Tag Archive for Depression

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.

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!

 

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