Tag Archive for Feelings

11 Dec 2013
Blind Blog

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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08 Dec 2013
About Me • Blind Blog

It’s official, I am annoying !!

Last week saw me attend my 9 monthly checkup at Moorfields eye hospital.

My condition LCA is grouped in with RP, retinitis pigmentosa, as it includes many of the se characteristics like night blindness, loss of peripheral vision. With LCA – Labers Congenital Amarosa, I also suffer with myopia (severe short-sightedness) and nystagmus (involuntary eye movement that is continual)

I am now down to finger counting in both eyes, when I used to get the top line of the eye chart stood at half the distance in my rift eye.

Given that six years ago I was between the second and third line on the eye chart (depending on the letters)

I have an incredibly strong prescription lenses, which is what gives me the sight I explained above. Without any glasses it is purely light and colour I can see without holding something above the top of my nose!

Please don’t be reading this and feel sorry for me, my sight is what it is, yes it may be worse than most, but it is much better than some.

So, up at Moorfields for my nine monthly check, I have noticed many little issues in the past few months and with the puppy being off work, I was even more aware of differences from the last time I had used my cane like this.

The long and the short of it, after four hours seeing a consultant, an eye scanning team, a retinal photographer, a registra and then my Proffessor, I have an increase in my cataracts (but not enough that they would risk laser surgery with my nystagmus) I have more noticable ‘floaters’ parts of my retina that is moving around in the eye jelly, a deteriation of my peripheral.

I can no longer do the peripheral eye test where you stick your head in a white bowl like test machine, stare at the red dot in the middle and press the button when you see a green dot.

Now they use the images they get from the scans and photo’s to tell me about my percentages. I have a difference of 21% from eighteen months ago, which sounds significant, but when I have less than 10% periferal it is even more…. I am not a mathamatitain, but even I can work out that that is a lot.

The cataracts are causing everything to feel as if it is either darker than it used to be or is unbearably bright when I have been in a darker environment.

So, the main reason I go to Moorfields is because I am part of DNA study to help with genetics for RP and LCA. So far they have found and researched 14 different genes…… And then there is me!

I told the registra that I liked to be different, he said I wasn’t different I was annoying. He actually called me annoying.

But then the Prof came in to see me, telling me of another study that I could be part of, very simple blood sample is all they need. He reminded me that my condition was definately not ticking any of the right boxes at the moment and making his and the research teams work ever harder. But that at the same time, he still found my scans and photographs magical.

So, I am offically annoying.

And that is exactly what is now written in my hospital notes too !!!

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23 Nov 2013
Blind Blog

It’s all about perception

Tonight when popping onto Facebook and catching up with my friends news a fellow ‘blindie’ posted about the trouble they had had when booking a table for a family dinner, when doing so she informed them about her guide dog that would be joining them.

She put up on Facebook that they would not recommend her bringing her guide dog is she could leave it home guide dog.

Having eaten at the restaurant before it is a tiny place, not that it is overcrowded, just small. When I ate there it was for a family celebration and as I was going to be enjoying the wine I left my trusted pooch home.

When in the restaurant, the waiters seemed to be struggling to move around the tables as all of the tables were occupied. The tables themselves were quite small especially considering the fact the meals included so many dishes per person.

I am maybe the one who is the devils advocate here, but I do try to look at both sides. To clarify I wasn’t part of the phone conversation, so can only comment on what has been posted on Facebook.

My friend who I shall call Bee says that when booking the table the person she spoke with was very rude.

As a guide dog owner I too have been on the receiving end of rudeness or in most cases, lack of understanding. It is surprising how many people, especially shop and restaurant owners aren’t aware that guide dogs and other assistants dogs are cleared by environmental health to enter their premises.

Bee felt that the restaurant were very rude and is asking guide his team to get involved because if the situation.

But is it real rudeness?

Is it a language barrier? On the telephone voices and accents can sound rude, when they are not understood or heard in the correct context.

Or is it something deeper?

Is it that as someone who is often discriminated against starts off on the back foot?

For those that have faced discrimination or difference just like me become overly defensive and instead of being assertive, form aggression toward certain subjects ?

As the post suggests, it’s all in the perception!!

If you read a Facebook status that a guide dog had been refused entry into a restaurant because of their guide dog. How would you respond?

