And now I have my symbol cane..

DE54A618-6A93-49E7-9BF5-860B6A2330DCD70FDE2A-4FB5-4DB4-99EC-13FE1E7961AAYesterday I had a visit from my local sensory services team. I had rung them a couple of weeks ago, explaining how I thought I might need a cane now….

For the last couple of months, I had been tutting and huffing under my breath, because people at London Euston train station, were getting in my way! It was only after a couple of near mishaps with peoples telescopic suitcases, that it dawned on me that it was actually me getting in theirs! Oops!

So, the team came out, and I now have a symbol cane that I have named “Seymour” inspired by a lady from an RP group that I belong to. I have put some little glow in the dark stickers on, just because really.

They were brilliant and made me feel so much better about a lot of things.

I had originally had a visit last October, shortly after I was registered as sight impaired. I was asked about a cane then, but I politely declined. I said I was ok, but looking back I wasn’t really. I was more worried about the stigma attached to having one and using it in public. And that overtook my feelings of desperately needing some form of help that was less conspicuous!

So I bumbled along.. literally! Bumping into people who I felt had cut across me. Busy London train stations are like that I told myself. Everyone wanting to be there yesterday… my peripheral vision had got worse, but I didn’t take that on board straight away. Or didn’t want to maybe…

My Dad felt I would be vulnerable walking around with a white stick, especially at night. I could see his point, but little by little I was struggling to get from the platform to the exit.

And then the desire for help and support far outweighed public opinion. Plus there was no more room on my shins for bruises! So I rang them, and I’m very glad I did.

They put my mind at rest and made sure I was happy when they left. I am on the waiting list for mobility training and will then get a longer cane with a roller ball on the end. I was measured up for that too.

So on Monday, Seymour and I will have our first little trip out together. I’ll let you know how we get on!

There are two pictures at the beginning of my blog of Seymour, my symbol cane. The first picture is a close up of one of the glow in the dark stickers, it is a butterfly. The second one is of the top of the cane leaning against a white/cream coloured wall. The stickers are of a small smiling heart, and the other is of a little star wearing dark glasses.

#RetinitisPigmentosa #HaveCaneWillTravel #I’veGotThis

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Not all heroes wear capes. Some have beards, and write the most incredible heartfelt poetry…

I’m going back to the day I read Dave Steele’s poem “It’s ok” Everything I had been thinking and feeling was written right in front of me… so without further ado, here it is

It’s ok

It’s ok to be scared, it’s ok to be afraid. For all the sight we’re yet to lose as our loved ones faces fade.

But don’t let that fear consume you. Or push the ones you love away. In spite of all that’s gone, to them hold on. Through the fog they’ll lead the way.

But if friends and family leave you, because they don’t understand. Just remember you are not alone, this life never goes as planned.

Though we may be total strangers, and reside on different shores. Through these poems know your story. For my tunnels the same as yours.

It’s ok to be scared, it’s ok to be afraid. Though you may not see, you’ve a friend in me. That’ll never be betrayed.

Copyright Dave Steele

Isn’t it amazing how someone’s words can just touch your heart on such a deep and profound level.

Since then, Dave has gone onto  speak at many events for the blind and visually impaired. He is on Facebook, Twitter and Instagram. He has a Facebook group called Stand by Me RP awareness. Please look it up if you are on Facebook.

He is known as the blind poet. I have tried to tag him, but as I said before I’m learning!

He helps so many far and wide, cope with sight loss. By sharing his story he inspires others to do the same. He certainly inspired me to write a poem, but more of that another time.

Dave has 3 volumes of Stand By Me RP books available on Amazon. The link will be at the end of this blog.

He is also doing a tour of America this year too. Details of that will be attached also.

I’d like to share this quote with you. It sums up the day I read Dave’s poem so nicely..

“ Some people come into our lives
and leave footprints on our hearts and we are never ever the same”. ~Flavia Weedn

Link to Dave’s American book tour:

https://lowvisionmd.org/official-dave-steele-the-blind-poet-2019-american-book-tour/

 

Link to The Stand by Me RP volumes 1,2 and 3, in that order:

So what do I do now? Life after diagnosis..

