Archive for 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 🙂

_____________________________________________________________

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.

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.

Another ending

My condition is such that it often alters very little over time, so on a daily basis I may not notice any difference from the day or week before.  But when I go to do something that I did some time ago, that it when I notice it.

This recognition that something has changed, often hits me like a smack in the mouth!

When I started working for my employer in 2011 I had been using my home computer and work computer on a much lower level.  By this I mean that in my previous role my work was split up between dealing with clients, the computer and general office work.

The new position was all computer based and telephone connection with clients.  No more face to face contact.  Isolating yes, but this meant that I could work from home in the evenings after the homework was done.

Working from full spreadsheets I started to notice problems, through a scheme ran by the government called ‘access to work’ I was able to apply for a grant for adaptions to my computer, this included zoom text software to magnify the screen and allow me to move around the page with ease, this worked well.

But like all companies, the software and processes that they used changed.  I moved from a spreadsheet to an up to the minute online calling system, all the information was there in front of me, the computer also did an automatic dial to the client.

The new system was a struggle.

 

I work very well with order and sequence, with the new system this wasn’t always the case depending on the needs of the client.  This was not a design fault of the system the company used.  It was an issue I had due to my sight loss.  The programme was very simplistic and easy to use, were you able to see it all on one screen, which with the magnification, I couldn’t.

Work were more than happy to offer support and to aid me with my work I was able to work at a reduced rate without financially missing out while I went through a transition phase working with the new system.

It was in this period that I began to struggle personally with my sight loss and its implications, as a person who has a very strong work ethic I felt that I was letting myself and the company down.

It took months to actually admit this, during which time I struggled on.  It was at my breaking point in June 2012 that I admitted my struggles to my doctor, who was very kind, understanding and started to work with me to get the help and support that I required.

I also contacted my employers accessibility team and explained my issues, they made an assessment and felt that moving away from magnification and moving to a screen reading technology would be better for me.  So back to ATW I went with my report and all of my needs, including a brailliant (a computerised braille reader) I was able to start on the road to doing my job in a different, new and exciting way.

In theory anyway……..

Because of the way in which screen readers read a page on the computer and the layout of the software used, the two were not compatible.  An issue that was not of great concern for me as I was to move back to working with the spreadsheets, a preference of mine.  They included more data so that I was not disadvantaged over my colleagues.

But I broke.

I have been using a Mac for a long time and using the built in accessibility and with the help of my voice Lily, I have got on very well with it when I have needed it.

Having some useable sight I struggled to let go of that completely and with that I developed an eye strain that had a great affect on my levels of concentration for which I need to take eye drops on almost an hourly basis if I am using the computer or even watching tv or a film.

In October I took the step to visit my doctor again and explain these issues, she felt that it was important for me to understand my depression and how to deal with this and in turn my altering eye condition.  So she made an alteration to medications and put me forward for counselling.  Oh, and she signed me ‘unfit to work’

Having undertaken many changes in my life, some positive, some not so  I attended a final stage sickness review with my employer, and on Monday my contract with them was terminated on medical grounds.

I had always hoped to return to work, but this position was one, that even with assistive technology and support I would not be capable of, not through lack of knowledge or an imcompetance, just through circumstance.

This I think is a decision and understanding I had come to by myself long before the meeting, after all to get to stage three, I had been through stages 1 and 2, an in-depth report from my own doctor and an independent medical assessment.

It is heartbreaking to say goodbye to this job, today was the final ending as my ,ine manager collected all 6 boxes of computers, technologies and the hub that they had installed on the start of my employment.

This equipment has been boxed up for a few months to save it from the kids and dust, but the space it has left caused a tear or two.

I see this a defeat, I HATE to fail, to let people down.  To let myself down.  It is always hard for anyone to walk away from something when it is not working.  But hopefully this is one stress crossed of the list and will enable me to move forward.

Wish me luck.

 

Playground Whispers

When I was younger and at school myself I had my fair share of taunts in the playground, but as an adult with two children of my own I did not expect tobe subjected to such hurt yet again.

i am (or try to be) a strong women, but yesterday when taking my daughter to school it took ever ounce of courage to stand in the playground an wait until she had gone into her classroom.

As a mum with two children to get up and dressed in the morning, a dog to feed and walk before the school run, I am lucky if I get to grab a quick shower and a coffee, so I am dressed, presentable and my children are ready for the day ahead.

I have never been one to wear makeup on a daily basis, a dab of Vaseline on my lips is as good as it gets.  That is just part of who I am, it has nothing to do with my eye condition.