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08 Nov 2013
About Me • Days Out

Fireworks

This week saw me with my family go and watch a firework display with my daughters Cub group, after navigating in the dark from the car to the camp site where the bonfire was crackling away.

We sat around enjoying campfire songs, I was mesmerised by the flames, watching the little flecks fly off into the night sky, thinking how this looks to others, do they see the flames as I do?

This was when I began to think about what a firework
Actually looked like when it went off
In the sky?

For me it is just a burst of colour, but I wondered if ‘sighted people’ saw individual flecks or different colours?

So after the camp songs & warming up by the fire we walked up to where the fireworks were being set off from & I divided that I would film some of the fireworks on my phone so I could see it as others.

This was what I filmed

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The film shows almost perfectly what a saw from the embers that were coming off of the fire, little fuzzy balls like those I spoke of in an earlier post (looking through raindrops)

Looking at the practicalities of using an iPhone to film fireworks that are roughly 100 feet in the air won’t give you the clearest image, but actually the ‘poor film quality’
Allows me to explain more to you about how I actually do see.

Maybe you can have more of an understanding as to why I was mesmerised by the little embers flying off the fire rather than the fire itself.

This has given me the chance to let you literally ‘seemyway’

I hope you enjoy?

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04 Nov 2013
About Me • Blind Blog

Learning to forget to look…., Not ready for that yet!

Although I am registered as ‘blind’ I do have some sight, all be it distance vision that doesn’t even get me the top line on the eye chart and central vision with a peripheral of less than 10%, a figure that has recently reduced by 17%…. Feel free to do the math on that! To me it means just one thing

“my remaining sight is deteriating and quicker that I really would like”

Making the most of my remaining sight is key, and by actually using my eyes I am causing no harm, nor am I strengthening them. The deterioration of my retina is uncontrolled and unmapped.

So, by now you may feel confused by the title of this latest blog, well let me explain. As my sight has deteriorated, my eye’s and the period for which I can use them to concentrate on anything has reduced dramatically. In theory anyway, I say this, because I can still spend hours watching a really good film, of which without the aid of audio descript I miss a large percentage of it.

But for this I suffer.

As my eyes tire from the concentration, they in fact become dry, and difficult to close without seeing vivid flashing images on my eyelids.

As I said above, having missed a large percentage of a film, I now rely fully on Audio Descript and do not strain or even try to see what is actually happening on the screen. This has given me back my love of the cinema in recent months, so that is a bonus!

But there is one part of my life that I can’t stop over concentrating on and overworking my eyes, that is my phone, my laptop and my iPad. All of which have fabulous built in accessible software, after all Steve Jobs insisted that technology was assessable to all, not as an after thought, but as part of its design, hence why all my tech is Apple…. That and the fact that originally my training before my sight loss was in Design and if it was design, it HAD TO BE Apple.

Anywho, I digress. I have dragon and Siri that enable me to speak to my tech for it to then type my words. I have magnification, I even have voice over. And yes for you techno-phobes, it even works on touch screen. Even more so since the IOS 7 update!

But the thing is….

I have SOME vision and I can’t help but use it.

I can touch type and thankfully have been able to do this from a very young age (I think I was about 8) so I don’t have to look at the keyboard or technically the screen either, but I do like to proof read what I have written, especially when it comes to emails, letters and more recently college assignments.

It is a college assignment that has in fact lead me to write about this. You see, it is currently 4.15am on a Monday morning, having been working on my latest assignment that is due in at 9am THIS MORNING. I am now not able to sleep, even though it would be a really good idea if I could as I have a 4 hour lecture and a gym class later today too!

The question you are probably asking right now as you read that last paragraph, is what the….? Yes, I did leave this assignment a little later than others, but actually that isn’t the reason why I am up so late with it.

The REAL reason I was working on it so late, was because of my wish to see what I am doing and the light levels. You see even with the daylight lamp on, if it is too dark in the rest of the room, I struggle greatly to focus on all of my work, as the light level varies from that under the lamp to the rest of the room.

With the darker evenings (which in fact cause the darker days) I am able to sit down with a suitable light that illuminates the whole room at about 6pm.

This is slap bang in the middle of feeding time at my zoo, then comes baths, books and cuddles before bed for my 2 little monsters. So that 6pm soon becomes 8pm and I’m sure you can see where I am going from here?