So I’d had my letter with the diagnosis confirmed – I had Retinitis Pigmentosa (RP). The letter went on to say about genetic tests, and a referral to Moorfields eye hospital in London. I couldn’t take them all in.  The only 2 words I saw were Retinitis Pigmentosa… the rest was a blur.

This was the second of three letters I had received. Prior to this one I had got one from the DVLA asking me to send my license back straight away. Looking back, deep down inside I had a feeling this would happen. Sitting in a wheelchair, with my leg in plaster, at the DVLA linked opticians – I did pretty well at the standard eye test. So my central vision was ok. It was the field of vision test that I didn’t do very well at all. I obviously missed so many flashing white lights. Still, I can’t click  what I can’t see!

It was still a big shock to receive that letter though.. especially as the letters came within. 2 weeks or so of each other. I really just didn’t know what to do, or say really. I was numb.. emotionally crushed.

I sent emails to a couple of  charities for the blind and visually impaired. Explaining what had happened and asking what was available. I didn’t hear back from them. I felt lost, devastated and very alone..

The third letter I was to receive came in August 2017. By then my plaster had just come off and I was in a plaster boot and alternating between one and two crutches. The letter confirmed I had osteoporosis, following a bone density scan I’d had a couple of weeks before. This explained why I’d fallen and broke my ankle so easily..

The combination of those 3 letters turned me into a hermit temporarily, and plunge me into fear and depression.

I didn’t go out in case I fell over and broke something again.. definitely not at night, but I didn’t even go out in the daytime either.

I had a nice safe little routine. I would get up, make some breakfast and watch Bargain Hunt or Homes under the hammer on the television. I never watched daytime TV before as I was always working. The other one I used to love watching was “Four in a bed.” A programme where hotel and B&B owners would visit and judge each other’s establishments, and the best one would win.

This would take me up to lunchtime, and my afternoon would consist of quiz programmes or listening to music.. I was happy doing this as I felt cocooned and safe. Sadly I withdrew into myself, and didn’t share what was happening to me with a lot of people. I think it’s ok to get low. It’s how we process things and try and make sense of what on Earth is going on… but to stay there is another matter. And looking back I did “stay there” for a while.

I don’t know when or what triggered me to feel like this. I woke up one day and knew I didn’t want to feel like this anymore. There had to be more to life than TV auctions and Hotel prize winners!

I went on Facebook and searched RP groups and found one straight away. I joined and introduced myself and started to browse posts. There must be someone I can talk to.. to ask what to do.. how to feel…

i stumbled upon a poem. As I started to read it, the tears rolled down my cheeks. They were tears of complete and utter relief! The words echoed everything I was thinking and feeling at that time. It was absolutely amazing! The poem was called “It’s ok” and the poet is an incredible guy called Dave Steele. I put a comment on about how much his poem meant to me, how his words captured everything I was thinking and feeling…..

Well, I’m at the train station ready to walk down to work now. I’ll talk about Dave and the poem that changed my life next time.

Have a great day!

 

And so it begins…

This is my first ever blog, so please accept my apologies for its appearance! I’m learning how to blog and tag etc. I write from my heart about my experiences and this is just the beginning. So please bear with me! Many thanks,  Suzanne.

I’d had a few big dreams over the years. One was to become a Nurse. I had one of those little kit things for Christmas, when I was 4 years old The best present ever! I knew I’d be a Nurse one day, and I didn’t think or want to be anything or anyone else. It felt like the most natural thing in the world to me. I realised that dream when I was 18. And that was a career that would span for 30 years or so. The last 10 years in a Hospice/Community Palliative Care environment. I absolutely loved it. It wasn’t a job to me, it was something I not only loved, but really enjoyed so much. To be with someone at the end of their life was an honour and a privilege. The most precious time of all. So many fond memories…

My other dream was to live by the sea. We’d had holidays in Dorset and Cornwall (South of England) ever since I was a teenager. We won’t go into how many years that was… but it was a while ago! I can remember we would always drive past this particular Hospice, overlooking the bay. Every time I would look up at it and think “I’m going to work there one day…” I was 13 at the time, and we drove past it many times over the years. I would look up and have the same thoughts each time….

