Tag Archive for Missing it

I would like, if I may, to take you on a strange journey.

The Rocky Horror Picture Show is Touring …… Who’s coming?

Was the Facebook post of a friend in October.  Having only been talking with a friend about the very same show a few weeks back, there was only one answer;

Me, Me, Me !!!

So, never having seen the film, let alone the theatre production I set to work on my costume.  I grew up doing ‘The Timewarp’ I knew the background behind the story, so wasn’t going to be shocked by the performance.  But thanks to an ‘ex’ I had been put off watching it before!

He had never seen the show, just the movie….. Which he continually raved on about, being in Am-Dram himself, his not seeing the theatre show is what had stopped me watching even the film.

As you may have realised (if your a regular reader)   I am independant, some would even go as far to say stubborn.  I like to make up my own mind.  And I guess him insisting I must watch it had the opposite affect.

But now, many, many MANY years after our relationship ended I was ready to make up my own mind.

I wasn’t going to ‘spoil’ the show by watching the film first… I simply googled images from the show to see the charactors, then based upon the female cast (not the men dressing as women) I looked up quotes, from which I got;

I ask for nothing, Master.

Appealed to me, along with the maids outfit and crazy hair, there had to be hidden wonders to this gal…. And I wasn’t disappointed !!  So, Magenta was my character of choice.

I faught back the temptation to watch the film, to read the reviews, I was going to see this show ‘blind’ (Yes, pun intended!)

I hadn’t planned on the ‘blind panic’ I found myself in earlier in the day. All bought about by me going out with a ‘different’ group of friends, friends who I had enjoyed drinks with at the pub, friends I had been with at family fun days, but they weren’t friends that had ever had to support me with a long cane, in an unfamiliar environment.

This bought me to come incredibly close to cancelling the whole idea, I wasn’t strong enough to do this, I didn’t want to ruin their evening, I didn’t want to be in the way.

Then my babysitter arrived and verbal ‘kicked my ass!’

so, wig on, costume fitted I awaited my lift.  Thankfully no public transport needed, she picked me up before heading to pick up a few others.  My calmness washed over me as we sat in the car, the others who got in complimented me on my outfit.

I felt good!

Photograph taken in the mirror of me wearing a French maid outfit, red frizzy permed wig and smiling

I felt even better when my ‘disability’ was able to secure us a parking spot directly outside the theatre….. Given my lack of clothes, along with the lovely gentleman who was with us dressed in very little and the cold wind that was blowing… I was thankful to have my blue badges with me!

The closer we got to the theatre, the more people in costumes we saw (when I say we, not me but those I was with) it was a fabulous atmosphere from the second we pulled up.  Others in our party were already there, they too had made an effort and gone all glam!

Our seats were in the stalls, at the bottom of the staircase, without even having to ask, one friend linked arms with me and helped guide me without making anything of it or causing me to  feel as if I was any different to anyone else out for the night with their girlfriends.

The show amazed me, the lights, the sounds and the music…. But what made it for me more was the audience participation.  The narrator had some wonderful lines with just the right pauses and even he broke character and joined in with the banter, commenting on how we were the earlier show so ‘supposedly’ better behaved.

We joined in, we sang, we danced, we laughed so hard our ribs hurt.

The show was very unique to me, I mean in the way I saw it.  With the little sight I have left, anything further than my nose is a blur.  So the lights of the show and the colours of the stage were very unique to me.

If you haven’t seen either the show or the film, even if the theme may seem out of your comfort zone. I would suggest you go see it.  And for me, not having a good view or being able to see the actors didn’t detract from it, not at all.

A simple cold can bring the world down

It’s early January, the weather has beensuprisingly warm and wet, so having a cold is not something of a shock to me.  Its that time of year, it would be more suprising not to get one.

But this is different, this time this is making it a real struggle to get on…… I have plenty of tissues, Vick’s, hot blackcurrant and black tea to keep me going.

This time, the difference isn’t actually the cold, it is how it has affected my hearing, which in turn has made my world incrediby difficult to navigate within.

