Tag Archives: Vision Impaired

Feeling Mentally Exhausted :(

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It’s really hard and very depressing when you can’t do the hobbies that you love due to ill health.  In my case my ill health is vision loss and chronic eye pain.

My vision has got significantly worse over the last several months and I have had to stop colouring. I love colouring, when you are in the moment it is very relaxing, I have some beautiful books and it gives me a lot of pleasure.  I can live with giving up colouring for now I will get back to it after my corneal transplants.

What I am finding really difficult is struggling to read.  Reading means everything to me; I constantly have a book on the go. I get so much pleasure from reading.  I used to have no trouble reading on my kindle but now I struggle to read even on the biggest font.  It just looks so washed out and pale that I am having a lot of trouble reading the words on the screen.

Reading a real book isn’t an option, can’t see them either.

I have found that in the kindle app on my phone the black background with white text is pretty good if I use a big font. It’s still fuzzy but at least I can read it if I wear magnifying reading glasses over my contact lenses.  It’s not ideal on the phone as when you have a big font you are turning the page constantly as you don’t get many lines on the page.  It’s good for reading in bed though, the big tablet isn’t great for that.  My solution: – I have ordered a 7” tablet, should be good for reading in bed and on the go such as hospital waiting rooms and I can have a decent size font on it.

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This is ridiculous right?  At least I can read which makes me really happy  🙂

Being unable to read really makes me realise how blind I actually am, it’s scary and it worries me a lot that one day I will go fully blind before they can figure this thing out.  My corneas are diseased, worn out, full of scars and have a lot of blood vessels that shouldn’t be there.

It’s not just hobbies that are getting impossible, generally day to day life is a struggle.  I fell over a couple of weeks ago because I didn’t see a step, I really hurt myself.  Nothing broken fortunately but it could have been a whole lot worse.  Work is a daily struggle to see my computer screen, every day I have a monster headache from straining to see.

There is no way that I can afford to give up work so I have to try and battle through the headaches, eye pain and low vision and try to do the best I can every day.  I think I do ok, I hardly ever take a sick day but boy my days are hard.  No wonder I am always mentally exhausted.

The only thing that is going to help with the vision are corneal transplants, I am hoping that my doctor will schedule me in for the left eye (my worst eye) within the next 3 months.  I need this so badly.  I am also starting a new Infliximab infusion next week which I hope will help with the inflammation and eye pain.  I am having infusions at week 0, 2, 4, 6, 8 & 12 as a trial and if that is successful I will have them every 8 weeks going forward.

Keep your fingers crossed for me!

 

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Corneal Transplant for Keratoconus

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Finally for the first time in over 2 years I am pain free from scleritis (eye pain).  That is amazing and down to the Cyclophosphamide I started taking about 4 weeks ago.  The first week I felt terrible, really nauseas then I came good and felt great for a couple of weeks.  I was thinking this is brilliant, then in week 4 I am getting light headed, dizziness and fatigue.  It’s worth it not to have that awful horrendous eye pain!

Assuming my bloods are ok when I go back to the rheumatologist in 3 weeks I can move on and start thinking about my corneal transplants and where I need to be to be able to have my surgery.  I have severe corneal neovascularisation, the vessels I have are big and deep and there are plenty of them.  They are not ghost vessels either, they are still active and blood filled.  I can’t have my surgery whilst they are active as the graft would reject.  In my doctors words “it would be a disaster”.  One positive thing, in my eye check-up last week my doctor felt like there were less vessels in the right eye and maybe the Cyclophosphamide has got rid of some already.  I hope so that would be amazing.

I had two wishes, 1 was to get rid of the pain – check! and 2 was to be able to see properly.  So I am halfway there!  Point 2 is going to be harder to achieve, every time I see my eye doctor I’m like can I get my graft yet and always the answer is no.  Hopefully one day soon I will get a yes.  I am so desperate to improve my vision, I really struggle in particular at work reading my computer screen.  Some days are really awful and I can hardly see a thing.

I know having a graft doesn’t automatically guarantee good vision but it’s surely got to be better than looking through a forest of blood vessels, even if I have to wear a lens on it I will be ecstatic.

Keeping my fingers crossed that next time I get a check up even more vessels have melted away.