Firstly a huge big thank you to everyone that voted for me. With your help I was successful in securing the marathon place to run for Ocumel UK. I didn’t expect to get it, I just nagged and begged anyone I came across to vote for me as I didn’t want to lose dismally, It’s incredible the power of social media, that someone with about five friends can get over 1,300 votes! Hilariously I think some people are still voting- you can stop now. Votes closed a month go. But thank you! I also put in for a ballot place so I’m keeping my fingers crossed that that comes through, then I can give my place to the other lady that wanted to run in memory of her brother and Ocumeluk will have two places!
My training is well under way. I am running three times a week and just completed a lap of Richmond park which is seven and a half miles up and down hill. It’s tough so I’m really pleased with that. In fact I was bloody thrilled! It was as if I had just completed the marathon already. Unfortunately there is another 19 miles to go! But I will have ‘buns of steel’ and and less cellulite and flab then when I started so it’s all good. Someone on our Facebook group recently referred to me as ‘the marathon runner.’ I of course loved that and it made me laugh, for days! It conjures up images of a fine tuned athlete having a protein shake on the way to training. Anyone that knows me will confirm that’s not me! I’m more of a rush out of the door with a piece of toast, hoping I’ve got 20p’s for the toilets on the way round and dreaming of what I can eat after all the calories I will have burned, or how many glasses of wine I can have. I will keep you all updated on how I get on. With the training. Not my food and alcohol consumption.
Autumn is always the back to school and back to hospital visits time. My eye appointment is first and I’m interested to see officially how much my vision has changed. How bad does your sight need to be before they say you are blind or partially sighted in it? Yes my sight has got that bad. It is interesting though having an insight into sight loss. There is the side of me that finds it fascinating, but I of course wish it wasn’t my eye and my life I was fascinated in. I have been quite surprised at how quickly over the last two months my eye sight has deteriorated. On holiday my middle daughter was standing on a rock looking out to sea. I was standing a few meters behind and I closed my good eye. The top part of her body disappeared. She was just legs. Legs with a voice. Shouting something about sea gooseberries. Who knew they weren’t jellyfish?!
My husband came and stood next to me. I was still squinting with one eye closed as I couldn’t believe how much of the world was slowly disappearing in front of me. I was trying to imagine what it would be like if this was it for both eyes? How frightened would you feel? What would I see or what would I miss? It had that fascinating terrifying sensation, like that of a horror movie. I didn’t want to look but I couldn’t help myself. I felt relief to be able to open my other eye and see the world in all its glory and colour come flooding back in. My husband looked sad. I don’t have the patience for sad emotions anymore and I was surprised that he felt like that. I wanted to ask him how he could feel sad? Surely he knew this was going on? But I slowly realised that he didn’t. This is my daily life. I have nudges throughout the day that my eye is playing up. I have constant reminders that give me time to process my thoughts and feelings. Because I don’t do daily or even weekly updates with him, or anybody, I realised it’s more of a shock, as perhaps he imagined things were stable.
There are though things that happen that make it obvious to everyone around me that my sight is going. Times when I can’t hide it. My family are all now aware of when I drop a glass, they may ask nicely if it slipped or did I not see where I was placing it. I guess they are also trying to figure out how blind and deaf I’m getting. I will sometimes now just ask my husband to read the menu in a restaurant. My daughters are very good at grabbing things off me and reading instructions. This helps greatly with not overdosing said children or animals on various medications. So well done girls. Playing monopoly with them recently I noticed I kept adding the scores on the dice wrongly. Now I am no maths genius but my basic mental arithmetic has never failed me before. I realised its not that I no longer know what 6 + 4 is, it’s more that I saw 5 + 4. I kept picking up the dice to check. How was I missing some dots? Also right eye makeup? Forget it. I just have to splodge it on and hope for the best.
So since the holiday things have gone from bad to worse. I think I can see out of the left peripheral side, but that’s it. I can no longer see faces in photos, larger font. The lens is damaged and the sight is no longer there. It’s interesting that its taken this long to happen, I had hoped it wasnt going to happen to me. For the first time ever I lay in bed last night worried about my other eye. Suddenly scared I would have an accident or damage it. As I now only have one I’m all for protecting it. I may start wondering round wearing swimming goggles, that would be a good look. Strangely I don’t feel that about my ear. I never worry about losing the hearing in that one, I’m obviously showing favouritism to my eye. Poor ear. I explained to my husband that I’m still bloody lucky as the blind eye is on the same side as my deaf ear. At a dinner party people ask me what side I’m better off sitting on and that’s it. I’m good. Imagine if it was opposite sides? I’d have to ask people wether they would like to sit next to my good ear or my good eye? Do they consider themselves more interesting to look at or to listen to? Good looking but boring bloke to the left. Not an oil painting but fascinating to listen to on the right. Luckily my life isn’t that complicated.
The other thing playing on my mind is the dreaded MRI scans. As you know they are 6 monthly and it’s my Russian roulette time. When they approach the sleepless nights kick in. The inability to see people and miserable moods. My next scan is always before my birthday as I like it out of the way so that I can stop worrying. This means the 6 monthly scan after that is due in April. On April 27th 2018 I will be 3 years post diagnosis. The haunting statement of ‘the average time it takes to get to your liver is 3 years’ hangs over that date. The London marathon is April 22nd 2018. So what do I do? Have my scan before to get it out of the way? Or plan it for after? Either way it’s a shit time and I’m trying to work out what is best. I will be organising the date at the end of October so I need to have it worked out in my brain by then. I’m slowly opting for before so that I will be sleeping, I hope, but then I think if the news wasn’t good would I be in a fit state to run? Or actually I may just end up running bloody fast with all the fear and adrenaline pumped round my body! Any ideas gratefully received.
And lastly, fancy dress or not? If fancy dress it has to be light, I will struggle enough running the marathon without carrying anything heavy around with me. Last time I ran the marathon, I’m not sure if I ever mentioned I’d run one before? But last time I was overtaken by bloody rhinos, hippos, mr men, blokes with great big fridges on their backs?! It was totally demoralising. Anyway, everyone says you tend to get more sponsorship money if you wear fancy dress. So any ideas please or offers to make something gratefully received. I’m crap at things like that and I don’t want to embarrass my kids by turning up with just some loo roll tied around my head.
Quick pet update as people keep asking about Rosie. She’s doing remarkably well for a cat that had months to live. She has brought in more mice and birds than ever and is going from strength to strength. My labradoodle Barney has had an eye op this week so he gets to share my photo in my fetching swimming goggles, the new look for Autumn 17. You saw it here first!
The Marathon Runner!!!