And if I am being totally honest, it is scaring the …. out of me.  My hearing is my indeoendance, my hearing is my way of ‘seeing’ the world.  My hearing is my escapism over a coffee, I am not currently able to pick up the conversations of strangers, I am struggling enough to pick up the conversation of anyone I am with!

I am feeling pretty lost.

Statistically I am pretty insignificant

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Manchester Madness

“It’s about time we met up for that coffee?’  a friend said several months ago.

All well and good, I do enjoy my coffee, but when the friend in question lives over 200 miles away, not so easy.

But who am I to let a 4 hour train journey stand in the way of catching up with an old friend and drinking coffee?

So, the planning began !!

Having spoken about it with friends (this end of the country) they suggested making a break of it, make it a city break to somewhere I haven’t been before, somewhere close to my friend.  So Manchester was decided upon.

Train from Southampton direct to Mancester Piccadilly.  Premier inn right in the heart of the city, booked.  My children were excited about the mini-break they would be having with the dad too… So, with times and dates put in place, me and google spent many hours together planning the time.  What to do, see, how to travel around and where to eat.

I can bore you with the details about me and technology, but that’s for a different post!

So, the day arrived.  A good friend agreed to get up rediculously early to drive me to the train station, my suitcase was packed along with the pooches essentials.

And off we went!

The train journey was made even more comfortable when a guard moved us to First Class so that he could make me a decent coffee.

By the time me and Vicky arrived in Manchester our plans had changed.  The ‘friend’ we were meeting wasn’t available on Saturday.

So, we were in this big, noisy, smelly city and no idea of what to do.

Firstly, we had to negotiate the trams…. Not using them, rather, walking on the path without being ran over by them…. Even Vicky struggled with the metal lines embedded in the concrete, her step was so gentle, like a small child trying not to step on the cracks.  It wasn’t easy.  But within a few attempts, she had the hang of it, sitting back from them as if they were a curb edge.  Then waiting for my command before walking on.

She was a star, an absolute star.

The hotel, being a premier inn, was very well concealed in a building line, with just a small sign and a single glass door with intercom to enter.  But with the helping arm or a stranger, we found it.

It was nice enough, exactly the same as any other premier inn and therefore perfectly familiar for me, regardless of  the distance from home.

The first walk after checking in was nerve-wrecking, where to go, what to do and where the hell was there some grass for Miss Vicky to do what she needed to do.

In went the headphones (just one ear) on went the Google map app and soon we were in Piccadilly Gardens sat in starbucks and watching the world go past.

By this point I was already tired out, especially my eyes.  I could feel the strain in them, but I didn’t travel all this way just to sit in a hotel room and ignore the city around me, so I started to plan!

Plan what I could do, where I could go and think of how I would cope if the coffee and catch up never happened.

Exhausted. Pained and feeling very vulnerable a dear friend answered their phone on the second ring, they calmed me down, they picked me up and they made me feel proud of what I had done so far, so if I did decide to spend the next three days in the hotel room, I hadn’t wasted my time, I hadn’t been stupid and I had faced a major hurdle for me.  After the pep talk, I decided it was time to do this, to be strong and enjoy my time, enjoythe being with me, enjoy knowing that regardless of where we were I was safe with my guiding girl by my side.  She wouldn’t let me down, no matter what.

…..

The coffee never did happen, but… The visit to The Lowry, The Imperial War Museum, The Blue Peter Garden, The big wheel and many more places did.

The downside of independance mixed with stubbornness like this, Is that when I did arrive back in southampton late on the Tuesday night I was so physically and mentally drained that I could hardly speak, let alone eat or even sleep.

It took five days for the eye strain to ease. For the headache to go and for the emotional wreck that was me to go away.

… … Now though, several months later as I write this (not feeling so raw) I realise that it was a massive thing for me and one that I can never forget.  In fact, it is a trip I hope to repeat, with my two wonderful children this time.  And we shall enjoy plenty of cake !!

 

The Struggle is easing, just a wee bit

So, having bad enough eyes that glasses no longer help other than when I am doing super close up work or reading is taking a lot of getting used to.

I can now leave the house without feeling that I am naked, after all I have been wearing glasses for the last 30 years, so they are kinda a big part of me.

