Emotionally and mentally unwell because of retinopathy please help.

[Becks33]

Hi
Last year I got diagnosed with proliferative diabetic retinopathy and I have had 4 sessions of laser in each eye ... in September this year I noticed blood pouring into my central vision ... as the weeks went on it gotten worse (left eye) my right eye had a lucentis injection about 6 weeks ago and no sight of new vessels growth or active retinopathy... but the left eye ten days ago I had a vitreoretinal surgery on this eye as there was a lot of scar tissue and fibromascular membranes forming and a dense haemorrhage this was not cleaning I couldn’t see from that eye! When in surgery they found my retina had detached... I am 24 years old and I have no left my house in over 12 months my life has completely stopped and most days I sit in my house wanting to end things now.
Can anyone share anything that can uplift me with this disease? I now have an oil bubble in my left eye holding the retina doen and I can’t see any definition out of this eye at all it’s still completely useless!
I don’t want to loose my driving liscence either...
Once diabetic retinopathy reaches a certain stage is it possible to have a bleed at any time? Is this what my life is now? Bleeding eyes??? Will I ever be comfortable in my own skin again or be able to exercise again? Or book and go on holidays or enjoy anything? Because right now all I know I one eye is useless and I having constant treatment at the moment and there is no upside in my life
Does retinopathy eventually stable out or what? I want to have children too at some stage and this probably won’t happen now..

Sorry to be depressing guys xxx

 

[Brunneria]

Hi @Becks33

I am so sorry! This must seem like the end of the world for you.
What have you been told by your healthcare team? They must have an idea of how things will change/ improve/develop?

Are you managing to control your blood glucose? Stable, in target blood glucose levels will decrease the risk of further deterioration.

 

[Diakat]

A few members have had eye issues, but maybe not quite as full on as you describe. Tagging @Jaylee because he had injections and @Dark Horse because they know much more than I do on this topic.

 

[Jaylee]

Hi
Last year I got diagnosed with proliferative diabetic retinopathy and I have had 4 sessions of laser in each eye ... in September this year I noticed blood pouring into my central vision ... as the weeks went on it gotten worse (left eye) my right eye had a lucentis injection about 6 weeks ago and no sight of new vessels growth or active retinopathy... but the left eye ten days ago I had a vitreoretinal surgery on this eye as there was a lot of scar tissue and fibromascular membranes forming and a dense haemorrhage this was not cleaning I couldn’t see from that eye! When in surgery they found my retina had detached... I am 24 years old and I have no left my house in over 12 months my life has completely stopped and most days I sit in my house wanting to end things now.
Can anyone share anything that can uplift me with this disease? I now have an oil bubble in my left eye holding the retina doen and I can’t see any definition out of this eye at all it’s still completely useless!
I don’t want to loose my driving liscence either...
Once diabetic retinopathy reaches a certain stage is it possible to have a bleed at any time? Is this what my life is now? Bleeding eyes??? Will I ever be comfortable in my own skin again or be able to exercise again? Or book and go on holidays or enjoy anything? Because right now all I know I one eye is useless and I having constant treatment at the moment and there is no upside in my life
Does retinopathy eventually stable out or what? I want to have children too at some stage and this probably won’t happen now..

Sorry to be depressing guys xxx

Hi @Becks33 ,

You just need one eye to a reasonable standard with the DVLA to hold onto your licence. So yer not out of the game yet...
Just to belay any concern. I personally know of 2 long term T1s with retinopathy treatment under the belt retain a driving licence.

I've had treatment for macula edema. Jabs of Lucentis & eylea.. Technically discharged, but still monitored..

You & I have different circumstances I'm not sure how your BG managment is?

But if you have problems in that department?
Focus on what could be better BG wise & all the eye treatment you are experiencing could come good..
I appreciate it's easy to say. & to be honest, if you are having difficulty? A steady change over a period of months is kinder than a massive "short sharp shock" to the managment regime.. Ironically, I cleaned up my BG act. (Way too fast.) Got away with it for years. (Being reckless.) Then "boom!" Slapped with a "diabetic" eye issue... After finally getting the A1cs spot on.)

Keep talking to us. You are not alone.
Tagging in @himtoo who has had experince & may well impart some wise words.

Edited to add coherent sense.& say @Dark Horse does know the stuff...

 

[Juicyj]

Hi @Becks33 Just checking in on you, I don't have much to add to what @Jaylee has said about bg control, but keeping stable control and if your HbA1c is elevated that bringing it down slowly will help. Your team should be giving you regular appointments so hopefully you are being supported there.

 

[Dark Horse]

I now have an oil bubble in my left eye holding the retina doen and I can’t see any definition out of this eye at all it’s still completely useless!

The oil is needed to hold the retina in place during healing, it will be removed later. While the oil is still in place, your vision will be very poor as you will be looking through the oil. Even after the oil is removed, the vision may keep improving so it may be several months before you know how good your vision is going to be in that eye. In the meantime, it's very important to follow all the instructions given by the ophthalmology staff, particularly about posturing and to attend all the appointments they give you.

Does retinopathy eventually stable out or what?

Although this seems like a long road now, with appropriate treatment diabetic retinopathy does become stable - it's called 'stable-treated diabetic retinopathy'. It's possible that you may need further treatment before you reach this stage but you just have to be patient (I appreciate that's difficult) and wait and see.

I recommend asking the Eye Clinic if they have an ECLO (Eye Clinic Liaison Officer) that you can talk to. They are trained to both give information and emotional support. (On here we can only give generalisations whereas your medical team know all the details of your case and are best placed to advise you.)

Thanks to @Diakat and @Jaylee for the tag.

 

[himtoo]

Hi @Becks33
I have been t1d for 47 years now -- had laser in both eyes and injections in my left eye for macular odema…. not the same as you but a long enough history with eye issues.

Agree with what has been said to stay I close contact with your eye care team and your DSN too

My left eye on its own is not up to the standard of driving but my right eye vision is fine so I have no problem passing my 3 yearly DVLA eye test