Today is one filled with mixed emotions, concerns and thoughts. Today, 18th January 2015 is the last working day for my guide dog Vicky. We have been working together as a qualified team since 18th November 2009, and it has been an amazing 5
It’s almost 11.00 o’clock, 12 hours after this crazy day started. The climbing arena was nothing like I had ever seen before and no matter how much I had researched and looked at photo after photo I was not prepared for the quarry that I
Well, this is something new……. I am sat in the passenger seat of my friends car doing 70+ MPH on the M6 Motorway travelling on my way to Edinburgh; while typing this blog. My iPad is tethered to my phone for 4G and my voiceover
While with a group of friends today we were talking about faith. Discussing it and questioning what our understanding of it is. One comment made about one way to look at faith was If you’re sat on a chair, you hold faith that THAT chair
So, tomorrow is St George’s Day and at 2.40 this afternoon my daughters school sent out a text message to say that any Beavers, Rainbows, Brownies etc are free to wear their uniforms instead of school uniform… With full badges! This created 2 panics…. 1)
Back in 2014 after initial genetic screening was ‘inconclusive’ Proffessor Moore at Moorfields ask my permission to enter my blood into the 100,000 Genome Project. A project conducted by the NHS looking specifically at cancers and rare diseases to support treatments, diagnosis and research. (For full details on the project please visit https://www.genomicsengland.co.uk/about-genomics-england/the-100000-genomes-project)
As the name suggests it is a research programme that looks at all 100,000 genes. So I was advised it would take some time before any results were expected back.
However, Prof had felt that given my various conditions that were going on with my eyes I would most likely have some interesting results come back.
Fast forward 5 years and this arrived in the post.
Preliminary results for my genes are in, but to look at these in more detail I have been asked to send in more blood! Thankfully I was able to book in with my local doctors surgery and pop my samples back in the post. (Which is exactly what I did)
In the meantime I had my bi-annual visit to Moorfields, where the registra I saw started to explain the preliminary findings; Prof wasn’t wrong in his thoughts !!!
Which all I can say at this time is that they are most certainly interesting and not what was suspected at all. Not in a bad way, no illnesses or disturbing diseases were discovered; but in a way that has opened more questions than it has answered.
So, now to wait up to a year for the detail results to come back and hopefully a clearer understanding….. Watch this space.
So, it had been a bit of an eventful weekend.
Not in anyway the weekend I had planned on having.
Sorry for the riddles. I won’t keep you in suspense anymore.
On the weekend beginning Friday 7th June I ended up in hospital, suspected of having suffered a TIA or ‘mini-stroke’…. The pre-curser to an actual stroke.
Something that having never smoked and only ever drunk alcohol occasionally I didn’t think I was at risk of.
After all I kept saying “but I’m healthy, I’m active” but actually as one lovely nurse explained to me stroke can affect ANYONE! From babies, children, teenagers, young adults, fit adults, unfit adults right through to older people.
Before I continue let me just confirm, thankfully the initial suspicions were incorrect. I had not had a stroke or a TIA or actually any form of brain bleed.
I feel very fortunate for this, yet I felt the urge to write this blog to help others understand what happened, why this was suspected and how I am now.
Friday evening I was sitting having just eat a regular sized dairy milk bar (other chocolate bar brands are available) when I suddenly got a tingle in the left side of my mouth and chin.
Initially thinking maybe I was having an allergic reaction on the advice of a friend I reached for my phone and took a selfie. Ten minutes later the tingling was persisting, yet now it was moving. It was also beginning to spread down my shoulder, left arm and left leg.
Another photo, yet no swelling.
A call to 111 (out of hours Dr) a quick ‘check-list’ of symptoms and the call handler said something that left me shocked
“we have sent an ambulance to your house, please do not eat or drink anything, please lock away any pets.”
This is when I explained I had a guide dog, I would put her on her lead, but wouldn’t lock her away and before I could ask why there was an ambulance coming the call handler told me to keep my phone to hand, not to call anyone except for 999 should my symptoms start to get worse ….. then goodbye.
