no christmas

no tinsel
no holly
no pine needles
to gather in
small crevices
lingering til
july
no carols
or fruitcakes
no desire for
such pointless
frivolities
when all is said
and done
no gifts carefully
picked and
wrapped just so
no playground plans
no sunshine strolls
no love
no life
just, no.

sometimes when i dare to tell you

sometimes
i am flim flam
or skewiff
or shmeh-bleh
or other phrases
or syllables
crammed together
on the spot
because it’s easier
for nonsense
to be spoken
than to vocalise
the deep other
that lurks
mostly in a corner
but occasionally
darting out
shoving sense from
all sectors
and chaos reigns supreme

breaking point

WordPress, thou art my confession box, as it were, or one of many, for the internet’s good like that. But this is the place where I talk most frankly about mental health, and I’ve certainly come to the complete realisation today that there is no way that I can be on prednisone/in this current mental state without some kind of corresponding medication for my head. Three days back on my highest dose of prednisone, three days of on-and-off mental trauma. It really can’t be coincidence.

Spending half an hour lying on the bathroom floor, alternating between foetal position and sobbing and spread eagled, staring at the ceiling… that’s not the way evenings are supposed to go. I shouldn’t be telling myself ‘I don’t want to die’ over and over until I’m hysterical. I’m certainly not suicidal, it’s quite the opposite. I’m terrified of dying before I’ve proven myself. I’m terrified of something going wrong with my disease or my head or my medication and not being able to be all that I hypothetically know I can be, at least not when I’m in the throes of mental anguish.

I think I’m reacting far too much to this medication/situation for it just to be a psychosomatic thing. But regardless of what’s caused it, I need to get it to stop. As long as I can hold out the next couple of days, until I see my GP, it might all be okay.

And this was just one of those things that I needed to get out of my system. Much like so many things, but at least typing out feelings is actually able to be done. Getting rid of poisonous synapses and intestines… that’s what we’re working on.

on DRUGS (with PICTURES!)

It’s official – I have a love/hate relationship with prednisone.

Photo on 2013-01-27 at 15.15

I’ve been on it for nearly two months now, and it’s the only thing that’s had any kind of effect on my UC symptoms. But, as previously mentioned, I’ve been tapering it… and my insides have been starting to play up a bit again. So after a chat with Jacqui, the lovely IBD nurse at Middlemore – and after she consulted with the head of gastro, who’s one of the doctors on my case, as it were, I’m back up to my initial dose – that’s 20mg a day, which is actually a fairly small dose, still, but twice as much as I’ve been on for the past week.

And now that I’m on day two of taking it again, I’ve already had a freakout session. I had a few good ones soon after starting the pred, but after the first taper and then the second, I was feeling a little saner. But now – bam. It’s like I have to choose between intestinal and mental health – I can’t have both. I’m still at the stage where they can’t be sure whether or not my body and the infliximab are cooperating to make it work, so steroids are all that there is for now. In some ways, steroids are better than infliximab. Cheaper, for one thing. Pills, rather than infusions, which is a definite bonus.

But my mind is not okay with prednisone. Nor is my body, in other ways – I’m trying desperately to get healthier and fitter, and taking medication that can cause weight gain and puffy face and all that jazz is just making the mental breakdown all the worse. There’s no winning. Either I’m sick, and can’t do anything to make myself healthier in any way – or I’m ‘healthy’, colon-speaking, and I turn into an angry pufferfish.

It’s becoming very easy to just feel sorry for myself and melt into a sobbing mess. Lord knows it has happened before. I can yank myself out of the deepest pits of despair sometimes – doing the dishes while singing along to Avril Lavigne’s first album sort of helped, even if I did mostly just get angry at the kitchen. Frittering away time on Facebook and Reddit, even if it feels empty and pointless, it’s still better than lying facedown on the carpet, right?

But hey. Maybe it’s time to introduce you to ALL my drug friends. There’s more to life than prednisone, after all – even if none of it seems to do much, into my body it goes!

Therefore, let me present

BRIAR’S DAILY DRUG COCKTAIL.

look at how much fun we have together!

The day starts with the aforementioned prednisone. Four little white tablets, knocked back at once, because I’m cool like that. Along with my first four Asacol of the day. Asacol is mesalazine – which, according to Wikipedia is ‘a bowel-specific drug that acts locally in the gut and has its predominant actions there, thereby having few systemic side effects.’

more like asaCOOL, amirite?

So there you go. I’ve been on Asacol for about two years now, ever since I said to the doctor that the relationship between myself and the Pentasa enemas he prescribed was not going anywhere anytime fast. Nor were my symptoms. They didn’t really go anywhere with the Asacol either, but, as I’ve said before, and I’ll say again (likewise my doctors), if I wasn’t taking it, who knows how much worse I might be? The prednisone needs to be with food, and the Asacol is twice a day, so they get scarfed down with whatever I can stomach for breakfast.

Then, some mornings – though mercifully not all mornings at the moment, I pop my bff, TRAMADOL. Some mornings I’ll attempt paracetamol first… I do have a box as tall as my head of the stuff, after all…

SO MANY DRUGS

…but realistically, the kind of pain that paracetamol can handle is just my daily business, so if I feel like I need pain relief, it just doesn’t cut it. So that’s where my tramz come in to play!

tramadolololololololol...

