World IBD Day
19th May 2017
Hello. In honour of World IBD Day I thought I would share with you a short blog about life living with Crohn’s Disease. As many out there today reflect on our past, present and future, we all stand together today to help raise awareness for IBD, I believe we must all be thankful and think positive for the life we have. I write this laying on my sofa, house bound and in pain. I have had Crohn’s Disease for 11 years now, 11 years diagnosed, but struggled with being undiagnosed for a couple years beforehand. In the first few years of this struggle I found it hard to adjust to life living with IBD, so independent I was before now to be home and only know comfort from the support of my family. Medication, Side Effects and 2 operations later I was still struggling to live a normal life, fighting each day to be some what normal, today I live a very different life to what I imagined for myself, Crohn’s Disease was this focus point in my life I so wanted gone, but could not run away from. It was at this point in my life, that I realised I would never be like my family or friends, but this did not mean I couldn’t become my own person. So thats what I did, I focused on what I wanted to become and learnt to live with Crohn’s rather than spend my time fighting against it.
I miss the simple things in life sometimes, being able to walk through town and grab a drink from a coffee shop, those of you with IBD will know what I mean….I better not, cuz I won’t be home for another couple of hours and I don’t want to visit every public toilet on the way back. Or doing the simple task of a school run, well I better not eat today as i have to be back at the school gate later and have no access to a toilet, so why risk it?
The Fatigue,Pains,Brain Fog that come with this illness is a huge battle each day, but each day….I don’t know how….I manage to get through it. At the moment I am in a lot of pain, not just from the Crohn’s, but from an unexpected case of Kidney Stones. I have a stent in place and wait for my operation in a couple of weeks, unfortunately these can go hand in hand with the dehydration that comes with IBD, and not being able to drink as much as I would like, or should have been. All because I like to plait safe, just like hundreds of others out there fighting this battle too.
The longer you live with these I think your understanding of them changes, I appreciate the small things and enjoy the times that I am able to be out and play with my daughter, I may have more to overcome in my day but I don’t let it stop me anymore, I do it anyway…I am lucky enough to have a daughter who wants nothing more then to be with her mummy, no matter what we do, A husband who see’s beyond my illness and stands by me through everything, Parents that were there for me from the beginning. My mum and I were on a walk a few weeks ago, having abit of trouble getting round this walk my mum turns to me and says….you are Faye…first and foremost, you will always be Faye first, the Crohn’s isn’t who you are.
Fight IBD together.
Faye Neal Photography