Image is of snow-capped peaks with the sky red behind them as the sun is setting.

August 1st, 2019

Changes (part 4)

Final in a series of blog post written by Lynne Morris… 

I have been back to the hospital many times since diagnosis. In 2010, I had to have cataract surgery for both eyes.  Not at the same time obviously!

I was the youngest patient, when I went for the first eye.  I was so nervous and scared.  I ended up having a higher dose of sedative which I didn’t realise would knock me out.  I was very grateful, as I really did not want to see them advancing on me!  It was a strange experience leaving the hospital, I had one eye covered up and needed assistance to walk as I really couldn’t see well with one eye.  When I removed the eye patch the next day, it was absolutely amazing to be able to see pretty clearly out of that eye.  After being short sighted for years and not being able to see without glasses, it was like a miracle.  However, it left me unable to read until I had the next eye done.  I’d had to remove the lens from my glasses.

I went back for the second eye about three months later, and asked for the same again please!  This time I was not quite knocked out before they clamped my eye open.  Holy hell! Panic stations, thankfully darkness took me.

I was now able to see very well without glasses, gone was the blurred vision but I still needed a little help for distance.  The biggest change was, I needed varifocal lenses as I was unable to read without the help of a reading prescription.

I had also been diagnosed with Macular Edema which is fluid build-up in the back of the eye, putting pressure on the lens causing vision to be blurry.  This condition fluctuates and treatment via medication hasn’t really worked, the operation they can do for it has a very difficult recovery process and is not guaranteed.

I also had to go for laser treatment on my right eye because my vision was clouding up again.  This is apparently quite common after cataract surgery, it can happen at any time.  The laser was used to cut holes in the layer of membrane that had grown over the lens

My latest trip back to the hospital was just over eleven years since diagnosis and it was to determine if my left eye was fit enough to undergo laser, as I had been on medication to treat Macular Edema.  Once again on my way to the appointment up the coast, I was reliving the day of diagnosis and felt like I was in a bad dream.  It was snowing again, nowhere near as badly as that original day.  I just couldn’t shake a really uneasy feeling and I just wanted to turn around and go home.  I felt queasy about the whole situation.

I got to the hospital, my name was called, and I headed into the nurse’s room – yep it was that time again.  Those drops don’t get any easier, in fact I’m sure they get more and more potent each time.  Once I was over the ‘smarting’ I made my way back to the waiting area.  You do get a very numb bum at these appointments, they can take up to four hours!  I was then called and taken to have photographs taken of the back of the eyes to determine the fluid levels, if the Macular Edema was too severe they would not go ahead with laser.  This involved being sat in a chair with my chin and head resting on the bars. I was instructed to look straight ahead at a bright blue light in a camera lens, while the nurse got the camera in the correct position and took the picture/scan.  A bright red line ran from top to bottom and the machine beeped as it went.  The process was then repeated on the other eye.

I headed back to the waiting area, I was lucky, I had my friend with me to pass time but also, due to being hard of hearing, and a lot of consultants having foreign accents, they can be very hard to understand.  I generally always have someone in with me as a second pair of eyes and ears.

I finally got called in to see the consultant and he was obviously rushed as he was speaking really fast and it felt like he wasn’t in the room.  I’m not a person I’m just another set of eyes with a problem.  He was more interested in getting me out of the room to see the next set of eyes.  I kept looking at my friend to see if she felt like I did and it was apparent when we made eye contact she was not impressed!  The consultant had a look in my eyes and said he didn’t see the need for laser as he couldn’t see anything that needed clearing.  I had been waiting for months to have this sorted, everything was pinned on that eye being fixed and I was really hoping it would be done.  I felt totally deflated.

I was totally confused and at a loss.

“If you’re unable to see anything that needs treating, then why is my eye like this? Why have I been coming back and to for the last few months?  If nothing is going to be done?  I just don’t understand,” I said.

I felt myself getting annoyed and I wanted to cry, I was so disappointed.  I wanted to scream at him to treat me like a person, to have some thought about my feelings.  I was not a lab rat or simply a problem to be eradicated by the fastest method.  I needed comfort and delicate handling.

He then decided to turn his back to me and to face the window whilst talking.  I couldn’t hear him, so my friend piped up.

“She can’t hear you, she’s deaf, you must face her,” she said.

I partly wanted to giggle because it was said so sharply and I wasn’t expecting it, but I was really trying not to fall apart.  I have a tendency to laugh or giggle when I’m scared or nervous.  He was explaining how a lens worked like I didn’t already know, and he was trying to use the window to explain it to me.

I asked him again, “Why is my strongest, the best eye I have, the way it is?  It’s like there’s a smudge in my central vision.  It’s my reading eye, I depend a lot on it.  I am up a creek without a paddle here.  I’m in no man’s land.”

He looked slightly confused and just said, “It is part of the condition.  I don’t recommend surgery as I don’t believe it will help you. Stay as you are. There isn’t any more that can be done for you right now. “

I was completely stunned.  I had absolutely no idea of what to say or how to react.  It had gone quiet in the office.  I’m sure it was written all over my face.

He couldn’t wait for me to leave the office.  I felt so lost, bereft, once again a kicked puppy.

“Well, I don’t know,” I kept saying over and over.

My mind was just completely blank. I just felt robbed and cheated again.

We went for a cuppa and cremated tea cake while we tried to absorb what had just taken place.  I’m still not sure I have.

**********

Through all the highs and lows, I’ve had the support of my close friends and family.

My parents and my best friend have supported me as best they can.  They have listened to me when I sounded like a broken record.  Given me a swift kick or two up the backside when I was being utterly daft about things.  I honestly don’t know where I’d be if it wasn’t for their support.  Though it was very difficult for them to completely understand, as they weren’t walking in my shoes.