Dreams really do come true

I just love being by the sea. It’s so beautiful, majestic and it soothes my soul. I only have to visualise it to feel such peace and calm. So along with working in “my Hospice” I also knew that one day I would live by the sea.

Both of those dreams were also realised. The power of the mind and visualisation at its best!

I moved to Dorset in July 2016 and then nearer the sea in March 2017. How wonderful was that?! The sea practically on my doorstep – less than 15 minutes by car. In fact, the view driving down to where I lived was stunning. You could see the sea through the hills, as you drove down. And on a sunny day that scene was breathtaking…

The Hospice in question had recently changed from a Day Hospice to an Inpatient Unit. And even better, they were advertising for staff! I applied straight away for a bank nurse position. That’s where you can be a little more flexible with your working pattern. I’d recently had training in Life Coaching, Hypnotherapy and Neal’s Yard consultancy. So the plan was to bring those 3 together and start my own well-being business. Alongside working in the Hospice that I’d loved for so many years.

I got an interview and they gave me the job! I’d had experience as a Practice Development Nurse so they were keen for me to start. I was also going to be sent on a Nurse prescribers course. Oh, I’m half a Doctor, I thought to myself! A tour of this amazing place was better than I imagined. I was actually inside this wonderful building…!!

And in the blink of an eye things change…

Then on the 5th June 2017, I broke my ankle. I contacted the Hospice to let them know I couldn’t start when I had planned, as I was going to be in plaster for several weeks.

During this time I was under the care of the Ophthalmic team at my local hospital. Retinitis Pigmentosa (RP) runs in my family. My Dad has it, he inherited it from his Mother- who in turn had inherited it from her Father. I’d had tests at Moorfields eye hospital in my 20’s, but it hadn’t showed up then.

The Ophthalmic consultant had suggested I contact the DVLA. Stating that I was having tests for visual field defects. Deep down I knew what I had, but I was in denial, so pushed that niggling gut feeling down as far as it would go. There we go.. nicely buried.. bless my little cotton socks!

So whilst still in plaster, I went and had an Electroretinogram (ERG) test. This involved sitting in a darkened room and watching flashing lights, which tested my response to light via electrodes placed on my head and lower eyelids. That was weird.. like having grit in your eyes that you just wanted to rub all the time. And what happens when you are asked not to blink? Yep, you blink!

That was on the 30th June, my Mums birthday. We celebrated after my hospital visit. I had my sunglasses on, as my pupils were as wide as saucers from the tests!

Then on the 13th July 2017, I had a letter from the DVLA requesting that I send my driving license back immediately. My visual fields were not up to the required legal driving standards…

I had to contact the Hospice and explain that I could not take the job. It was 45 minutes by car, (on a good day) and shifts and public transport do not mix well.

As any Nurse in the UK will know, we now have to revalidate to stay on the Nursing and Midwifery Councils register. This was something I was also unable to do, so I sadly did not renew my nursing registration. That felt like another massive blow. I’d been a nurse for so long. It felt like a huge part of who I was… then I thought, well who am I then!?

On the 25th July 2017, I had a letter from the hospital confirming what I had buried deep.. I had Retinitis Pigmentosa.

I made a decision to move back to Hertfordshire, where I’d previously lived for 40 years. If I was going to go blind and rely on public transport, then I wanted to be somewhere I knew very well….

It felt like the end of my world. Little did I know at the time, it was the start of something new and wonderful. They say painful endings are the sign of brand new beginnings.

More of that part of my story in my next blog…

The link to Neal’s Yard Remedies website  is below:

https://www.nealsyardremedies.com