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Living with Sticklers by Sherie

Hi everyone my daughter is due to go in and have her cyrotherapy on the 17th February and I am absolutely dreading it. She will only be fourteen months 🙁 which is younger then my son was when he had his done. He was 2 It was horrific when we had his done he went down really well but when we come round from the operation he screamed and was rubbing his eyes for over an hour. We couldn’t console him. It was awful. Then the next morning after the op his eyes were so swollen he couldn’t even open them. Not that this bothered him he was running around and playing quite happily. It took a good week or two for the swelling to go down with him and I kept him indoors away from people as best I could. Well I took him to my mum and dad’s on the train and I got some looks from people. It was upsetting, and it will be worse this time with my daughter as I will still have to do the school run. She’s having her operation on the Friday of half term then on the Monday I will be up the school. I’m dreading this and I will keep her hidden in the pram as much as I can. People can be really shocked and I don’t want to explain why her eyes are so swollen to the whole playground.
My son is now 6 and I’m starting to notice how the condition is affecting him. He does after school activities – swimming on a Monday which is great as there are not limitations with this sport and he’s doing really well. Apart from having to get a cab there and back as I can’t drive and it is costing a fortune. He does karate on a Wednesday which he is enjoying but we are only 2 sessions in at the moment so we will see how that goes. Then he does multisport on a Friday which he’s finding fun at the moment. But I think as he is still so young it’s not that competitive yet thank God. But the limitations i am noticing is that when all his friends are playing or doing football he runs a lot slower than them which makes him not want to participate. This is hard for me to watch as I’m sure it is for every parent as you want your child to be good at what they do and happy. This just worries me as I know in time it will get worse. I don’t think it’s as bad for girls but for boys it’s a lot worse as they are all competitive and as they get older it’s even more competitive, so this worries me. I obviously will still encourage him to do sports and participate and I just know its a lot more hard work for him then it is for the other children. I know for myself growing up I really suffered with my joints in my early teens and had physiotherapy, but I think as I was down as partially sighted and had a ‘disability’ I got a lot more support. Both my children are under a pediatrician so I’m glad we have support as when they get older. I want to make sure that their joints are well cared for.
As for me I’m going to start trying to go to the gym again, as I had my kids birthday party in December and the entertainer got us doing a parents jumping race obviously I lost which was very embarrassing. I cannot jump as my joints won’t allow it. I am struggling going up and down the stairs with my knees but O know I am not very active which isn’t helping and I’ve put half a stone on over Christmas which doesn’t help either, I feel so unfit and I am so behind compared to a lot of my friends. I am only 28 and i can’t run, jump, hop, it’s a joke. My body is more like a 50 year old then a 28 year old and I am hoping that watching my diet and trying to exercise more will help my joints. Hope everyone had a good Xmas and New Year and I will post after my daughters operation with a picture.
Sherie

Living with Sticklers by Sherie

My name is Sherie.  I’m 28 and have 2 children aged one and six. I was diagnosed with Sticklers when I was 3, both of my parents do not have Sticklers but me and my younger brother both have the condition. Growing up with Stickers was hard for me. When I was six I lost the vision in my left eye due to pressure building up after an operation to fix my detached retina. So far I have had six detachments in both eyes, and all before the age of ten, I am very short sighted -18 and during my school years I had one to one support which I absolutely hated especially in secondary school. I found it hard to fit in as I always had to sit at the front to see the white board and I had a support teacher with me in every class. I couldn’t do PE and I was not allowed to participate in contact sports. I have always tried to hide the fact that I’m partially sighted and even today very few people know that I am partially sighted.  I think I’m very good at hiding it. Obviously family and a few very close friends are aware but I don’t want many people to know. These days it is becoming harder and harder to hide.  My vision seems to be getting worse especially at night and I have problems with contrast. I have got a small cataract that I’ve had for about ten years but it is slowly getting worse. That’s what Mr Snead thinks could be affecting my vision more at night, as I literally cannot see a thing at night. This is of course a challenge with two young children. I still try and do everything that all my friends are doing but it is becoming harder.

Both my pregnancies were excellent and I didn’t suffer with many joint pains or have any problems in labour thankfully. Both my children do have the condition but thankfully they are only short sighted. I live only 5mins from the school so I don’t have far to walk which is a massive advantage. My knees are getting worse as I am getting older and I currently live in a second floor flat which is becoming a challenge with the stairs. Carrying my baby up and down the stairs is hard work. so I am looking to move soon hopefully. I just don’t want to move too far as I am so close to the school.

This weekend I had a disaster while out with friends that don’t know I’m short sighted. We went to a few bars and my first challenge was walking in high shoes ( lol) but I managed that without tripping or falling over. We went to another town which I don’t know and this was a scary, although as I like going places I know as I know the layout where the stairs are and the toilets, so I can avoid places where I can’t see. But going to a new town I was completely in the dark literally! ( lol) The first bar we went to was OK, all flat level and no stairs apart from two to get into the bar and it was well lit which was great for me. Then we moved onto the second bar and this was an absolute nightmare. As I was waiting in the queue someone accidently knocked my contact lens out 🙁 lucky I had a spare in my bag which is rubbish, but at least I can see a million times better then without it. Friends couldn’t understand why I didn’t just put the new lens in when we got in the club instead of in the queue.  They were embarrassed, I was mortified. We then got into the club and had to walk down two flights of stairs.  These were well lit so it wasn’t too bad. But once inside the club there was a random step in the middle of the room, no hand rail and not lit at all.  I tripped up it but managed to catch myself luckily. But then throughout the night this step became a challenge as I had to go up and down it, every time I wanted to get to the bar or the toilet. After that night out, my confidence has been affected and I think. In future, I will stick to dinner dates or local pubs that I know well.

After loosing my contact lense I’m now stuck with my spare lense which is rubbish I’m really struggling to see. Hope my new contact lense comes soon as this week will be a challenge with this rubbish lense i refuse to wear my glasses in public as there horrific. We are off to butlins for the weekend as well and im stuck with this rubbish lense.