This year though with the fabulous bright summer days I wasn’t actually leaving the house without glasses on, because for the first time I was wearing sunglasses, really nice wrap around sunglasses by Trespass, not fancy in anyway, but very comfortable.  In fact, I have been wearing my sunglasses this week as between the rain showers the sun has been blaring through the clouds.

It is interesting to ‘see’ (excuse the pun) how people treat me differently.  I haven’t been asked if I am a guide dog trainer once!  I have been offered more assistance than ever before and God knows I have needed it!

I have felt more vulnerable than ever, not even being able to see my friend that I know who is stood directly beside me.  I haven’t coped so well with dealing with the frustration that this has caused me.

 

My shopping habits have changed, I am no longer a bargain hunter in stores, nor have I bought any new clothes, it is so hard now. Much more harder than I imagined it would be.

More than I am happy to admit right now.

 

 

Struggling with the change

Last month I got my routine 6 monthly eye test. My prescription has altered, which I knew before going to the opticians. I was struggling to see my phone, without holding it at the end of my nose and looking over the top of my glasses as I could no longer see close-up with them.

The change in my sight wasn’t a big change, but it was a significant one.

The way my eye condition is, with the strength of prescription that I need I can’t have near vision and long vision. I can have ‘reading glasses’ to see things that are close to me, like reading, seeing my children etc. Or I can have distance glasses and be able to watch tv or the kids playing around in the park. But I can’t see anything closer than my arm length away. If I didn’t suffer with LCA or Nystagmus I would be able to wear varifocals. But as I do, I can’t.

With my LCA I am now also unable to adjust easily to different light levels, meaning that I am also unable to adjust between two different prescription glasses, to go from distance to reading lenses.

So I had to make a choice…….

And I chose to see my children, large printed letters and the people that I love. Because on a bright sunny day, I wouldn’t see anyone even with distance lenses!

However, this time at the optician I received the news that I was very close to the limit of what they could do for me with prescription glasses. I am getting to the limit of a difference that having a prescription would make to me.

The other issue I had, is that although my eye’s have only changed ever so slightly in the last six months, it has actually been over two years of ‘ever so slight changes’ since I have been in a position to purchase a new pair of glasses, because before I have even chosen pretty frames, the lenses themselves are in the region of £280 (after allowances)

So, having the money to spend, I bought a new prescription and the frames to sit them in. Two weeks to make them, and additional £100 to reduce the thickness from 9mm to 3mm, I got my new glasses……

And all the ‘slight changes’ have added up to one hell of a dramatic change.

A change that means that on a bright sunny day, I am better protecting my remaining sight with a pair of non-prescription sunglasses than wearing my actual prescription.

My new prescription, although strong for me. Is in-fact the equivalent of a reading glass prescription in the amount of difference that it makes, especially with my distance vision.

So for the first time since I was about 4, I am getting used to not wearing glasses full time. An issue that I am struggling with just a bit.

When I am outside in the glorious sunshine that we are experiencing at the moment, I am comfortable and confident wearing my new sunglasses, but inside is a different story.

At home, right now as I write this I am wearing my glasses, when I at meetings I am wearing my glasses, but when I am in the gym or on the climbing wall, I do not wear my glasses.

And it is not a look or feel that I am getting used to…… Just Yet!

Where would a blindie be without an Iphone?

As my sight has deteriorated, the brightness, font size and contrast have all increased on my phone. Now Siri has become my best friend and now that I have turned on the voice over, my phone is even more accessible than ever.

I have also found the camera to a fabulous addition to my life. It has enabled me to take numerous pictures of my children playing, birds flying, animals on a farm and today a squirrel. I have found that so far in the summer holidays I have taken nearly 100 photos a time when we have been out and about. Not because I am boring everyone on Facebook with what I have been doing. But so that I can see what the children have been doing, for example when they are playing on the swings in the park. Or when they are feeding a goat at the farm. These are just photos for me, many of them get deleted, but it means that I can watch them later or even use the zoom feature to watch them or check on them while they are running around.

Some people curse smart phones and Iphones, but for me having all these features with me enhances my independence not only with my children, but when I am shopping. I used the camera just yesterday to take an image of a shelf price that I couldn’t read. Because with magnification and holding at the right level, I can read it.

