Retinopathy- going mad, and so sad I can't ever be a mum

[Saoirse]

Yesterday, I had an appointment at King's College hospital in London and I have 'severe non-proliferative retinopathy'- I just don't know how to approach this. I have to go back in 3 months for my next check and already I feel like I'm on borrowed time, it's just bound to get worse and worse.

My bloods are awful, my last hb1C was 9.7 and in the past it's been about 11. In fact I wouldn't be surprised if it's only appeared to be 'better' because I've had more hypos that have cancelled out the lows a bit in terms of hba1c, but I know full well the swings are the worst thing ever for retinopathy.

I literally cannot manage this thing. I've been haphazardly low carbing for about three years and I do feel much better in terms of energy when I manage to not eat ****, but I comfort eat and binge and have destroyed my body from diabulimia years ago when I was 20-22 and cut back dramatically on insulin- the only difference now is when I binge I don't cut the insulin, I try to estimate enough fo cover my disgusting intake of food.

I feel like a walking dead person already if I lose my sight I'm at a loss as to what meaning life will have for me- I struggle enough as an able bodied person with depression and looking after myself, but I do get enjoyment out of things like being able to go to the cinema and lead an independent life- and I have a lovely family but if I was blind they couldn't/wouldn't help me and I think my control would get even worse as well as mental health stuff my career ambitions all involve lens based media and reading stuff for academic research so I don't see how i could do that either if I was blind.

Finally I feel so bitter because if I ever try to have children it's going to be like russian roulette. I saw a girl about my age (I'm 27) with her lovely baby on the train today and I was smiling and telling her how gorgeous he was and then suddenly I realized there's a hefty chance I will never have any of my own

 

[cteld]

Hi Saoirse,

Welcome from a semi-newbie! I know you've already tried low-carbing, but have you read Dr. Richard K. Bernstein's Diabetes Solution? He addresses many practical problems with low-carbing. He's had some success helping Type 1s prevent lows and even prevent or reverse complications. I know others here have tips for how to control blood sugars - it's unprecedented, the kind of tips you find within the online diabetes community. If one must have diabetes, it's a good time to have it. :roll:

It's likely that you CAN have the baby you want and the life you want, but it may take compromises. Not willpower, I mean - I guess I mean that if we find we're doing things that are not great for us, then sometimes we can gain control by changing something in our lives that is hindering us - that's keeping us in the status quo. Something in the way we deal with people, or manage our time, or how we manage our food (as in, is it easy to shop? To cook? Or are we fighting an uphill battle every time we try to make a good food choice?) I know nothing about your situation, but somewhere there MIGHT be something you can alter that effectively gives you enough control. There will always be reasons NOT to make changes, but try to remember when you think of them that you have some very good reasons TO do so.

I was diagnosed with prediabetes this last year. I live in the States and have no health insurance. I already have complications, so I knew that I had absolutely no option but to make some serious changes in my life, or I will be in a downward spiral of worsening health and worsening debt. I think because of everything that's at stake, and because I get TREMENDOUS support from my family (that's really important), it's been unexpectedly easy to change my diet completely and get more exercise. I have no helpful experience with Type 1s, but again, I have read that with support from the online community, many Type 1s have gained excellent control. Nothing is a sure thing, but I can 100% say that it MIGHT be possible. :wink: I think you are motivated to do it! Little ones are the best reasons of all!

 

[spendercat]

I am sorry to hear you have had bad news and are feeling so despairing. You are very young and I know it feels so unjust and hard when you cannot simply be the same as everyone else, and have normal health.
You have obviously inflicted some damage through poor control, but the realities of your condition are coming home to you. You are young and have hopes and ambitions, and you must not give up trying. Type 1 IS controllable, Dr Bernstein says many complications can be reversed with careful attention to your diet, and I have no reason to doubt him.
Remember the carbs rule - the lower your intake, the lower your margin for error with insulin.
Finally, I had my first baby at 32 and my second at 35. I did not even meet my husband until I was 26. Nor was I thin, so few of us are. You have time before you need to surrender the dream of a family of your own.

 

[Leeds Lass]

My boyfriend had his last laser early in 2010 and every 4 months we have been going back for a check up and on his appointment this week, she was really pleased and has changed his appointments to 6 month intervals instead We were a bit worried this time as he had a bleed about 3 weeks ago but she said its clearing nicely and no need to worry.

