Thursday, 17 January 2013

The Crohn Collector

I did a silly thing today. I let something wind me up so much that I nearly burst into tears. At work. In full view of the office.
I heard it on the intestine, that this person has lied about having a condition brought on by years of having either Crohn's Disease or Ulcerative Colitis. This person doesn't have either.
I got upset, because I do. And because I can't begin to understand why someone would want to lie about this.
Crohn's is a horrendous illness to live with.
I hold down a full time job with a Chronic illness. I don't mention this because I expect any thanks or praise for it - if I'm able to work of course I will, I need to learn a living, and would never take advantage of our welfare system knowing I'm able - I just mean to express that although I am working, it doesn't mean it's not a struggle for me on a daily basis to even so much as get out of bed in the morning. I'd love to have the luxury of not having to stress about work and tire myself out and worry about bills. I'd also love to not have had a piece of my body cut out in order to save my life, but that's life. My life.
I understand, as I've come across it at various times in my life, that some people find it a way of life to lie and elaborate on illnesses they do not have. They think it will give them some sort of leg up in life, garner them the attention they so desperately crave, or, and this is the one i'll never personally understand, gain the pity of those around them. Maybe I'm just getting cynical the nearer I come to the big 30, but never at at any point in my life, has any good experience ever followed being pitied.
Now, for those of you who may be reading this realising i'm perhaps talking about you, or someone like you, as i'm sure even you are not naive enough to think you are unique, let me tell you a little bit about what it's like to live in pain on a daily basis. For your information of course, (as you may want to bulk up your story a little), or, in the hope that you may take a moment to realise why what you are doing is offensive and sickening and very, very tragic. Here is a little insight.

6a.m : I wake up and rush to the toilet. This will be about the 5th time I've been this morning. I often worry I've had an accident in the night, although thankfully this has never happened to me (yet).
6.20 : I brush my teeth and shower. This hurts. Everything hurts. It hurts because my gums ache constantly from the ulcers I get when I have a flare up. My bones ache because of the Crohn's related Arthritis I have and the joint pain I suffer constantly.
It hurts to wash my hair because it falls out in clumps and this stings my scalp. My skin prickles all over because it gets dry and painful when I feel at my worst.
6.40: I take a few minutes to calm down and regain my strength because I'm now hot and dizzy and faint from having stood up for so long.
6.45: I get dressed and paint my face. Usually thinking all the while that this is a fruitless exercise because I'm so pale and feel utterly lifeless and that how I feel inside is written all over my face.
7a.m : I think about breakfast. I make a cup of tea then rarely drink more than 2 sips of it because I know I'll have to rush to the toilet again and I can't risk needing to 'go' when I'm on the bus. I think about whether or not I can tolerate food and what the consequences would be if I had a bit of toast. Will I need to throw up in 10minutes time? Will I have to go to the toilet in 20? Can I time both of these things before I leave? My morning is based mostly around my colon and meeting its every whim.

I won't bore you all by yapping on about the remaining 20 odd hours. But that's a snippet of what my day is like before I even leave the house in the morning.
I feel tired all the time. I feel sore and achy all the time. And I feel pain of some description ALL. THE. TIME.
If you are lucky enough to get through the day without feeling like a limp rag on a daily basis, please don't pretend you are hard done by. You have a life so please live it. Don't waste it by wishing yourself in my shoes, because believe me they won't suit you. I have impeccable taste (and tiny feet).
Spending your life wallowing in misery is both incredibly unhealthy and unbelievably unappealing.
Maybe it's because I know how precious good health can be that I feel so strongly about this, but it's heartbreaking to see people around me openly squander something I try so hard to achieve on a daily basis. Normality.
Allow yourself to enjoy life and don't insult others by implying you know what they are going through. Just listen and be there, don't absorb problems as through they are your own.
People don't tolerate lies for long. It's important to remember how hard it ACTUALLY is for people dealing with genuine problems. Please don't pretend you have the first clue what they are going through.
Me, I might look sickly and frail at times, I might rely on medication and pain relief to get me through the day, but I have fighting spirit in doses I've never had before.


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  2. I totally get where you are coming from here. I have suffered with Crohn's now for 23 years give or take a month ot two. What I wouldn't give not even to be diease free but to have a few months without discomfort of any sort, to have energy at all times, to not have to worry about timing things and knowing where I can find a 'pit stop' should I suddenly need one. It is frustrating to see those with their health abuse it. No one can step into our shoes and I sure as hell wouldn't want them to either. But I have a fire inside now I never had, sure I get blue every now and then but I will not stop fighting. I'll take the pain and adapt as well as I can. I get support from those that love me and my kids and beautiful other half are what make me rise each morning. I may not get to travel the world now, but my life is rich in other areas. This is not the end, it may be a pain in the butt but it sure made me who I am today. I take nothing for granted anymore. Keep posting please, reading your blog has made me feel a bit better tonight. Keep as well as possible and take care.