Sorry to Everyone : Just like to say sorry to... - Glaucoma UK

Glaucoma UK

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Sorry to Everyone

30 Replies

Just like to say sorry to everyone and also Thankyou about my recent post Called I can’t cope. I appreciate everyone’s message s but I feel I’ve upset a valued member of the forum. I don’t know how as I havnt messaged this person I just didn’t reply to them. I don’t want to upset anyone else so a big Thankyou to everyone I wish I could stay because this truly helps me but I’m to worried now on upsetting people on their on gluacoma journey. I wish you all well.xxx

30 Replies
callie77 profile image
callie77

Hi JuliePlease don't leave we all need the help of others at some time in our lives and some people just have a different opinion.

Don't let this put you of there are a lot of people out there that you are helping with your posts (me being one of them). Just knowing there is someone out there that is as worried as I am helps me and let's me know I'm not struggling alone.

Please stay. Hugs x

in reply to callie77

Thankyou xx

Engima profile image
Engima

Hi Julie. Sorry to hear you are thinking of leaving the group. Please reconsider and stay with us. We all need someone to share our concerns and worries with and the journey we are all taking with glaucoma is full of fears for everyone. But the positive help we get from other members is great and helps (me especially) enormously. Your posts also help others who feel the same as you but are afraid to voice it - you have been very brave to share all your concerns and at the end of the day we are all here for you and everyone else on this site. Sending lots of hugs. x

in reply to Engima

Thankyou so much xx

Engima profile image
Engima

You're welcome. x

Lynne-H profile image
Lynne-H

Please don`t leave Julie - we all need each other and I think you need to stay - on your own your anxiety would overwhelm you.

Anyway I would miss you.

Love Lynne xx

Spanieldoglover profile image
Spanieldoglover

Hi Julie, you have no need to apologise. Everyone has different things going on in their lives that we can’t know about, so it’s probably best not to take things too personally. If you find the group helpful then it’s important to stay. It is a place to be able to share your fears and hopefully you have found the group to be a helpful support network. Don’t cut that off at a time when you might need it. We all need help and support at times. I’m sure your honesty does resonate with many of us.

I hope you reconsider x

HMThai profile image
HMThai

Good morning from Thailand....I don't know your full circumstances but you are not alone....I am nearing 70.... living a perfectly normal life every day....I had a major Eye examination last week... Many tests....Biometry,OCT, Visual Field, Gonioscopy.... travelling 600kms..... Reassuring lovely Glaucoma Specialist that I have..... You know life is what you make of it.... For me Glaucoma (familial)....is much more than Eyes...Emotional State

Oxygenation-Circulation

Nutrition

Detoxification

Diet

Meditation

Attitude

Outlook

Insight!

Have a good day and begin to enjoy your life....

Charliecat123 profile image
Charliecat123

Oh Julie don’t leave. You are helping other people who feel just like you do to know they are not alone. Me for one!! Let’s all stick together and help each other. Don’t leave the group..please!!! X

Lindfieldtommy profile image
Lindfieldtommy

Please don’t leave Julie, we all need help and support at times and we are all here for each other in whatever way we can. You helped me yesterday when you asked me how I was, a small gesture but much appreciated and it really made a difference to my day, so please think again about leaving. xx

in reply to Lindfieldtommy

Thankyou so much I do feel sometimes because I’m struggling I can’t seem to help other people so you saying that to me is so kind. Thankyou again for your support xx

frankthebank profile image
frankthebank

Hi Julie. I concur with others on here, please don't leave this group. I haven't commented on them but I've read yours posts and to me it seems obvious that not only are your battling anxiety over your Glaucoma but also depression. So if it helps you in anyway to vent your fears and frustrations on here, then please just do it because there are so many people on here who are here for you and understand what you are going through because on some level we are all facing our own battle and it helps many of my us to know that we are not going through this alone. XX

in reply to frankthebank

Hello frankthebank thsnkyou for such a lovely message that’s so kind of you. Yes it helps me immensely on here and really don’t want to leave. I just don’t want to offend anyone. May I ask how long you have had glaucoma and which type and how is your journey what age was diagnosis and do you drive. Hope you don’t mind me asking. Xx

frankthebank profile image
frankthebank in reply to

Hi Julie. No problem, I'm glad you appreciated the message 😀 Well mines a fairly long story with with eye issues but a short story with Glaucoma. Ive had Uveitis in my left eye for about 8 years but that has now developed into Glaucoma only in the last 6 months, unfortunately though however it developed with a bang and my eye pressure was hitting the high 40's, also I probably had it for a lot longer than before it was diagnosed but due to Covid and missed appointments; suffered a lot of damage. Now I am on quite and aggressive treatment of tablets and eyes drops. I don't have any issues with driving because it's just one eye and have had Laser Treatment 2 weeks ago but as the eye regularly feels uncomfortable I'm not sure if that's had any success, oh and I'm 42. Like you though the thought of losing sight is so scary because I worry about driving, earning money and how I would manage. Also I get some days when my Eye feels fine and other days it aches all day. So I understand your fears because it is such a frightening illness. Please tell me more about your story? XX

in reply to frankthebank

Thankyou for replying frankthebank my gluacoma was diagnosed last December so nearly a year now. I went to the eye hospital because I developed a floater they checked my pressures and they were 34 and 28. 34 is the highest it’s ever been. They never mentioned gluacoma but they gave me some eye drops for a month a sent me on my way. I then thought ok better get my eyes tested this was about 3 weeks later. The optician done an eye test a OCT scan and a visual field. Field test was fine yes I needed glasses then he said I’ll refer you to hospital but never said why. To cut the story short I was told I had open angle glaucoma I was shocked. Ophthalmologist said your optician was very good at spotting this. At the mo I have no visual field damage I had laser in July in one eye went back in September and my pressure only dropped to 20 in lasered eye and 26 in the non lasered eye. I thought he was going to do the other eye but he’s not sure it worked because of pressure only down to 20 so I’m going back this Friday hopefully pressure has dropped and he will do the other eye. That’s about it really. I’m 53 I worry for my sons really don’t want them getting it. Xx