But apparently it has a much greater bearing on my life and my capabilities as a mum than I had ever imagined.

My inability to see the importance of wearing makeup lead to me being hurt and upset by two women who should only be described as playground bullies.

Because what I lack in sight I more than make up for in hearing.

Within my earshot they stood chatting about “my poor children” “the state my house must be in” ” no wonder my partner isn’t with me anymore” ” what must it be like to have sex, with someone like that” (me that is)

Even writing this post I find the tears welling up again.  I am me, a person, sight loss or no sight loss I have feelings and comments like this hurt, the most painful is my ability to look after my children.

I’m not a perfect parent, I don’t think such a thing exists, but I am a bloody good one.  This isn’t just my opinion, this is also the opinion of family, friends and teaching professionals that have all come into contact with me and my children.

My children are and always will be my first priority, now you see I am feeling that I need to justify myself, because of these comments.

i don’t is the simple answer.

Being a VIP means that I often do things in a different way to others and it is with this blog that I hope to explain this to others.

My reasoning for telling you about this incident is to make you aware that little off hand comments said like this can cause great upset and hurt, even questioning a persons abilities and it doesn’t stop when you finish school, it continues throughout life.

I walked home from the school grounds in tears, then spent hours questioning myself, none of which I needed to do, but I did.

St George’s Day sewing marathon

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) where were all of her badges that still needed sewing on? (all of them in fact!)

2) how the hell was I going to actually sew them on to her T-shirt?

As a child I learnt to sew in home economics, I even made a pencil case with my name stitched on it with flowers, but that was in my ‘days with sight’ era.  Not now.

Being an ever resourceful mum, I do have a full sewing box, with pins, every colour of thread imaginable and even spare buttons, hence to say its content was completely undisturbed.

 

First to thread the needle…

It took several attempts to even get the end with the eye in it, I’m glad to say my fingers are quite thick skinned as they sustained a few injuries this evening.  My kit actually came with a funning looking needle threader, but that just confused me.  So I doubled the length of thread, triple knotted the loose ends and proceeded to spend the next 14 minutes to get it on the needle, a good bit of spit and I was ready to go.

Placing the badges…

Anyone who knows me will confirm that when I do things, I pride myself that they are done right, so the next 24 minutes were spent arranging the badges, lining them up, putting them into a vague remembered date order and pinning them in

Let the sewing begin….

The first stitch was nerve wrecking, but thankfully the badges were very good quality and had a lovely thick raised edge, so once I started, I stopped having to look and was able to slowly and steadily sew the first badge in place, purely by feeling the edging of the badge itself.

I was off…… It was great to feel a real sense of achievement tiling this, with only a few hiccups, like sewing on a badge before Realising I had pinned it upside down!

My sewing effort is by no means perfect, but it is done.  My daughter can now wear her Rainbows uniform tomorrow with pride and be able to share each of her badge achievements with her class mates.

Ok, so she won’t understand the blood, tears and expletives that went into it.

But I will, and that matters.

 

 

Rock Bottom

Having thrown myself into everything and anything, I began to freakish that my time was being overtaken by my need to help others, and the reason I was helping others was to stop me thinking about my problems and my issues that I was having with understanding and coming to terms with my own condition and sight loss.

The catalyst for this came when I began to find out that magnification on my computer was not enough to help me at work, it was time to move on to a screen reading piece of software.  This is a wonderful technology, using hot keys you move around a document reading your way around each page instead of seeing it.

 

For me, this was just a nail in the coffin to confirm that I was different and couldn’t just get by like I always had in the past…….. Still now almost a year later after it was suggested to me, I can’t bring myself to do it.

I am a MAC user at home, you name it, I got it…. Mac Book Pro, Ipad, Ipod, Iphone…. Me and Siri have a love hate relationship at times and a my friends are now getting used to reading between the lines in my messages.

 

But for me, screen reading is a major hurdle and because of this, I have not been at work since October and my future in my role is now in question.

Its not the learning something new part that I struggle with, I have learnt brailleIts so much more than that….. its letting go of using my eyes so much.

Its Hard.  It has led me into a world of depression and feelings of loneliness.

 

Writing about this is very painful, so bear with me please…..

Now however I feel that I have hit my rock bottom.  So for now I’m learning to climb.  And to not fear, but instead accept help when it is offered.

That is the hardest part, being strong, independent, yet allowing myself to ask for help and not seeing myself as a failure for doing so

Burying my head in the sand.

