrating and stressful at times when certain things were not put back in its place and I would spend ages trying to find it or use the wrong ingredients as I could no longer read labels that had similar packaging.  The amount of times I have opened a tin of tomatoes when I wanted Baked Beans, but the heart breaking fact for me was that I could not see pictures and work the children had made at school or being able to identify my children in the playground and going through a daily struggle of finding the school gate or even my own house at times.

 

Most people love the sun, but for me It was my enemy especially when it is low down as I get totally blinded by it. I love it when it is dim and grey which I am then more prone to see the black dustbins and can avoid them, along with the lamp posts or bicycle racks and pedestrians.

 

The more of my peripheral vision I was losing, the more independence and confidence I lost. The more isolated and down I felt, the less people wanted to interact with me.

 

I came across RP Fighting Blindness, a charity that supports people with Retinitis Pigmentosa. I met others for the first time going through the same feelings, anxiety, fears, and questions as me. With tremendous support, guidance, a listening ear and practical advice, I finally saw a ray of hope.

 

I was introduced to new ways of dealing with some of the challenges of RP. The other members of the charity and I met up every so often for socials and we gave each other positive motivation and discussed ways of doing certain things that helped with daily tasks. I soon upskilled myself on voice over technology and converting colours on my computer to now using yellow text on a black background supposed to black text on a white background, re- organising things and informing my family on how important it is not to move things without telling me or even leaving chairs out, or cupboard doors open.

 

I spread awareness of the charity RP Fighting Blindness and the symptoms of Retinitis Pigmentosa, as it is such a complex condition. Many people who are facing this struggle to cope as loved ones understandably also find it difficult to cope and fully understand the changes to vision.

 

21 years later, my symptoms of RP consist of Light Perception in one eye, and 1% in the other eye, accompanied by Cataracts. I do not recognise faces even those of my children, husband or loved ones. If I was to meet you in the street, chances are, I may walk past you and ignore your nod, smile or wave as I simply wouldn’t see that, I will certainly make some sort of mess if I go out with you to eat, as I cannot see the food on my plate or the crockery around me, nor would I be able to see the step or stairs whilst looking straight ahead as it is below my field of vision. I could join a group of people but have no idea who is sitting around me and completely rely on voice recognition, or for other people to introduce themselves by name and not just say “Hi it’s me”.  If you are sitting in front of a window, with bright sun or light coming through, then all I will see is a black silhouette and no chance of identifying you.

 

I spend time learning routes, counting steps to the end of my road before I need to turn the corner, I will learn to stay on a particular side of the pavement because I have stumbled into that A-Board until the shop decides to move it and will bump into it again,  I will talk and spend time on social media and confide with my virtual friends as those around me have faded away as they don’t want to be embarrassed, or find out how I could be best supported to be included but instead find it easier to not get involved. However, I can’t see the photos you may post or tag me in, especially those with text embedded into them- so I will then go through the comments to see what the photo could possibly be, ask my daughter or husband to tell me, or simply scroll past as a last resort. You may also find me talking to a mannequin, a tree or a lamppost or tell a bush, “Watch where you are going”

 

I now use a white cane which helps with mobility, accessible technology to keep me connected and independent by keeping me up to date with what is going around me, both nationally and worldwide. I have countlessly gone through times of the grieving process as I morn for my sight loss and when I am in a decent place to accept my change in vision just a tiny bit, I have to find a way to move on and adjust my life and doing things differently yet again.

 

RP is such a complex eye condition and its symptoms and progression of deterioration varies from person to person, but those living with RP face the same loss, grief, battles, hurt, and challenges and just want others around us to understand how we feel, how we have to cope and how we have to adjust and be patient with us whilst we try and make sense of our sight which is being robbed from us. Our family and friends sometimes feel it is better to leave us alone, but in fact, it would be helpful to deal with all of this together.

 

Currently, there is no cure or treatment for Retinitis Pigmentosa, however more and more patients are getting involved in genetic testing to help identify which gene is causing their RP. A few genes have already been identified and many patients are eagerly waiting on gene or stem cell therapy. Everything comes at a cost and lack of funding means years can turn into decades before any real positive breakthrough can come about.

 

Everyone deals with their sight loss in their own way, and everyone accepts it in various degrees in their own time. Life with sight loss does not have to mean the end, but just means you can achieve your dreams or aspirations a little later in life, with adaptions, assistance or some sort of support but it doesn’t mean that it would be impossible.

To find out more about the condition or more about the charity please check out the website  – www.rpfightingblindness.org.uk

 

 

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