worried about blindness.

[manda pops]

Hi guys, hope everyone is getting on ok.

Basicaly in feb i was diagnosed with retinopathy and got Laser treatment for the first time in May i had my 3 monthly check up an my doctor said he could not see any leaking so wants to see me back in 6 months.

I still cant calm down about this, everyday i am constantly checkin to see if my eyes have deteriorated i feel sick all the time i am scared to watch tv and hardly ever use the computer, im strugling to find a job as i feel i would be scared to work on a computer incase things get so much worse. I am starting to get my sugars under control but it is taking its time. i feel that i get alot of headaches and that really stresses and vorys me, i have just became a bage of nerves and i cry constantly, i dont want to loose my sight as i feel i wouldnt be able to cope. when i am walkin out and about i look at the ground as a worry i wont see faces but i also try to read every sign and i panic if i cant read it.

Is there anyone else who feels like this or can reassure me with some similar story or positive outcome. How quickly will my sight go.

Thank you all, i have read some other posts and there is so many brave people out there x

 

[noblehead]

Don't know if you've seen this website Mandy but I'll post it anyways:

http://medweb.bham.ac.uk/easdec/


Your doing the right thing getting on top of your bg control and you also need to monitor your bp and cholesterol levels too, eating a diet rich in fruit and vegetables is said to help eye health so make sure you eat over and above the recommended 5-a-day.

To give you some hope I was troubled with diabetic retinopathy from 1999 to 2006 and had laser treatment and a vitrectomy, since 2006 my eyes have remained stable and no new growth has developed since, I had my last Ophthalmology appointment last week and managed to get 6/4 vision in both eyes, I do a lot of driving and the DVLA don't have any issues with giving me a 3 year driving licence.

Easier said than done but try not to worry as stress can make bg and bp control hard to achieve, hopefully in 6 months time when you next attend they'll tell you all is fine.

Best wishes!

 

[manda pops]

thank you for your comments, i am glad your problems are starting to become stable. i find it hard not to let it take over my life but its so difficult i panic an become paranoid all day. i have noticed when im in a down mood my sugars are a bit higher. when i went for my laser the doctor said im lucky the cught it early and said the best treatment is good control, but i cnt help thinking its getting worse an worse everyday. is it normal to suffer headaches, i do have slightly different vision in my left eye, everythin appears blurred and a bit smaller. its nice to get comments on here of people who are goin through the same thing as my family jus tell me to forget it and move on but its hard to block it out, i think about it 24/7 and i am unable to get a job as i have lost all my confidence, i just want my life to go back to normal. Is it even possible to have a normal life with these eye conditions?

I have been visiting my diabetes nurse every week to try and get my sugars down but its rather difficult, but i spose it takes time.

Do you have any problems carrying out your normal life and was your bleeds brought on by poor control at the time, sorry to moan constantly but i cant help worrying. but like you said better control and a healthy diet.

Thanks Again x

 

[Fraddycat]

Hi Manda, try to remember that your eyes can change throughout your life even if you are not diabetic. This can be due to age, hormones, lifestyle all sorts of things. I wear glasses and they have to be changed every couple of years because my eyes are changing, sometimes worse, sometimes better. Now that I am 45 I think I will need varifocals, I am finding it hard to read the writing on jars and packets and I find it frustrating, but I don't think it has anything to do with diabetes its just my age.

I am not trying to play down your concern, you have every right to be anxious about retinopathy, and its right that you are aware how serious it is and that your BG needs to be under control, but try not to let it rule your life. If you really find it hard to relax maybe you should see your doctor again to get referred back to the specialist, if you are going to be tortured by anxiety then 6 months is too long to wait.

It seems to me that you should try to throw your energies into getting you BG under control as this will really help to improve your retinopathy.

