this is so hard

[Bonniebear21]

hi guys it’s me again,

I’m really really struggling - I just know what to do.

I’m so upset I’m driving myself and my family no doubt mad.

I have anotonical narrow angles a little bit 🤏 consultants word of iris plataue and I have pressures within normal range

I am having laser iridotomy on Jan 22 as a preventative treatment

I’m just sick with worry all day, I don’t understand what’s going to happen to me In the future and wether this really is preventative or is it just the start of a life long worry that I’m going to loose my eyesight

I don’t know how I am going to manage

I feel

Like I’m in survival mode everyday this is awful

Paula

[Blindbatuk]

Paula, everyone’s situation is different. I’m 55 now and I’ve had poor eyesight all my life really, but it got much worse with Glaucoma in my 30s.

I was also very worried. My kids were babies then and I just wanted to be able to see them get older… more than anything else that worried me sick.

Twenty years on, I think my eyesight has got worse but it hasn’t fallen off a cliff. I can see my daughters (now at Uni) perfectly well thank goodness. I do have issues with seeing in the dark mainly and my peripheral vision is poor all day long. But actually I feel much better, happier today than I did in my 30s because it’s a verrrry slow process.

Everyone’s story is different though. I have open angle glaucoma in both eyes.

Take care. Enjoy Christmas.

[Bazzer65 in reply to Blindbatuk]

Hi Paula

I really feel your pain and worry but please try and not let it take over your life. I am losing my vision in my left eye and there’s no improvement even though I use drops twice a day, had a stent fitted and had cataract surgery! I have normal pressure Glaucoma which is really frustrating as there’s no real explanation why I am losing my vision. I have had the same worries and thoughts as you about my future but whilst I was worrying about that I was missing out on the present so just take one day at a time. Try to meditate, exercise, eat healthy and be kind to yourself

Try and have a good Xmas

[Astilbe]

I have had glaucoma for 30 years, been through a lot of different eye drops and procedures. And 2 operations in the last 8 years. I had raised eye pressures before that, but ideas have changed now and they treat much earlier now.

I remember one doctor saying to me in the early days 'you will not go blind'. And his words have been true so far. I can't see as well as I did in my 30s to 60s it is true. But I am still licensed to drive and haven't lost peripheral vision.

I also find light to be a priority, I don't drive at night anymore and I find that I need the lights on indoors much more often. Other than that I am managing just fine. Yes, I do sometimes think about what lies ahead, I suppose that we all do really. I think that learning quick calming breathing exercises helps to bring down the anxiety if you practice them regularly, they certainly help me.

You will know yourself that getting really wound up only makes things worse and not better. You could ask your doctors for more detailed information/explanations to help you. It does sound that you need more information and explanation. I think that would help. You could write it all down for next time you see them. Even doing that could help in a small way.

I do really feel for you and send you my very best wishes, it is indeed hard to even imagine that you may lose your sight. But very few people who have our types of eye problems do have that happen to them, they types of treatment for all these eye conditions have got so much better over the years. I hope that I haven't rambled on too much, just needed to let you know that I understand.

[Maisie79]

Hi Paula,

I was diagnosed with Normal Tension Glaucoma in January. I’m 45 & have a young family. I’ve spent the year in a freefall spin of panic, stress & bad choices. My mental & physical health have really suffered. Yep, survival mode. It’s exhausting.

I became so afraid of everything I’d almost stopped living. It has swallowed up the year & I’ve sometimes taken that out on the people I love.

I’m finding the hardest thing to adjust to is the uncertainty, the not knowing. But like lots of lovely people on here have said - treatments are improving all the time and taking care ourselves in other ways really can help us now and into the future.

One year on & I’m starting to feel like I’m getting a handle on life again (sort of 😵‍💫 😉). I’m back to jogging, trying to sleep better, improve my diet - reduce stress in any way possible. Building good personal boundaries is key - I won’t say yes to everything anymore.

I’ve found keeping a notebook to take to my appts really helpful - write questions/thoughts before I go and then the answers. Meditation is a powerful tool & so is reaching out to friends when it gets overwhelming.

I do pester my consultant sometimes & make good use of the local opticians! Knowledge is power. And we do have power - over how we live our days - one day at a time.

It’s not easy reaching out. Keep in touch. Best of luck for January. I wish you a peaceful & joyful Christmas 🎄 xx

[Sorshup]

oh Paula, what are we going to do with you? You have been given reassurance about the iridotomies and you must know that worry achieves nothing! I do hope the testimonies of others who have lived with glaucoma for decades have helped you to relax and just enjoy Christmas. Best wishes - loook forward to 2025 !

[Goatiegoat]

Hi Paula! Please don’t worry. I’ve had serious eye problems with frequent attacks of uveitis, glaucoma and just recently Fuchs Dystrophy. It all started in my mid twenties and I’m now 74 and can still see after two trabeculectomies to each eye, cataract surgery, a shunt in my right eye and a corneal transplant in my left. I’ve felt very anxious at times but my consultant reassures me that there’s always something that can be done! I can no longer drive but I can see to read and watch TV and, most importantly, can play with and read to, my grandchildren. Sending love and hugs. You will be fine! Xx

[muddledme]

The only thing I would add is maybe joining Glaucoma UK as their magazines are very informative. The Helpline is also so useful, they can explain so much. The Webinars are listed on the Glaucoma UK website , it is possible to hear past sessions and book ahead for new ones where you can even ask questions of the experts. There is one in January , a Q&A session.

I find all this information has really helped me cope with my glaucoma , so then it is more understandable and less frightening. I do have my moments of worry but this has often also been relieved considerably by the interesting posts on this forum.

Best wishes