Meltdown

I’m having one of my moments again. I’m sorry. Just feel down again and scared

[Lovemy2woofs]

What’s made you feel like this Julie ? Big hugs x

[Hidden in reply to Lovemy2woofs]

Hi I really don’t know just the thought of going blind it consumes me most days x

[JanD236 in reply to Hidden]

When I was losing sight and before my trab/different eye drops that managed to stabilise it I decided that today is the best my sight will be going forward. I refuse to allow myself to spoil my days when things are as good as they’re going to be.

If I lose my sight there’ll be plenty of time to be miserable in future (if that’s what I choose to allow myself to do).

So please don’t spoil today with fear and worry when your sight today is acceptable. Going blind hasn’t happened.

[Hidden in reply to JanD236]

Hi JanD236 Thankyou for your message. How much sight have you lost. How long have you had glaucoma is it open angle do you drive. I did read on gluacoma website that nearly 97% of people keep useful sight for life xx

[JanD236 in reply to Hidden]

I don’t know a figure for how much I’ve lost but I’ve lost a chunk in my left eye (have had a trab in that eye now). In the right eye I’ve lost central vision.

Fortunately the blind spots in my L and R eyes don’t overlap so my vision out of 2 eyes is ok and I’ve passed the DVLA test.

I have open angle glaucoma and was picked up in my mid to late 30s as my pressures were low 20s. In my 40s I was started on drops and I had a laser procedure in my late 40s as I was beginning to lose sight (didn’t help) and then the trab in my early 50s.

I’m 62 now and fortunately my consultant says that things are stable so long may that continue.

[Hidden in reply to JanD236]

Hi you had gluacoma young then really and even though you have been through a lot your still doing well. I have two sons one is 31 and had eyes tested his year my other son is 29 and hasn’t been yeti do worry for them. X

[Lovemy2woofs in reply to Hidden]

Your feelings are natural and understandable , so if you feel like that, it’s just you being human. We all go through these emotions .The plus side is your hospital seems to be very proactive and you are getting seen quickly etc....so take comfort in that .

At the moment I’m finding it scary Re getting seen etc... with all covid still going on .

I had to chase up my appt 😩, got it on the 19th Aug , just hoping it goes ahead 🤞🏻

Considering a two week box was ticked for laser , it works out 14 weeks ..

I’ve not been feeling great either keeping feeling a bit out of it, which comes and goes , occasionally get a bit of eye socket discomfort that lasts a few seconds and some head discomfort, hoping it’s not my eyes but just don’t know, If it worsens I will try and contact someone though who 🤷‍♀️

You have Open angle which is usually slow progressing plus you have thick corneas , You are being seen regularly and hopefully the SLT will do the trick and you can relax .

Trust that all will be well, blindness can happen of course, I’m scared of that too, but trying to remain hopeful that won’t happen .

Take care x

[Hidden in reply to Lovemy2woofs]

Thankyou so much I remember you saying about your appointments being a long wait that’s not good at all. I can understand how you must worry. I know they say blindness is very rare now though but it’s still scar. Take care too x

[Hidden]

Oh Julie has anything in particular made you feel like this? Is it because you've got your appointment soon ? Huge hugs. We are all here for you ♥️ x

[Hidden in reply to Hidden]

Hi Hidden I think I’m anxious over that and it all gets to me the thought of losing sight and when I go I’m scared the pressures have done some damage x

[Hidden in reply to Hidden]

Eye appointments are nerve wracking, you just never know what you are going to be told and it's natural to be scared. I am not a doctor as you know but I don't think in such a limited time and if your pressures are still the same there should be any damage. You have open angle glaucoma and thick corneas, with open angle the damage usually occurs over a long period of time and thick corneas are in your favour too. There aren't any guarantees but statistically I think the odds are in your favour. Once you get a negative idea in your head it sticks and it is difficult to be positive again. I agree the combination of your appointment and the thought of laser treatment have triggered your anxiety. I would love to be able to say something to make you feel better but just know that I'm definitely always here for you. X

