I’m about to have my 5th op in 10 months. Every op means at least a week of sick leave after for recovery.
I’ve spent the paid sick leave allowance (a measure brought on by Covid).
How do you deal mentally with having your pay cut by a third because of something you were born with have no control over and don’t want to go through.
I’m lucky to have a job and that they’ve not sacked me yet so this is not a complaint as such. The pay cut Just adds to the general low feeling of losing my eye. And being in pain.
Not sure what I’m looking for. Maybe this is just a rant.
Thank you for reading
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SpaceBend
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36 Replies
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Oh RoyN you are definitely allowed a rant as the position you have found yourself in is very unfair . I really hope that this is your final op. I wish I had words of wisdom to give you unfortunately I don't but I do empathise with you completely and feel sad for what you are having to go through.I hope this op is a success and stops your pain as I think you've been through enough and it's time for things to go well for you now. X
Oh RoyN everyone deserves a rant now and then and we are all here to listen. Unfortunately I have no answer but I hope things improve for you soon. Take care
I assume you have investigated all the sick leave laws on the internet ?
It seems that discretionary sick pay may sometimes be given to you by your employer even if you do not qualify.A trade union may know.
Have you had all your holiday pay ? This should still be allocated to you even if you are off sick,( at least it sounds like it) .
Many solicitors will give you half an hour free consultation if you are unsure of the legalities.
The Citizen's advice bureaux can also be very useful, although can be very busy.
I also wonder about the RNIB , Fight for Sight, or Glaucoma UK. The ELO ( Eye liason officer) usually based in Opthalmic outpatients, are very knowledgable.
There may be benefits available that are not well known.
Perhaps your MP would be interested in your circumstances ? I think they often live in such a different world that they should know of injustices. M.P's taking individual's problems to parliament is sometimes the way laws get changed.
If you do find more information, it may well help others and you might feel better by trying every avenue.
Thank you so much some really great advice and things I’ve not thought of.
No I haven’t sought advice from the internet or otherwise.
I can’t lose my job and I feel the way they’ve been behaving it will not go down well, kicking this hornets nest.
I’ve asked moorfields to start the process of getting me legally qualified for sight impairment they said they’d be in touch. This was two weeks ago now. No one got in touch.
Between a new(ish) born, demanding work and my constant appointments ( they deduct half a days work as sick leave for that too) I just don’t see myself fighting this or writing to my MP
But maybe I’m just in this sort of mood right now.
Usually I’m highly motivated and get things done. Just really spread thin right now mentally and physically.
Other people have suggested excellent avenues to try and I hope some of these work out for you.
It's tough having to balance gratitude to an employer for 'putting up with' frequent absences and yet also making sure we are being treated fairly isn't it.
I found it helps to keep a good record of dates off work and pay and decisions / discussions etc with employer and hospital etc. Just in case of need to refer to it later on.
Also I found union support helpful in the background. The 2 occasions i had a problem (not health related) they didn't challenge my employer and the employer might not even know I'm a member. But the union did have useful information and links to support.
As for coping with the reduced income due to health condition, I just do distraction activities to avoid thinking about stuff because there's nothing I can do. But I realise that is not helpful if you have a demanding job and busy family responsibilities.
I hope that this next op stops the pain. Can Moorfields give any indication of how long it might take to get registered ?
I was lead to believe it would be quick but no contact yet. So I’ll just chase it in my next post op appointment. If I get some tax benefit it might reduce the financial pressure as well as the op reducing my IO pressure ha…. Ha…..