I have tried and tested myself with this, so that I can understand what I can do without suffering and what I can’t achieve without the suffering.

The short answer is not much.

Once I hit 2.5 – 3 hours thats it, I can look at spending at least that again letting my eyes settle down. The good news is that if I extend that to 5 hours, that doesn’t increase the ‘down time’ that I need.

So, to save my sanity, especially in the winter months I need to start to stop looking.

But its hard, emotionally more than anything….. The reason is because, one day I wont ACTUALLY be able to see it, so while I can why shouldn’t I?

If your sight were or if your sight is deteriating would you want to stop seeing all the things you can see now knowing that in the future you will have no choice but not to see them?

This is a tricky argument that I have had with a few people, you see the one point I struggle with is that apart from the lack of sleep, I am not causing myself any harm, I am certainly not causing my eye’s damage.

This I have checked, double checked and yes, you got it TRIPLE CHECKED!!

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03 Nov 2013
Blind Blog • Days Out

Blind Dating

I have explained before that I have a wicked sense of humour….. This blog post shows this off perfectly.

Sitting yesterday with a friend having a much needed catch-up over a leisurely Sunday brunch at a popular Italian American restaurant, the following occurred.

As usual, my trusted guide dog was laid on my feet under the table waiting for any food to drop. Me and my friend had been talking about how life had been for me since seperating from my long term partner earlier in the year. She knew that I had struggled with others opinions about being a single parent, she also knew that I had taken the decision to end the relationship and that it had been a happy decision for me.

This led us to talking about dating and how after having been in a relationship for so long you would even start going about this. At this point, a couple were seated in the booth behind us. I remember this point as the woman in the couple was sneezing continually, so I passed a packet of ultra-balm pocket tissues behind me to her partner.

Me and my friend continued talking about dating, she commented on how I could try internet dating or speed dating. This tickled me, so I made a joke of how she was fundamentally suggesting that I went on a ‘blind date’ as I went on to say, my days of catching someones eye across a crowded pub were behind me, I would be lucky to even catch the eye of someone stood right beside me. The irony of ‘blind dating’ continued and she by this point was looking on her phone and discovered that there were dating sites just for disabled people. I made a joke of how a guide dog had a great pulling power, but how to train them to seak out single guys for blind people would take real indepth training…..

 

At this point I was aware of uncomfortable mummbles from the couple in the booth behind us. Me and my friend continued to speak about how a blind person would go about dating, when the ‘gentleman’ in the booth behind me turned around and commented, (these words have stayed with me….

“You really are being quite rude and insensitive, talking about poor blind people who can’t possible have as enjoyable and free life as you ((me))”

To which I was shocked, so I said all I could which was, “I beg your pardon?”

“Well, you two are sat her enjoying a nice leisurely breakfast, probably off to do some shopping laughing about those less fortunate than you who have a horrible disability and can’t even think of coming out for treats like this. Whilst you both sit here poking fun at them for not being able to date, you both have such freedom, people like you make me sick.”

At this point my blood was boiling and I’m sure my friend could sense this too, as she reached across the table and asked me if I wanted to leave, which no I did not.

I was not going to be accused of being insensitive, rude and worst of all being called a ‘poor blind person’.

 

I kept my cool (dog knows how!) and out came the sarcasm……

 

“I’m sorry sir if my ‘private’ conversation with my friend has upset and sickened you, I am so very sorry that you feel that ‘poor blind people’ don’t have such freedoms as to go out for a long breakfast or enjoy shopping. I am so very sorry that you feel that I was insulting those with horrible disabilities. I was in fact talking about myself and how ‘ironic’ it was to use the word ‘blind date’ you see because for me now that is what it would be, I am sorry for that.”

At this point he stood up and called over the waitress, he said “I can’t believe the nerve of you ((me)) now pretending to be blind, while you clearly aren’t to justify and make excuses for your terrible behaviour, I wish to be moved. (Directed at the waitress)”

I was close to tears at the point and the waitress was about to speak, the very same waitress that had seated me and my friend and made a fuss of Vicky before she had curled up under the table.

I myself now stood up and turned to the gentleman, a term I use very loosely as he was about the same age as me, and definite not gentle!