[Hidden in reply to Hidden]

Sorry for late reply Thankyou for messaging. You are so lovely I just feel like I shouldn’t be like this towards everyone because you are all going through the same xx

[Hidden in reply to Hidden]

Julie if that's how you are feeling you shouldn't just keep it inside as that's when things fester and it gets worse, you are doing the right thing not internalising it. We are all going through glaucoma together and we all have different coping strategies and at times these fail and you need to just let it all out. I'm sure every single one of us has moments when we feel scared and helpless and that's why we do understand,empathise and are there for you.

I'll be sick with worry next Tuesday before my appointment and I've no doubt at all that you will be there for me. Plus it's nice to know that I'm not the only manic one 😜.

How are you today ? X

[Hidden in reply to Hidden]

Hi Witchie I know exactly what you mean we all have different ways of coping. Everyone is so lovely I will be thinking of you next Tuesday and will chat before then xx

[Hidden in reply to Hidden]

Julie I've just read your last post and messaged x

[Wales99]

Oh Julie. Bless you. Are you feeling down after the football & it’s spiralled? I know with me something can trigger it & then I just get fixated on going blind, etc. Hang in there lovely we’re all here for you. Xx

[Hidden in reply to Wales99]

Hi Wales99 i think I’m just consumed by the fact of going blind I don’t know how to explain it because we are all like this and I’m sorry to burden everyone who is going through the same thing x

[Wales99 in reply to Hidden]

Hi Julie. Bless you. I know, I get like that at times. I’m trying at the moment to not follow any sight loss sites - i was following quite a few on Facebook & found It was depressing me . Is there anything you feel you can do to distract yourself? Or anyone you can talk to? Apart from on here if course where everyone will support you. Xx

[camonline486]

Oh Julie, so sorry to hear that you are feeling down. I think we all can relate to it. I do hope you soon feel better. And as Wales99 said, we are all here for you.

[Sunshine88888888]

Oh Julie bless you! We’re here for you! You are a strong and brave lady, never forget that! This is a tough path we are travelling and we need to support each other! So let’s us know how your doing over the next few days. xx

[Hidden in reply to Sunshine88888888]

Thankyou you Sunshine I hope I can continue this journey with sight xx

[Redshoes15]

Hi Julie, sorry to hear you are having a down time. I can really sympathise as I am the same at the moment. I have a really bad case of sinusitis and feel really rough - the trouble is I have the dreaded clinic appointment on Friday and my eye pressures will probably be through the roof as a result. It never rains but it pours!! Let’s hope we both feel better soon. I hope your eyes are feeling ok and please try not to worry as the stress will make it worse. Thinking of you xx

[Hidden in reply to Redshoes15]

Oh Redshoes that's not good, I've only had sinusitis once and it was horrible, that in conjunction with your appointment is not a good combination. I hope you are feeling better soon and that your eye pressure is ok. Fingers crossed for Friday x

[Redshoes15 in reply to Hidden]

Thanks Witchie, I am trying not to get too stressed but not succeeding very well! xx

[Hidden in reply to Redshoes15]

We all know stress doesn't help but telling your brain that is pointless at times. When you are under the weather anyway it's more difficult to feel good about anything. I get uptight about my appointments too so I understand completely. It's fear of the unknown and what you are going to be told but sometimes it's positive news which is what I try to tell myself. Big hugs x

[Hidden in reply to Redshoes15]

Hi Redshoes15 im so sorry that you don’t feel well. I understand how you feel with stress I’m feeling the same. I hate burdening everyone on here because they all have to deal with it. Thankyou for you message I hope your appointment goes well xx

[Hidden]

Its a horrible feeling ay hope you can hang in there and get into a better headspace soon.

