On this day a year ago, I was officially diagnosed with IBD. IBD isn’t something I’m ashamed about and I talk openly about it, not only on my blog but in general too. If you’re not sure what IBD is, I’ve done a few posts about it before such as What is IBD? and How Being Diagnosed With a Chronic Illness Changed Who I Am.
Time has a funny way of running away from you and when you spend each day just trying to make it to bed time, well it can run away even faster. This past year has been full of highs as well as lows. I made it to New York just 2 days after being diagnosed, I moved back to Leicester to finish my degree and I’ve learnt more about myself than I thought possible. One thing I’ve been so thankful of over the last year is the support I’ve received and being able to find a community that understands. My friends and family have been beyond supportive in every respect. There have been times, during flares and such, where I’ve been quite ready to just say “what’s the point in it all?” But actually, in those moments I’ve been lucky enough to have people who make me laugh, and remind me that losing the battle today does not mean that I’m going to lose the war.
I’ve come to realise that my body really is something I took for granted before. Not a day goes by where my body isn’t constantly fighting against itself, yet it doesn’t give in. Day after day it gets me out of bed and gets me through the day. Granted some days are slower and longer than others, but thats okay. I’ve come to terms with the brain fog and the tiredness that so often make me slow, and so have the people around me. I’ve learnt to just laugh at the stupid things I come out with now instead of getting frustrated. I rest when my body tells me to now because life becomes that much harder when I don’t.
I still think that some people don’t really understand IBD or chronic illness and that’s okay because there’s still things I don’t even understand. If you don’t want to know or take the time to understand, then fair, I completely get that because why should you? But theres something to be said for the people who do sit and try to understand, it means more than the world to me when somebody genuinely wants to know if theres anything they can do to help or just want to understand. I’m still trying to find a way to express how living with this makes me feel but knowing there are people who care, and having a huge support system out there who understand, really does help.
So I thought I’d leave you with some of the things I’ve learnt over the last year that I wish I’d been told to begin with.
You will get used to using public restrooms. I had the biggest thing about public toilets before, I hated them and would rather wait to the point of bursting than go in them. However, now I don’t even bat an eyelid now. And I chuckle when I hear people make comments about how they hate them, because that was me. But when you don’t have a choice, you don’t have a choice. I think something that comes with this is the ability to scout out every toilet, no matter where you go. As soon as I go anywhere, the first thing I make sure I know is where all the toilets are as well as where the places to sit and rest are. Soon this becomes second nature and you won’t even have to think about it.
Only going to the toilet twice a day will feel like the biggest victory you could ask for. And thats because it is sometimes. So celebrate it, because that means somethings working, and after weeks, maybe months of dealing with a different outcome (for me it was 10-12 times a day), this is huge. I promise you, you will never feel relief like it, so don’t feel silly about this victory seeming small, I couldn’t quite believe it when it happened to me.
You are not as predictable as you were before. I like to have a plan, to know exactly what I’m doing and when. This is something that I really struggled with after being diagnosed, because I had no idea how my body was going to feel or behave day to day. Unpredictable wasn’t a word I really liked using but I rambled my way through and now I’m in a position where I’m able to plan and make room for the unpredictable. Just because something inside you has changed, in no way means you have to. There are ways around everything and with some patience and lots of trying, you’ll find yourself back to your old self in no time.
Your body has become a home constantly under attack so listen to its battlecry. The quicker you accept this the better. It’s not admitting defeat, it’s admitting change. The hardest thing I’ve had to learn is to actually listen to my body. Rest when you’re tired, don’t skip that meal because you need to do something else, make sure you’re drinking enough to stay dehydrated. Your body is doing an amazing job at keeping you able to function but sometimes it needs help, so help it. Listen to what you need and do it. Don’t do what I did and just push through assuming you’ll be fine, because you won’t be and when your body can’t cope anymore, it will crash and burn and that is the hardest thing to come back from.
So, weirdly, happily anniversary to me I guess. Here’s to another year of learning, living life, and not letting this thing win.