Sight loss, one of my biggest MS symptoms. Never the same from day to day and practically nothing when I am out and about in the great outdoors!
It was a huge obstacle for me at the start, I didn’t understand.
I was told optic neuritis was so uncommon in both eyes, it would almost certainly not happen. Pah, it did. This is why I never trust medical stats to go in my favour. My right eye is always affected when I relapse, my left never recovered from me ignoring it for two years (selfish body part) so when both are being governed by my evil monster, I simply stay at home.
However I have learnt a few things along the way and wanted to share them with people who may be going through the same thing.
Firstly, your not going mad and your imagination is not to blame. I used to repeatedly ask Hubby if this was real, what if its my imagination? It wasn’t.
Not being able to see the numbers in that weird dappled coloured number book, was a sign and guessing makes you look foolish. It may even make the ophthalmologist laugh!
Once all the medical crap is over with and you have your ‘YOU HAVE A DISEASE’ letter, you need to start accepting the help offered, whether you think you need it or not. You do. You really do.
I had an adult social worker for people with sight problems. She gave me some great devices, some ‘bump-ons’ so you can properly use the kitchen stuff again. They also are the keepers of the bright orange tipex, amazing stuff and so useful. I have it all over my white goods.
I have a man in a clock who speaks the time at me on bad days when I press the big button. He sometimes gets mad when you place a book on top of him, he simply repeats himself. Easily solved. I was even given a daylight lamp so I could read to Pop’s again, they are amazing!
One of the biggest things I had to try (yes I don’t like using it) is the signal cane. As I am partially sighted, my cane is half the size of a full white one. It feels odd holding it, but its not for you, its for the people around you. So they know when you walk into them, not smile back, ignore them that in actual fact, you did not see them.
I don’t tend to use mine anymore, I am getting used to ignoring people and people who know me know to call my name and come and touch my arm. I also always have someone with me.
People don’t understand sometimes. I can physically see the person, but not the details of the face, so in-fact the are a faceless body. This is especially so when I am hot or exacerbated.
Its hard, hell I wont lie, its terrifying and debilitating and it does not get easy fast, it takes time. But it will come.
There are many things I am unable to do in the house, when I try I tend to fall, fail or burn myself, but I still try. That’s the key.
Today I put tea on, I got hot water everywhere and burnt my wrist many times but I did it.
One thing that got me is, why does body not understand my right is better than my left? I found out my left eye had been my dominant eye and my body, having MS, had not caught up with the fact it doesn’t work anymore. Now its coming round and relying LOADS more on my right, making my life less stressful when I am not relapsing.
This has been so massive for me, mentally and physically. I want people out there to realise they are not alone. I also want people to see its not easy and although you can’t see it, neither can I!!! (ha, see what I did?!)
I know for MSers, its never the same from day to day, having things like glasses is a complete waste of money (I learn this AFTER spending lots of money) It won’t get better, but you will learn to cope and your body will find ways, like changing the dominant eye, to help you cope.