I am so sad :-(

[WhitbyJet]

On Tuesday this week my eyes were slightly blurry, strange as I havent had this for a very long time, still I was very busy so just got on with whatever needed doing, Wednesday I had a small black spot but blurriness was gone, yesterday I suddenly had quite a few big black blotches floating around in my eye.
I went straight to the eye clinic, had photographs and a scan, I had some bleeds in my left eye, needed lots of laser there and then.
I asked why this has happened, I have had excellent control over my diabetes, throughout 2010 my Hb1ac's were between 5.5 and 5.8, this year Jan 2011 = 5.4, April 2011 = 5.3 August 2011 = 5.2 and the last one 5.2 again. Luckily I dont feel like comfort eating, I do enjoy this low carb eating so do my family although they arent as low carb as I am, they eat potatoes and fruit and porridge.

I have a part time paid job, I do voluntary work in the community,, I have a household with 3 children, a husband, a dog and 2 cats to look after, I exercise daily, my BP is fine so is my cholesterol/trigs and I dont smoke.
The eye surgeon said that I am doing all the right things and if I didnt I probably would have problems a lot worse than an eye bleed.
I said I dont understand, I am almost holding non-diabetic levels, control is very strict, but was told that EVEN THOUGH CONTROL IS EXCEPTIONALLY GOOD, I AM STILL A DIABETIC AND COMPLICATIONS CAN HAPPEN. Having good control means that they are less likely to happen, but they still can and do happen.I already have poor eyesight in my right eye, that was due to years of badly controlled diabetes. but my left eye has so far been unaffected, never had any problem with it before.

I didnt go into work today, feeling all wishy washy, kind of depressed which isnt like me at all, its given me such a shock, made me feel insecure and scared.

 

[Patch]

Sorry to hear that. It is HUGELY frustrating that even when we hold great control these kind of things can happen.

I honestly feel for you.

 

[ClaireG 06]

Sending you ((hugs)) WJ.

 

[Grazer]

Feeling for you Whitby. Stick in there.

 

[Sid Bonkers]

Sorry to that WJ :cry:

You cant be faulted on your present control though so stick with it and hopefully things wont get worse. Could it be that the damage was there from pre good control and has just now surfaced due to some other reason?

 

[SparkJack]

Oh WJ I really feel for you. It's amazing how we try so hard to control our rotten diabetes and then find control is out of our hands.
Well done for not emotionally eating. I would probably have had a duvet day as well.
You are one of my inspirations on this web-site XXX

 

[phoenix]

I'm so sorry it happened.
The doctor's right even with the best control , we still have diabetes.

 

[chocoholicnomore]

I am so sorry to hear that Whitbyjet and really feel for you.
I agree that you are an inspiration to us all. You are always so positive and share some great recipes.
It must be so hard to have so much control and yet still have complications. I really admire your determination and the fact you haven't turned to comfort eating. (If it was me I'd have thought "what's the point" and had big bar (or 2) of high carb chocolate.)
You should treat yourself to something really nice-you deserve it. And try to think positively. Doctor probably right in that it could have been worse had you not had good control.

Stay strong and keep up the good work. You are doing brilliantly and your hb1ac readings are great.

 

[noblehead]

The blood in your eye will eventually disperse and settle at the bottom of the eye, this can take days or sometimes weeks but generally it does settle down in time.

Often when you wake in the morning you may find that the blood will reappear but again it will settle as the day goes on, try not to do anything strenuous for a while and avoid any sudden movements of the head......these were the things I was told to watch out for by my consultant when experiencing a bleed back in 2004.

Good luck!

 

[Unbeliever]

Know exactly where you are coming from with this. Whitbyjet. I was just about to be dischaged from the eye clinic when I suffered a massive bleed.
I had been referred by my GP 18months previously because , in the pre-screening era , he mistakenly thought he could see something on the macular.

It always worries me when I read posts insisting that keeping good control means that complications will definitely be avoided. That is not true . It can happen even with excellent control.
I am sure it will setle in timeif you maintain your excellent control. Untreated diabees creates weaknesses.

