If anything, I know this to be very true.
My last storm was last November. I was severally dehydrated yet still flaring like there was no tomorrow. I was thin, pale, bearing able to walk, dress or wash myself. I was at rock bottom, despite being on Azathioprine to try and stop my Crohn’s symptoms. All the life was sucked out of me.
It got worse; I was admitted to hospital, got better for about 36 hours – where I was taken off all my medications, given IV fluids and starved – then I descended into hell. Up and out came GREEN EVERYTHING. That lasted for an entirely scary night, where I was watched like a hawk by several members of the nursing staff. By the morning, I felt so light headed I passed out on my way back to bed. The talks about my heart, liver and lungs began. The detested NG tube was discussed and placed.
Somewhere from inside of me, I found some fight. I somehow got the strength to pull my tube out of my nose and was forced to endure the placement of another one, to which I refused treatment for.
When I think of all the shitty times I’ve been through, this is the one moment that makes me thankful for my fight and drive. Every time I feel low and desperate for something good to happen, I go back to that Monday afternoon and remind myself of how ill I was and how awful that was. I never want to go back there, ever. Through choice, I fight myself every day in order to not get back there.
When people talk about invisible illnesses, they talk about 96% of all illnesses. Crohn’s is one of them. For me, that fight I has to remain invisible to the majority of people I deal with and see on a daily basis. It is a personal and private struggle.
This seems very cut and dry doesn’t it? That the control you have over your life is everything in the world, no one else controls the destiny of your life but YOU. Many will look at that and think “why, yes, I agree” and most of the time I am with them, nodding in agreement. Until it comes to my Crohn’s. If you apply this to discovering you have a chronic illness like Crohn’s or UC you cant help but sometimes go to your dark place and contemplate the reasons as to why you’ve got this disease. Of why all […]
** I wrote this post almost two weeks ago, but was in a desperately dark place. Posting it didn’t, at that time, seem appropriate** I find my self being very angry tonight. Why? Because my boyfriend gave blood at a donation drive. I sat there and watch that guy sit through donation for a very selfless reason: Me. I can’t give blood ever again. Despite the Crohn’s, my anemia prevents me from helping someone in need. I find that very frustrating. That I’ve gone from one of the people who had nothing wrong to a person who could very well […]
Did you know it’s the middle of July already? We are creeping closer to the Autumn – something which I love – and closer to my Crohniversary – something I’m equally looking forward to. But I am sat here, on a half week off, reminding myself that this time last year, things started to turn down into the worst period of my life: GUTS AND PAIN. I hardly ever use medication to control pain, I just sort of ride through it. Migraine, headache, gut ache, period pain; nothing. Maybe this is why I am catious person and have never broken […]
I sit here writing to you on this Sunday evening hoping to find some clarity in the days ahead. I’ve been pretty poor at writing my blog of late, it seems that things have been getting in the way – mostly boyfriend and work related ‘things’ – but I feel as if I don’t spent enough time getting through the real crux of my problems. The inevitable fall, or the path to my next admission. I am stuck these days waiting for something to happen. Most days, I feel none of the dread I once felt many months ago, when […]
Inspired from aguywithcrohns recent post.. Being ‘decent’ and having Crohn’s Disease seems simple it theory. You just say “I was sick” and that could be the end of it, and for some people that is the depth of which they go into; with others and with themselves, about their condition. However, for the majority of us, being silent on that issue just isn’t going to cut it. It certainly didn’t for me; this is how my Twitter account grew and grew and my blog took off. It’s actually how my life with Crohn’s Disease really started. I was once a shy […]
My honesty will be the death of me. Or maybe it won’t. It is true for everyone – and even more poignant for people who suffer with a chronic, long term illness – that you need a strong support network around you. Know how you get into mine? You stick by me through the bad times. The good times, they come around again eventually, but the test of your character – and of mine, but that’s another story – is how you help me when I’m at my worst. What do you say, what do you do when I am […]
Counselling last week gave me alot to digest. It may have been the sunny weather or the time I’d been given off work, but I went into session in a very good mood. It showed. We spoke about acceptance. It’s become quite a theme or topic of conversation and my therapist always guides me back to it. I spoke of my freedom off work during the weekend and she asked me about when I started back at work, what it was like. It was a week after my final scan – the lovely MRI bowel scan – and my latest […]
Belief. I can’t quite believe that this is me, almost two years ago. Its relevance to the present? I feel as if nothing has changed. This was August 2010. It is now May 2012. I’m older. I’m wiser. But I still feel like the same person. I look at that body and I see nothing different. My curves have come back from all those sick days and the time spent in Good Hope. I’m back in a relationship. I’m still at home and I’m still working. I am that person. I might have shorter hair and a ‘new attitude’ but […]