“It’s ok, no need for you to move, we were just finishing up and off to enjoy some carefree shopping, I will even go to the till to settle up my bill as to not upset you a moment further, if you would just be so kind as to give me a minute to get my guide dog in her harness?”

He sniggered at this, but he soon stopped when I woke up a sleeping Vicky and got her out from under the table….

In fact his face was so red with embarrassment, even I could see it!

 

I finished putting her harness on and walked toward the till. My friend was talking behind me to the man and his girlfriend, but At this point I just wanted to leave.

She came and joined me a moment later to tell me that on the girlfriends insistence her boyfriend would be paying our bill for us, he hadn’t spoken another word apparently, just stood there shocked and embarrassed.

My friend said that she had explained that I was clearly upset by his insults and assumptions of ‘poor blind people’ and that it was incredibly rude to earwig on others conversations.

His girlfriend was very apologetic, but still he said nothing.

As we left the restaurant, my friend said she could see through the window that his girlfriend was clearly shouting at him.

To be honest I didn’t care…. I was using every muscle in my body to stop me from breaking down in tears, I was so shaken by it that we didn’t go shopping, without a word spoken, we got in her car and we went straight to the nearest pub for a large whiskey (for me anyway)

We had been having such an enjoyable time and only a true friend would laugh with me while we spoke of blind dates and meeting someone new. She knew instantly that I had been upset by those cruel words, but that I wouldn’t scream and shout, but calmly and with sarcasm allow that horrid man to be left thinking about what he had said and done.

I am not a ‘poor blind person’ with a ‘horrible disability’, I am me Tee, with a visual impairment…. I have plenty of freedom to go shopping and enjoy long breakfasts with friends, I am also privileged to have such wonderful friends that won’t talk over me, but know me well enough to know that I am fully capable of speaking my own mind. Also just like on that day, also know when I need a stiff drink and a huge hug.

 

And to answer the question you may be thinking by now…. No, I haven’t and nor will I be signing up to an iNternet dating of any kind !!!

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09 Aug 2013
About Me • Blind Blog

Employment and support allowance

Having suffered with my employer and my depression caused by my continued battle with getting to grips with my deteriorating eye condition and having to learn to use a new form of accessible software that I didn’t feel ready for, I had been on long term sick leave since October 2012. In February this year, after a lot of thinking, adjustments and not very successful adjustments, I was let go from my position on medical grounds.

This did not in fact cause me any great upset, as I had come to the conclusion that my current role was not the one for me.

It was the thought of accepting my eye condition and applying for the government benefit, for people like me who are unable to work…. Employment and Support allowance, often referred to as ESA. Read more

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29 Jun 2013
Blind Blog • Days Out

Different views

When at a family wedding recently I realised that my children have a little more freedom than I thought I gave them.

let me explain….

As a VIP mum I often feel that I protect my children a little too much (is there such a thing?)  As I have mentioned before I have a 7 year old and a 3 year old, since my sight has noticeably deteriorated since 2008 when my daughter was just 2 years old I have continually question my own parenting and compared it to my friends.  for example, living in a bungalow I have a clear rule with my children regarding toys, I will tread carefully when walking in the kids rooms, but if they leave toys around the house they may be moved without warning or worse if trodden on, they risk being broken.  So my children learnt very quickly to be tidy with toys outside their rooms.

When walking between the church and reception venue in Hamble recently with my parents, I discovered that I actually have my children more freedom and trust than my mum had expected or could understand.

Working with a guide dog, we are trained together using voice and right hand signals to convey information, so I am limited to carrying or holding things in my right hand the majority of the time.  Resulting in my children learning to walk with or slightly in front of me without holding my hand, when crossing the road they will put their hand on my leg so that I know exactly where they are. Walking on a wide path by a busy road, my daughter was happily walking ahead with chatting with her cousin, my son was walking and skipping about 20 foot in front of us, my mum was continually asking him to walk with her and hold her hand.  He struggled with this and it didn’t last long before he got bored and ran off ahead a little.

My mum found this naughty behaviour (which I fully understand) but after me explaining that this was different to what he was used to she seemed to understand.  However, I feel that she found this difficult to understand eclectically as my sight is so poor.

