Have you ever had a stomach bug or food poisoning? The feeling of tummy pains, diarrhoea and a concern that you might not make it to the toilet. Well thats how I feel most days for the last 5 years, and it’s incredibly painful. Some days it’s very difficult and the emotional pain can be worst than the illness. I hide away. Im very lucky that I’m self employed as I’m unsure because of my illness if I would be able to keep a job. I wish every day that I could be normal, it’s soul destroying to think I will suffer with this for the rest of my life, there is no silver lining, there is no cure …. and no one understands.
It’s difficult for people to understand MY illness. Friends and Family pass comment about how can I be so tired, but waking up and using the toilet 5-6 times a night is exhausting. There are days when pain killers don’t work , and I’m left doubled over in pain and I’m so tired that all I can do is sleep. I don’t want to live like this, I hate it. Some days you wake up and plan to get so much accomplished, then you shower and all your energy is GONE, completely drained. I try really hard to attend events and friends social plans but some times I can’t and if I do it comes with 2 things. 1. Min of 2 days planning, and 2. Not eating at all that day. I have to take lots of painkillers the night before. Every day I will take anything from 3-7 immonium, which gives my stomach ache. My handbag will have wipes, painkillers and spare under ware just incase I have an accident.
I’m tired, tired of hurting, tired of pain. Tired of the unpredictability, tired of smiling at people when all I want to do is go home and curl up in a ball. But most of all I’m tired of been tired.
My immune system is non existence, IBD is an auto immune disease, meaning that my body is attacking it self. I have had a cold since November. Most people think that IBD is a pooping disease, and yes I am always worried where the nearest toilet is, but its so much more than that, I have to combat issues such as extreme fatigue, anaemia, low vitamin levels because of malabsorption and joint pain, walking down stairs can be very painful for me. My bones and joints make me feel like a 90 year old woman, and all my insides feel like they are on fire. Nausea abdominal pain and fevers that can last days. Life can not always be planned days in advance and any last min plans to leave my house are terrifying for me. I usually won’t go, I hide away at home, away from the scary judgmental world.
I love food, it doesn’t love me. I have learned over the last 5 years what food suits me and what doesn’t. But this changes slightly, e.g high fiber foods use to be a no no but lately they are working really good for me. I’m lactose and Diary intolerant and this sometimes can be difficult, especially dining out.
So for me I have to always let chefs know in advance of me dining. I know some of them think that I’m very awkward. One famous chef calling me a drama queen on social media.
I use to worry what people would think, and that they might think I’m overplaying it or been dramatic. If you look at my social media accounts you would never know I was sick, you would see me enjoying life. But there is a lot you don’t realize when you see me out and about. You may think I’m fine when you see me sitting having a coffee or you may think it’s an ordinary day for me when you see me shopping in SuperValu , what you don’t realize is that every step is a struggle. You couldn’t possibly see the stress that sits on my shoulders, as I determine how much longer I have to stand before I get to my car. There’s no way that you could imagine the fear that haunts me as I pray that I can make it through this activity.
After a flare up, when I go into remission fatigue is the primary troublesome symptom that I have. Its taken me a few years to give myself permission to rest. To not feel guilty about taking a nap. I still keep my days busy, I push my body to do everything it can, some days beyond what it can, because life is short. I don’t like to be bored, I may be chronically tired after a flare up but I’m not lazy.
I have accepted this hand that Iv been dealth. I know life could be worse and I know there are so many people worse off than me. I don’t complain about my IBD any more. It’s a part of me. It’s who I am. I accept this now. It’s life changing for sure, but it’s not the end. I’m a very positive person. I don’t let things or people define me. I am me, I am unique. Each day I wake up with or without pain I’m thankful to be alive. To see my family, to talk to my friends. I’m thankful to have another opportunity to make memories, to be a good person. There are so many positives that come with a chronic illness, you see life different from healthy people. I embrace each day.
May is Crohn’s and Colitis awareness month. I think it’s very important to share my story, since Iv been diagnosed I have read some truly inspiring story’s. There are people who are worse than me. We are all fighting for the same thing…… A cure. My wish for this month is for people to be more understanding and to stop judging.
Don’t judge me, you have no idea what it’s like to wake up each and every day to battle your own body.