As many of you know, I have the condition known as AMD (Age-Related Macular Degeneration)
I won’t go into the details of the condition; you can google it for that, or look at previous blogs that I have written.
I like to write about my experience, for people to understand it, both in the carer’s capacity and the sufferer.
As soon as people are diagnosed with this condition, life becomes a challenge.
Firstly the acceptance of it. Sad to say, many consultants or ophthalmologists, don’t understand that when they use the words, “There is no cure, and nothing that can be done I’m afraid” (which many people who have the condition have experienced,) it frightens people badly. They panic, they despair, they wonder what is going to happen and I have had people say that they could not stop crying for days afterwards.
Secondly, life takes on new challenges.
For this blog, I will take just these two, as there are much more in our everyday lives.
The first one, scary as the consultant’s words are, they are not as final as they may sound. Yes, there is no cure at present for AMD, but there could be in the future. But there is so much help, and support that in reality, the consultant’s words should be something like “There is no known cure at present, but as long as you don’t have any other conditions, you will not go blind. And there is plenty of help and support out there for people like you. Let me introduce you to a way to start.”
You could then be led down several routes.
- Ask at reception for details about having a low vision assessment.
- Go online or ask someone to find details about the condition and what can be done to help slow up the process with lifestyle.
- Look up local groups of the Macular Society, and where they meet. https://www.macularsociety.org
- Talk to someone on the phone at the Macular Society.
- There are several groups on Facebook. I belong to two of them. They are https://www.facebook.com/groups/589067591220411/ for the UK. And https://www.facebook.com/groups/amdcommunity/ for the US.
(The information in this blog may not be suitable for other countries, but I hope that it will lead you to see that there is support, and you will find out from the US group.)
So now to the second point from above. Life takes on new challenges.
Yes, it does indeed. Firstly there is the challenge of acceptance. I am not saying that there is never any hope of a cure, but at the time of writing there is not. I have had some people sending me links about treatments that they have had, and it may have worked for them, but scientifically there is no cure.
I have also had suggestions to me that it is emotional and maybe there is something that I am not seeing in my life that needs to be sorted. Someone even suggested that all illness is emotional. I am not dismissing that idea, and yes, I can go along with that, but AMD is a mechanical breakdown, and it needs to be managed until there is a better way. Much the same as managing any other breakdown in our body.
If the emotional side of it grabs you, then, by all means, look at it. If it works for some, I would dearly love to hear about it. Not theory or hearsay, but testimonials of your own experience.
But I am talking to people who don’t think that way, and just want support for their condition. To know how to learn to live with it, and make the most of their new lives, with AMD and hear about how others manage.
So, back to the challenges that AMD can present themselves in our everyday lives. Well, there are many;
- Learning how to manage gadgets, books etc., by adjusting the font sizes.
- There are plenty of hearing tools, such as audio books, and your local library will help.
- Having some visual identification such as a white symbol cane, so that people will understand if you are taking a long time in the supermarket queue or getting on and off the bus.
- Finding ways of continuing your hobbies. With suitable lighting and magnifying tools.
Those are just some of the aids that help. You will find out more as you go along.
Then, as the condition progresses, you may have to make more adjustments.
Up to now I have managed to continue my hand sewing and have been making some quite intricate items. But in the last two weeks, I have realised that I need to find an alternative. I can no longer manage it. I am currently struggling to make my last cushions after doing them for a few years. That is an adjustment. A challenging one, but by being tenacious, I realise that I can make crochet items instead because crocheting is a more tactile activity.
That is just one example. Other examples may be, changing your room around so that you have plenty of lighting or shadow where it’s needed. For example, you may find the TV is better in another part of the room or your chair.
I am finding that my life is enhanced by having this condition. I am starting to work in a local group who do courses for people with visual limitations, and from this, I am making many new friends. I also belong to the local Macular Society group, and sometimes I almost ache with laughter at seeing the funny side of everything.
I have great pleasure writing about the condition because not many people who have it can do that for one reason or another. That way I feel that life still has a meaning and purpose.
We can all adjust to anything in our lives. Most times it is fear that prevents us from seeing that. Whether it is illness, disability, job loss, losing a partner or someone special in our lives and many other life events.
I am not saying that it is easy, I know from personal experience what it is like to be depressed after or during a life-changing event. But what I want to share is that in the end with a positive mindset, and being grateful in our everyday lives for the things we take for granted; it can be done.
I hope that reading this will encourage many people not to despair when diagnosed with AMD. There is much to hope for, and all is well. Just keep making those adjustments and enjoying life. It is possible.