The children do have rules when we are out like this, they do not cross roads without me, they do not walk around corners without me and if I feel they are walking off to far I will shout STOP and they are to stand still until I catch up with them.  To check the distance, we often make a game out of it on walking to the next lamppost or telegraph pole. as the reader, what do you think?

Am I too trusting of them? I would appreciate your feedback x

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28 Jun 2013
About Me

It sounded so simple…. Then you put me in the mix!

As well as blogging I keep up to date with friends and family via my Facebook account, the other day after what had started out as a fun conversation I put myself on the line and admitted to having been forced to admit that I had a limitation.

Yes…. I hear you all say, everyone does.  But this limitation wasn’t even something I had ever considered before, or even wanted to do.  And in the grand scheme of life is very unimportant and changes nothing.  But I started to bother me.

I thought the easiest way for you to see what I am talking about is to copy the post in below, including the comments.  As to protect the identity of my friends I have re-written the post and named them F1, F2 etc, etc.

I would be interested to follow on this conversation further, so feel free to comment yourself underneath on here.

THE STATUS:    An honest conversation with a trusted friend has made me realise that with my sight, there are some things I just won’t ever do….. Some I can get around, fudge through in a different way with help & support.  But today the realisation that there is something I won’t ever do, silly thing is that its only a small thing too…. But feeling 🙁

 

ME:  And it wasn’t even anything I though would bother me, it’s the realisation of limitation not the thing I can’t do.  Even my stubborn streak won’t get me through this one.

F1:  You will get through it hun!  Been there – spend some time wallowing in self pity and then equally important pick yourself up and get on with what you CAN do!

ME:  I know-its the kids, home, college, work is all that matters, but it’t limitations of not being able to do something so very simple for others——-even a small child can do it!

F1:  Yep!  Let yourself spend some time feeling sad, don’t try and ignore it.  Have a bath, get in you pj’s and bring out the chocolate!

F2:  If you don’t mind me asking, what is it?

ME:  Its very silly and ridiculous…….. Juggling!!!    Having looked after Miss Key the other evening while Mst Key & Simon Key did a juggling with scouts.  Mst Key came back telling how great it was & how his dad could teach anyone to do it, it never interested me, bit it set the challenge & the thinking cogs working.  So had a good talk about it & the answer was NO… I need to be able to follow the movement, although I do have some vision.  I have no ability to judge distance or quick movement.

Its not the juggling that is the issue, its the fact that it points out a limitation.  For example, I am not allowed to drive a car (legally) & have a driving license.  But  I can physically drive a car, on private property with the right support.  I know how to do it & can do it.  Its a silly thing, but its these little bits for me that stand out as a limitation.  That having discussed the options of making it accessible isn’t there, if I wish I could play blind football, blind cricket, if I so desired, silly isn’t it?

F2:  I don’t see why you can’t try??  Think of how much fun it would be.  Just make sure you use soft balls so not to knock anyone out though! 🙂  Nothing is impossible, we place on ourselves our own limitations so if you say you can’t then you won’t, if you say to hell with it I am going to have a go…. then you have got nothing to lose and if you prove yourself right they you can say hell at least I tried!!

F3:  I think the thing is that you have to have a base to start with.  If you know that it is something that might be nearly impossible to do before you start, then if you still want to try then you don’t set your hopes up too high.  The bonus is that i you did achieve it then it would make it all the more special. let me have a think, I’m sure Mst Key is right.  He tells me enough that he is 🙂

F2:  Nearly impossible! See not impossible at all 🙂

F3:  just have to be realistic.  Thats all I’m saying, what the hell, I have been learning 5 for 6 years !!!!

F2:  There is being realistic though and shattering poor Theresa’s juggling dreams.  I anyone can you can Mr Key 🙂 xx

ME:  Oh dear, what have I started?  It’s not the juggling that is the point here.

F3:  Well it kind of is and isn’t.  I think the point is that you wont know what you can and can’t do till you try……

F2:  Excellent!  I look forward to hearing your juggling tales Theresa and Mr Key.