Seriously. Until prednisone started doing stuff, getting the tramadol prescription was the only thing that ever seriously helped me out pain-wise. It’s courtesy of these bad boys here that I’ve managed to get through the past 5-6 months without any pre-arranged sick days at work. AMAZEBALLS.

Then, the day progresses. If I remember, I’ll take a multivitamin and a Executive Stress B vitamin with my lunch, especially since I’m still working on managing to tolerate most fruits and vegetables. Then work finally finishes, we all cheer, and I come home and collapse for the evening. But before rolling into the sweet embrace of sleep, there’s….

please sir, may i have some more?

MORE ASACOL! FOUR MORE! FOUR FOR YOU GLEN COCO, YOU GO GLEN COCO.

And a tablet and a half of azathioprine, also known as Imuran or Imuprine. I pre-cut them and keep a bunch in a gladware container. Cunning! Azathioprine, again, quoting everyone’s favourite research site, Wikipedia, is ‘an immunosuppressive drug used in organ transplantation and autoimmune diseases and belongs to the chemical class of purine analogues. Synthesized originally as a cancer drug and a pro-drug for mercaptopurine in 1957, it has been widely used as a immunosuppressant for more than 50 years.’ GOODNESS ME. The more you know.

om nom nom

And that’s the lot. So, at the moment, a relatively pain-free day will consist of thirteen and a half tummy-related tablets, plus painkillers if necessary. Gosh.

Tune in next week, for our latest installment of Tales of Ward 32 – Infliximab Infusion Live-Blogging! What a thrilling time to be alive.

on mental health

For quite some time, I’ve been aware that I probably need counseling, or therapy, or whatever you want to call it. As much as I have unhealthy intestines, I also have a brain that doesn’t cooperate at times, and it’s only been in the past year or so that I’ve acknowledged that this is probably a sign of depression or some other issue with my mental health.

I count my lucky stars that I have a partner who is there for me on the approximately fortnightly (but it can vary) occasions that I completely break down. Sometimes I can get it under control reasonably quickly, and generally prescribe myself an early night (after the boyfriend himself has prescribed many cuddles and reassurances), but other times I just can’t shut it down. Such an occasion occurred early this past week, with the added inconvenience of the boyfriend not being in the country currently. I sobbed, I explained to an invisible therapist in my ceiling just why everything was so awful and everything that I had done wrong and why I probably deserved it, too. I lay on the floor and couldn’t bring myself to do anything else. I was broken.

Maybe in this instance colitis actually has benefits (ha), because it was only when I had to go to the bathroom that I managed to pick myself up from the floor, and attempt a little normalcy. But by the same token, whilst I can’t know for sure whether or not I would have ever developed such issues if I didn’t have UC, I can say for absolute certain that it has exacerbated the problems an unfathomable amount. Consider, after all, that one of the on-going stresses of my life is, not only worrying about the limitations of UC symptoms, but the extremely controlling nature of the medications that I’m currently on. When both the boyfriend and I are constantly plagued by wanderlust and a desire to get out there, I’m being plugged into an IV every eight weeks, for drugs that no other government but my own would provide for me. And I’m not even totally healthy yet. Even typing this out now, I’m getting a little anxious tight-chest action.

It’s terrifying to me, both the idea of ending up alone because my disease limits me in such ways, and the idea that I may never be able to do the things and see the places that I want to, whether I’m alone or not. Or the idea that I’ll go to these places whilst healthy, even if it’s only between infusions, and then suddenly I’ll flare up in the middle of god-knows where, and be financially and/or physically ruined. Because UC is hardly affordable to tack on as a covered pre-existing condition when you’re paying for travel insurance.

And the anxiety – if you understand the delightful specifics of severe UC, I’m sure you can see how constant anxiety is inevitable. And all of these bundled together with an already imperfect mental state + physical disease including brain-sucking anaemia… is it any wonder that my BA really did turn out to be bugger-all?

And now, prednisone, which was really what inspired this post. So far, it’s the worst/best drug I’ve ever taken. I’m pretty sure that I can attribute my current kind-of-remission almost exclusively to the prednisone – I’ve only had two infliximab infusions so far, and that stuff typically takes a while to kick in. My symptoms are certainly better than they were a few months ago – for one thing, I don’t have to take Tramodol just to get to work without my insides screaming at me constantly – the pain associated with the colitis is pretty much gone, for now. The blood is gone. Frequency and urgency are still up compared with a ‘normal’ person, but that’s probably partly psychosomatic, since my brain and insides are so used to ‘gotta do this NOW, buddy’.

But. Even though I’m on a low-ish dosage, I’ve encountered some side-effects none-the-less – though I’ll admit, since it is a low dose, again, it may be partly psychosomatic. And the added mental stress of the boyfriend being away hasn’t been great timing, either. But I’ve been decidedly more… down more often since starting the pred. I’ve had insomnia, at times, I’ve definitely had the increased appetite and weight gain (especially perfect timing, thanks Christmas!) – which in turn has made me feel more self-conscious aaaand depressed!

So it’s a great cycle. But I start tapering the prednisone on Tuesday, so we’ll see if the symptoms stay on the down-low or not… I’m sure I’ll be keeping you informed.

In the meantime, as a combination venture – both making the most of minimal symptoms, and trying to keep myself cheerful, it’s time to wash the night’s worries off, and go on a bit of a road trip with people I don’t see nearly enough these days.