Hi roy rant as much as you want..this is an awful disease just like cancer.....you dont know what is going to happen next. thinking of you today..take care valfrance
Thank you. I must say I do encourage myself by sayi at least it’s not cancer. Worst case I lose my vision not my life. And hey once you’re completely blind you’re cured haha
Hi roy i am sitting here with 1 arm typing..i broke my arm in my job outside in the grounds..i could be off fully paid..however i live in my job at a hotel..no one to do my job...i am the manager....feel obligated to work....the place would literally collapse..i also dont want to be replaced.i am looking at a screen all day and its getting harder to do this....im 64 and have nowhere else to go..as i have my accommodation here...i should be retiring..but i cannot afford to live outside these gates....i dont feel sorry for myself...im fortunate to have a job and accommodation...
last year when i was diagnosed i wanted to end it all....i am coping better now...
we all have different circumstances...pain is awful i hope you get good results i am nowhere as bad as you at all. we all do care on here take care valfrance
Sorry to hear about your situation too Valfrance! Sending love and support. Hope your arm mends soon. We’re also stuck and unable to retire at the moment. Future looks decidedly uncertain suddenly. You’re not alone in feeling trapped. X
hi beecalmed im not feeling sorry for myself, so many people with procedures being done to them. its just a broken arm i just wish i had the freedom to rest thats all. im just so tired all the time because healing bones makes you tired. thanks for caring valfrance
So sorry to hear that valfrance you're usually so positive. I hope your arm recovers soon and your situation gets sorted. What about social housing. Retirement planning is difficult for so many. Sending love x
hi ethelpledge im sure there are millions like me out there working with glaucoma and worried about their eyes.i dont own anything have minimal savings, and i wont get full pension due to my past circumstances. renting is ill affordable as you all know. i dont want to fall on the state. i will just work here as long as i can thats all i can do. it just worries me using my eyes so much on a screen. if i did not have glaucoma i would not be concerned. thanks for caring valfrance
The one we've got is built into the software, when I've logged into it we have a box in bottom left corner, which gives me a, blank screen with a, search button top right, just start typing mag and click magnifier, sorted, starts, at 100% normal size, goes up and down increments of 50, 150, 200 etc
Yes, I put 2 drops per day into each eye, also use dry eye drops when needed, my mum lived all her life with one good eye but put glaucoma drops into both
Is it to control pain ? I’m curious. I’ve said it as a joke but only only half a joke as I actually did think that once your vision is gone there’s no need to control pressure. But I realise through my experience that highe pressure means low eye health and possibly other complications
Hi RoyN! Sorry to hear you’re struggling and worried about your family. Can’t add much more than has been said here. Good advice to keep a note of all your interactions with your employers. If you have a union it would be good to join as they should help. If not, as said, try Citizens Advice Bureau. I appreciate many emplyees these days don’t use or perhaps don’t have access to unions as easily as they did in the past, which I think is very sad.
Being registered as partially sighted will open up possibilities to approach your council and charities for support and grants. Keep chasing this as hospitals are slow due to back logs so do need chasing. Always ask the hospital how long letters should take at the moment and chase as soon as that date has arrived if you haven’t received anything.
And rant away on here as much as you need! Sometimes all you need is to rant to someone who understands and will listen. The process of ranting relieves some pressure and sometimes allows you to find your own solution or next step or just brief momentary peace.
I read recently something like, the route to feeling better isn’t hope, it’s action. I think this is so true. Sometimes just feeling you can take a modicum of control back in your life with this awful disease can help.
Keep in touch and let us know how you get on. We’re all here for you!
I found the phone no of my ECLO…Eye Clinic Liason Officer and he contacted the consultant and organised my being registered as sight impaired. As you know, hospitals are desperately busy right now and the ECLO is there specifically to advise. Sight loss is tough whatever the circumstances and having soneone fighting your corner really helps. Good luck
I really felt for you then when I read that. Know how you feel. Did you say you have a newish born as well? That can be tough but it does get better. Just remember you are not alone 😊. X
Thank you all I’m in quite some pain post op so can barely open my eyes. Even the non operated one. Will get through your lovely messages tomorrow hopefully. M thanks again
Go to the experts for benefits advice. The RNIB are there to help all people with visual impairments. They have a specialist benefits helpline. 0303 123 9999, General services are likely to be too generalist for you.
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