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proliferative retinopathy I'M SO SCARED

ShyGirl said:
Unbeliever said:
Thanks folks for your encouragement but as i said above either way i is not a good prospect for me. in that it will affecthe treatment I have been having fr my PDR and maculopathy and macular oedema. And here is nothing else!

If you are referring to he eyelash thngy SG no the nurse doing the OTC scan knew nohing abou any of it. I was jjust trying to
find a little humour and consolation somewhere in it there,

I am by no means a pessimist as I think you all know but i am a realist. This is serious folks. I know i am in the bes hands and i am duly grateful for that and always have been . I can't deceive myself about the serousness of this. Its a lose-lose situation.

I know the consultant very well by now and that is mutual. He was seriously concerned and i think we were both trying to spare he other's feelings.
I feel that he pressures wil improve , which is fine in itself but if one thing doesn't blind me the oher will.

Glaucoma on its own is a complicaion of diabees too. but just like cataracts can be accelerated by surgery.

That 2month break from he hospital was the longest i have had for years. The nurses often joke that I should move in and just visit home occasionally! Maybe that won't be a joke in future.

Sorry to whine folks but I really can't see any positives or hope in this situation I will just have to be thankful for the added time the reatment o date has allowed me. Thanks for listening.
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I am negative. Life doesn't have any joy for me so I struggle with the idea of fighting "this" on top of everything else but you are positive , always offer kind words and deserve a break so I can't accept your news.
You can't move without an article about cures , stem cells and new body parts being grown so maybe you will be offered some trial type treatment soon.
I can't give up hoping for you. I know it's silly because I don't know anything about you (other than you are female and maybe up north like me) and others on here but I feel like the stories on here- southerngen's , leb's , Anticarb's etc- are mine too and we are a group.

I'm not the positive type as I said but when it comes to others i'm a big cheerleader and will hope some help appears for you soon.
You've come a long way but don't give up hope just yet and don't feel bad about so called "whining" , we all have the right to let off steam.
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I think it's a very good point about the technology that is bursting on the scene now if it was 10 years ago (or even just 5) there wouldn't be room for the optimism there is now :clap:
 
Thank you. I am not an optimist when it comes to myself . I have had a difficult life from the beginning and have had to ake respomnsibiluty for others since childhood. I have no reason to expect miracles for myself.

I have always tried to use my negaibve experiences to help others - someimes too successfully! I am now reired but busier han ever in supporting people. I am no saint and claim no credit - I just feel guilty if i don;t do these things so its probably selfish really!

I have to say that because i am always the one to help others and take responsibility noone ever seems to feel that I need support - even when I tell them. This really frightens me. My family have been told for the past 4 years hat I need help but they refuse to believe it. Its easier for them. I struggle but sill they leave everything to me.
I find myself looking after neighbours who are ill etc because others far more physically able just ignore hem and i cant do hat.

When I got back from the hospital several people did call to ask how i had got on but hey didn't actually listen to the answer - they
just wanted o air their own problems.

I cope better by facing up to things . I am opeless at kidding myself.
I will cope with whatever comes regarding my eyes as i know my consultant will do what he can to help but I am not sure i will
be able even to be civil to the useless "diabetes nurses2 on their ego trips while I have a real batle to fight.

If I do lose my sight I think I would prefer o live on my own and , for the firs time in my life actually put myself first.

A friend said oday that he could scarcely believe that this had happened on op of the other eye conditions. I don't feel like that.
There was always the possibility . I don't expect much and am rarely disappointed.

I haven't given up - I never do but there really is no good outcome possible , especially as both eyes are affeced by all four conditions.
The problem as ever will be other people in denial - because it is easier for them to cope that way.
It will take a while to get my head around his - but I will.
Thanks for listening.
 
Closer examnation of the eye drops shows that one lot can make your lashes hinner but that the other does he opposite and can even give you an erar "row 2 of lashes. should be interesting,

The scary ones are called Azagra and the less scary ones xalatan. Did you have these shygirl?

I am not one of those who have problems wih eye drops but I seem o be aking many of he medications which can cause a reaction with azagra . Wondered if anyone else had eperience of them?
 
Thank you very much ShyGirl for going to all that trouble on my behalf.

