Struggling with mental health following treatment.

[Britgirl80]

Hi,

I had my first injection a few days ago. Everything has been so fast from diagnosis to procedure and I've been caught up in a whirlwind of appointments.

Now I'm done with the first one, I'm finding it hard to not slump into a depression. I'm usually very active and I've found myself at a loss as to what to do in the days where I can't do the sport I like, languish in a bubble bath, run etc.

My eyes are pretty sensitive so too much screen time hurts and reading is difficult because my attention span feels so short.

I'm not at work due to this and other health concerns that are being investigated, so in the space of a month there's been so many changes and now few distractions to keep my mind off things.

I just feel so low, and guess I needed to just vent.

Thanks for reading!

[Becky_MacularSociety Partner]

Hello Britgirl80,

What you are feeling is really common across people diagnosed with a sight loss condition, I'm sure there will be others who visit our forum who will be able to relate to your feelings.

Just to make you aware we do have a free telephone counselling service. Our counsellors are professional counsellors who specialise in sight loss and can help you with learning to manage with sight loss.

To be referred please fill in our online form:

macularsociety.org/static-f...

It takes a counsellor a maximum of two weeks to make the initial call. Our counsellors are fully trained and the majority have sight loss themselves. Sessions consist of approximately 6 sessions of around 45-50 minutes each.

All the best

Becky

[Penelopeflower]

Hello Britgirl80, your feelings are perfectly natural, it is normal to feel depressed and that everything is happening at such speed. Please be aware though that it is good that you are getting such quick attention for the sake of your eyesight, you will eventually settle into a routine around your appointments, it may be that certain activities are limited to a degree, would be good to check with the consultants in that regard, certainly on a lighter note as long as you are careful with bathing after an injection not to get water in the eye, there is no reason why you cannot enjoy a relaxing bath, in fact anything that helps you to relax would be beneficial. The Macular society are extremely helpful as in their reply to you. You have got the first injection out of the way, having had them for some years now, i can assure you that things will settle into a more positive perspective. Good luck with it all. Best wishes.

[Britgirl80 in reply to Penelopeflower]

Thank you so much for your reply. It's been a very scary time and I feel so overwhelmed by the speed of things, but each day has felt a bit easier as far as self-care.

I'm trying to process everything and the past week has been difficult, but the Macular society have been so amazing with support that I feel more informed and heard.

[Waddy72]

Hello Britgirl80

I completely understand your feelings! I had my 9th injection yesterday and clearly remember my swift journey from sight loss to A&E and injection. It was overwhelming but I now appreciate the swiftness of it and feel content. There is a lot of help and support out there but it does take a while to adjust. Best wishes.

[Britgirl80 in reply to Waddy72]

Thank you so much, it's so reassuring talking to people who relate and understand.

Best wishes to you too!

[Lupin1587]

Hi britgirl80

Sorry to hear this. Think we've all been there.

Reaching out to the macular society is a good idea. They are excellent. I've had counselling with them and it was a very positive experience for me.

You can get down with it all I know. I try not to let it take over my life but I am aware of the emotional impact all too well.

Think about what you can do to feel better - maybe a little walk in nature I find that soothing. Also just listening to the radio lying on the bed in the dark. Something I used to do as a teenager! Maybe an audiobook?

Whatever floats your boat so to speak.

Take care and I wish you a nice relaxing weekend.

[Britgirl80 in reply to Lupin1587]

Thank you, it's been a difficult week since I posted this and I found myself in a depressive slump. I reached out to the Macukar society and have now had my counselling referral accepted. Just talking through my feelings has helped so much!

[Jelbea]

Hi Britgirl - I am so sorry to hear of your struggle with mental wellbeing. You have suffered quite a shock regarding your eyesight and it seems that you have other problems as well. This is all so difficult for you to deal with but try to take it a day at a time and be kind to yourself first and foremost. This bad phase will definitely pass and you will get to grips again.

I do remember being so shocked when being told I had macular degeneration - first in one eye and a few months later the other eye also. After my first injection my husband of 48 years died very suddenly and unexpectedly which made dealing with things much more difficult.

You have some nice positive replies from others and especially from Becky in the Macular Society. I remember phoning and someone there was so kind and listened while I asked all sorts of questions whilst crying buckets. The wonderful empathy I felt was so supportive. I seem to remember that in your earlier posts you did not find your eye clinic staff very helpful and that is so sad. It is mostly specially trained nurses (both male and female) who do my injections and with very few exceptions they are all so thoughtful and will answer any questions I may have.

You are going through a very stressful time but things will get easier. I shall private message you and then if you need any help you can contact me back and I will be very pleased to help where I can. Best Wishes

[Britgirl80 in reply to Jelbea]

Thank you so much for your reply and I'm so sorry to read of your struggles. Your words of kindness mean so much to me.

I've been in a bad way this past week and found that I haven't had energy for anything much. I reached out to the Macular society and started my counselling and it's been such a help already.

I think I was trying to process everything all at once and then vecane so overwhelmed.

Thank you for your offer of support I really do appreciate it 🫂

[Jelbea]

Hi Britgirl180 - Just to let you I have not been able to set up private chat with you. I have contacted HU but unfortunately as it is the weekend emails are not being answered. Hope you are OK.

[SkeetChif]

I know exactly how you feel! Your journey is very similar to mine. This all happened so quickly that I didn't even have time to ask all of the questions I needed answered. I am about three weeks in from my first shot and am looking at getting the second one in about another week. I try and live my life as normally as I can every day and always keep in mind that this condition was diagnosed early and there is a great possibility that with these treatments it can hopefully not progress. It's such a scary situation not knowing where this is all going but we all have to look on the bright side, (no pun intended!) I do believe that attitude and mind-set can really make a difference in life and I am grateful every day that I can still see and know that I am doing all that I can to fight this thing. I know that every day they are coming up with new research and new treatments for this. Today we are so fortunate to have the new medicines that were not available to others 10 years ago. We are all in this together and I believe that you will find ways to live your life as comfortably and happily as you can. It's not going to be easy but I think we can all do it! Sending you love and prayers from the US!!!!

[Britgirl80 in reply to SkeetChif]

Thank you so much for your reply, your mindset is so admirable, I really want to achieve that and just accept that things may change but as a person I can still go ahead and live. It felt like everything just stopped and I couldn't grasp any control. I've spent a week in a depressive slump and really struggled to be able to function much beyond the basics. I started my counselling this week and already I can feel a shift in perspective!

Im so grateful for treatment and the speed and care I've received from the Dr's and nurses. It's all been so quick and overwhelming but each day I'm trying to do something positive to find myself again.

I wish you all the best in your journey! 🫂

[Catseyes235]

With any life changing diagnosis there is a period of loss like a bereavement for the life you’ve lived. It’ll take time to adjust and appreciate that okay you’ve lost some freedoms but you’re hopefully not gone blind! I had an older brother who did go blind as the injections had not yet come into common usage when he was diagnosed. Ten years later my other brother started having injections and two years later I was diagnosed and started injections so prior to diagnosis I’d seen the worst and best outcomes.

I’m sure you’ll find activities to substitute for previous ones for what is really only a few days (I go mad gardening etc in the lead up to injections and just take it easy after. Large print may help on screen but best not overuse as people don’t blink as much when online and eyes can get dry.)

Hope your spirits lift soon!