Good luck

 

[manda pops]

thank you about your comments, i can only hope that once my sugars are stable and i know what im doing the eye problems will become stable. i think the stress maybe making it harder to control my diabetes tho but my doctor said to come back in 6 months so i wouldnt want to waste his time with my anxiety and worries, he didnt feel treatment was nessessary at that stage. some stories i have heard have been really scary but i have heard alot of brave people and i my mum keeps telling me to be positive all the time and always have hope.

Good luck to everyone x

 

[Unbeliever]

Certainly stress and the raised bg levels it causes wll affect your eyes. I can tell when my bgs are high because my eyes are blurry but this is not necessarily connected with retinopahy.
Reading and using your computer will not make yiur retinopathy worse. You willl probably find your vision changing quite a bit for better and worse until things settle.
I think you are quite right to wait as your doctor advised . The only treatment for retinopathy is laser in most hospitals but to be effecive there should not be oo much fluid in the eye. If you had no fresh bleeds las time you were checked , and you keep your bg stable you may have no more trouble and not require any more treatment.

Rushing into treatment is not always he best thing with retinopathy. if f you have some reason o be concerned hen of coutse you should get it checked but otherwise the best course is to wait as you are,
With this condition you have to have a great deal of patience and always bear in mind that the drs cannot foretell the future.
You are obviously well aware of how it is linked to your diabetes but we are all different.

Many of us here understand how you feel and it takes some time to accept that you have this condition. Many many people have treatment for it and never need any more, Don't give up hope. You are not just at the mercy of the doctors . You know you can do something to help yourself. It can be frightening and lonely but you will feel beter and more confident if you ust try to remeber it is a common side effect of diabetes and treamen is improving all the time.

Many of us can empathise with you. Just remeber that the situation is far from hopeless and hat you are actually making it worse by dwelling on it.

In my case I have been treated for 5 years . I am not blind although the treatmen does not work for me.
Just do not assume that things will just deteriorate. It isn't like that.

 

[noblehead]

Do you have any problems carrying out your normal life and was your bleeds brought on by poor control at the time, sorry to moan constantly but i cant help worrying. but like you said better control and a healthy diet.

I make no excuses Mandy that poor control early on in my diabetes journey was likely to blame for me developing diabetic retinopathy, when you are younger you think you are invincible but complications such as retinopathy is a big wake up call.

During my time with retinopathy I just carried on working and leading a normal life as far as possible, like you I worried myself stupid and did wonder what the the future would hold, retinopathy was never far from my thoughts (and still isn't despite being fine since 2006) and the only time I had off work was when I had the Vitrectomy.

Your Ophthalmologist is right that you are lucky that the changes were spotted early, next time you go back try and ask him/her any nagging questions that you may have and ask them for advice, I had a good chat with my own last week as I had forgotten when I first developed retinopathy and couldn't remember when I was last treated, they do some great work and rest assured they'll always have your best interests at heart when it comes to treatment etc.

 

[manda pops]

thanks everyone for your comments there is so many brave and positive people out there who are a credit to us all i wish i could be more like yous. i just dont know what to expect next and i dont know what to look out for to raise concern i feel everytime i read a symptom i think i have that and i worry myself sick an its in my mind constantly but it has been a huge wake up call i jus hope i have got it early enough to control my diabetes and save my future as i am still young and have an amazing husband who we would have had a great future together a jus hope i havent rewined that for us, but worrying aint helping either as its rewining my life, how do you block it out every headache i get i think omething serious is wrong but stress is probably the cause.

I have a low carb diet now with plenty of fruit and veg, i have managed to loose some weight with not alot of alcohol but im not any happier as i just hate not knowing whats goin to happen or if there is something serious wrong jus now.

Im so sorry to sound so low and moany but im jus so scared and dont know what to do to be happy anymore.


thank you x

 

[Unbeliever]

You've had a shick- make sure he effecs are posiive and make a real effort to improve your levels by the ime you have your next checkup. Don't obsess and look up symptoms connected wih retinopathy just concentrate on what is down to you - diet and exercise.