I’ve been thinking lately about control and acceptance. In my mind it goes round and round, none stop without pause and without slowing down, even just for a second. I make my life more complicated by adding more things to it, constantly. I figure that the more I fight against my Crohn’s the better I will be, or something like that. When I have good times I want to be busy, I want to be helpful, I want to be occupied. Being occupied keeps me sane, in many many ways. Take for example – work. And my volunteering work. And […]
“Do you wish to continue with the rest of the sessions?” I considered – only for a moment – saying no, at first. But then I contemplated the help my counselling has given me thus far… how it is helping me come to terms with Crohn’s, to accept myself first and everyone else second, to try and communicate better with everyone around me, to becoming more honest about my emotions, to take down my walls and lower my defenses. Yesterdays session was a hard one. I’ve mulled everything over, and I come to the same conclusion; I can not see […]
The wonderful Sara wrote this post on her depression and these paragraphs stood high above the rest: “I’ll admit that some of it has to do with desensitization. Back then it was my first experience with those things and therefore a lot scarier. Now having a PICC line inserted, having an NG tube, getting a blood transfusion, having surgery, etc. isn’t a big deal because I’ve been there, done that. It’s just something that is part of my life now but I don’t let it consume me.” “Because of all of my struggles I am thankful for my disease. As […]
“I’m in repair.. I’m not together, but I’m getting there.” This is a post inspired by the loving words of support, the banter and the joy I get from my IBD Twitter family. They are awesome, every single one of them. Since having them all in my life for only the past 5 months, I wonder how I ever coped without them. It is safe to say, with some certainly, that I would be a messier mess if I hadn’t got them around me. And on Saturday I get to meet some more of them face to face. I am […]
Kat (hipsteralice) wrote a beautiful piece on WeGoHealth True Tuesday (May 8th) about missing herself. “Those 3 dreaded words: “I miss you.” They make me feel resentment and sadness. Because as much as you may miss me, I miss myself even more… But what happens when you suddenly become chronically ill, and who you are, becomes who you were?” You should feel good when someone says that they miss you. That there is something about you that someone missed and feels compelled to gravitate towards you once more. But like Kat said, when you become chronically ill, who you are, becomes […]
Today’s counselling session looked at ‘control’ Defined as being ‘to exercise resistant or direction over, to curb, to dominate, to command, to check or regulate’. I regularly feel as if I am not in control of anything. That my condition lends itself to being manageable but yet very untameable. I have no real say over what my guts do, or when they decide to behave (although, I am much better at ‘taming’ them than I ever was before medication and diagnosis) nor do I have a say in whether or not my current medication works or not (or any other intervention come […]
I am scared. Alot of the time. I was sat on my bed earlier on, lying next to my boyfriend, trying to find a moment to just relax and be in the moment. It is so hard to just be in the moment. And this isn’t to do him a disservice, but it is so terribly difficult of late to relax and just be happy. Sure, I smile, I laugh, I even giggle, but I worry. A tremendous amount. Here is a snippet from the monologue inside my head: “Right. Work. Work. What if I need the bathroom at work? […]
taletreader is completing the HAWMC and posted this yesterday. I read it and it got me thinking about ‘everywhere’. It is hard to explain to people how much your chronic illness affects your life. It’s constant. It is everywhere. Even in the nooks and crannies you hadn’t thought about. Under rocks you hadn’t checked previously. It seeps through your bones and fills your chest. It hurts when it shouldn’t. It makes your ache when all you want is some relief. Lately, Crohn’s has spread. It’s constantly in my head. Is it my medication? Is it my new friendships, my new […]
“Lou, we need to talk..” This sentence fills me with dread. It is fresh in my mind. It’s lead to tears. I sit here, trying my hardest to find the best way to put my thoughts into words. But I re read those words above and I am back sat in that pub, next to you as you break me into a million pieces. The moment you took the rug from underneath my feet and gave me nothing but that sheepish look. I despise that look with a passion. It says nothing, when all I want you to do is […]
“So what if it hurts me? So what if I break down? … I don’t care about all the pain in front of me, I’m just trying to be happy..” I try and live carefree. But that self doubt creeps back in, to ruin my happiness. Those fleeting moments of late when I feel like everything is okay, that I’ve come to terms with things; something, a small ‘something’ comes along and knocks it down. I want some more stability. I want some reassurance. Can you give me some, please? Compliments take me by surprise. They light a fire inside […]
I’m just going to put this out there: Counselling has really messed with my head. I know, in some way, it is meant to. But seriously, it does this? I feel like a goldfish. Just swimming around around the bowl in circles, without being able to find a answer. That’s all I want, some answers. So desperately. So I can get some sleep. So I can talk without hesitation or planning. I am unable to switch off. I don’t feel guilty or weak for seeking help, its the opposite – I am finally doing something about all the things I […]