I can’t live without mine now. It is a way of communicating with friends and family, my Sat Nav, CCTV, document reader and so much more.

Insight in to the future – I didn’t like it

Yesterday morning I ran out of hayfever tablets, and it wasn’t until getting ready to go to bed after my eyes had felt ‘scratchy’ all evening that I remembered. But within few short minutes it was too late.

The damage was done and there was absolutely nothing I could do.

My eyes started to weep a sticky kind of tear, my eye lids swelled and involuntarily my eyes were closed.

Painfully so, too the point that I had to physically pull them open to try to put drops in, but the pain was so great I gave up on that idea.

All of this is down to my hay-fever, not my eye condition. So I wasn’t overly concerned.

But I wasn’t prepared for what happened and how what followed made me feel.

Not being able to put the eye drops in, the only other option was sleep or try too.

But to get to bed, I first had to turn off the lights and ‘close-up’ the house for the night.

I can and often do walk around my house without the lights on and I know where everything is … Well, maybe apart from the odd toy, or worse a large dog smoked bone !!

But, this was very different.

If I close my eyes when all the lights are on, I can still see the brightness from the lights through my eyelids.

And this was exactly what it was like last night, only because of the swelling and pain, I couldn’t just open my eyes a see the shapes of the lights.

This brightness was very uncomfortable, and more upsetting than I though possible.

Walking around the house turning off the lights was something that physically I could do, but emotionally it was heart breaking.

It wasn’t until the house was in complete darkness that I was able to feel calm again.

There is likely to come a time in the not so distant future when all that I will be able to see is light from dark, with possible shadowing.

Lastnight was an insight (pun intended) to what that world will feel like.

And I don’t think it is ever a world that I will he ready for.

Although registered as severely sight impaired, which many class as ‘blind’ (even in the medical world) I can still see, all be it small amounts in little detail, this is enough, my brain and memory can fill in the rest.

How will my memory cope with filling in the rest when all I can see is light and dark?

How will I tell that my children are amiling if I can only see their shadows?

Will I ever be able to cope with the fact that my sight is ever diminishing?

Or understanding how I will fit in an ever shrinking world?

Any ideas would be grateful received.

Thank you.

See My Way

As I have always had my eye condition, I struggle to explain it to others as I am not aware of what it is like to see with good vision. I can explain how it has changed and talk of what I can see now, in comparison to what I could see several months or even years ago. So I thought people might like to see what I see, this is not easy to do and with the simple computer software that I have, it isn’t a true representation. But I thought you might like to take a look.

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I wanted to show you, what I DON’T SEE….

I can’t see as far as this, or with as much peripheral. What I can see isn’t as clear either unless it is something at the end of my nose.

The left shows the tweaked view, with the original filming on the right. This was recorded during a walk one morning to the train station on my iPhone to give people an idea.

The pain of my cane

A few weeks ago my faithful Guide Dog had to temporarily hang up her harness to have a lump removed (just a ‘older age’ cyst, very routine) With her doing this, I had to dust of my long cane. I have kept up my cane skills and on occasions have used it when it has not been practical to use Vicky. However, it has been a long time since I have used it on this scale….. Even when I trained with it, my independence wasn’t what it is now, so team this a decrease in my usable sight and it has been a hard 10 days.

I managed the first few days of her being off work with doing very minimal trips out, mostly because she was very groggy from the operation, so I daren’t leave her too long at home. I then managed to time things in with when I was seeing friends who could come with me.

But there is only so many times I could do this, not to mention, wanted to do this! I was struggling with the dependancy I had on others.

So off I went alone, with only a few of the normal ‘cane jabs’ recieved from uneven paths, or missing a curb edge. These are part of ‘the norm’ any long cane user will tell you about.

On Friday, one week after her op, Vicky was delivered to a boarders, where she got to enjoy some doggy company and rest, while I went up to London to see my eye specialist and professor for a dna trial I am part of.

A trip I dislike at the best of times, but without my faithful friend I felt lost. I had a friend with me, but the concentration needed in London increases ten-fold even with a guide dog, with the cane it was horrendous. Even before I had my eyes dilated and could see even less.