Don't think of "the future" in hat way divide it into bite sized chunks Start a day at a time - hard when you are young.

Its wonderful that you have your husband's support and there is no reason to hink you will NOT have a great future together.
You will be a stronger person for dealing with his and your relaionship will be stronger too.

I used o go to the hospital and wonder how everyone could just sit there so calmly. The answer was hat they had mostly ecome used to it all - the rouine and all the diffeerent procedures etc. At first it is all overwhelming and you keep expecting something traumatic to happen. The reality is that it seldom does and that is good!

I sympathise and empathise wih you. Its very hard bu there is no reason o think the worst. Obviously things are improving slightly for you. In five years I have never had the time between appointments exended- just the opposite But I can still see..

Good luck to you and i am sure you will feel better but don't expect oo much too soon. It is a good thing that you have taken it so seriously from the beginning - not everyone has the sense to do so.

 

[the_anticarb]

Hi Mandypops, sorry to hear you are not going through a good time, I too have suffered with the dreaded R and had a vitrectomy op in my left eye earlier this year, I have now been told I need more laser on my right eye but this is more to prevent future growth than because there is a lot of new vessels in that eye.

I worry a lot about the future, I don't think I will go blind but I do fear losing my driving license which would be a big big blow for me.

However I am hopeful that it will stabilise, it can take 3-4 years of good control to stabilise but the good news is that for most people once it stabliises and you keep your hba1c under 7 then it can stay away for good, as noblehead has found.

If you have lots of questions and your doctor at your local hospital has not answered them., have you considered a private consultation? I did this when I had a lot of worries about my retinopathy and found it really helped. It cost around £200 but I could spend as much time with the doctor as I liked and you often dont' get that luxury on the NHS.

the trouble with me, is, after going private for my op I now have a fear of the NhS so am getting my disease treated privately at the moment which is very costly but that's another story and relates more to how I was dealt with when I had a bleed. If you just want information / reassurance /explanations / a second opinion then it can be worth paying to see someone.

Lots of people get retinopathy and get it treated and then it stabilises. I would say the majority. I read somewhere that it takes about 5 sessions per eye to get burnout. That sounds like a lot but if they can do all that and you can still see and drive then it can't be too bad.

A lot of us on this board have seen the dark side of diabetes, and know where you are coming from in a way that others who have not been through something like this can not. I know it has been a life changing event for me, and the time I had the bleed was the most awful of my life, but I feel I am coming out the other side now, and you will too.

 

[leb]

Hi,
I just wanted to echo what others have said. I too have retInopathy which needed a vitrectomy because if the bleeds. I felt exactly like you when i was told in march this year. I was at a real low and all i did was cry for weeks because i was soooo scared. Im able ti deal wirh things alit better now and i know as all the others have saId you will too. The fact that your doctor diesnt need to see you fir 6 months us a good sign. I dont tjink i went mire than 2 weeks without needing to be seen after the inutual 6 week post laser appointment.
As unbeluwver said there is so much they can do these days blindness isnt as common as it was years ago.
As for your headaches i suffered hugely with these. I really belueve its alot ti do eith stress and msybe raised blood sugars. Stress, in my opinion, has one hell of alot to answer fir. I kniw its so easy to say try nit to worry but it truely will help.

Its ok to feel scared its only natural. But kniwing you are doing all you csn to keep your sugars under control id all you can really ask of yourself.

I wish you all the best

 

[manda pops]

thank you all so much for your comments, your all so brave.

I just feel that im going down and down im scared of rewining my life and my husbands life. i would like an appointment with my eye specialist but not sure how to go about it an il probs wait ages anyway. i just hate feeling scared and i wish life could go back to normal and get a job an be happy before i got this stupid R, lol

I will try and take your comments on board and look positive its just hard not knowing isnt it.

thanks for the advice guys x

 

[noblehead]

I will try and take your comments on board and look positive its just hard not knowing isnt it.