I don't feel that my family or most of my friends will ever be of much hep unfortunately. I seem to attract those who rely on me and esxpect me to support them/

I only had one friend who realised that I also needed some support and he died recently.

I have every faith in my consultant but noone can work miracles and i now have 4 different eye conditions and this latest problem is going to make treatment of the others impossible. My consultant is aware of those reading Centres as he has held consultancies in 2 of hem and is in close touch with one .

I am feeling a little better today. I just have to get on with things and hope for the best - but it was a devastating blow..

I always feel things immediately - not one of those who slowly realise all the implications - but maybe I cone to terms with hem more quickly too.

Every cloud has a silver lining and it has encouragged me to do something about a move i have been putting off for a while.

I really appreciate the kind words and encouragement from you guys - it helped.

Thanks.
 
Sorry to hear you're not in a good place Unbeliever. I think sometimes the person in the role of carer can get forgotten, particularly if you have lived with a condition for a while, everyone else moves on with whatever else is in their life and expects you do will do too.

Only yesterday my brother phoned me for a chat, he asked me how I was and I started telling him about my eye and how it was recovering and I thought I'd probably be ok to keep driving, then I noticed after a minute or so it had all gone quiet and he had switched off, he tried to make a joke of it saying he was seeing how long I'd go on before I realised he wasn't saying anything - yeah really funny that one. So now I feel like I can't talk about my conditon without boring people. That's why I come on here! Sympathy does have a shelf life I'm afraid. Apart from other sufferers who i think you yourself have said are the only ones who truly understand. I've had complete strangers show more interest in me and my recovery the past few weeks than friends I've known for years! Strange isn't it. Some people are only there for the good times I'm afraid.

Please try to stay strong, easier said than done I know. Look if the very worst does happen, you will learn to cope with it as others before you have, we all have a tendency to return to psychological baseline in our temperament when the shock of the new has settled whether it be a good change or a bad change. That's why there's still a lot of depressed lottery winners out there! And positive people who've come through adversity.

What has Mr. C said is the likely prognosis (if he has said anything at all?)
 
I'm sorry to hear about your friend's recent death. No wonder you are feeling so low as dealing with so much at once must have left you in shock. I wish I could offer advice re support but i'm stumped myself and found out today that my sibling won't be coming with me next week as promised.

If you really can't rely on people in your life then making sure you access professional help with your move is paramount.
http://www.rnib.org.uk/aboutus/contactd ... pline.aspx

Try to rest as you've had an upsetting week and must keep your strength up.
 
Thanks again for your concern ShyGirl. It is very king of you but then those who have experienced problems of their own often are more compassionate than others.

If the move I want goes ahead I think it could be very beneficial but I do need to try now before my eyes deteriorate
The people in y life don't mean to be unhelpful and will be included in the move but generally add to my stress with their "headless chicken " approach. I am not just being fussy - others have commented on this too.

Thanks for the link I shsall save it for the future.

The last two problems are on op of my ongoing problems and were the last straw.

Its probably my own fault. I should dhave learnt to look helpless and neeedy years ago! Too late now!

Thanks again for your kind words of encouragement. I really appreciate it.
 
SouthernGeneral6512 said:
There are advances all the time this was 2 years ago ...

http://www.bbc.co.uk/news/health-18980915
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Yes I agree. This is what I always say and truly believe. I am sure that there is a great deal of hope for all you younger folks.

In my case I think it is unrealistic to hope for too much. I am 65 and have had this disease for almost five years.
I was pinning my hopes on a steroid implant but this will never happen now and even the frequent injections will not be possible.
Even if some miracle cure appeared I would obviously not be first on the list.

With four different conditions which can each blind me I don'tthink I stand much of a chance.

There is nothing I could have done o perevent it and i am very grateful for the treatment I have received. Maybe that pill is on the horizon . Who knows? Never say neverut it would be foolish to refuse to face facts.
 
