Clouds upon Clouds

Last year was the first year I participated in HAWMC. I was 7ish months into my Crohn’s journey and we were asked to make a word cloud with all the words we associated with our health condition. The same was asked this year. I thought, well this is abit recycled. Its abit of the same from last year, it won’t be anything new. Oh how wrong I was.

This is last year, 2012’s word cloud:

word-cloud-ibd-2012

 

What first stands out is the word confusion. Boy, was that true back in April last year. I was so confused as to why my body was so slow to fix itself. The Humira was doing so much of the work and whilst being away from home, I was sick. Not very sick, and it was self-inflicted but I felt utterly angry and confused. I wanted my normal life back doing what I was best at. ‘Understanding’ ‘ flabbergasted’ ‘struggle’ ‘ashamed’ ‘depression’ ‘counselling’ it all added up to me feeling abit negative about my condition. It also seems so specific and full of memories of hospital, despite not having been in the Gastro ward since Nov 11. It is very odd, looking at all those words and seeing what I associated with my Crohns, a whole year ago.

And now, this year 2013’s one:

word-cloud-ibd-2013

This one seems more clinical, medical. ‘Sulofalk’ ‘Mesalazine’ ‘Prednisiolone’ ‘disease’ ‘Adcal’ ‘colonoscopy’ ‘clinic’ ‘flare up’ all indications of how much more complicated things have become this year. You’d think that being off a strong med would mean being abit more free, but the daily pills are growing in number and I’m rattling more and more. I depend on them to get me through the day. That is sad. I guess to an extent I am in denial that things would have gotten better without the Humira (which when said out loud or written down sounds bat shit crazy!) or by now. Steroids have been in my system since mid Feb and they just keep me ticking along, whilst I spent more and more time every day worrying about their lingering effects of my body, especially my bones and joints. Le sigh.

So, one whole year later, things have gotten better, writing wise, mentally I’m more positive and determined to fight, and a little less naive, but my symptoms have grown. So its half a dozen of one and half a dozen of the other. Things will never be perfect. I have yet to get to a point in time when I feel comfortable with things, because once I get comfortable – even for as short of a time as couple days – things change on me.

Despite feeling like that, this is so true.

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