It is Amanda but you must try and stay positive rather than let the retinopathy ruin your life, if you feel it's all becoming a bit too much then have a chat with your gp to see if he/she can help you through this difficult period.

 

[the_anticarb]

Hello Mandy, just to let you know I saw my doctor today and he thinks I am over the worst of my retinopathy. He just wants me to have one more session of laser per eye and says hopefully that should keep it at bay for a long while (I hope forever!).

this is after 2 years of good control and a lot of laser - 6 sessions in one eye and 4 in the left by the time he's done.

I was unlucky though I got florid retinopathy in one eye which led to me having a bleed but I don't think that's the norm, I think a lot of people just have the laser and then it burns out.

Anyway I am feeling a lot more positive about it now and I've even got the ok to start trying for a baby, so it must be a lot better than it was as that wasn't even an option a few months ago.

I do know how scary it can be though and I've never fretted so much.

The plus side is that things I used to fret about, like work and money and stuff, are now so much less important in comparison that I don't fret so much about all these other things - hope I can continue this once my retinopathy worries settle down.

 

[robert72]

Hi manda

Just wanted to say that I had laser for retinopathy back in 1997-98 and it has been stable ever since. 6 or 7 sessions, I forget exactly.

I know it's frightening and there are no guarantees, but don't fear the worst - especially since they have caught yours early too.

Robert

 

[manda pops]

hi, awww thanks guys am glad there is some people out there starting to be ok and getting more positive.

Im jus scared as a dont know what to expect a dont know whats actually goin on behind the scences jus now an if i should go to my doctor again.

Maybe some of you people can answer my questions if you have experienced some of the things i have,

a few days after my laser i noticed that my vision in my left eye was alot smaller and a short while after that it appeared blurred close up things a could read but was as if it was small patches that was blurred, some days its worse than others, not sure why this happens but i worry as its hard to see details from further away and am petrified of having a visible bleed in my other eye as my vision would be really poor.

I feel that i also have some wee vessels the front of my eye that werent always there is this related or all in my head i just dont know, maybe i never noticed before.

Sometimes when i look at a light i feel i can see a flicker off it or a glare and when looking into the daylight but my sugars have also been lower at the time is this normal?

im terrified all the time but im scared to waste my doctors time when i have been told to go back in 6 months, im goin on holiday end of nov an worried incase something happens, should i try and get an appointment at the opthamology or is this all normal, i just dont no what to expect an am scared for the future an everyday i cnt enjoy my life at all, doesnt help that my husband is in afganistan and im missing him so much.

Thanks guys any advice would help x

 

[robert72]

hi manda

It may just take a little while for things to settle down after the laser. I've lost some peripheral vision because of the laser so have to watch where I'm stepping. I also get 'lights' in my eyes if my BG is too low, but then I always did. :crazy: Be careful not to keep your BGs so low that you have lots of hypos.

But if anything is worrying you, it would be best to call the clinic to find out if it's something that needs attention.

Robert

 

[manda pops]

hi, thanks i may always have had the light but never noticed before as my mum said its all the stuff that im reading i think i have them. i have read some horrible stories on here that terify me as a dont want to go through them or the condition to get worse i have got so low that i have nothin to offer anymore me an my hubby are only 25 and i dont want him to be stuck looking after me as i cnt see so we wont have the life we planned a cnt get a job as am scared of being out and not being able to see an being on my own then there is the thought that we might never have a family, this moment in my life i wish i had a crystal ball 18 yrs ago and made sure i dint go down this road.

How would i contact my clinic would i go to my gp for a referral or contact diabetes nurse?

i really appreciate ur advice thank you x

 

[robert72]

hi manda

I had my laser done at the hospital ophthalmology clinic. I just called them directly the one time I was worried and they asked me to come in so they could check it out. Luckily it was nothing, but they were happy to help.

Robert

 

[manda pops]

yes i could try that but i feel they will probably be very busy and wont be able to see me but i may aswell try, i have so many questions to ask .

thank you x