Literally cannot go on with anymore
I can’t cope : Literally cannot go on with... - Glaucoma UK
I can’t cope
51 Replies
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Has something happened, Julie? Hope you are ok. Please don’t give up. Xxx
in reply to mrswaffle
It’s just me being so consumed with the fact of going blind it’s all I think about x
mrswaffle in reply to
I know. Believe me, I know because I get those times, too. I am finding it especially difficult at the moment as I don’t believe ophthalmology is a priority at my hospital (well, one of the consultants, who’s since left, told me that) and, with the pandemic still apparently causing huge problems, I do feel a bit lonely. I can only say, as I got older, strangely, the fear became less. At 71, I am more philosophical than I was at 61. Please just try and get a good night’s sleep and keep going. You’ve got through another day, today. Thinking of you. ♥️
in reply to mrswaffle
I really appreciate you taking the time to message. I really hope the hospital gets better at things for you. The pandemic hasn’t helped at all. It’s so strange how some hospitals have been ok and others are not I guess it’s down to Covid cases in certain areas but it’s scary I worry about this winter coming as well. May I ask how long you’ve had glaucoma x
mrswaffle in reply to
Oh and, by the way, always tell us when you’re feeling this way. We’re all here for one another!🤝
in reply to mrswaffle
Thankyou so much x
mrswaffle in reply to
I was diagnosed when I was 57 (that was in 2007). The optometrist spotted a problem at my routine eye test at the optician’s; he got me to do a visual field test and then referred me to my GP. I may have had the problem before that because apparently the test where they puff air into your eye had always been ok. I will be forever grateful that, because of relocation, I had had to change my optician. Who knows what might have happened. I was living near York when I was diagnosed, so went to York District hospital; they never managed to get my pressures under control. Then I relocated again and saw a wonderful man at Dorset County hospital, who prescribed Azarga and Bimatoprost. So I’ve had some luck (not all of it good!) Hope you’re feeling brighter this morning. I shall be going fir a nice walk in the rain later- I can recommend it! Xx
Oh Julie, I know you are finding all this so difficult but has something in particular happened ? I think you should think about letting your GP know how awful things are for you, you have been doing your best coping with this these last months but sometimes you need more help. We are all here for you Julie. X
in reply to
Nothing has happened Hidden you know bless you what I’m like and when I put a post on like this I then feel so bad because all of you are going through this and I’m whinging it’s not right. So sorry xx
in reply to
You don't need to feel bad about posting how you are feeling and it's because we are all going through this we have empathy and understand. You never need to say sorry to me Julie ,you know I am always here for you. I just wish I could help you feel better x
Julie what happened are you ok
in reply to valfrance
I’m just not coping with this disease the thought of going blind but everyone is so lovely and I don’t like being like this towards all of you x
valfrance in reply to
Julie I don't cope very well either, we can only take of ourselves, and ask the questions to the consultants when we see them. My consultant is always telling me to relax and to stop worrying. She probably thinks I am a bit neurotic really. You just have to carry on, you won't go blind, you are being monitored and you are on the drops. We are all here for you, we are all in the same boat. I am so glad I found this site, I don't feel alone anymore and you are not alone either. We all don't know each other but we all want to help with advice on what we are all doing, on information and understanding. Don't stop posting we need you too. take care valfrance
in reply to valfrance
Thankyou valfrance such a lovely message to me and like I said I don’t like posting negative things as all of you are going through the same and I don’t want to come across as selfish and it’s poor me me me but on the other hand without posting how I feel I wouldn’t have the support from all of you. I agree with you I’m so happy I found this site to. Like you said we don’t know each other but we can all help and support and I’m truly grateful to everyone on here and hope when I feel more positive I can support all of you to x
I’m just consumed with the thought of going blind. I just can’t stop thinking about it but I hate myself for putting it on all of you lovely people on here xx
Sorry to be so harsh, but all the info about myself and my mum was a waste of my time wasn't it?????
Thankyou so much xx
I will read it. Thankyou x
Thanks for sharing your struggles.. I have enjoyed being part of this group. I teach blind and visually impaired children (age 2 1/2-22 years old) how to travel I independently and safely. One of the things that has helped the families I work with is to make adjuastments in their lives the way they see now, these could be simple things like better lighting( Ott lights), dots to feel on the microwave, audiobooks things that are small but very helpful.Also, trying to do the things you really enjoy and just making some adjustments to them.
We are so luck to have each other and can connect to comfort each other.
Some days will be good, others not so much.
Big hugs for your struggles. Take care!
Hi Julie, have you tried going to a hypnotist? It's a bit expensive but it helped me quit smoking and also let go of negative thoughts about being bullied that I held onto for a very long time. If you can't be hypnotized there are other options such as dialectical behaviour therapy which can help with emotions that are out of control. I am going to do this as I still have very negative emotions towards the doctors, nurses and receptionist at my local clinic because they cancelled my appointment even though the clinic was open, it was well before lockdown and all I needed was a pressure test. I hope you can get out of this spiral and find something positive to focus on so you can enjoy life again (())
Hi Julie, I don’t often post much but I was so worried about you and I just hope you are feeling a little better today. If it helps at all I have had glaucoma now for nearly twenty years and for the first few years I imagined every worse scenario it was possible to imagine, but as the years have gone by and at the age of seventy three I can look back and see the stress and anxiety that went with it in those earlier days was much worse than the progression of the disease which is much less than I feared. I do sympathise with what you are going through and hope that with the right support from the medical profession and with the support of your friends on here you will come through this. Please believe me it is not as bad as you fear. Take care and wishing you a good day. x
in reply to Lindfieldtommy
Thankyou so much for your reply do you have open angle. However have you coped for twenty years that’s amazing Have you got open angle.
Lindfieldtommy in reply to
Hi Julie, I do have open angle and at the beginning I found it very difficult to cope with the diagnosis. My mind went into overdrive, totally consumed by it as if nothing else mattered, and as I am also hard of hearing I could only see my life being spent in silence and darkness, very scary thoughts and it was this fear of the future that was so frightening. Twenty years on I can honestly say I am still doing much the same as I was then, I still drive and have just this month passed my three yearly DVLA test for my licence, I still socialise, love gardening and reading, in fact it is now other bits of me that are starting to give up but that is old age. I know we are all different but please try and believe me when I say it is the fear that is the worst and it may help you to speak to someone about this to help you cope with what you are going through. Take care and please keep in touch.
in reply to Lindfieldtommy
Thankyou Thankyou so so much. Everyone has been so uplifting. Wow your definitely an inspiration. How old were you at diagnosis. I hope I manage to be exactly like yourself. I really appreciate you messaging. I’m going to contact my GP about all this. I will definitely keep in touch with you
Lindfieldtommy in reply to
I was in my early fifties when I was first diagnosed and I remember it as a time when I felt my life as I knew it had finished so I know what you are going through Julie. It is also why I am so glad to hear you are going to seek help for your anxiety as I can see how much harm it is doing to your health, much more than your glaucoma is. Your fears are very understandable and I do sympathise, but with the right help they can be managed so you can start enjoying life again. I do wish you well and look forward to hearing how you progress, as I know you will. Take care. xx
in reply to Lindfieldtommy
Thankyou so much. How are you with your gluacoma now xx
Lindfieldtommy in reply to
I am fine right now and try not to think about things to much, but thanks for asking. I hope all goes well for you this week and please let us know how you get on. xx
Hi Julie your feelings are completely understandable. I now have tw/o conditions that are being treated. When diagnosed with AMD this year I cried over the phone to someone on the Macular website. Like this site she was so kind and understanding. I am an otherwise healthy 70 year old. I go out with friends, wear make up and contacts when I'm going somewhere. I just saw my present life slipping away and was consumed with self pity. I still feel like that sometimes when I'm alone and start thinking too much. I'm being treated for both conditions. I can see very well in one eye. I can drive, read etc. I find that it doesn't help to look too far into the future. Look after your health. Do what's good for your eyes . Enjoy the present. It helps. Bad days come and go again. Take care and always share. Love to you x
Hi JulieI hope your feeling a bit better today. Like others have said there are good days and bad days.
Like you I've had more bad days since being diagnosed and I try to overcome them but it's a struggle.
It definitely helps to post our feelings on here because there is always someone who has been through the same thing.
I suffer with anxiety so can identify with how your feeling.
I worry about losing my sight everyday.
Please don't feel alone with this we are all in this together.
Keep talking and posting.
Sending you hugs x
From what I’ve read you still have good sight so thoughts of a future which is unlikely to happen seem to be affecting your current life. People react differently to their situation but many report happy lives, including myself, inspite of some sight loss. Treatment for glaucoma is improving all the time. Maybe you need to look for help for your anxiety outside this forum. You may or may not want to go down the medical route. If you don’t then have a look back through the replies and see what other forms of therapy have been suggested. I’d say, like many others have, that you should try to focus on the present and stay positive but that doesn’t seem to be helping in the long term. Maybe you should talk to someone about anxiety rather than just glaucoma. Thinking of you x
Hi Julie, as everyone else has said, the chances of going blind are very very very minimal. Try to think positive (difficult I know) and remember we are all there for you. Keep smiling. x
in reply to Engima
Hi Engima thankyou for your message everyone is so kind. I just feel so so scared x
Hi Julie. I was sad to read your post. I know how you feel as I often feel like this. It’s just on your mind all the time isn’t it. I try to take one day at a time but I know it’s very hard. We are all here for you and we understand. You will be ok. Xx
in reply to Charliecat123
Thankyou for your reply I do appreciate it I just don’t think I will be ok. Sorry
Oh Julie I wish you could stop tormenting yourself like this. In the moment when I feel panicky I just check I can see out both eyes and say out loud “I can see”. Then I just move on to something else. I have a teen giving me more grief right now than my eyes ever could. Just try change your mindset to something else when you start having dark thoughts.
in reply to Vich81
Hi Vich81 thankyou for messaging. Your definitely right I just need to get into that mindset. Ooh I remember the teenager years. 😂 I have two sons but now they are 29 and 31 still act like teenagers 😂. Xx
Hi Julie, like you I haven’t had the diagnosis for very long so can totally understand your fears. I’m hoping as others have said, we will gradually see with regular treatment that things do not progress quickly with open angle glaucoma and we will learn to live with it. As people have said with treatment statistically there is a very low risk of going blind and even less of losing sight in both eyes. It’s hard though so reaching out for support when you need it is good and what we are all here to do, support each other. I know others have suggested the possibility of you getting some extra support with your anxiety and I wondered if you had considered that? I’m a therapist so am obviously going to be pro therapy 😊. But seriously it can really help having your own space to talk through your fears and you would be amazed at how that can help you reflect and look at things from a different perspective. Also a therapist can give you some coping strategies and techniques to help with your anxiety. The problem is when we are stressed it’s very hard to think rationally and our brain goes straight to all the negatives. Therapy can help with this.
Anyway, just a thought, but I hope you are feeling better today and always reach out to this forum when you need to x
in reply to Spanieldoglover
Bless you so much for messaging. I’m sorry you have been diagnosed I really do think I need to getting some help with the stress and anxiety. I just can’t deal with this anymore. How are things with yourself. I hope it’s all going your way x
Spanieldoglover in reply to
Hi, it would be good to get some help, it’s horrible having to deal with it all on your own and with a therapist you don’t have to worry about them, so can just say and talk through whatever you are feeling. It’s harder to do that with family and friends sometimes as we don’t want to worry them. I’m going for SLT on 18th November and am hopeful that this will keep the pressure down for as long as possible.
I think you’ve had that in one eye haven’t you and are getting it in the other?
It’s positive that we’re getting treatment and being monitored now.
I always get a bit worried about posting a new concern on here, but everybody is so helpful and we’re in it together so don’t ever feel you can’t reach out x
in reply to Spanieldoglover
I’m definitely going to seek help. Yes I did have slt in July in September the pressure in the eye that was lasered only went down to 20 the other eye wasn’t done because consultant said 20 was not lower enough so he wasn’t going to do the other eye even though that pressure was 26 I’m due back on Friday to see if pressure has gone down on lasers eye and then hopefully it has and he will do the other one. In September I was so rushed in the clinic the consultant was over 1 and half hours late and then I felt I was on a conveyor belt. Will speak before you go for your slt and after. Yes it’s good we are monitored. Thankyou again for messaging x
Spanieldoglover in reply to
Let us know how you get on Friday and I really hope you get a positive result and they do your other eye. It’s difficult if you don’t get the time to talk to your consultant and feel rushed. It’s hard enough to try and think about things we want to ask. I’m glad you’ve decided to get some help.
Keep in touch x
Hi Julie,As I have mentioned before, I was doing quite well with my diagnosis for 10 years or so, until earlier this year when I learned I needed trab surgery and then with the recovery after. My stress, anxiety, and future-worry were off the charts. It helped me to work with a therapist, and if you are really feeling that it is difficult to cope I would urge you to consider talking with a mental health professional. The other thing that helped me was committing to regular mindfulness practices. While we cannot change the fact that we have glaucoma, I fully believe that we can change how we relate to the stress, anxiety, and constant worry about the future. But it takes a willingness to go inside and examine and understand how our minds work. All the best to you.
in reply to Derfahrer
Thankyou for messaging yes we did message before. How are things with you now
Derfahrer in reply to
Hi Julie, since the trab surgery I no longer need drops in that eye. The other seems stable for now, with drops (though from previous retina surgery I have some visual field loss). From a psychological perspective, as mentioned doing the continued mindfulness practice has helped immensely.
in reply to Derfahrer
It all seems positive for you though but why did the retina surgery cause visual filed loss
Derfahrer in reply to
I had a partial detachment that developed over some time, without it being detected. Where it had detached I then had (and have) a blind spot. The surgery prevented it from progressing further.
Julie
I think you need some help with the anxiety you are suffering - I know from experience that the more you dwell on things the worse everything seems - it all gets out of proportion.
Might be a good idea to have a word with your GP.
I do honestly understand exactly how you feel - I`ve been there - not with my glaucoma but other things.
Take care.
Love Lynne xx
in reply to Lynne-H
Thankyou Lynne-H I really feel so blessed that so many of you lovely people have messaged me. I do think your right I need to see my GP. Thankyou again x
Oh sweetie. I knew you were going through a hard time from your Facebook posts. I really think others are right and you ought to speak to your GP and explain how you are feeling. It would definitely be worth having some counselling. You don’t want to make yourself ill. Sending hugs 🤗
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