Oh my God, Unbeliever I have just read this thready, I cannot begin tell you how truly sorry I am to hear you have such a struggle on.
I dont know very much about eye diseases, but as ShyGirl has pointed out already research and trials are springing up all over the place and at 65 you are most certainly not old!!
I dont know what to say to you, except that I am hoping and praying that things will improve, you still have a chance to retain some eyesight, you might not go blind after all.
Your family situation is causing you stress as well, I am wondering, would you like to come to the seaside and have a break from it all for a while?? Please let me know.
Big hugs, just wanted to let you know I care x x
 
Unbeliever said:
SouthernGeneral6512 said:
There are advances all the time this was 2 years ago ...

http://www.bbc.co.uk/news/health-18980915
Click to expand...
Yes I agree. This is what I always say and truly believe. I am sure that there is a great deal of hope for all you younger folks.

In my case I think it is unrealistic to hope for too much. I am 65 and have had this disease for almost five years.
I was pinning my hopes on a steroid implant but this will never happen now and even the frequent injections will not be possible.
Even if some miracle cure appeared I would obviously not be first on the list.

With four different conditions which can each blind me I don'tthink I stand much of a chance.

There is nothing I could have done o perevent it and i am very grateful for the treatment I have received. Maybe that pill is on the horizon . Who knows? Never say neverut it would be foolish to refuse to face facts.
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Some people are just about finished by their mid-60s but anyone who reads your posts knows that you still have an enquiring mind and so much to offer :thumbup:
 
SouthernGeneral6512 said:
Unbeliever said:
SouthernGeneral6512 said:
There are advances all the time this was 2 years ago ...

http://www.bbc.co.uk/news/health-18980915
Click to expand...
Yes I agree. This is what I always say and truly believe. I am sure that there is a great deal of hope for all you younger folks.

In my case I think it is unrealistic to hope for too much. I am 65 and have had this disease for almost five years.
I was pinning my hopes on a steroid implant but this will never happen now and even the frequent injections will not be possible.
Even if some miracle cure appeared I would obviously not be first on the list.

With four different conditions which can each blind me I don'tthink I stand much of a chance.

There is nothing I could have done o perevent it and i am very grateful for the treatment I have received. Maybe that pill is on the horizon . Who knows? Never say neverut it would be foolish to refuse to face facts.
Click to expand...
Some people are just about finished by their mid-60s but anyone who reads your posts knows that you still have an enquiring mind and so much to offer :thumbup:
Click to expand...

Bit of ageism and a backhanded compliment there. :shock:

Hi Unbeliever,

I love your positive attitude and do hope that things improve for you in the future.
Thinking of you.

CC.
 
Bit of ageism and a backhanded compliment there. :shock:

Hi Unbeliever,

I love your positive attitude and do hope that things improve for you in the future.
Thinking of you.

CC.[/quote]
Thanks catherine - coming from you that means a lot.

I have to say Sg's comments made me laugh ! I am sure they were well meant. he has made a few supportive posts .
Of course , he doesn't know me and I think he says he ia another Northerner and we can be quite blunt.

Perhaps I can help to chamnge his mind about people in their mid-sixties. we all tend to stereotype base on people we have known. There are several posters here in heir sixies and none of them appear to be ready for the knacker's yard yet!

Strangely enough some of the people with the liveliest minds and most tolerant attitudes I have ever met have been in their eighties. I think it is a great pity that the different age groups don't mix more as we alll have much to learn from each other/
So thenjks again catherine for your kind words anfd hank you too SG.
 
Unbeliever said:
SouthernGeneral6512 said:
There are advances all the time this was 2 years ago ...

http://www.bbc.co.uk/news/health-18980915
Click to expand...
Yes I agree. This is what I always say and truly believe. I am sure that there is a great deal of hope for all you younger folks.

In my case I think it is unrealistic to hope for too much. I am 65 and have had this disease for almost five years.
I was pinning my hopes on a steroid implant but this will never happen now and even the frequent injections will not be possible.
Even if some miracle cure appeared I would obviously not be first on the list.

With four different conditions which can each blind me I don'tthink I stand much of a chance.

There is nothing I could have done o perevent it and i am very grateful for the treatment I have received. Maybe that pill is on the horizon . Who knows? Never say neverut it would be foolish to refuse to face facts.
Click to expand...

