Hey, My names Aron and what you see is what you get! I’m a happy fun loving going person but that’s just on the outside, on the inside it’s a different story…….if you are a frequent reader of this blog then you will understand about what I’m going to say next. I have Crohns Disease which is a form of Inflammatory Bowel Disease. In short some foods I eat give me a great deal of pain. I have another hidden condition called CSS – Centralise Sensitivity Syndrome.
CSS makes a selective group of nerves in your body over sensitive so its just really unlucky that CSS has chosen my bowels to attack, so this means anything that passes through my bowel e.g. food, liquid and wind gives me the most pain I have ever experienced but as always it will get better in time doctors say. However I will always be in some sort of pain as it is a life long condition.. Yes I’m always In pain and it sucks, I wake up in shock every morning it is slowly getting better with the new neurotic pain killers I have been prescribed. CSS & CD work hand in hand unfortunately, so if I have a flair up it will cause me a lot more pain than the average person and it will last longer than a ‘normal’ day of pain. I feel embarrassed when I have to walk around with a walking stick, I know I shouldn’t but I do. I am young (24) so walking around with a walking stick at my age in public is hard. One day soon I will be able to walk without it, if not then I’m hopeful I wont feel embarrassed in the future.
I have a lot of support around me! My cousins have made a real effort to keep me company. Kai and me started playing the PS2 to pass the time, oh yeah sorry I forgot to mention I’m under home rest for the next 4 months! So this should be fun! The game we are working through is Lord Of The Rings Return Of The King. I’ve been playing some old school PS1 games like Bugs Bunny Lost in Time & Bugs and Taz Time Busters, too. Keep yourself busy they say! I have also got a PC/xbox one/Ipad/PS2 so I’m never going to be bored. I also will be doing a lot of researching on a editing software called Hitfilm – this will be taking a lot of my time up due to the fact I want to create a Platform or social media presents/group by making videos on my conditions. I’ll be doing a series of me telling peoples stories about the incurable conditions.
I haven’t suffered from CSS for long so what I’m going to talk about mainly comes from having Crohns. Being a male and having Crohns is challenging! In this day and age yes it’s okay to be male and sensitive but only online or in a support group. What about people like me who’s friends hold ‘banta’ to a high standard? They are ‘lads’ but that doesn’t mean they don’t care! They are my boys. Sometimes though there will be a comment made and I would have to bite my tongue because I’m a ‘LAD’ and get told to stop being so sensitive sometimes. Also shitting myself now THAT is not easy (well it’s easy enough to do it without knowing!) The worst time this happened believe it or not was when I was in bed in a nice apartment I was renting with a beautiful girl. Luckily she helped me clean it up and it only gets brought up when we want a laugh now. As time went on I think being a male and having this condition gets easier, well it did for me because I just accepted that no matter what gender we are, we are all going through something that can’t be cured and I shouldn’t feel embarrassed about anything. I can now laugh about me shitting myself with the boys due to their support. They are also really understanding if I’m on the toilet too long!
Just before I finish up here, I want to say that support is a massive thing no matter what you are going through. The one/two people who make it worth it wakening up everyday is my Mum and my Auntie, the support from these two is what I will always need but my Mum is the real rock star! She is the main reason I’m still fighting. She’s the most caring person (when it comes to family) and I’m so lucky that I have her to help me.
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