You mustn't blame yourself- you have done everything you can for yourself plus, a great deal for others.
I know how depressing it can be... I could just about cope with one eye but when my other eye was affeced i was devastated - and noone seemed o understand. then when I was told that none of the reatment , injections or laser was working despite my good control and he bes efforts of my wonderful surgeon I was almos suicidal.
But I have recovered from that just as you will recover from your shock. Just keep on as you are and let the doctors deal wih the bleeds etc.
Apparently it takes three years of good control to reverse retinopahy. The only reatmen which works for me - steouid injections - generally only lass fr a few monhs but i am hopeful thatthe reatment can keep me going until the good control kicks in.

I am sure you will be fine. Its frightening and discouraging just now but you must remeber that treatments are improving all the time and very few people acually lose heir sigh completely.

It imus be so depressing to have overcome all your initial problems o suffer is setback. of course i undermines your confidence but I am sure you will bounce back . We all need you.I totally agree with Sid and Nigel's comments.

 

[borofergie]

I'm really sorry to hear that WJ.

I usually try and avoid these threads, because I assume that they are all from people with bad control, but to hear this happen to someone with great control like you is a sobering thought indeed.

If there were some sort of medal for outstanding service to the diabetic community I'd nominate you, for your constant stream of low-carb recipes that seem to keep half the forum on the low-carb bandwaggon, and for your constant happy and friendly disposition.

Get well soon.

xx

 

[Serena51]

I am so sorry WJ, life (and db) is just so unfair at times.

You are such an inspiration to so many of us and the reason that a lot of us eat so much nicer food these days. We are all wishing you a giant hug and positive thoughts.

 

[didie]

I am so sorry to hear your news WJ. You are indeed an inspiration and a gentle soul in the sometimes very confusing world of diabetes.

I hope that all will come good for you

 

[gollymax]

Hi WJ
Hope you are feeling better, I woke on Wedenesday morning with my right eye bright red and very sore, like an idiot I went to work, when I was at work I booked an appointment with a GP at my surgury via the internet, the time was given was 4.10pm on thursday 1st December. I was in so much pain with my eye one of my work friends took me to the local hospital after seeing someone at A&E they sent me staight round to the eye clinic, the eye consultant diagnose iritis ( I have had iritis 4 time in the last 7 years) the eye consultant asked me if I have any back pain, I told hime I have back hip and bum pains most of the time. The eye consultant said I may have Ankylosing Spondylitis. I kept my appointment at my surgury and the GP I saw sent me for blood test and xray on my back. I had to go to the eye clinic again on Friday so I had the blood test and xray done.I have had back hip and bum pains for a few years now and just ignored it, I have now got to wait 10 day for the results.
I cant walk very far as I find it uncomfortable on hips and back, my wife brought me a mobilty scooter which I hate using when we have to travel a distance but may be having my eye problem has detected another problem. I hope you feel better soon
Kev xxx

 

[viviennem]

WhitbyJet, I really feel for you! I want to send you lots of big, warm, wraparound, chocolatey hugs!

Viv 8)

 

[Unbeliever]

I often read posts on this forum in which people say they are glad to have been diagnosed - it was a wake up call and the best thing which could have happened to them.

I can see where they are coming from in their personal situations but I could not empathise from my personal experience.

Strange as it may seem ,however, I feel like that about my eye problems. Terrifying at first but without the intervention of the opthalmologist I would have been at the mercy of the Diabetes Specialist Nurse in my practice. and would never have gained the control I have now. In fact I might
indeed, be blind as she insisted that I should have to start taking pioglitazone which should not be given to macular oedema sufferers as it exacerbates the condition. She didnt know that and the GPs would never have checked as she is the last word on all things diabetic in our Practice.

The hospital, doctors ,nurses and technical staff have beeen wonderful and always willing to listen and advise , The Nurse in my Practice is just a nuisance to me and often complicates life for me as she is unable to see the bigger picture . I have never received one piece of useful information or advice from her. I don't trust her and don't see the point of her at all.
So, the hospital , specifically the eye clinic is the place I go to be pointed in the right direction regarding my diabetes as well as my eyes. I would far rather attend the eye clinic for treatment than see the nurse for one of her reviews. Naturally, one is of some use to me the other just winds me up.

The one thing I would say to WJ or anyone else being treated for retinopathy. now, is to be aware
of the possibility of injections to dry up bleeds before laser treatment.