His blood results 2 years ago were above 9 and we have got them to between 6.4 and 6.9 over a two year period, his blood pressure is good and has no other problems.

We used to go to a different hospital but got referred to a new one as all they wanted to do was laser him all the time so now we see a brilliant lady who has never felt that more laser would benefit him and up till now he has been fine, no new blood vessels or anything!

I have been a complete stress head at times with the BF's eyes but all you can do is make sure you go for all your appointments and if you have any doubts about treatment you can always get a second opinion and remember it's never too late to take control!

 

[Unbeliever]

Saoirse, I have a daughter about your age and I am well aware of he stress your eneration are under today. Life is hard enough for you wihout having to cope with T1 diabetes.
My daughter has been making herself ll for years by her very determination to acieve her goals. She feels as do most of her friends that that they just can't affford to let anything slow them down in their lives.

And here you are struggling with a long term condition that has o be dealt with on a daily basis. No wonder you are depressed
now it has been brought home to you that you really have to take charge of i for yourself or here will be very severe consequences.
The fact that you such worthwhile ambitions probably means that this realisation has hit you harder.
The fear of blindness is a very potent fear at any age. I know that.
As the others have said you have much to look forward to and many incenives to copwe with your diabetes.

As a T1 you have to cope with the condition on a daily basis - so do T2s but if they choose to ignore it they can fool hemselves more easily. In your case his is not an option. You must deal with it so why not deal with it well?

Don't just let it all get n top of you and hink there is no point in trying - that you are doomed. That isn't the case. Retinopathy does not mean ineveitable blindness - especially not now when there are many exciting new dvelopments and reatments about o be implemented.
You owe it to yourself to avoid further complicaions. You are so young that you are bound o see immense improvemebnts and maybe even a cure for all hese thigs in your lifetime. But give yourself a chance o get hee maximum benefit by taking charge now.

Perhaps it would help if you set yourself short erm goals.? Aim for something reasonably achievable y your nex test. As you know you will be asked about your diabetes conrol and you may even see some improvement in your vision.

Try not to look too far ahead. Just see how hings go. Yoou may be pleasantly surprised . As you knpw you don't see insant results but i am sure you are used to working towards your goals . You will get there, Some don' have the option of trying/

I really don't know how I would have coped wih T1 and ten reinopahy as a young person so I have every sympathy wih you.

On the oher hand you certainly don't seem to be the sort of person who would just take his lying down. You have had a shock.
In the end i tmigh urn out o have been a good hng because you sill have time o reverse things with your diabetes and prevent further complications and stop that retinopathy in its tracks.

Good luck. Small seps maybe and keep us in the picture.

 

[Saoirse]

Thanks, everyone, for replying. There are so many strong, brave and kind people on these boards. It is heartening.

I'm so confused. I mean, what exactly is severe non-proliferative retinopathy? Does it mean loads and loads of bleeding? But not many new vessels growing and that's why I haven't been lasered? (yet...)

I'm aware that I shouldn't tighten up control very quickly as that generally makes things worse (in fact I think that's what triggered this in the first place, when I got rid of most of the soaring highs) but the doctor couldn't advise me what a sensible rate of lowering sugars would be. He told me to ask my GP, who has never heard of the danger of rapidly increasing control and said I should do it as quickly as possible.

If, on an average day, I swing between 7 and 17, with a couple of drops to 3 every week, what should I be trying for in the first instance?

 

[noblehead]

Saoirse,

Take a read of the following which you should find helpful:

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

 

[Deleted member 43917]

hi Saoirse, I am type II but can really empathise with your situation - as I've had mental illness and problems controlling my eating. I've just come across the book called Death to Diabetes and have started to read that - its about a man, also type II, who weaned himself off four insulin shots a day after being in a diabetic coma and made a really good recovery (now getting normal b/g readings). He also gives advice beneficial for Type I's and has a website which you could google which has much of the information on it. So far I've found the book very well written - he's a Christian American engineer and now gives advice to many diabetics about how to manage their condition. I've found reading his site, a bit of a shock because he doesn't pull any punches - but he has thoroughly researched the best way to eat with this condition and how you can have good health.