There is hope after all!!

[holmes]

I had a partial thickness graft 6 weeks ago. I have followed all of the instructions to the letter and the graft is looking good so far (fingers crossed!). I had another follow up appointment this week and I was shocked and stunned when I could actually see 2 out of the 5 letters on the top line of the snellen chart (this is something I haven't been able to do for 20 years!!). My vision is still blurry and distorted but it has given me the hope that things may improve with time. I have never expected to have good vision but any improvement is a miracle!

I am back at work on phased return and am struggling to manage, I suffer with a lot of headaches if I try to focus for any length of time. The time off work after the graft has made me face the reality that I can't manage my job anymore, I work in diagnostics so it involves a lot of paperwork and fine detail work. I am now ready to consider my options and re-train in something that is a bit easier on the eyes. I am reluctant to give up work all together (not an option financially!). I think that I need to stop pretending that everything is ok and make life a lot easier for myself! I have never let KC rule my life and stop me from doing anything, I just need to concentrate more on my abilities and stop fighting my disability!

Anyone who has just been diagnosed with this condition and is reading this, I would like you to know that the diagnosis can make you feel like your world has ended and there is no hope, but don't give up. I was diagnosed at 12 years old, since then I have studied for GCSE's, A-level's and completed an honours degree, I have also had careers for 19 years in the scientific and medical fields. So don't give up hope, just take each day as it comes!

Suzanne

[longhoc]

Hi Suzanne

Your post really was very profound for me, because I too have had some not-easy choices to make with regards work. In my case, starting at a screen all day crunching numbers on spread sheets has the same sort of effects as your field of employment. I can imagine how demanding the diagnostics career is, at least in my job there's merely (!) a financial impact if I miss something. I guess you're so conscious that if you make a mistake, someone could be impacted adversely. Working with Keratoconus when you have a job needing visual acuity is often I've found like trying to ski with a broken leg -- difficult and painful !

And yes, I agree wholeheartedly that you have to start living life on life's terms with regards to disability.

But you're getting excellent results from your graft, so as you rightly say, you've real cause for optimism.

So what to do regarding your career is not an easy matter to decide. It could be that with some Reasonable Adjustments, including less cases to review, you might be able to manage just fine. Have you engaged your employer's HR team or Occupational Health specialists ? They might surprise you in terms of what they will consider. And we do have, luckily, some very good Equality laws (and laws they are, not optional if-they-feel-like-it gestures) which most enlightened employers recognise. Maybe let a little time go by before making an irrevocable decision and find out what is feasible if you don't want to give up a job you enjoy.

Your positive approach is bound to succeed though, so good luck in whatever you opt for in the future.

Best wishes

Chris

[holmes]

Hi Chris

Thank you for your supportive reply to my post, it is nice to talk to someone who understands! Unfortunately I have already been through the occ health department and had several meetings with my manager over the past couple of years regarding my workload, I do not have an elightened manager. I have given them copies of all the factsheets on this site and other relevant information but they still seem to be blinkered. Unfortunately they talk a good talk but when it comes to putting support into practice it doesn't happen! I have got to the point where I am fed up with banging my head against a brick wall, I need to take action myself and move on! I do find it hard to accept that an NHS employer cannot give the very little bit of help that I need to manage, you would hope that they understand more than any other employer would! The high point of the occ health visit was when they suggest I got fitted with some glasses and give up on the contact lenses (if only it was that simple!!).

I have resigned myself to the fact that changes need to be made and it is up to me to put them in action. I'm ready to move on!

Thank you
Suzanne

[GarethB]

Failure to make reasonable adjustments can amount to constructive dismissal as far as I am aware, plus if your GP diagnoses you with stress, this for example could be the result of doing your normal work activities soon after a corneal transplant. So you have more recovery time, this also means that when you go back to work, your employers are duty bound to address the work related factors that lead to your time off with stress. Again as far as I am aware this can amount to constructive dismissal, but if you were to be signed off through stress again you would be entitled to compensation. A visit to the cizizens advice would probably help clarify things further.

Unfortuantly most employers think we recoer from operations within weeks which may be the case for many operations, but a graft takes about 12 months which is why my micor-biology degree was started registered blind, but I did the practical assessments where fine detail was needed the following year, so once recovered there is the possibility you can do your work as normal, it is just getting you through that period. This is a suggestion I put to my University and a philosophy I apply to people that have worked for me in the past, by all means come to me with a problem, but it is easier for me to help if the person with the problem has a few suggestions on how to resolve them.

Although my grafts pre-date me becoming employed, my employers were more conciderate when I had KC return to one grafted eye and through the adjustments, basically I outlined the problem, but did make it very clear what I could do of my normal lab work and what adjustments were needed which for data checking was for me to copy technical notebooks to the size I could read and a larger monitor to see the spreadsheets easier plus additional time. This meant that 30% of my normal activities were retained and the rest of my time was taken with trying new jobs that I would never of thought doing before. This lasted for about 6 months before I got my vision sorted and could start working in the laboratory again. As a result of being forced to try something new has actually worked to my advantage because I was able to demonstrate that I was more than a la rat, I cold adapt to new challenges, all of which lead to a promotion and since then a change of jobs within the company so I now work in Europe.

Your last comment regarding the Occc Health comment on getting glasses actually demonstrates although having been provided with the information they either have put it to one side and ignored it or completly failed to understand the contents, you could make an appointment and go step by step through it and expalin child like why their statement is wrong and which many of us would find offensive.

In the first instance suggest changes that could be made to help your current situation with your employers.

[holmes]

Hello

Just a quick update on how things are going! My graft is healing very well and the consultant is very pleased with the progress so far. Work has been a different matter unfortunately . I have been suffering a lot with eyestrain due to incresing workloads and very little active support.

On a more positive note I have just been offered a new job in a school. I will be working as a science technician in a school, with better hours and a lot less fine detail work. I am very happy as this is a job that I have done before and loved it, and I know I will be able to manage my condition much easier and do the job well with very little adjustment. I will be starting in 4 weeks time so I can make a fresh start for the new year. I am relieved that I will be able to take control back and keep improving as the time passes.

I find it very dissapointing that an NHS employer can be so unsupportive of a medical condition, I would have hoped that they would have been a little bit more understanding!! Anyway everything will be positive from me from now on!!

Keep Smiling
Suzanne

[Anne Klepacz]

Hi Suzanne,
It's great to hear that your graft continues to do well.
Sadly, you're not alone in finding the NHS a less than sympathetic employer though you'd think they would show more understanding than most! But it sounds to me it's their loss, not yours. Many congratulations on your new job and on your wonderfully positive attitude. All the very best for the new year.
Anne

[holmes]

Thank you, I am looking forward to a new start after Christmas. I am looking forward to proving that I am still capable of doing my job well. Life is going to be a lot easier from now on!!

Suzanne

[holmes]

Just a quick update on the graft recovery. I have had the first 2 stitches taken out today (8 months post graft). There was a severe astigmatism on the topography results so the have taken a couple of stitches out to try to improve the vision. It feels a bit sore now but my close-up vision has improved a lot already, I can actually read normal print (without correction) for the first time in about 20 years! My distance vision is still very poor but I am very happy with the results so far.

I have also started a new job as a science technician in a secondary school. It has made a huge difference because I do very little work on the computer and very little paperwork so I don't get eye strain. It is fantastic to have a more sympathetic employer who gives me the little bit of support that I need to do my job well, I also get regular breaks! My attitude to every day life has changed so much, my condition isn't ruling my life and I feel like I can tackle the world again.

I am a very happy girl again

[Andrew MacLean]

Holmes

That's good news all round. Every good wish.

Andrew