I messaged friends but tried to tell them not to worry (even though I was actually beginning to feel quite concerned)
Thankfully I didn’t have to wait long. The ambulance arrived and the paramedics quickly explained why they had been called.
Although after initial checks and having me smile at them, the paramedics were not sure what had happened; but felt that it wasn’t a stroke. But with the nature of my eye condition they were unable to test my eye movements for reaction. So after a call to another Doctor it was decided the best thing to do was to take me to hospital.
At this point two of my small group sisters arrived. Even I could see the panic in their faces…. The paramedics explained to them, I reassured them and with the promise that I would most definitely call when I needed to be collected from the hospital (hopefully in the next few hours) I left in the ambulance.
Off to Queen Alexandra Hospital we went, but no blue lights, no panicked rush; which I actually found quite reassuring.
It even appeared that Fizz’s comfort was more a priority for the paramedics and then the staff in Accident and Emergency than what had actually bought me here in the first place.
Because I was certain I would be discharged after some bloods, I had kept her with me.
But when I was moved onto a ward to undergo a CT scan and an MRI I knew I wouldn’t be found home soon.
But it was important that Fizz did…. She moved to the ward with me, walking beside the bed as I was transported. The nurses took it in turn to take Fizz out for walks and wee’s … They even made her a makeshift bed of towels so she could be as comfortable as possible.
I think the nurses were most upset when Fizz was collected on Saturday morning to go off for a break with friends, where she could relax and not be worrying about me with all the noises and smells of the hospital.
I had been moved to the stroke ward, where I spent the weekend as I needed an MRI scan that wasn’t available until Monday morning.
I discovered that it was standard procedure to serve me soft almost puréed food. Thankfully a friend had dropped off my Herbalife Nutrition shakes so that I could take care of my own food and actually enjoy it.
Monday morning saw my MRI scan followed by a visit from the consultant who explained that my results and scans showed no signs of stroke or TIA.
But with the continued weakness and numbness in my left side he could offer me no explanation of what it could be, as he explained his expertise was strokes.
Thankfully a friend was able to collect me and drop me home where it was great to be able to lounge on my own sofa.
For now I am to rest when I feel I need to, not push myself to do anything strenuous and hope my symptoms ease and improve.
As the title suggests, I am so very grateful I have not had a stroke. But not knowing what this is means it’s hard to know how long recovery will take? If I will recover? And more importantly, not knowing what THIS actually is?
This weekend was set to be AMAZING. When you have tickets to see the group Muse live you know it will be a show, unlike any other gig.
Following on from seeing them at the O2 in London back in April 2016 where they put together a pure theatre experience; … expectations for this tour were high.
This time it was hosted at London Stadium, home to the 2012 Olympics’ and a venue I have previously been to when I saw Guns’N’Roses in 2017. A very different venue from the O2, being that it is partly open air is probably the biggest challenge.
And that is just what the band had to deal with.
For me, knowing my sight and hearing were so much more progressive and had greater deteriorated from 2016 I was a little nervous to say the least.
Then came the biggest challenge ….. Weather reports set to see London temperatures reach in excess of 22 degrees for the weekend. In the city, 22 degrees feels more like 27-29 degrees and meant just one thing … Fizz my guiding girl; who loves London so much wouldn’t actually be coming.
This was what was best for her and as I was trailing and staying with a good friend who knew my issues I wasn’t overly concerned about spending a weekend with my (not so faithful or intelligent) cane. On the plus side, this meant that I could take full advantage of all the escalators on the tube network and within Stratford’s Westfields shopping centre.
Although in a funny twist this meant that I actually got lost at London Waterloo for the Jubilee line as I wasn’t sure which set of escalators it was! But once that was sorted, I made my friend laugh at my ‘childish giggle’ of being able to use the escalators…. She also got to watch first hand how people paid very little attention to my cane and often found themselves jumping out of my way.
The weather was hotter than expected, so I know that I made the right decision leaving Fizz home….. Even though I discovered that our seating within the stadium would have afforded her plenty of room to lay by my feet.
