Good Days and Bad Days

General forum for the UK Keratoconus and self-help group members.

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Susan Mason
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Keratoconus: Yes, I have KC
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Good Days and Bad Days

Postby Susan Mason » Sun 23 May 2004 11:39 pm

Well at present I seem to be having a really c**p time. My scleral lenses which I have had for just coming up to 12 months are not behaving (well the left eye isn't) the hospital seem to think it may need refitting and hopefully this will be confirmed on Thurs when I go for my appointment. From then hopefully it will be a few weeks and then hopefully I willbe back to normal (or as near to normal as I will ever be). The concern that I have at present is that my employer of nearly 15 years seems to have lost the plot with me. I asked could I move my desk after a phone call with the hospital seemed to indicate that maybe the dust would not be helping and whilst initially they said yes, however, have still to move my desk a conversation I had with them at the end of the week indicated that they felt they needed further GP and specialist reports on me and also that after these if they felt I would not be able to do my job to their requirements, whilst I was covered by the DDA the may decide to terminate my contract of employment with them. I am now wondering whether this was all said to make/encourage me to 'jump ship' before being pushed or if they really can do this. I didn't ask to have this stupid condition, which I am quite sure causes me more problems than it does them and whilst I try in the main to remain positive remembering that many are worse than me and after all it is not a lethal or painful disease however, just at present I feel like curling up into a ball,going to sleep and not waking up. I should mention that since 17th April when the left lens started to trouble me I have had several days off work as I just could not wear my lens and therfore could not see to work let alone party at home. Do anyone else have any experience with Good Days and Bad Days or employers for that matter. :cry:

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paula hardman
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Keratoconus: Yes, I have KC
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Postby paula hardman » Tue 25 May 2004 3:58 pm

Their new response may just be standard HR speak - if you can do your job once moved and refitted then they can't just let you go. A website giving advice on employment law may be exlpain exactly what's allowed.

It's hard (to be it mildly) to get people to understand that you've got an eyesight problem that can be corrected with contacts and not spectacles. Most have trouble just with the concept of astigmatism. Your employers could either be thinking that you're just whinging or that the problem is worse than you say. Maybe a letter from your hospital explaining the condition could sort this out.

Personally I'm fine with my RGPs in winter, but summer is a bit of a fight. In the heat wave last summer I was all I could do just to keep the contacts in during working hours. If the problems started in April, it may also have something to do with hayfever - this is when I start getting symtoms.

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Susan Mason
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Keratoconus: Yes, I have KC
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Good Days & Bad Days

Postby Susan Mason » Wed 26 May 2004 8:16 pm

Paula, thanks for your comments. I am due at the hospital Thurs and also my own GP so I will see what they both have to say. I agree with your comments as to how hard it is to try to get people to understand. If I have a pound for every time they had told me "why don't you just get some glasses/put them on???" I would be rich. I sometimes feel that as nothing is apparently wrong with me or visible to other they feel that I am just having them on. It is a pity that they haven't experienced the joys of hanging nearly upside down in an attempt to get scleral lenses in without air bublbes or had to crawl around on the floor with my child after having accidently dropped a lens whilst cleaning it and not be able to see it despite it being the size of a small maternity shield.

Anyway rollon Thursday and fingers crossed things will get a little better.

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Anne Klepacz
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Good days and bad days

Postby Anne Klepacz » Thu 27 May 2004 8:52 pm

Dear Susan
The Group's 2nd conference last year included various talks on coping at work (a booklet of the full proceedings will be available in a few months time). If your employer continues to be difficult, you could contact the Disability Employment Advisor - there should be at least one at each Jobcentre - who is there not just for people seeking work, but can also support people when it's a question of job retention. They can also refer you to Access to Work - a scheme funded by DFES where your needs in your workplace can be assessed and will fund any special equipment they judge to be necessary to help you do your job. We had speakers from the Career Development Team of a charity called Action for Blind People (who deal with various levels of sight difficulty). They also offer help in mediating with employers, so that might be another avenue to explore. They can be contacted on 020 7635 4972. Good luck, and let us know how you get on.

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Susan Mason
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Good Days & Bad Days

Postby Susan Mason » Sun 30 May 2004 12:13 am

Anne, thanks for your advice and comments. At my hospital appointment on Thurs it was confirmed that the left scleral lens needed reftting and one is now on order for me, not sure how quickly it will arrive. The not so good news is that I now have some scaring on the left eye which, was not there back in Nov 2003 however currently is not too severe. Currently I am down to not wearing the left lens any more than I need to so life is a little one sided once again.
With regards to work my GP has signed me off for 2 weeks and put it down to stress which I am expecting that my employers may take a little more seriously than my eye condition (long story not for now). As for 'Access to Work' back in Sept 2002 I was told by my employer that I must contact them and whilst they and the RNIB were extremely helpful my employers have not yet fully implemented all that was suggested. So far with regards to this I have tried not to 'rock the boat'as I felt it may effect my job however if things go the way they have indicated it may not matter. After a few days to think about what was said to me and a lot of sleepless nights I am now feeling more that I have been 'backed into a corner' to see if I jump of my own accord. From speaking to close friends at work I am aware that another manager has been put into my job after only 3 days of my absence. Whilst I realise that the job needs covering this does seem a little quick especially as I have been left to cope one supervisor down since early March with no attempt made to assist me. I have also read some info provided by the DDA which states that 'reasonable adjustments' should be made for me curenrly I feel this is not the case and whilst the company has changed my working hours this was at my request rather than them making the change to accomodate me.
Anyway I still feel quite fed up by it all and a little as if I am on a looser before I start most days I feel like curling up into a ball and hiding under the desk however, I have a very cute 7 year old who won't allow me to do this (well not for long anyway). My plan nw is to try to pull myself together nd then see where I go from here. My gut instinct is telling me that the conversation that took place, just over a week ago if challenged by me could easily be explained if they felt inclined by me being aranoid or missunderstanding them quoting me the company policy rather than telling me they were going to be following it. The daft thing about it all is being a manager I am only too aware what the company policy is and how it is adhered to.
What I can't get out of my head at present is on Thurs at the hospital it was once again made quite clear to me that if when wearing my lenses I suffered from discomfort or pain I was to take them out ASAP and basically as far as wearing the lenses from day to day I should take each day as it comes and there was no way of telling when a 'bad' day may happen. What worries me is my employers apparent lack of understanding or not wanting to understand this and how I continue to work to their satisfaction when I have no way of saying how I will be from day to day. Surely I am not the only one who has this situation and many others with KC must wake each day not knowing what view on life they will see? (eye sight wise that is).

:o :(


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