A cursory glance at my blog will inform you that so far I have mostly talked about [my] mental health. I’ve yet to discuss my other major affliction, which is Crohn’s Disease. Crohn’s is pretty difficult to talk about, either face-to-face or on a blog where I’ve chosen not to write anonymously.
For a start, it involves discussions about one’s ablutions (read: shit chat, which is something frequently leveled at me, but for different reasons…) which, frankly, I wouldn’t want to hear about I were not suffering. But Crohn’s is not only about bowel movements: it’s about what you can/can’t eat, how tired you feel, how socially awkward or stressed you are, and other secondary symptoms or complications. It is so difficult to relate these to other people, and particularly as some of them can be very personal. For example, I’m quite happy to talk about all sorts of things on here, but let’s say that I have problems I wouldn’t share unilaterally with my dear blog readers! Only the docs, parents and one or two friends get to hear me out on those problems…
But anyway, here’s something I do want to cover briefly here, and that was the rather excellent discovery (thanks Dave!) of GI Monitor – a smartphone app for Crohn’s and colitis sufferers which allows you to record stress levels, pain, meals and of course, bowel movements (BM). I have to admit, I always crack a smile when asked to “log” my BM. The app then, somehow, puts this data together to calculate your quality of life (QOL). As a scientist, I’d love to know how this is calculated, especially as my QOL has apparently dropped over the past week (see graph), despite me not feeling much different!
But now I’m finally getting to the jist of this post. I believe the QOL calculation is partly to do with a comparison between how many times a day you log a BM and what your ‘normal’ number is. I haven’t the faintest clue what is normal for me anymore. My problems kicked off around 4 – 4 1/2 years ago when I started going much more regularly. How many times a day did I go before then? No idea. I’m sure if I asked any regular person, they wouldn’t know either, and I’ll be certain they won’t remember 4 years later after a period of illness.
The problem, of course, is that what was once an abnormal thing has become normalised. I don’t remember what it feels like to be ‘normal’ anymore, and it’s been so long anyway that maybe how I feel everyday is normal now. I would also say the same about depression – you can spend such long times at low mood, that this becomes your normal state and so when, for example, you’re asked if you are happy then how do you know? Well, I mean, how do I know. Maybe I am happy, maybe I’m not – it’s almost impossible to step out from your situation and get some perspective.
Perhaps the GI monitor will help in that regard, by monitoring long-term trends and perhaps it might show what’s a normal day for me, and what’s abnormal. Rest assured, I’ll keep you informed.