Retinopathy & Macular Edema Pain

[Daveuyj]

Hi all, Long time reader first time poster.

I Have been suffering with both bi-lateral retinopathy and Macular Edema for a while, mainly due to being put on Quetiapine by my mental health team for insomnia.

I have had several rounds of Laser and Injections all of which has caused my retina's to swell up (uveitis). This has caused me a great deal of pain and light sensitivity. I've actually lost a job, due to having time off due to having operations on a weekly basis during the second part of my probation. I was given the choice of jump or we will push.

Reading other peoples experiences they all seem to be relatively painless, just gritty eyes for a few hours/day. I'm almost bed bound with the curtains drawn. I have had just had another hemorrhage in my right eye and I feel like its about to exploded from the pressure, currently at work. I'm in pain, I'm tired, upset and just want to cry.

I did actually have a little cry on the way to work. I feel pretty wretched. Ironically I worked at BMEC for 8 years and I think its made me worse, saw all kinds of diabetic patients who didn't get quite the positive out look we hoped for.

Due to loosing my permanent full time job I am just working agency as I am going to have to have at least 4-5 more operations and i cant risk my mental health due loosing a job and (I'm teaching right now) getting attached to the kids and then having to let them down by not being there or leaving half way through a term. I feel a bit trapped currently.

I'm supposed to be getting married and having a child soon, i can't even afford to pay my mortgage half the time, my fiancée is basically paying it and im just paying some of the bills.

Sorry for the long message

 

[coby]

Hi all, Long time reader first time poster.

I Have been suffering with both bi-lateral retinopathy and Macular Edema for a while, mainly due to being put on Quetiapine by my mental health team for insomnia.

I have had several rounds of Laser and Injections all of which has caused my retina's to swell up (uveitis). This has caused me a great deal of pain and light sensitivity. I've actually lost a job, due to having time off due to having operations on a weekly basis during the second part of my probation. I was given the choice of jump or we will push.

Reading other peoples experiences they all seem to be relatively painless, just gritty eyes for a few hours/day. I'm almost bed bound with the curtains drawn. I have had just had another hemorrhage in my right eye and I feel like its about to exploded from the pressure, currently at work. I'm in pain, I'm tired, upset and just want to cry.

I did actually have a little cry on the way to work. I feel pretty wretched. Ironically I worked at BMEC for 8 years and I think its made me worse, saw all kinds of diabetic patients who didn't get quite the positive out look we hoped for.

Due to loosing my permanent full time job I am just working agency as I am going to have to have at least 4-5 more operations and i cant risk my mental health due loosing a job and (I'm teaching right now) getting attached to the kids and then having to let them down by not being there or leaving half way through a term. I feel a bit trapped currently.

I'm supposed to be getting married and having a child soon, i can't even afford to pay my mortgage half the time, my fiancée is basically paying it and im just paying some of the bills.

Sorry for the long message

@Daveuyj aww I feel for you with what you are going through. I don't have the knowledge/answers to your plight but I just want to say how brave you are with it all. Puts me to shame, as I am about to have two surgeries to my left eye ... one for high pressure in just that eye, plus a cataract at same time, and I am definitely feeling scared and anxious. You are going through far worse and I admire your courage and the fact you also have to hold down a job, albeit a temporary one. I hope someone on the site has been through this and can advise you. Best of luck with your future plans too x

 

[Daveuyj]

Thanks dude.

 

[MrsA2]

@Dark Horse can you explain anything to the op, perhaps?

 

[Dark Horse]

I'm sorry you are currently suffering from such a painful condition as uveitis and have the additional worries re retinopathy and employment - please accept my sympathy. Uveitis can be quite variable so your ophthalmologist will have the best understanding of the best treatment for you and what the prognosis is as they know all the details of your case. I would suggest that while you are in an acute phase i.e. in pain, it would best not to worry too much about the future and just try to concentrate on managing the present (even if it is diffiicult to do).

Uveitis is not fully understood but keeping good control of blood glucose levels is likely to lessen the risk of reccurence. https://www.reviewofoptometry.com/news/article/uveitis-common-in-patients-with-diabetes

There is some general information about uveitis here:-
https://www.hey.nhs.uk/patient-leaflet/anterior-uveitis/
https://patient.info/eye-care/eye-problems/uveitis

Thanks to @MrsA2 for the tag.

 

[Daveuyj]

Thank You both so much.