Me again

[Pixie74]

I’m feeling so frustrated and angry tonight.. lying in bed crying my heart as I feel useless and no point carrying on.. I’m so scared and can’t get my head around losing some of my sight due to macula dystrophy.. I feel so lonely and just want to give up 😡😢😢

[dinahdough]

Don't be scared Pixie74. You are not alone, there are plenty of people out there who will know exactly how you feel. I recommend you phone the Macular Society - they will be able to offer you information and support.

[springcross]

Hi Pixie. I'm so sorry to hear you're feeling that way. It must be awful for you especially as you live alone and have no-one to talk to about it all. Do you have any friends or relatives that you can talk to on the phone? Have you heard from the Macular Society yet? Sorry about the questions but it sounds like you really need to talk to someone about the way you're feeling. Has your consultant informed you of what they intend to do about your MD? I know it's easy to say but try not to worry too much, you're certainly not alone by a long shot. Sending you a big hug. xx

[jwitts]

I’m so sorry you’re going through this but please don’t feel alone. I think almost everyone on this thread understands your fear and grief. I hope you have a good ophthalmologist and I’m sending all good strong thoughts your way.

[Penelopeflower]

Hello Pixie, sorry that you are feeling so down, we do know how you feel, it is very scary, but reach out and you will get support, especially from the Macular Society, they will be very supportive I am sure. I know how scared I felt when my macular degeneration changed to wet in one eye, by after having about nine injections, it is not nearly as scary as I thought, and the sight improvement is certainly worth it. Try and stay strong, and you will get through this horrid time. Best wishes to you.

[Noelhoney]

You're definitely not alone with your feelings Pixie, I go to bed at night and just don't want to get up anymore, everyday I get awful eye pain headaches and visual disturbances....People are saying to me..well at least your still alive ! But living with declining eye sight is hard for them to understand but we here all understand your situation...I hope you get all the help you need...

[Tetrazzini]

I always get confort knowing that there is always somebody worse off than ne.Hopefully I can inspire you - even a little.

I have "end stage" AMD in both eyes - registered as sight impaired - and struggle badly to read, watch tv and all things you rake for granted.

I have severe COPD - "clinically extremely vulnerable.

I have moderate arthritis in both hips.

I am happy to be alive and for being able to do the things I can do. It is a wonderful life and I am truly gratefyl for all the good things.

Keep your pecker up - tomorrow will be better than today. With best wishes, John

[Noelhoney in reply to Tetrazzini]

Hi Tetrazzini...That's a very positive outlook you have there...would like to know how you manage to fill your days with your condition ! What do you do to get through each day....what are the things you still do ? Perhaps you can give me some hope too that even with vision loss life can still be enjoyed...

[Tetrazzini in reply to Noelhoney]

Some things are impossible - driving, b ooks, papers while others are possible but difficult - tv for example if I sit close to it.Other things just take longer - having a shower and getting dressed taked the best part of an hour from start to fimish. Typing this is a slow business with a lamp, glassrs and a magnierfor exqmple. There are aids but they are not aways as good as yoi would gope. Grdening in the summer is very satisfying - g00d exercise too.

I am a keen music lover and I can enjoy hours of it -no shortness oof beath or pain and I can listeb with my eyes shur!Best wishes, Johm.

[alalex101]

My brothers macular and retinal disease has progressed so that by age 60 he could. I longer work or drive. He is able to do his own self care. He has much joy on life with enough vision to laugh and play with his one year old grandson. He talks with friends and family on the phone and keeps up with all the college football. With a very large screen TV, he sees some of it and hears the rest. I have just survived severe covid pneumonia. Recovery is slow but there is much I really want to live for: my Christian faith, giving emotional support to my family and friends, seeing my gr and children grow. We still have 4 other senses that are heightened when Vision is diminished. I hope my kindly intended comments encourage you. It does sound like you are struggling with some depression and anxiety. Please reach out for help with that possibly to your physician or even a hotline. I’m in USA so don’t know your system. Blessings to you.

[fed13]

What wonderful posts! Deepest sympathy to you, and hugs, Pixie 74. I felt so like you when I was first diagnosed. I had a long chat with helpers at the Macular Society. It made me feel less awful, and so much better. Take it one day at a time!xx

[3furryfiends]

i completely understand your worries and concerns. I felt exactly the same. I sought help from 5 GPs -not one wanted to help.I tried my optician but no use-i was nothing to do with them after the referral!!I tried charities-eye hospital referred me to a charity that had been defunct for years!! I woke every morning and the first thing i did was check my sight!! All i can say is speak to the macular society-i was paired with a lovely counsellor. And be very pro active in your treatment plan.

[midancer]

Hi Pixie, Please do all you can do to make your life easier now. I have learned that all disease diagnoses with me are awful and I cry a lot but soon learn to live with them and count my blessings. a warm shower, a hot cup of coffee talk radio. I am determined to see this journey of mine to the end. Would you consider or already have a companion pet? I've read a lot about full page magnifiers, I love my kindle because I can enlarge the fonts enough for me to easily see them. I am not alone but really worry about loosing my vision and the hardships it would cause on my spouse I don't want to do that to him. Seek all the help you can, your life has value you need to recognize that, seek some professional help if you can and take care, our prayers are with you.

[Edman777]

Hi Pixie74, Sorry for your struggles. One thing you MUST do is to get your depression treated. It's absolutely imperative. This cannot be emphasized enough. Also, understand that medical science is advancing at astounding paces in terms of understanding and curing many retinal conditions. It is quite possible that in the not so-distant-future, there could be a cure for your condition. In the meantime, take care of your mind and body because if one day a cure arrives, you'll want to be able to enjoy it.

[Hidden]

Hey Pixie,

I hear you and even after 6 years of treatments I still have my dark nights of the soul. You have a right to how you are feeling and to grieve your loss...we all do. May I suggest something to you that has helped me live with multiple disabilities.

There is an author and sociological teacher whom I respect, Joseph Campbell. He wrote about challenges and survival and thriving along with a lot of interesting correlations he saw.

One I have tried to live by is the Hero's Journey. These writings approach the difficulty of life on earth and what we face and how/why we chose or not chose to face and attempt to overcome the challenges. It has helped me find reason for living thru this life.

tinyurl.com/y2pftwb6

Hang in there

Holly

[Shimano]

With changes such as partial loss of sight and the possibility of further loss it is not surprising you feel low. It would be pretty odd if you didn’t feel grief at what is a Kind of bereavement. You need support through this hard time and can only echo the advice of others to get in touch with the macular society counselling service. It is excellent so reach out for help. Sending you a virtual hug pixie.

[Becky_MacularSociety Partner]

Good Morning Pixie74,

It has been wonderful to see the support you have got from this community who all understand and have felt the same way as you, and I hope you are feeling a little better.

Just to let you know, we do have a counselling service should you want some professional emotional support, To be referred then you can either contact us on 0300 3030 111 or fill in our online form:

macularsociety.org/form/cou...

Please note, we cannot take a referral over the phone unless we hear their verbal consent.

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

Macular Society

[GondorCalls4A]

Hi my name is Jo Reader and I am a regional manager for the macular society please call me if you would like a chat and advise on 07376 398 916.

You are not alone xxx