Severe anxiety due to eye complications

[RhianSamuel]

Apologies in advance for the long post but I am in a constant state of panic over my eyes which is really affecting my daily life.

Here's my story so far;

Been Type 1 for 18 years. Diagnosed when I was 18, my control in the earlier days (if I remember correctly it was always around 8-9%). Not had bloods done for just over a year (due to Covid restrictions) but my estimated Libre HBA1C is 6.6% which has remained around this for the past couple of years. Also no problems with blood pressure or cholesterol that I'm aware of.

After a routine screening 5 years ago I received the dreaded letter that I was being referred with R1 & M1 (was in a complete state of fear as you can imagine) but thankfully the only action required at the time was further monitoring. This went on for a year or two then they put me back into the normal screening system.

In August 2019 I got referred again and had the appointment in Jan 2020 (but this time to a virtual clinic where a specialist nurse carries out the additional tests, a consultant looks at the results and you get called back if necessary). Following this I received a letter to say screening again in a year's time .

I had my screening done last week and am currently waiting for the results however I suffer from severe anxiety with anything health related and I'm getting myself into quite a state! I'm convinced I'll be referred again and I'm petrified at the thought of needing treatment. It all sounds horrific and from what I've seen on a retinopathy Facebook group, there seems to be endless problems due to actually having treatment (i.e. bleeds, vision loss due to laser, retinal detachment leading to more evasive treatment etc) which has scared me even more especially as I feel my eyesight is currently alright.

I am trying my hardest to reason with myself but I'm just so scared, it's constantly on my mind and I'm actually dreading the letter coming through the door (which I expect will be in the next few days). I just feel so unhappy and fed up with it taking over my thoughts

 

[Grant_Vicat]

Apologies in advance for the long post but I am in a constant state of panic over my eyes which is really affecting my daily life.

Here's my story so far;

Been Type 1 for 18 years. Diagnosed when I was 18, my control in the earlier days (if I remember correctly it was always around 8-9%). Not had bloods done for just over a year (due to Covid restrictions) but my estimated Libre HBA1C is 6.6% which has remained around this for the past couple of years. Also no problems with blood pressure or cholesterol that I'm aware of.

After a routine screening 5 years ago I received the dreaded letter that I was being referred with R1 & M1 (was in a complete state of fear as you can imagine) but thankfully the only action required at the time was further monitoring. This went on for a year or two then they put me back into the normal screening system.

In August 2019 I got referred again and had the appointment in Jan 2020 (but this time to a virtual clinic where a specialist nurse carries out the additional tests, a consultant looks at the results and you get called back if necessary). Following this I received a letter to say screening again in a year's time .

I had my screening done last week and am currently waiting for the results however I suffer from severe anxiety with anything health related and I'm getting myself into quite a state! I'm convinced I'll be referred again and I'm petrified at the thought of needing treatment. It all sounds horrific and from what I've seen on a retinopathy Facebook group, there seems to be endless problems due to actually having treatment (i.e. bleeds, vision loss due to laser, retinal detachment leading to more evasive treatment etc) which has scared me even more especially as I feel my eyesight is currently alright.

I am trying my hardest to reason with myself but I'm just so scared, it's constantly on my mind and I'm actually dreading the letter coming through the door (which I expect will be in the next few days). I just feel so unhappy and fed up with it taking over my thoughts

Hi @RhianSamuel Just a bit of reassurance. The picture in my avatar was taken 5 years ago. The reading glasses around my neck are still the only form of visual aid I use, even now. Yet I had both eyes lasered several times between 1979 and 1983. I was worried sick by a letter I received from the screening service in October 2012 referring me to Addenbrooke's Hospital Cambridge. The head Ophthalmologist said that what they had "discovered" was simply old scarring from years before.
As I am sure you are aware, worrying and stress can lead to raised blood sugar readings, which in turn do not keep your regime in an ideal state for protecting against retinopathy. Try not to worry (easily said), since so often these things are a false alarm.
The very best of luck!

 

[Dark Horse]

I had my screening done last week and am currently waiting for the results however I suffer from severe anxiety with anything health related and I'm getting myself into quite a state! I'm convinced I'll be referred again and I'm petrified at the thought of needing treatment. It all sounds horrific and from what I've seen on a retinopathy Facebook group, there seems to be endless problems due to actually having treatment (i.e. bleeds, vision loss due to laser, retinal detachment leading to more evasive treatment etc) which has scared me even more especially as I feel my eyesight is currently alright

1. Even if you are referred, you may not need treatment - you already have experience of this.
2. People are more likely to post about their problems than their lack of problems so the experiences you read about are not an accurate reflection of the incidence of such problems
3. Bleeds and retinal detachments are caused by the retinopathy rather than the treatment
4. Treatment (if needed) is most successful if it is given BEFORE there is any noticeable effect on vision i.e. when your eyesight is alright
5. A practical approach to your anxiety would be to go for a walk every time you start to feel anxious - exercise reduces anxiety and has the bonus that it is beneficial in reducing the risk of retinopathy progression.