As you have probably worked out by now, receiving the news that you have an eye condition that will only get worse and could result in you loosing all of it in time wasn’t the best news!

 

when I was first diagnosed I researched my condition and looked for the positives…. Or ‘perks’ as I know refer to them.  As silly as it sounds, I had to find some good out of this bad situation.

I received lots of help from my consultant, social worker and good friends.  This was when I discovered just how many VIPs there actually are in Fareham and support groups to help… So I started volunteering, first at an active group called FAAB and was soon followed by volunteering for a local club that ran under the umbrella of the Hampshire based charity Open Sight.

Disability issues and sight loss became my world for a few years, I threw myself into volunteering and in an odd way helping others with their sight issues shelled me.  but I began to feel that I needed to spend more time on myself and my family.  I do still volunteer and enjoy helping out, just a little less than I did.

When I stopped helping others, I realised  just how much my own sight condition did actually upset me, and this was when I fell apart.

This was when I started to really understand my sight loss and me……. To put this post into perspective…… Despite my registration being in 2008, this has only just happened for me!

 

Monkeying Around is the Bizness

Having 2 children who are always on the go makes life very interesting and active.  Being a VIP adds extra challenges to day-to-day life, but I have always tried to not allow this to impact too heavily on my little ones and allowed them the same freedom and adventures as others their age.

The fact that for now the 4 year age gap doesn’t stop them playing together is a great help!

i am a great believer that children shouldn’t just sit infront of the tv, but play out in the garden, run and get messy in the rain.  That’s why I bought a good washing machine.

In the wetter winter, spring and occasional summer days the great outdoors is nice and grey and makes it an enjoyable place to be with the children.  But in the summer months or when there is snow I struggle.

This is when I utilise the annual passes that the kids have for Monkey Bizness, an indoor play centre with large climbing frames, soft play, slides. Where pretty much everything is covered in foam and is brightly coloured.

This to me is heaven!

i can run around with the kids, having knocked myself out or bumped myself a few times, but not having to worry about the sun getting in the way of seeing them.image

They are within a secure area, which they need a member of staff to let them out of, they aren’t being burned or damaged by the sun’s rays and I know that even I can play with them too, if the mood takes me.

It is a place where the children are dressed in bright colours, to try and help, but this doesn’t always work.  We do however have a base point that the children know they can come back to me, if they are upset or in need of a drink.

As seen above, I also love joining in the fun, and monkeying around with them too.

Missing the Obvious

I often feel silly and clumsy as I am totally and utterly able to miss the obvious.  My condition is such that my field of vision is reduced and then what is left in the reduced bit is incredibly short-sighted.  if I’m not focused on anything I can see a lot-or rather my brain tells me that that is the case.  But as movement into the mix and I actually see very little.

This is me, there is no hiding the fact, but it does mean that when looking at a bigger view I can miss the obvious because I’m focussing on the wrong part of it.

I can often miss someone or something right in front of me, often a friend or family member waving.  I can also be blinded by too much information and not see anything even though technically I can see it all.  This is where my brain and memory comes in..

But then that’s for another blog!

I am a person!

I admit it, yes I have a disability…. But that is not all of me !!

As both a VIP (visually Impaired person) and GD (guide dog) owner the following scenario often happens:-

strangers stop you in the street and ask you if you know their friend/brother/daughter cousin. When you say no. You are often met with “oh, but their just like you.”

VIPs and GD owners don’t have a telepathic wave, just as wheelchair users or civil engineers or athletes don’t know everyone with the same condition or job as them.

I am me, an average height, bouncy (currently blonde) individual who also just happens to have a visual impairment.

I just try to follow this misconception when I was first registered.  I thought that as a VIP I would have the same interests as other VIPs, so I threw myself into ‘Blind clubs’ and charity work and I have to say that what I discovered shocked me a little.  The groups had helpful information, but on occasions things were not so pretty.  At times there were some very negative discussions, about how other disabilities weren’t as devastating as sight loss, yet got more recognition lot more help.

I think that this is a very short sighted (pun intended) view.  But by definition a disability Is a condition that puts person at a disadvantage physically, mentally, cognitively or sensory to others.

I’m not saying that because you have a disability you should be more understanding of others, but to fight one disability off against another is just like going back to the days of segregation where you only ‘mixed’ with your own kind.

a person is just that, they are defined by their personality, not by their disability. It is just a small the my of them, like the colour of their eyes, which hand they write with and fundamentally just like these other traits is part of a genetic makeup.  And outside their control.

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