[EthelPledge94]

Hi Julie love and hugs to you. I know the feeling of waking in the morning and thinking can I still see! My SLT on 10th August and I'm getting more anxious by the day. X

[Hidden in reply to EthelPledge94]

I’ve got a consultation for laser on the 27th scares me so much I keep thinking I was only diagnosed in December last year why do I need laser so soon then I think they are doing it to prevent it getting worse because drops are not working it’s just so scary and I know how you feel x

[Ktpink]

Sending you hugs and support Julie, I know exactly how you are feeling just now. I really hope you feel better soon & get all the support you need xo

[callie77]

Hi JulieI know exactly how you feel. I'm the same, it's like being on a roller coaster. Feeling depressed most days. Just existing and not living.

Worry everyday and no way out of it.

Dr. Has now put me on monoprost but am scared to take it in case I get owl eyes like I did before on another drop.

I wish I could get up one morning and not be worried or depressed.

Just know you are not alone in this.

Hope you're feeling a bit better by now.

[Hidden in reply to callie77]

Hi Callie, I'm sorry to see you aren't feeling any better at all. I wish I could say something to make you feel better as you deserve a life not just an existence. Are you taking any drops at all ? If you take the monoprost and you have side effects you can't cope with if you tell the consultant I'm sure he will try to find one you can tolerate.

Always happy to listen if you need someone to chat to x

[callie77 in reply to Hidden]

Hi Witchie thanks for your reply. I've been on cosopt for a while now but not doing the job so they gave me laser but pressures were 26 and 23 last time. Consultant has put me on monoprost aswell now but I've only just started to take it because I'm scared of my eyes changing and irritation. I was on lumigan and something else and they made me look ill.Decided to try monoprost after talking to Trish. See consultant in 4 weeks. Scared he's going to mention operation!!! Sorry for long rant but my anxiety rules my life. Thank you for listening

[Hidden in reply to callie77]

It's a bit of trial and error sometimes until they find an eye drop that works for you, hopefully the monoprost will work with no side effects. I know it's also disheartening when you've been on drops and had laser treatment and your pressures still aren't low enough. You just want your pressures stable and to stay that way, I can relate to that feeling. Fingers crossed your pressures might have lowered by the time you next see your consultant. No one wants an eye op I didn't but I had a trab in Feb and I got through it and I really was very scared. If I get told I've to have another one I won't like it but I know it's doable. My eye area discoloured around my left eye due to the drops I'm on but it's my only side effect so I can live with it. If I'm going out anywhere I use coloured eye cream which disguises it. I used to be upset about it but now I actually just don't care, it's just part of who I am now.

I have lost quite a bit of sight in my right eye prior to diagnosis and a mild amount in my left but since treatment I've lost no more. I just hold onto the fact I am receiving treatment now and the majority of people do not lose all their vision and therefore I won't either.

Anxiety isn't easy to overcome but maybe once your eye pressure is stable and you are on drops that suit you it might improve 🤞.Take care x

[JanD236 in reply to Hidden]

Good advice and I totally agree it’s trial and error. Laser didn’t work for me (well for a few months only) and various combinations of drops hadn’t kept my pressures low enough. However, a combination of Monopost and Cosopt helped my pressures go in the right direction!

[Hidden in reply to JanD236]

I'm glad you now have a combination that works, it's a roundabout journey getting there with glaucoma sometimes. Hopefully yours will stay low enough now . Drops aren't keeping my pressures low enough and neither did cataract ops to open up my narrow angles,so now it's waiting to see if the trab has done its job or not. 🤞

[JanD236 in reply to Hidden]

I did have to have a trab on one eye which has been great and I haven’t had to have any more treatment on that. The other eye is controlled by the drops.

[Hidden in reply to JanD236]

How long ago was your trab? It's great that yours has been fine.Mine was only in Feb and it went well, I had no issues apart from healing too quickly. The consultant wants my pressure at 14 and is going to decide next week whether 16 is ok, if not it will be needling which I feel quite squeamish about. He's already mentioned a trab for my left eye which I am resigned to.