The retina in my left eye is badly scarred by intensive laser treatment when it was too wet. At the time .the hospital I attend did not use injections. You may have read recently that Lucentis has not been cleared for use by the NHS because of cost. Several hospitals use avastin off licence and studies show that it can be just as effective.
If the treatment is not available at your hospital it may be available at another nearby. It was the case in my area but I was unaware of that at the time.If he retina is toowet ie if too much fluid is present the laser may be ineffective. Some hospitals try it first of all without yhe injecion and then with if necessary. I would be wary of intensive laser without an injection. Unforunately it is often the case that treatment is on an emergency basis because of the patient's distress and these matters aren' discussed.

The thing to remember with retinopathy is that the very fact that they screen for it means that there is treatment available - and things are improving all the time.
I know that many contributors to his board have required a little laser treatment and this has solved the problem for hem. Noblehead I know is one of those people.

I dont think anyone would ever accuse me of being a "****-eyed optimist" but although the new treatments don't work for me i still remain optimistic about my condition.

I notice Whitbyjet says that she already has problems with one eye because of poor control in the past/. probably before diagnosis. that is the problem . Many T2s have he condition for years before diagnosis and blood vessels are weakened. The doctor in the hospital was quite right. it can happen despite good control.
Unlike whitby jet I had never had symptoms until the treatment began. The major bleeds I suffered were as a result of my bg control improving {twice} and as a result of taking BP medication- as a precaution BECAUSE of my macular oedema. In other words because of medical intervenion.

This may , I hope , turn out to have been a blessing in disguise for whtibyjet. Further problems may well have been prevented . I do hope so.

We can all understand the shock she must have suffered . When I have been old that alll my efforts to improve my control and some of the procedures i have been treated with have made matters worse
I have wondered wheher there was any poin in continuing with the treatment or any other reatment for the diabetes.
As the doctor told her had she not had such good control she may well have been suffering other complications. The damage to the eyes was probably done years ago. We all hope that this is the last she will hear of it.

I agree that she deserves a medal for her services and I think she has performed another service by bravely posting about this issue which has understandably upset her.
We all know that Whitby jet is certainly not to blame for her problem. There should be no question of blame towards anyone. Things are not black and whte . Complications can occur even with good control . Even where it does appear that the sufferer is to blame for their own condition cause and effec is not always easy to disinguish.
The ruth of the matter is that we can only try our best. . Noone fully understands hese things the worst thing about any disease or disorder is the fact hat our bodies are not totally under our own control .
Hope to hear from you again soon Whitby jet. we are ll rooting for you!

 

[WhitbyJet]

THANK YOU everyone who responded, your kindness is just so encouraging.

I feel better, mentally, still got blotches in my eye, but as some of you said, it will take a while before they clear. The staff at the eye clinic were genuinely upset for me, the consultant said that I have been extremely unlucky. The retinmopathy has stopped in the other eye (the one with bad vision, no new blood bessels have formed in there) and to suddenly start in the up to now good eye despite such tight diabetic control is just pure bad luck. The laser treatment has been successful, I will have another check up next week.
I am nowe foucusing on the positive side of it all, as the consultant said 'heaven knows what may have happened if I had not had such good control' - so I have no other choice but continue as I have been doing and leave the rest of it to fate. I have been doing well, I have reversed my complications, in particular improved kidney function and neuropathy.

I hope I have not discouraged anyone with my post, I think the message is that none of us can afford to be blase in regards to our bg levels. I hope you all have better luck than me.

Thank you all again for caring.
Much love
Judith
x x

 

[Grazer]

Well done Whitby, good attitude. And welcome back!

 

[ladybird64]

Dear Judith

I can only echo what everyone else has said so succinctly, you really are an extremely well respected and well loved member of this forum.

It is very unfortunate that this has happened to you but please try and take some comfort from what the doctor has told you, there wasn't anything you could have done to prevent it and it could have been a heck of a lot worse if you weren't taking such good care of yourself.

It's been a shock but I'm positive you can move past this..you'll be ok.

Have one of these

xx

 

[Sid Bonkers]

Good to see you back on the forum Judith and more positive too :thumbup: