Hello all, I am here again! The problem is I can't sleep. Was up all night, not knowing what to do with myself. I should have gone to play table tennis this morning, but since my game has gone downhill over the past few months I felt no incentive to go and I also felt too shattered. So when it was time to get up I went to bed and slept for a couple of hours. Of course I am worried, of course I am scared, but not to that extent that it should stop me from sleeping. I do not seem to be able to get on with anything. I shall walk this Sunday only because I have to, as I am leading a group of 20 people and I do not want to let them down. Otherwise I would probably not go. I have moments when I just want to cry. I have always coped well with the shocks and knocks in life, but this is getting to me. What can I do to get me out of this negativity? Does anyone else feel like that? So many of you seem to soldier on so bravely. My fist injection is due on Wednesday.
Am I suffering from depression?: Hello all... - Macular Society
Am I suffering from depression?
Hi Ayayay,
Your feelings are absolutely natural.
You might like to have a read of our booklet called 'The emotional impact of sight loss';
macularsociety.org/sites/de...
Please give our helpline a call (0300 30 30 111 9.00am to 5.00pm Monday to Friday) if you would like a chat.
Best wishes
Helpline
Macular Society
Hello Andy
I am here again. After having psyched myself up and prepared myself for my first injection today I was told there is no leakage. Of course, no injection. The scan still showed a swelling and fluid between the layers of the retina, but apparently there no leakage now and no change from the previous scan done on the 12th August when I was told by another doctor that I had wet AMD. The FA a week later showed a slight leakage, according to the technician. I should be pleased as punch at having a reprieve until next month When I have return for anther check-up., but I cannot help wondering - is it wet or dry? Should I have had the treatment to prevent further damage? Should I ask for a second opinion? But how would I go about doing that? Please advise.
Hi Ayayay,
If there is no swelling or fluid then there is no need for an injection. Technically you now have 'dry'. I assume that the hospital will monitoring you and you will have another follow up appointment, just in case a leak occurs?
If you would like a chat with someone, please call the Macular Society helpline on 0303 30 30 111 (9.00am to 5.00pm Monday to Friday).
Best wishes
Helpline
Macular Society
Thank you Andy. The point I was making was that the swelling is still there and also the the fluid between the layers of the retina, though apparently no leakage now. And yes, I will be seen again in 4 weeks time, but I still feel apprehensive about the verdict.
ayayay80
Hi again Ayayay,
If there is no sign of leakage then it is usual not to inject as the injections are there to stop the leakage/bleed.
The swelling is another matter which injections will not necessarily help with.
You must appreciate that we are not medically trained and it is impossible for us to answer an enquiry which is individual to you.
You do have the right for a second opinion; you could discuss this with your GP or the eye clinic.
Sorry that I cannot be of more help.
Best wishes
Helpline
Macular Society
Many of us seem to soldier on bravely especially to those closest to us but we all have our dark moments too. You have made the brave step of admitting to your low feelings and I hope you find support and help with these. You seem to be doing the best you can by keeping so active and interested in life around you but maybe your body and mind are telling you that you just need a bit of time to rest and put yourself first. Sorry, I sound like an amateur psychologist but your post called out to me and the beauty of this forum is that you have many people who understand what you're going through, not least the Macular Society who help us all make sense of what is happening to us! Take care and I hope your walk on Sunday goes well. X
Thank you for that, jayral. At the moment I need all the support I can get. I think it is the waiting and uncertainty that has got to me having waited 11 weeks from my first diagnosis at the optician ( when I was told I had a serious eye condition and would lose my central vision but needed no treatment at the moment and was not referred) to my first injection on Wednesday. It has seemed like a battle to get to this point. And while I waited while my eyesight got steadily worse I became obsessed with checking my eyes several times a day. It just took over. That is probably why I got myself into this miserable state. So yes, I will try and relax. Got a reasonable amount of sleep last night and I feel better this morning. Thank you!
Ayayay, I cried every day and night for 2weeks after my referral and diagnosis. Everything seemed black, I was going to be blind, I was terrified and miserable.
Starting the inj gave me some hope.
Talking to people on here gave me more hope and some perspective. I actually feel lucky now to only have the problem I have. Still fed up it happened to me but it doesn't dominate my life now.
What you feel is normal x it's a bereavement, a loss, a knowledge that the foundation is a bit shaky.
I can't recall it now but there was a post from a lady in the USA who has a website I think its called mymacularjounal she had good tips to coping etc. Have a search for it.
Stress causes many issues - I have short term memory loss because of it - it's why you aren't sleeping. Find ways to calm yourself and focus on the positives in your life. I know it's hard right now but you can do this, get help from your gp or the Mac soc.
Don't beat yourself up, we are all at different points in our journey, soon you will be posting wise guidance to newbies xxcxx
Oh you poor, poor thing, eyesright, having cried for two weeks and two nights. I just have weepy moments that come out of the blue, having always been the sort of person who bottles everything up. I speak very little to my friends, keeping my inner thoughts to myself - being regarded by them as a bit of a loner. But that too is stressful and sometimes I get angry or impatient with them.
You hit the nail on the head when you say that the foundation is a bit shaky. The waiting, the uncertainty of it all gets to me. Because during my FA the hospital concentrated so much on my right eye (my good with dry AMD, though it is far from good) I now I fear that it is turning to wet too. You see, here I go again, assuming and being obsessed with the whole miserable thing. I hopefully get to know the facts on Wednesday.
But I have taken notice of what you and others on the forum have said. I tried to relax myself before going to bed last night and I actually got a reasonable night's sleep. So thank you again.
No worries ayayay. This is the only place I "confess" as like lots of us I am seen as strong and positive by those around me. And mostly I am ! Need to let the fear out someplace though otherwise it festers.
As my nan would say. Chin up, one foot in front of the other xx Wednesday will be here soon and come what may you will deal with it. We are all here for you anytime x
I'm 29 years old and I'm at injection #27 between both eyes.
I promise, you'll be ok. It's hard at times but keep telling yourself it'll all get better. The power of positive thinking is an incredible thing.
Sending more love than you'll ever know.
Steph
Good Morning, Steph. Sending me your love touched me greatly. You are still so young to face this awful condition, although you may say, it could be worse, which I suppose is true. I am at the other end of the scale being more than 50 years your senior. I thank you for your kind thoughts. It all helps to bring things into perspective and I wish you all all the best on your journey.
Wow you brave girl what positive advice you give💜 Hugs from Squinty xx
hi from the "states", the first year after the diagnosis I stayed inside my apartment in the dark, blinds closed. I was an award winning and collected photographer. I had a successful career that was my life for 35years...i had a lot to grieve knowing that the one constant love of my life is fading as fast as AMD; no more work, nor shows and if I find a job now it's low wages and my sight usually gets worse straining it on a computer.
yeah I grieved a full year, insomnia is a big part of grief. Give yourself time to go through this experience, the highs and lows, follow the doc's suggestions and change your diet according to doctor orders.
you'll get there
Holly
Thank you, hollyg - and now I am getting all weepy again.
I am so sorry to hear of your loss of a wonderful career. I understand how hard that must have hit you and how alone you must have felt, although being well past retirement age I am spared the anxiety of finding work.
I am known by my friends as far too independent for my own good despite heading for my 80th birthday, a no-nonsense, tough cookie who gets on with life. Little do they know how vulnerable I feel as I keep my inner thoughts to myself. I know if I were to talk to them about my inner struggle they would not understand and would only see it as an opportunity to tell me of their own petty little aches and pains.
So it is good to hear from people who do understand and who have gone, and are still going, through the roller-coaster journey of AMD. Thank you so much.
Dear ayayay80
OMG that's exactly like I felt when I was diagosed a couple of months ago, it was devastating news for me. It was the day before I went on holiday to Dubrovnik and I everywhere I went kept checking my eyesight. I was diagnosed with dry macular degeneration in the other eye as well. I'm an active person as well and play badminton but it hasn't stopped me playing, you just have to get on with it. I had my first injection a month ago and we all react differently. They tell you it's a doddle but it's not. The injection itself is very quick but the after effects are uncomfortable. The best thing is to go to bed afterwards and close your eyes. I've just had my second injection last Monday and the good news is there is an improvement already, I might only need 3 or 4 instead of 8. You must do your walk tomorrow and please let us know how your injection goes. It will help in the end, we are lucky to have them. 6 years ago we would have had nothing. The nhs are marvellous. Where are you having your injections? Good luck darling and mega hugs from Squinty, I know exactly what u are going through. You must get out n about otherwise you will stay at home stressing xxxx
Thank you squinty. I did do my walk today and the group enjoyed it and so did I. Now I wait for Wednesday to come along so that I will learn what is planned for me. I can then adjust my activities around it.
I'll keep my fingers crossed for you that you may not need too many injections. I send you my best wishes.
Dear Ayayay80, great, so pleased you did your walk. Just for your info, activities can be commenced probably a couple of days after injection, or even just one day. It really doesn't hamper activities, except perhaps the day after injection, and maybe in some cases a couple of days after. Good luck on Wednesday and let me now how it goes. Are you in London?
Best wishes and hugs from Squinty x
Dear squinty. Had prepared myself mentally for my first injection, but the consultant said there was no leakage, though the swelling and fluid between the retinal layers is still present. He insisted it was dry AMD in both eyes and asked me to come back in 4 weeks time to check it out. The previous doctor I saw about 3 weeks ago said it was wet AMD in my left eye and the FA showed slight leakage, according to the technician. I still wonder why so much time was spent on my right eye during the FA instead of the left which is the "bad eye". Although I should be pleased for the reprieve I cannot help wondering whether I should seek a second opinion. How do I go about it? Ps, I live in South Yorkshire. Do you know of anyone else who got such contradicting and confusing information?
Best wishes
ayayay80
Wow, very confusing for you. I think I would ask to speak to the manager of your eye clinic. Set out the contradictory info you have been given and ask them if you can be given another opinion.
If they won't try asking your gp for a referral to another NHS eye clinic (you may have to travel a bit) I believe it's called "any qualified provider" ie yiu are not firced to use your local hospital.
The only other option is to pay privately I guess (for diagnosis then back to NHS for any treatment?).
I do think your clinic manager will probably be accommodating though.
I have to say, my diagnosis changed, from optician thinking wetmd both eyes, to emergency clinic saying not wetmd might be split retina left eye only, to finally brvo left eye right ok. But I understand how worrying mixed messages are. Hope you get on ok and get info that gives you some sense of certainty and trust x
Hi ayayay80 good u got a reprieve 😄 Exactly the same happened to me they won't do injection until it's ready and you are below a certain criteria for injection. I did have a second opinion and the eye must have got worse so they sent me back to emergency dept in hospital as it had leaked. You just need to be checked every month and I'm sure it will be fine. I would call you but I dont know how to reach you cos I'm will reassure you xx
I went privately at London eye Hospital in London expensive but it really put my mind at rest. The guy I saw was mr Kashif Qureshi google him X
Thank you squinty and all you wonderful people who have given me so much support. I am sure all will be fine. I am still considering whether to seek a second opinion I'll keep you posted on my progress - if that is the right word for it as the only thing that seems to be progressing (steadily, not drastically) is my poor reading ability. Must use bright lights for all close-up work. Apart from that I now feel relaxed about the whole thing and get on with life so my next post will go under a new heading. Thank you again. I wish you all the very best and hope that the forthcoming strikes will not interfere too much with your treatments. xxx
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