Thankfully my friend drove to help ease my stress. But the concentration needed even for the much shorter walk from the car to the hospital was too much. (Thats another post though.)

By the time we left the hospital four hours later my eyes were heavily dilated and what little I usually see was much smaller and incredibly painful. At this point the cane was used purely to role infront of me and I linked in to my friend for support.

Saturday morning I headed off to collect my son from his friends house where he had been enjoying a sleep over. Hearing the bus coming up the road, I started to run, resulting in me going over the top of my cane having caught it on a drain, flying forward through the air and landing on the palms of my hands and my knee.

Ouch…… it stung, but the embarrassment was much worse, especially as it was actually the bus driver who had seen my fall and got off his bus to help me up and check me over if needed.

 

Thankfully, grazes, bruises and a damaged pride were all I suffered. I couldn’t stop, the day was getting away with me and I still had to pick up Vicky after Lawrence, so there was no time to hang about, go home or even feel sorry for myself.

It was just one of those ‘blind fails’ as I call them.

 

So on I went, enjoyed the rest of the day and soaked my wounds in a warm bath later.

Having used a long cane for some time, I am used to the odd bump. Either from me bumping into something, or a poorly laid pavement causing my cane to ‘stab’ me.

But I could not cope without it when my guide dog isn’t available. Because without either cane of dog, I could not cope on my own in the great outdoors.

I was not prepared for the bump I had on Monday on my way to college though…………

I had negotiated my local station, no problems. With the odd ankle sweep for people who thought they could nip in in front of me to cut me up. (One of the enjoyable sides of using a long cane over a guide dog!!!)

Generally as usual, people were very helpful. I was asked upon reaching the station I required, if I needed any assistance, to which I politely thanked them and said (knowing the station well) that I would be fine and headed for the stairs.

Up the stairs, across the bridge no problem, almost down the stairs on the other side when it happened.

When walking up stairs, I hold my cane upright in front of me, in the middle of my body, so that I can use it to judge the depth and height of the treat on the stair and also to be able to feel when I have reached the top step.

On the way down though, this is different. On walking down steps, having swept the ground on the initial step to find the first step down, I then hold my cane like a pencil, so that it crosses my body on a diagonal, so that the ball tip can run along each of the steps again so I can feel the depth and also feel when I reach the final step.

My cane is no more than my shoulder width while doing this, so that it is not sticking out, but enough to enable me to feel if an obstacle is in my way.

So, almost at the bottom of the staircase, I had already negotiated the 180 degree return half way down, the commuters with suitcases and bikes rushing up the stairs to get to their platforms.

When I felt someone rush past me very closely also coming down the stairs. Someone who caught the ball of my cane with their foot, causing it to move out from where it was rolling along the step edge. In the split second it took for me to recover it back to the step I had missed the bottom two steps and landed on right knee with my right hand again taking the brunt of the floor.

 

A kind women helped me up, while another bought a guard over. They were concerned and checked my hands for cuts and any sign of breaks.

I felt (yet again) very embarrassed by falling and was doing all I could not to cry or get upset in front of these strangers.

When the guard arrived, I shoe’d the helpers away. I was stood up again and just wanted to get to college and away from people.

The guard asked me how I was and what had happened, I explained that it was ‘just one of those things’ and that I was more embarrassed than anything. To which he suggested that next time I use the lift, or had assistance in the station, “after all, you are disabled and shouldn’t do these things alone.”

I think this upset me more than pain in my hands. I did all I could do, which was to thank him for his help and left the station.

 

I made it across the road before bursting into tears, I had to hear a friendly voice, so using Siri on my phone (as I always do) I called a friend….. It took a few attempts as Siri had trouble understanding a blubbering me!

My friend was fab, calmed me right down and checked that I really was ok. Even making me laugh at a silly joke.

 

By the time I got to college I was composed and ready to face the day.

I daren’t share what happened with any of my college group for fear it would set me off again.

Having managed to escape any further bruising to my knee, but having my right palm take the full brunt of it, I am now wearing a padded support on my hand and wrist to help relieve the pain that I am in and also to cushion my wrist and palm, so that I can still use my long cane and try and not put myself into a forced hibernation until my trusted guide dog is ready to return to work.

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