24 April 2015

I get knocked down...but I get up again....

The past month has been a very interesting one.

The little thorn in my side (Crohn's) that I guess I'm now resigned to live with for the rest of my life (short of God choosing to heal me of it which of course I know and believe can happen!) has sorely tested me and given my body a darn good kicking which has served to remind me that I really do have limits and I'm not bulletproof like I sometimes believe I am.

When I'm well I can pretty much forget I even have an autoimmune disease, which I know is darn lucky since so many people who have auto immune diseases battle with it on a daily basis. Other than remembering to take my 4 Pentasa tablets a day (antiflammatory for bowel disease) and eating a low gluten diet which seems to help my body more easily process what it eats, I could be any other Joe walking down the street - you would never know the difference.

Often times when it comes up in conversation, I've been almost apologetic and dismissive saying I have Crohn's - prior to this flare up I'd only ever had two real episodes to speak of (one just before I was diagnosed, and one this time last year) and I felt a bit of a fraud to be honest - knowing just how sick some people who have the disease can be.

When this flare up hit, I was quite possibly the fittest I'd been since before having kids - running longer, harder and faster than ever before - even a 10km on one occasion, and a 7km bush run literally 3 days before I got completely wiped out. And it was feeling so good to be that strong! We'd also been eating much more healthily too - I won't deny it it was somewhat motivated by the thought of our Rarotongan beach holiday on the horizon.  The combination of the extra exercise and good eating had seen me shed nearly 4 kgs without even trying and I was feeling pretty darn good about myself.

But pride cometh before a fall! When the Crohn's hit I went from this energiser exercise bunny to being literally incapable of walking much further than slowly around the house with debilitating tummy cramps, and then when the associated fever, body aches, leg cramps and headache hit on top, well it's probably no surprise I ended up in bed off/on for a few days.

I'd really hoped that increasing the Pentasa medication back to full strength would be enough this time - as it had been on other occasions but after ten days of increased medication and feeling no better I then passed what seemed like a huge amount of blood in the toilet with no 2's and I knew that sh*t had just gotten real - literally. So after a lengthy conversation with the specialist, we made the call to go on a course of steroids for 11 weeks to try and get this thing back under control with a view to reviewing my longer term medication once this time has passed.

I wasn't thrilled about this as I know steroids come with their own issues but the fact that I started feeling better after literally one dose made it totally worth it. Do I love the fact that I'm waking up at between 4-5am every morning and then I just.can't.get.back.to.sleep? Not so much. Do I also love the super dry cotton mouth I wake up with? No, but it's a pretty small price to pay in the scheme of things I guess, to now have the ability to function near normally especially with all we still have ahead of us in these next 2-3 months. So far I haven't had to worry about the increased appetite and weight gain side effects you can also possibly expect on steroids - but let's face it after losing nearly 6kg now in 2 months (I lost another 2kg accidentally from not being able to eat properly and feeling so rotten) which is more than 10% of my body weight I think I can probably live with that as an outcome!

By far, the biggest thing that has crushed me is how much it feels like starting from square one all over again with the exercise - this week all I did was a 5km walk one morning, and a 4km walk the next - not even attempting any running and still my glutes, knees, hamstrings and hips were NOT impressed with this afterwards and I even got blisters (what the!) from my trusty trainers just from the walking - which just goes to show that the underlying impact on your physical body when something like this hits and you have to take enforced time off can't be underestimated. It's not just like 'having a break because I feel like it' - it really is completely back to basics. A good dose of patience (not something I'm good at especially with myself!) is clearly required together with a very slow recovery regime where I don't get ahead of myself.

I am still very grateful that I even have the option to choose to take a drug (steroids) that has so greatly improved my symptoms this time round. I'm also choosing not to worry about the long term - I know that Crohn's is a chronic condition and the chances are I will have more flare ups which could get progressively worse over time. I also know the statistics - that 40% of people with the disease end up having surgery at some point to fix sections of the bowel that are irreparably damaged. But who wants to live life worrying about that? Not me. Instead I will choose to be thankful for every day of feeling 'normal' that I have. Every day I can get out of bed 5.30 am and go for a walk (even if it's not a run) is still a good day. Every day that I can be with my children and watch them growing into beautiful boys without the distraction of chronic pain is a good day. Every day that I draw breath and am aware of the unmistakable glory of God in the beauty of the world around me is a day to be celebrated.

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