 

[RhianSamuel]

Hi @RhianSamuel Just a bit of reassurance. The picture in my avatar was taken 5 years ago. The reading glasses around my neck are still the only form of visual aid I use, even now. Yet I had both eyes lasered several times between 1979 and 1983. I was worried sick by a letter I received from the screening service in October 2012 referring me to Addenbrooke's Hospital Cambridge. The head Ophthalmologist said that what they had "discovered" was simply old scarring from years before.
As I am sure you are aware, worrying and stress can lead to raised blood sugar readings, which in turn do not keep your regime in an ideal state for protecting against retinopathy. Try not to worry (easily said), since so often these things are a false alarm.
The very best of luck!

Thank you for your reply. Yes I have noticed that my levels have been affected lately. I'm trying my best to keep them in range but like you said, it's so hard with additional stress & anxiety Thank you again for taking the time to reply, I appreciate you trying to reassure me x

 

[RhianSamuel]

1. Even if you are referred, you may not need treatment - you already have experience of this.
2. People are more likely to post about their problems than their lack of problems so the experiences you read about are not an accurate reflection of the incidence of such problems
3. Bleeds and retinal detachments are caused by the retinopathy rather than the treatment
4. Treatment (if needed) is most successful if it is given BEFORE there is any noticeable effect on vision i.e. when your eyesight is alright
5. A practical approach to your anxiety would be to go for a walk every time you start to feel anxious - exercise reduces anxiety and has the bonus that it is beneficial in reducing the risk of retinopathy progression.

Thank you for your reassuring reply. I've read a few of your comments on other eye related posts and have found them to be of some comfort over recent days. I'm not sure if you have medical training in this field or if you speak from experience but your knowledge has been very helpful so thank you again x

 

[RhianSamuel]

Just an update. I received my results this morning and I am being referred again The information on the letter was the same as before (right eye R1 M0, left eye R1 M1) so I'm praying that nothing has changed since last time and this is just a precautionary measure

 

[Mrs T 123]

Just an update. I received my results this morning and I am being referred again The information on the letter was the same as before (right eye R1 M0, left eye R1 M1) so I'm praying that nothing has changed since last time and this is just a precautionary measure

Fingers & everything crossed for you - take care. I feel your pain I am the same and really do worry about my eyes. I have had on/off retinopathy for last 3 years - 1st year had it, 2nd year didn't, last year had six monthly check-ups (so was worried) but because of COVID didn't get check-ups when I did eventually in November 2020 I was fearful the same as you but again no sign of retinopathy so back to yearly check-ups (all good). The main thing as Dark Horse says above is it saves our sight before it's too late and that's the most important thing. From what I hear, personally, anyone (my mother had cataracts removed from both eyes and others who have had laser treatment or injections) who have had to have any treatment on their eyes say it is not good but nowhere near as bad as you think it will be just a bit more uncomfortable rather than painful from what they say. I hope this re-assures you and causes you less worry (it has for me) do take care, hopefully you won't need any treatment and keep in touch and let us know how you get on.

 

[RhianSamuel]

Fingers & everything crossed for you - take care. I feel your pain I am the same and really do worry about my eyes. I have had on/off retinopathy for last 3 years - 1st year had it, 2nd year didn't, last year had six monthly check-ups (so was worried) but because of COVID didn't get check-ups when I did eventually in November 2020 I was fearful the same as you but again no sign of retinopathy so back to yearly check-ups (all good). The main thing as Dark Horse says above is it saves our sight before it's too late and that's the most important thing. From what I hear, personally, anyone (my mother had cataracts removed from both eyes and others who have had laser treatment or injections) who have had to have any treatment on their eyes say it is not good but nowhere near as bad as you think it will be just a bit more uncomfortable rather than painful from what they say. I hope this re-assures you and causes you less worry (it has for me) do take care, hopefully you won't need any treatment and keep in touch and let us know how you get on.

Thank you, it really does help hearing of positive experiences and I'm finding this forum really helps too, I don't feel quite so alone.
I'm praying nothing has changed since last time (January 2020) as the thought of treatment terrifies me and makes me very anxious!
Again I appreciate your kindness and I'll let you know how I get on (fingers firmly crossed) x