BLOG – 18th February 2019
OK, so the last you heard was about the awful experiences I have had while going through the process of becoming blind. It has been a tough journey, I won’t deny it – but it’s not without its funny moments. Most of my blogs will attempt to focus on the lighter, more positive side of things because nobody wants to have negativity thrown down their throats.
More treatment followed last week (I will blog about that when we receive the results next month …) but I have to confess I’m struggling with the pain. About 10 minutes before my sight goes my eyes start to hurt like crazy – followed by an agonising pain in my left temple which a guide dog I know picks up on every single time. More about him later.
The last few weeks have been littered with funny moments. I went across to the school which is about 200 steps away. Only to find it was closed. Earlier in the week I went in and the teacher flew at me, hugged me and spun me around. “We’ve missed our favourite reader, haven’t we, class?” So nice to know I’ve been missed. I took two steps forward, intending to move further into the room and banged into the computer – she had spun me around to face the other way and I didn’t know. Of course everyone, including myself, laughed.
I was going across the road to visit an elderly relative (about 500 steps – I live my life counting the steps as I think I said in my last post). So I am busy counting when I heard my name shouted. I paused and the teacher came out and gave me an over enthusiastic hug (she seems to like turning me around). We spoke for about 10 minutes so the upshot was I lost track of how many steps I had already taken. I assumed I was about 250 because that would be by the school gates. Cool. Now, at that point there are no more railings to hold on to. I started to count again from one. Crossed the road safely … grabbed onto the gate. Hmmmm … something is odd here. I stopped and felt carefully all around. When did my nan’s gate get fixed and she have the spikes put on? This was news to me. Went down the path. Now I KNOW something is wrong. What has happened to her path – it feels like ours … Put the key in the door but it won’t fit … groaning, I put OUR key in the door – yep, she had turned me around so I returned to our house – I was indeed, 250 steps away! Now. I had to walk an extra 500. I can see the funny side now but at the time I wanted to scream.
I put my dinner in the microwave the other night when I was the only person in the house. I was puzzled by why it was barely warm. It turned out that I had defrosted the dinner instead of cooking it. I had to do it again.
Even silly things like washing your hair can be problematic if you can’t see. I had no clue that I was washing my hair twice … with conditioner. I mean, it was silky smooth and all that but not very clean. The solution, of course, is to put an elastic band around one of the bottles.
You know, people have often told me I must not go out anywhere unaccompanied. I must not go in a taxi because paying money is impossible.
These and many other ‘helpful’ suggestions are thrown at me on a daily basis.
I refuse to give in. I have a life to live and I will damned well live it. If I have no sight I deliberately ensure I have some notes. £5 notes have a braille notation on the top left corner, I believe and the £10 note has another on the top right. The way to tell if it’s a £20 note is that there is no braille at all on that. I usually spend just under £4 so I know how much change I get in coins (this is especially important as I currently need coins. No notes? No problem. I have been given a special card by my bank which has a notch cut into the bottom of the card. Simply insert the card with the notch pointing to you. “Enter your pin now please.” Simple. Find the number 5 which has a little dot on it and you can figure out easily where the rest of the numbers are in relation to that.
My friend told me she would make the drinks because it’s clearly impossible for me to do so. Wrong again! I have a liquid level indicator which ensures that I am able to know when the water is reaching the top of the cup. It beeps slowly when the water first hits which warns me it’s time to put the milk in – then it beeps like crazy.
What is difficult – and really has proved problematic for the most part recently, is identifying medication. The issue I have is the boxes are almost identical. Now, I’m not good enough at braille to identify which boxes are which. I take two lots of medication which is almost identical. Same size box and the only difference is that one lot of tablets is smaller than the main lot. That’s not easy to identify when you have no sight so I have to put them in a make up bag AND put an elastic band around. If I had a little sight I would put different coloured strings – that might work too. It has to be clear enough for YOU to see.
Now a word of warning here. As crazy as this sounds, please ensure all medication is kept in the same place at all times. Much of mine has ‘walked off’ this week, leaving me under by approximately two weeks. I have a difficult choice now as I am unable to ask the surgery for a further prescription and yet it has been thrown out! So EITHER I take it up to the full 300 mg (which I have to do at some point anyway) or i stick with 150 mg … neither of which are good solutions. I will let you know what happened on my next blog.
OK, so as some of you know, I’m preparing for the worst while hoping for the best. I have jointed a wonderful place which rehabilitates people who have sight loss.
As I think I mentioned in my last blog I am learning braille. This is a bit of a challenge but I am putting 5-7 hours a day practice in. It is really paying off.
I explained in my previous blog that my problems were caused by a major accident where I fell down 14 stairs and hit my head. The hospital (in my opinion) were negligent in refusing to scan my head.
Well one of the problems I’ve had to live with is that it takes me longer to learn things than others might. When I was first introduced to braille they showed me how to form the letters with an egg box and golf balls. BOY was I lost! I found an app which I was able to use during my periods of sight but struggled at first because they use the egg boxes as well. The problem was that I could not figure out how the holes in the egg boxes corresponded with the keys I had to press. Now I do. Suddenly everything clicked. I was struggling but slowly was able to turn the holes in my head as though they were the egg boxes and I figured out how to make all the shapes. I still struggle with N and Z which are mirror images of each other but I can do the rest. I just have to turn the egg box around. I was surprised at how easy it was to identify the keys – but the main problem I had was that I was not confident I had remembered the keyboard combinations from two weeks earlier (I had to miss a week due to an issue with my benefits).
I was so frustrated but I did manage to type the letters without help. When my teacher told me I got 100% I was ecstatic. It would be much easier if I had a braille machine at home so I could practice. I am expecting to bring a machine home next week which will be awesome.
I had two high points in my life this week – first, I was able to help a new member of the class. I never thought I would be of help to anyone again but I have been.
Secondly, the lady who is teaching me has the most wonderful dog. He’s a gigantic Labrador who reaches to my shoulder when he jumps up. That clever dog knows exactly when I’m about to get hit with the pain and even the severity of it. The pain is getting worse so I’m grateful for him recognising it ahead of time.
What do I do in the time my sight is gone? Well, like now, I write my blogs and/or record audio books as well as listening to them. Yes, you read that right. I record audio books. This is perhaps the biggest challenge I have set myself but everything can be done – it’s just more of a challenge.
I will hopefully be going to Lourdes soon so I will update this blog when I get back and let you know if I get any miracles. I certainly need one – even the doctor said that. There have been 64 miracles in Lourdes … why can’t I be number 65. Stay tuned to find out if I’m going to be – or if I’m fated to go blind.
See you all next time when I will update you on my adventures and will let you know how things processed at Lourdes.