[JanD236 in reply to Hidden]

The trab was about 8 or 9 years ago and my pressure is usually 8 or 9 in that eye. I also healed quickly so there was lots of adjusting the post op drops. I went privately and had excellent care and was seen weekly for quite a while after, which was reassuring as each time drops were adjusted and/or stitches taken out.

I go back every 6 months and the consultant keeps an eye on the bleb as it (or something else?) is thin so I’m not sure if that will be a problem in future.

[Hidden in reply to JanD236]

That sounds like great after care and a brilliant result. It good you see him every 6 months it is a wee bit of reassurance.My consultant is lovely ,he did both my cataract ops privately but I now see him on NHS. I saw him weekly too and he was really good but sometimes things don't go to plan. I have thick corneas so that gives a false high reading.

[Hidden in reply to callie77]

Hi callie77 i know how c you feel I look at other people who havnt got it and think your not having to worry about going blind but not that I’m wishing it in anyone because I never would ever do that. Thankyou for messaging me. How long have you had glaucoma is it open angle do you drive x

[callie77 in reply to Hidden]

Hi JulieI'm the same I look at people and think I wonder if they have glaucoma.

I always think why me. I was diagnosed about 18 months ago. I was told I had open angle glaucoma and I just left the room not knowing what the hell it was.

Have bee n on different drops and had laser, now trying monoprost along with cosopt.

I don't sleep very well worrying about going blind,I have lost a little of my sight in right eye and this panics me. I don't even know when it happened.

I do drive but don't feel confident anymore.

Don't think you are alone, you're not.

I often think of the people on this sight when I feel alone with this disease.

Take care

[Engima]

Hi Julie, so sorry to hear you are feeling down and scared. We all seem to go through this at different times. Try to sit or lie somewhere quietly and visualise a place where you have been happy. Imagine taking a walk there, see the beauty, smell the air, listen to the birds in your happy place. Try holding a healing crystal that sends out love such as amethyst or rose quartz. And remember we are all there for you. Sending you love. xx

[Hidden in reply to Engima]

Thankyou such a lovely message xx

[floki7]

Hi Julie, hang in there girl, you can get through this, we cant do anything practical for you, but, can offer an ear or shoulder to cry on, whenever you feel the need for one. We are all treading this precarious path with many obstacles in the way, but with luck, time and support for each other you will get there, sending my best wishes to you x

[Hidden in reply to floki7]

Thankyou and you too. Will try and pull myself out of this one xx

[Beecalmed]

How you doin’ Julie? The sun is shining here after days of rain and gloom. I felt quite low for a few days too and footie result and racism news didn’t help much either, but sun has cheered me up a bit today! Hope the sun is shining where you are too! Sending lovely vibes to you! X

[Hidden in reply to Beecalmed]

I’m not great really just keep thinking of going blind. Sorry for saying this just feeling so scared. Xx

[Sunshine88888888]

Hi Julie bless you! Looked back over the posts and replies to you. Just wanted to share that on the day my glaucoma was diagnosed I had to have immediate laser treatment and I was booked in for surgery a few weeks later! My life was in utter turmoil at that time, the laser treatment was absolutely fine, over in minutes. Went back for op, was given pre med etc, however surgeon was late so he phoned through and asked the nurse to interview each of us whilst he was on the phone. Anyway he wouldn’t believe I was 48, he kept saying she must be 84. If I hadn’t been so terrified I would have been hysterical listening to their conversation! Anyway when he arrived to meet me, and immediately said your not 84, so I’m not going to operate on your eyes for sound reasons which he shared. So home I went, taking my drops as I should, going for check ups twenty years later I’ve fine obviously with Glaucoma and all that entails but I can see!!! Whenever my eyes react adversely to the drops I let the hospital know and get them changed. I now take dry eye drops as much as I can and bathe my eyes gently, for me this helps. I have never forgotten how I felt initially when I was first diagnosed and still suffer anxiety and worry when things are not going well. So hang in there Julie it will be ok! xx