The one person who had stuck by me that I didn’t expect, yep, you guessed it – the boyfriend.  He said no matter what he was going to be there with me.  He would face all the bridges I had to cross.  I still don’t believe him now and we’ve been together 14 years.  I gave him my car when I handed my licence in because I couldn’t bear to part with it.  Plus, it was a much better car than what he had at the time!  Believe me, he’s not been a saint either but amazingly we have stuck together through it all.

Aged 35, we are now married, we have two beautiful boys.  I am currently battling depression and anxiety, after years of putting on a front and saying I was fine, when I wasn’t.

I would get up do all the necessary things to get the day ready and go to work.  I only worked part time but even my four and half hour shift took it right out of me.  I’d be so mentally exhausted from all the concentration, moving around, thinking ahead of where I needed to go and trying to guess what others were doing around me that by the time I got home, I was a zombie with a fat headache and a foul temper.

It all came to a head last year, I just couldn’t carry on.  I didn’t want to exist anymore.  I was so tired of repeating myself to colleagues, new managers trying to explain to people who really didn’t care, why I was like I was and why I needed help.  My problems were my own and no one else’s it seemed.   This was no life, to have to constantly fight to stay ‘normal’, to run in the rat race alongside everyone else.  I was so tired in myself, so tired of the external and internal battle. I hated myself so much.  I dreaded getting up every day to face the same old stuff, just a different day.  I loathed to look at myself in the mirror.  I despised what I saw and had become.  I was not anywhere near the person I used to be.  I was not the person I wanted to be.

So, I grabbed the bull horns again and went to see my GP.  I was diagnosed with severe depression with anxiety, signed off work put on antidepressants and sent for counselling.  I had pushed myself as far as I could go before I broke.  Even getting that diagnosis had required me to see the right type of GP.  The first one I saw told me I smiled and giggled far too much to be suffering depression!  He made me feel like a fraud.

A saviour for me was Facebook.  There are lots of groups on there, all over the world, with people suffering the same condition.  It really helped to talk to someone who truly understood, you could share stories of how you got your latest bruise and you were there for each other to help on the bad days when it all feels like you’re flogging a dead horse.

I recently met some fellow Usher sufferers in the flesh!  There was a photo of us all one from Ireland, one from Scotland, one from England and another from Wales!  It was truly amazing to be a part of such a key moment to have all four of us in one photo!  I hope as my confidence improves and my self-esteem returns to meet many more like me.

**********

This is a road I never wanted to take, however, it is one I must face in order to find myself again.   I now walk through my own tunnel looking for the light at the end.  I’ve done this for myself and my boys who really didn’t deserve the treatment they got off zombie mum.

If only I could wake up tomorrow and everything be hunky dory instead of it being this road.  I am now taking it day by day, feeling much closer to my boys and more of a mum than I ever have.  I am grateful for what I have and I intend to carry on and try and make the most of it.

When you suffer sensory loss, your remaining senses are intensified.  I use the sense of touch with my hands and feet to help me especially around the house.   My sense of smell is a gift and a curse at times.  I used to freak my best friend out at work because I’d go somewhere in the building and I knew she’d been there because I could smell her perfume.  I didn’t know someone was near me until I felt them go past with the draught they caused as they passed or I smelt them!

I feel I appreciate the little things such as a sunrise, sunset, glimpse of animals you don’t see often and stunning views a lot more now.

The smell of flowers, fresh cut grass, even the wetness after the rain.  I am trying to soak it all in.

My colour vision is not the best now and I am unable to do any fine detail work.  I can only see what is directly in front of me, I’m not the best at facial recognition unless you’re in the right light and at the right distance.  I struggle to detect where sounds are coming from.  I hate night time, being alone; my imagination runs riot!

I’ve become a recluse of sorts.  It is so much easier to stay at home in my own environment.  I hate depending on others, asking for help, I feel like such a burden that I absolutely loathe myself.  I struggle out in groups and noisy environments.  As much as people say they’ll help me, stay by me, look after me, everyone forgets time to time, and that is when it really hits home for me.  The only way I can describe the feelings is I am stood on an island all alone with the tide coming in fast, no way out it’s sink or swim.  I don’t swim all that well!

I do have help to get out and about to try and gain my confidence, settle my anxiety and keep up to date with my cane skills.  A wonderful friend decided she wanted to help, so she became part of a service that Guide Dogs provide called My Guide to give those with sight impairment a chance to go out, especially if they either can’t have a guide dog or are waiting for one.  She arranges to go out with me and has been for the necessary training in order to think how I do, about obstacles, footways, doorways etc.  It really helps.  We have been going to the gym.  That was so scary when we first started.  Now I know what to expect but I still haven’t built up the confidence to go alone, although, I suffer a little laziness when it comes to exercise!

When I am better, and more sure of myself, I want to help others who are just starting out and discovering all the changes they’ve yet to face.  I want to reassure them they are not alone and that we can live fulfilling lives, you just have to get crafty and adapt.  Plus, don’t shut yourself away or attempt to pretend and ignore issues.  There is a lot of help and support, it won’t come and find you and it isn’t obvious.  You have to face all your issues head on and ask the questions.  Otherwise you will forever remain on your desert island alone.

I like to take photographs.  I adore reading for escapism and I’m so grateful to technology these days, it enables me to carry on reading.  I am making memories and savouring every moment in case one day the lights go out… one way or another!

We would welcome, and love, any new blog posts on any topic if it’s Usher related in some way! Send us one today to contact@cureusher.org with ‘Blog’ in the subject line. 

 




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