This time on visiting the stadium we took advantage of the accessible shuttle bus that ran from the end of The Jubilee Line station directly to Bridge Three at the stadium. That just so happened to be quite close to our actual seats.
This tour was called ‘Simulation Theory’ so I knew it would follow the similar robotic theme of the videos that had been released with the album, the colours were set with a mix of blues and pinks and the slight ‘stranger things’ theme that Muse had insinuated upon would all be included.
Our seats were to the right hand side of the stage, the stage this time was at the far end of the stadium, not in the middle as it had been with ‘Drones’.
But my friend that was with me said we had a good unrestricted view of the whole stage (or rather she did because with my sight I could only just about make out the large screen)
The support acts were good, but visually very minimal as I can only assume that was because it was being saved for the main event……
When Muse came on the natural light was beginning to fade and the screens were being used fully.
I took photos and even the odd video of my favourite songs. However, I left the gig feeling totally under-whelmed.
We met up with other friends who had been there too. They were sat further away, but directly face on to the stage. As it would happen, one of the party was actually my friend that had attended the 2016 Drones tour with me. He was in absolute awe of the gig, saying that they did not disappoint and they even improved upon the showmanship of the previous show. So I realised then I had clearly missed something….
And I realised that I had missed the most magical parts of the show, which left me feeling quite upset and frustrated with myself because this seemed to mean that my time of enjoying ‘a show’ for more than the music was over.
I watched the videos that I took, and was able to zoom in on the visuals that I had missed. Although this wasn’t quite the same….. I am still undecided as to how I am feeling by all of this.
Maybe I need to see among my friends if any of them took videos that I can watch?
Maybe Muse will release a film of Simulation Theory as they did with Drones? But then, that may be another 2 years to wait.
Since I got my tandem my daughter (she’s 13) has been desperate to see if she can ride with me.
Now the nicer weather is on its way (I’m not jinxing it by saying it’s already here) I felt today was a good day to try it out.
Given the nature of my tandem and I believe all tandems the pilots up front is set on a taller post than the stoker on the back.
What ensues is pure comedy!
She can just about get on the front, but with her feet both on tiptoes she barely clears the frame. With me holding up the bike she manages to get onto the seat; yet her feet struggle to get to the peddles… When she says
“It’s okay mum, I can ride on the back and just do an audio description commentary of where we are!”
Let’s think ???? How about “NO!”
For fun I did ride with her on the back in the carpark area behind our house and we both nearly fell off from laughing so much.
So for now, much to her disappointment my tandem is off limits for my daughter. But at the rate she insists on growing I am thinking come next summer she will be all set.
This is likely to be one of those posts that will be void of humour, but one I feel I wish to share with you. I have eluded to it in the past, but never been so upfront; however now I feel it is important to share.
As someone who is called ‘inspirational’ and ‘stubborn’ and wildly independent I am not the sort of person people would think could face isolation.
But I am.
Maybe it is because I am fiercely independent. Maybe it is because others see me as strong. And yes; I am both of these things, I am also many other things too.
Isolation doesn’t mean someone is alone. It doesn’t mean someone isn’t surrounded by others.
To me; isolation is what it is to be in my own mind because of my sight and hearing loss; and in a way because of how these affect my mental health.
Sight loss is such a complex condition and so very individual that you will rarely find anyone who experiences it in the same way. This also makes it tricky to explain to those who are sighted.
And for me, isolation is only something that I feel will increase as my disability changes. This in itself is a very fearful time for me as I learn to adjust to this and put in place coping strategies to minimise the impact to myself and those close to me.
I find myself thinking of how with my sight and hearing loss I will also loose my independence, the very same independence that I fight so hard to keep, for as long as I can.
However loosing my independence feels as if I would loose myself. The life I have built, the relationships I have created.
And that in itself is isolating !
I already hold certain limitations in my life because of my sight. Having never been able to drive I have always felt limited by not having the freedom to just get in a car to take myself to the beach…. If I wish to go to the beach I either have to wait for a friend to take me or go at a time when I can get there myself on public transport.
