I’ve realised this blog is “Travel, Food and Me” and I’ve not written a single one about me! So this is my life with my lovely Crohn’s Disease…
First and foremost everyone’s disease is different! I have it relatively easy, but it doesn’t stop it being any harder – especially when someone knows someone else who has it so much worse and mine is nothing compared to theirs.
For those who don’t know Crohn’s Disease is a form of Inflammatory Bowel Disease (gross right!). It can affect any part of the gastro system from your mouth to your anus (again, ewww!). It’s an auto-immune disease – in layman’s terms my body attacks itself, all fun and games. Turns out I’ve been suffering from it since I was 16 but not diagnosed until I was in my 20s. And here I am nearly 10 years later…
A lot of people will ask “oh no is it your Crohn’s” when you feel slightly unwell. It’s hard to get annoyed as they mean it in such a caring way but trying to explain that it’s not always that, sometime like them I just get ill. It’s is exhausting. Most people think Crohn’s is a pain in my side that makes me go to the loo a lot. They really don’t know the half of it.
I have a lot of problems thanks to Crohn’s. Some days I can’t stay awake. Fatigue takes over and all I want to do is sleep. I’ll get home from work, cook dinner and sit on the sofa not doing anything and I find myself wanting to go to bed at 7.30pm! I’m 26 years old and the thought of going to bed that early makes me feel ancient. Sometimes when I am in the middle of a flare up I have to sit down in the shower because my body is just too tired. To get across to people how the pain in my side is nothing compared to the exhaustion I can feel.
My joints – wow who knew your joints could feel on fire. When it gets bad I fidget endlessly trying to find that comfortable spot, I’ve been known to be in the oddest positions with limbs everywhere as for that minute it might just stop it. Last Sunday was the first time my Crohn’s has really affected my life (note – I’ve been in hospital, missed my last semester of uni and cancelled so many events) but this was the first time I’ve been out and couldn’t do anything about it. The Boy and I went to see Bear’s Den, and I could hardly stand. I moved around so much, felt so unwell that we had to leave 30 min before then end. I felt ill and upset. My disease ruined someone else’s night and I feel so guilty about it.
My weight goes up and down like a yo-yo! But I made things worse; I put on a bit more weight than I should have so I’ve been working hard to get it off. I’ve managed it WHOOP! I’ve lost a stone since the beginning of the year. The downside – I instantly get asked if I’ve been ill, if my Crohn’s has been causing problem. I don’t get that praise normal people get. I’ve also been told it’s not because I’ve been working hard but because “I’m lucky and my disease helps me loss weight”. But that’s life, sometimes you have to be strong and tell people they are wrong. It can be hard as it makes you second guess yourself.
My diet has changed a lot over the years, not because I was unhealthy before but I have to deal with the consequences of my eating habits. I used to love pasta, I think when I was at uni I had it 5 days a week. Now, I have it once, maybe twice at a push. I used to have a lot of cereal with skimmed milk. Now I don’t even have milk in my coffee. It’s odd, lots of this was just natural progression, some of it I made a conscience decision. I can’t have a lot of dairy as it’s hard to digest so I cut milk so I could have cheese. Sounds crazy but for me it works. And that’s it, for me it works. It makes me happy – I tried to cut dairy and gluten and it made me depressed. I am a foodie and I couldn’t live with a life where I couldn’t eat things. So I go for the little of everything method.
But here I am, I work 40hrs a week, gym 4-5 times a week and have a social life. My life isn’t bad, in fact my life is pretty damn good. I just happen to have this disease but it will not define what I can do. It will never stop me living the life I want, I’m too stubborn for that.
If you’ve just been diagnosed stay strong, half the battle is mental. If you’re suffering, it will be okay, your more than just your disease. 🙂