Hi there I have just finished work, I'm very tired, but hopefully thats being on my feet all day and not due to age. I am 54, I have had type 1 for 23 years, I have an 11 yr old X and 2 grown up children and I have grandchildren as well :shock:

I am 10 years younger( I think) I cycle, I am a carer for my parent, I work p/t, don't drive so always on the go walking about doing something. I too have eye problems, its the left one, stomach problems, Restleg leg Syndrome and a couple more things thrown in. I feel and know, that I do much more than a 20, 30, or 40 year old :wink: Even though sometimes I feel ready for the knackers yard and the big D has been causing lots of problems, I will never give up and don't you give up either :) there is so much more to give, really there is, and 64 is no age at all, honestly. My dear old dad will be 89 very soon and even though he should be featured on The Antiques Roadshow :wink: , he still keeps going as well. With that horizon, there might be a cloud with a gimmer of a silver linig

There is hope out there, its just finding it, and that can prove to be so difficult at times. All ther best RRB
 
SouthernGeneral6512 said:
TBH some people are just about finished in their mid-20s :D
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I know what you mean sg - my daughter is in her 20s and such a hypochondriac!

I only saw catherin'es post and sgs earlier. _well I do have poor vision but now I have read them all and thank you so much all you lovely people!

Oh WJ how I would love to get away from it all but there are people I can't abandon just now. I do need a holiday but have o wait until I know I will be allowed to relax. Lovely of you to think of me though. How kind you are!

Thamks RRB , no I don't feel old -don't have ime! Had my 65h birthday the other week and only thought about my age then.
Good heavens what happened to the las 60 years? I distinctly remeber being 5 years old. Just a eeny bit peeved that after looking after others since childhood , now have to face all this just as i could have a little more peace - but several of my friends have dies in the pas five years , so....

No anticarb, I didn't ask for a progmosis. I don't need to because of what I have been old in the past for one hing. For another
I didn't hink it was the right time. I trusted him to do what was best for me . I have to go back a week next uesday for tests
of he pressures but i could tell he was concerned and didn't seeany point in putting him on the spot.

When I see him again in September I will ask all th relevant questions - but I am sure he will tell me anyhow .I always believe in giving them time to think and mayb eresearch and speak to other experts. It will probably then be clearer if it is glaucoma on its own account or as a reaction to treatment.
Either way , not good ,but there may be differences in outcomes. I am just really grateful that I am being treated by someone I trust . It is extremely rare for me to trust a Dr of any kind . but after 5 years I think I can be sure of his one.

Thanks again folks. I won't forget it. I have had o cope with quite a lbit in my life as have others here. II could cope with a certain anmount of sght loss- I already have - but i have been almost blind twice and would not even see the point of trying o cope wih it.

As many of us know it is the suddenness whith which these hings can happen which is the frightening thing.

I know it is rare to lose ne's sight with reinopathy nnowadays - its just the muktiple conditions are unnerving.
I will just cotinue o hope for the best . Thanks again. Good to know I have your support.
 
Unbeliever - the offer is there, whenever you are ready, we will work out something, just let me know.
Big hugs, hope you can sense the positive, supportive vibes everyone is shooting your way.
Dont despair, we are all right behind you x x
 
WhitbyJet said:
Unbeliever - the offer is there, whenever you are ready, we will work out something, just let me know.
Big hugs, hope you can sense the positive, supportive vibes everyone is shooting your way.
Dont despair, we are all right behind you x x
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Thanks Judith, Much appreciated. I can sense the vibes actually. It helps. Its just having people understand my fears and not trying to sweep them under the carpet or that everything will be alrigh!
I am not despairing - just asserting my right to think of myself for once.I will cope - until I can't cope if you know what I mean?

I don't know if anyone else with this condition has experienced his but the few people who are aware of it end to TEST MY EYES all he ime. Can you see this , can you see that? Just what can you see? I have that someimes - I have had that for years etc.
Grrrrrrrr.
You just keep on going for the reatments and they will fix it in ime! I know that people domn'tknow what to say - just wish they didn't feel obliged to say anything.

You folks understand . Thayt makes all the difference.
 
Hi

I have an appointment with Mr K my consultant at 11 am, tomorrow morning, 31st July. I still have lines in my vision and the eye still feels'heavy', so dont know if MR K will laser the eye, he might think the eye looks ok to laser. I'm crossing my fingers for some good news :)
After that appointment, I'm to go upstairs and get my ACCU-CHEK meter downloaded for my DSN to look at when she's back from holiday, at the end of the week. So a busy, busy, busy morning in store :roll: RRB
 
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