However the thought of more limitations being placed on me, as my independence dwindles is what fills me with this feeling of isolation.
I have thought and rethought (I have even over-thought) this post. However I needed to write it as much for myself than for anyone who is reading this.
Although maybe, just maybe one of you reading this will find it helpful to you too.
This is one of those posts that I can’t use my usual humour and sarcasm….. Although I will try!
There has been lots in the news of late about the dangers of ‘single use plastics’, straws and in turn packaged, prepared vegetables and fruits.
But what are often marketed to those with disposable income and little time are also an expense for someone for whom cutting up a whole cauliflower or pineapple could be problematic or energy consuming, when energy wasn’t a luxury, rather a commodity to be saved for ‘essentials’
For me, there are times when buying these ‘prepared’ easy options are the difference between me being able to eat fresh and healthy food, rather than relying on ‘ready meals’ or jars of sauces. (Not that there is anything wrong with either of these; but I prefer making my own dinner)
My freezer always includes a bag of chopped red onions, my fresh food shop also often includes pre-cut fresh pineapple or melon.
Because chopping these myself would actually mean I would just go without!
Sounds like a rude or harsh question; yet it was asked without any malice intent. It came from a little girl while I was visiting her school and doing and giving a talk about living with sight loss.
The teachers within the room took a sharp intake of breathe (I think it worried them slightly) However as this hadn’t been the first ‘curveball question’ I had received from the group I was already half prepareD for it. I started by thanking her for her question (while buying myself a little time to answer it)
“I wouldn’t say I like it….. But I wouldn’t say I hate it either. Because with my sight the way it is I have had the opportunity to do so many things that I am not sure I would have done had I been fully sighted.
But when I did I gave this answer (in a round about way-not sure I used these exact words)
I only took on the challenge of climbing because without being able to see my feet on the ground I knew that being high on a wall or mountain wouldn’t be an issue, as one of the ‘blind perks’ that lead to me trying it was that a fear of heights wasn’t an issue. The chance to pre-plan a route wasn’t there either. I climb mainly by feeling my way up the wall. And my feet often follow where my hands have already lead the way.
As my working life reduced. I began to work with different charities; through which I have gained so much, so much more than I could have achieved in my working life. I have also been fortunate to be there for my children more, and although I can’t see them as clearly in their school productions. We have had much more time together than I would have had had were my sight not decreased.
Yes there are times when I have dark moments. But anyone with or without sight loss has those, so I don’t think I am any different.
I have gained so much more enrichment to my life as my sight and now hearing has demisnished.
Being blind and hard of hearing is who I am and I just have to make the most of it.”
Maybe this was much more detailed and deep than I expected to share, but as I sat there with the class of children before me; I had a moment of reflection on my life and all the good things that have come from the small fact that I am loosing my sight and hearing.
‘Over there’ is a world of myths and legends, often where ‘that way’ can be found. (Or so I am told)
It’s a place where as someone with a visual impairment upon asking for the location of something I have been directed to MANY times.
“It is a place I have never found !!”
Usually such explanation to a location comes with a wave of a hand or arm, but rarely any eye contact from the person giving the instruction.
Don’t get me wrong, there are times when such directions do come with eye contact, but due to other people or a counter my guide dog is often obscured.
I am more than happy to press the matter and ask for more detailed direction. And thankfully on most occasions it has been easily obtained.
But it reminds me of how we can all become so familiar with our environments that we forget that someone new (with or without sight-loss) may not find it so easy to navigate.
I know people get flustered giving directions; do they give it from their point of view or the person asking?
If it is a shop or business and you are the employee being asked for directions the easiest way to direct someone is to walk them there.
Asking if the person would like to take your arm, explaining to them when you are turning left or right and most importantly when you are walking through a doorway, even if the door is open.
I am thankful that Fizz will fall in behind someone guiding us and simply ‘follow’ but for me I like to have the verbal directions as it means that should the need arise I can find my own way if there is a next time.