frankthebank profile image
frankthebank in reply to

I think you are doing quite well atm Julie, am glad for you that you were diagnosed quickly and have no damage. I think I've lost about 20% vision in my left eye, tbh I was too scared to ask just how much vision I've lost. 49 was my highest recorded IOP, I've got it down to 15 but only through tablets to stop water production, which tbh have horrible side effects. I just wondered though from my because from my understanding 20 is pretty much a normal IOP and I've read many times from people on here saying thats a bad pressure but unless I'm wrong I don't think it is; for example my good eye with no Uveitis and no Glaucoma is normally at 19 and has been for the last 8 years of testing. So it seems like you responded well to the laser, which is great. Also I just wanted to ask do your eyes always feel uncomfortable or do you generally not notice them? Because I'm nearly always aware of my bad eye and the only way I can soothe it slightly is to wear Glaucoma sunglasses 24/7. As for your children I wish them all the best, and obviously its important that they have regular testing XX

in reply to frankthebank

Thankyou I really do hope the laser has worked. No I don’t feel any pain from my eyes are you sure it’s not dry eye I do get that from time to time but not really a pain I can literally just feel how dry they are they get sore but I use drops for it. My medication I’m on at the mo is Fixapost it’s a combination drop of Lantanprost and Timolol I have to put it in at 7ish in the morning I know most people put them in a night but it’s due to me starting work early that I do them at that time. Thankyou for wishing my children the best. I’m hoping it’s not hereditary I lost my parents so I don’t know if they had it xx

frankthebank profile image
frankthebank in reply to

Thanks Julie I really hope so. The soreness and pain is just one eye so I'm not sure if it's dry eyes, I do get dry eyes though but I stopped treating that when I started the drops, but I'll give it a go, thanks. I do wonder if it's the drops that cause the problem, the pressure, or the vision loss it's hard to know. I wish there was an easy way to take IOP's at home because then at least we could monitor it regularly. I take Simbrimza and Bimatoprost, one 3 times a day and one at night. I hope it not hereditary for them too 🙏 and I also hope you decided not to leave the group. XX

in reply to frankthebank

Hi frankthebank my eyes get sore with dry eye and it can cause blurriness I’m sure it sounds like that you have got and the drops do cause that so I’ve been told. Dry are drops are more of a soft lubricant and do help I really should get into the habit of using them more I tend to leave it until they are really dry stupid I know. I do know that dry eye doesn’t effect gluacoma either try and get it checked. I hope it’s not hereditary as well. I won’t leave the group though I promise x

frankthebank profile image
frankthebank in reply to

Hi Julie ok thanks for the advice I'll give it a try and I'm happy 😃 to hear that you are not leaving the group. Keep us posted how your next hospital appointment goes XX

Anonoms profile image
Anonoms

I wouldn't leave - you probably need to hang in here. Over time you will have other queries. Over an even longer time you will become someone who can calm other people's nerves. It might take time but that's how it is. There will forever, until there is a simple cure, be people learning about glaucoma. There will always be people who hear 'blind' first and do not hear the other information. I think everyone thanks the stalwarts who have been here and kept the forum alive, especially during the dark days when there was one post every three months. So at Halloween lets hear it for the wise women and thank them for their words, wish them fortitude for their journey but know that this is the way it will be. None of us are here forever.

in reply to Anonoms

Thankyou for your message your definitely right with all you say I just wish I could get blindness out of my head

Thankyou it’s due to the hours I work that I do it in the morning but I will ask consultant on Friday and see what he says xx

callie77 profile image
callie77

Hi JulieSo glad your not leaving as you keep me sane just reading your posts and knowing I'm not the only one who has anxiety and depression over this disease.

I have an appointment in a few weeks to see if my pressures have gone down after my 2nd lot of laser and being on new drops.

Im already panicking about it! I hope your appointment goes well for you and I wish you the best. Welcome back x

in reply to callie77

Hi callie77 Thankyou for your message. How long ago did you have your first lot of laser. Was it successful. Try not to panick I know that’s not easy says me who is panicking about Friday. I keep telling myself none of us will go blind but it’s hard isn’t it. I will let you know how I get in xx

callie77 profile image
callie77

Hi JulieHad my first laser in January and 2nd in October. It didn't work for me the 1st time and I don't hold out much hope of it working 2nd time. They actually told me they didn't think it would work. But that doesn't mean to say it won't work for you.

Everyone is different.

It's hard to stay positive but I just want some good news for a change.

I really hope you get good news on Friday and will be thinking of you. I know how you will feel on Friday as I go through it ever time. My anxiety goes through the roof.

You are not alone and thank you for your reply x

in reply to callie77

Oh bless you. My pressure on lasered wye went to 20 I had it done in July and went back in September to be told he wasn’t doing the other one because pressure on lasered eye was only 20. I really hope I get some good news and hope you do to x

Wales99 profile image
Wales99 in reply to

Ditto what Witchie said. Except the bit about Lu! I have a cat who would cross my everything for you I’m sure but she is a bit of a madam! Good luck hun. Let us know xx

callie77 profile image
callie77

Thanks Julie. Fingers crossed 🤞x

Thinking of you today Julie. Lu and I have everything crossed for you 🐕🤞x

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