Sara - Home at last

Angst warning

Last time I was discharged from a hospital, it was under terrible circumstances. It was in the middle of the night, after I'd been transferred to a transit ward (with only three male patients to keep me company), accompanied by a hastily scribbled script and a promise of discharge papers in the mail. Dressed in my pyjamas and holding a cryptic crosswords book, suddenly I was out with my family in the cold, listening to arguments about "what was best" for me and "we did  the right thing"s. And they did. I'm not a passive person but when it comes to medical authority, I listen, and I do what I'm told, and we didn't do that the first time I was in hospital (and so my mother doesn't freak out, I do believe we did the right thing - Mum, no need to stress). It was a weird experience and yes, it left me feeling quite raw and emotional. It's strange to quickly go from being in the constant care of a team of professionals and to have direct access to painkillers and doctors and aid that - try as they might - my family cannot replicate at home.

I'm an over-emotional person at the best of times...and that was not the best of times.

This time around, it was better.

Not just because the hospital was, overall, much better, but because I knew when I was leaving. Instead of being yanked out a night early, I actually stayed in longer than was originally planned. They told me I could leave after my MRI on Wednesday but when I returned from the scan in a wheelchair, retching into a plastic bag and doubled over with stomach pain, it was agreed that another night would probably be advisable. I got spoken to by a clinical psychologist, I saw members of the pain team, the gastro team, my dietician, my nurse for the day and of course the wonderful head nurse of the IBD clinic who holds everything together. I was given scripts, a med chart, blood test forms and some semblance of a plan to continue on after leaving hospital. I had my bags packed and, most importantly, I had time to mentally ready myself for the environment transition.

Once I got back, I didn't have to flip straight into normal life. I went to my grandparents' house and curled up on the couch, watching bad television (apparently "My Daughter is a Teenage Nudist" is a TV show), reading bad magazines and drinking my bad bad bad meal replacement drink. I took a long, hot shower and washed my hair and made the most of finally being able to freely move my arm (now cannula-less). I don't have to go to school tomorrow and can instead ease into action, have some quiet time, recharge.

It's not all good news, though.

I know what the doctors tell me is true, and I'm not one to question medical authority (as I've established), but I feel like we're running on the spot. We're charging into pain medications and anti-nausea ones (including one that's used on Chemotherapy patients) and every kind of drug imaginable and I'm continuing without food for another eight weeks but...for what? Four weeks already and I've noticed no improvement - having just been in hospital, I'd say I'm worse. It's hard to keep motivated to do something that is so difficult when it doesn't seem to be having any benefits. And this is not because it's the non-medication route - if I'd been on a certain pill for four months and it was making no difference, I'd be equally concerned.

All the while, I have doctors telling me that there was a marked improvement on my last CT scan and I just feel as though these insane levels of pain and nausea and discomfort are being rendered invalid by doctors. My inflammation allegedly looked better as of early July, but I feel worse now than I did in early July. Not only that, but the markers in my blood have consistently become higher, so I can't be making it all up; something is not right in my body and I don't feel like we're not doing enough to combat it and I cannot accurately express quite how frustrating that is.

Almost as frustrating is the constant cry of bystanders that they know someone who has Crohn's or IBD and look what cured them! People don't seem to understand that you're never cured of Crohn's, you just go into remission; nor do they understand that while the power of positive thinking or a gluten free diet  might have reduced their pain, it doesn't work for everyone, and even when it works, it's usually just masking symptoms instead of treating them.

Sometimes I forget about the pain and things look alright in the world; I can focus on the good things in my life, like the holiday I'm going on come December and the fact that I'm nearly finished school and that I have loving and supportive family and friends.
Sometimes, when the pain is the worst and the fatigue has worn me through and some kind of dark shadow settles across everything I come into contact with, I forget about the good and it terrifies me.

I'm quite all-over-the-place tonight. I suppose it's exhaustion and emotional upheaval and differing circumstances more than anything, but it doesn't feel like that. It just feels like it's getting quite hard to carry all this weight on my shoulders, especially when I'm told that I shouldn't be feeling this way and that there are so many people in the world who have it so much worse than me. I just want to be the selfish one for the moment, as terrible as that sounds, where I can worry about myself and feel justified in my pain and in my sometime misery.

I'm trying not to let my illness become me but when there's so much else encompassed into it, all these weird feelings and so much constant struggle, it's hard.