ME:  It’s got taken all out of context, I don’t really want to juggle.  I hate the word ‘Can’t’ I know what you meant when you explained it, no it’s not impossible, bit it just highlights the fact that I can’t just grab a set of balls & get going.  You said yourself that you need to think about how!  It’s something highly skilled when you get to your level, but at the same time it’s very basic and simple at the start point.  And I can’t just get on and have a go.  This sees me start thinking & analysing other things I can do or can’t do & the spiral starts & thats why it was never about the actually juggling… Hence why I never put it in the start of this post!  I appreciate the support & kind words from you all.  I’m not as has been suggested (by pm) fishing for sympathy or compliments on what I can do or try.  I wrote this because it was how I was feeling & at that very same moment on looking at Facebook it just felt right to put into words, stop it just being in my head & driving me even more crazy!

F3:  Nope no taking it back now lol.

F2:  Nope, you can’t back out now.  Learn to juggle woman then you can pass your juggling wisdom to me 🙂

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It makes for this being a rather long blog, but I hope it gives you an idea of my thoughts.  Juggling isn’t the issue for me, its not even something like I said earlier that is of great interest.  It merely highlights that for me to do some things, I need to set myself up in a very different way than others.  Have to alter the way in which I do things.  My friends were being helpful with their comments, I am always open to constructive criticism.

I grew up not seeing myself differently to others, but now I do…… I feel so very different.

And this is the point.

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11 Jun 2013
About Me

Feeling Isolated, yet surrounded by others.

Although I am a VIP, I pride myself on being independent and when I am within environments that I know or at least understand I am able to achieve this.

But move me away from my comforts and I struggle. I have often linked asking for help and needing support as a weakness and laughed it of as me being silly not being able to do things because of my eye condition.

After all,  lazy, I don’t like to just sit back and get others to do things for me while I am able to do it for myself.

A recent bought of bad health has seen me admitted to hospital. Which I am sure you will agree without adding in my eye condition is quite a daunting and scary thing.

But starting with the travel in the ambulance to get here, to moving from emergency medicine, to medical assessment to the current ward, I am feeling very low and lost.

The ambulance crew were fantastic, very descriptive and explained what they were doing and even where we were on our journey especially when we were travelling down the corkscrew of a slip road off of the motorway, which whil laying down and travelling backwards felt like a roller coaster ride!

Emergency medicine was very busy and nurses and doctors were rushing everywhere, I was really looked after and treated brilliantly, every time a nurse came passed my bed they asked if I needed help to get to the bathroom as they were all aware of my sight or lack of it.

Following hospital guidelines on time etc ( the politics of the nhs) I was moved to a medical assessment unit for further looking at. The handover on this ward was detailed about my eye condition, but sadly not passed over clearly to the next staff that took over, so having buzzed for assistance to go to the bathroom I was advised that if I couldn’t walk I was to use a commode…. So I corrected them that I was able to walk, but couldn’t see, which she argued over as I wore glasses, surely I knew where the bathroom was (don’t worry, the compaint went straight in to the staff the next day and the bed allocator who spoke with me about my preferences before I moved to the ward I am on now)

The porter that took me between the two wards was unaware and grumpy that she had been apparently stood by the side of my bed being ignored for 5 minutes, so she got a firm explanation of my eye condition and how it was polite to make people aware of her presence!

The ward I am on now was not able to accommodate me in, but I was given the next best thing. The ward I Amon with just 3 other ladies has a bathroom directly opposite me. The layout of the room was thoroughly explained as was the location of the bathroom, the rails and most importantly the help call buttons.

The odd slip up with cleaners moving my table or my glass from one end to the other has occurred, but the ladies on my ward have helped greatly, although immobile they have always explained the new location of the table or the glass perfectly. Just this morning they advised me of a wet floor sign just at the side of my bed that I would have kicked into.

Hospitals are not my favourite place and I know how busy the staff are, so hate to feel that I am making a nuisance of myself when taking up their time with silly little things.

The reaso sharing this with you is because, just this morning I had a great chat with the nurse. I explained my condition, my worries and had a really good chat, she then helped me sort out my clothes within the locker so I would find things easier. She briefed her staff about me and even got one of the assistants to help me plait my hair to cheer me up. She told me that all of the things I needed, whether that was medication or being told where food was on my plate wa all part of my care, nothing silly, nothing was because I was being stupid. She said that she would expect everyone on the ward to receive the care that they required with all of their needs, not just the medical issue that had bought them into hospital.

I sometimes need reminding of that. Just because I see my disability as a failing on my independence, others don’t and they would be failing within the job they were assigned to do if they did.

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