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.

hospital haiku (365 pieces – january 3rd)

on ward thirty two
needle in my savaged arm
watch a bruise blossom

how the rain falls now
poems for the soul that cries
every waking hour

this is infusion
my arm is a-lure-ing and
meds put me to sleep

taste the bitter pill
feel the clammy summer air
give up / write haiku

air like coffee grounds
a mind full of similes
and disinfectant

where did normal go?

I’ve been meaning to do a video post, just for kicks, and because hey, why not bring some roguish Kiwi charm to the colitis and literature discussion table?

But that’s not tonight, because I’m suddenly feeling spectacularly sore, and am hour by hour convincing myself that I am getting more and more of a prednisone moon-face. So that’s a blast.

Related, kind of, here’s my current new-drug status…

– Week and a bit on prednisone.
– One and a half days since my first infliximab/Remicade infusion
– Week and a bit on my increased dose of Asacol (4 pills twice a day instead of 3)

 

And the ‘results’? Well, less blood and whatnot. Which is progress. Less frequency, kind of… but I’ve still been taking at least one tramadol most mornings, and just spent quite some time writhing and nearly crying in the bathroom and now am propped up in bed, having taken two tramadol capsules just to try to make the pain go away. I felt exhausted and icky all day yesterday after the infusion, to boot. Fun times.

What does it feel like to have normal insides, I wonder? I really don’t remember. A day has really not gone by in the past couple of years in which I have not either spent a period of time worried about whether I’ll suddenly have issues/where the nearest bathroom is at ALL times – or alternatively, felt two awful/anxious to even leave the house. So that’s fun. There’s a reason why I have meltdowns of a fairly impressive nature once every two or three weeks. Normalcy is gone. My normal is planning a route to work that takes me via several publicly accessible bathrooms first thing in the morning. My normal is constantly worrying that my colleagues could be saying things behind my back while I’m on my fifth bathroom trip of the morning. Looking at my arm and seeing a mottled bruise from an IV that looks like it should belong on the arm of a 80 year old, not a 22 year old. Avoiding going out. Crying in the bathroom. Being woken up by my angry colon at night, not being able to comfortably lie on my left side because too much pressure is put on the ulcerated area. Using up all my sick leave and a fair chunk of my holiday leave for colitis related absences. Not being able to plan trips/travel/anything because a) will I get there in one piece and b) even if I do, how am I going to hold up long term… because the treatment I’m on (that might not even work) is hardly likely to be covered by travel insurance, and each infusion costs more than I have saved right now.

I never wanted to be normal when I was younger. Non-conformist was a buzzword that I seriously subscribed to at fifteen. I’ve been alternative/off-beat/indie – I’m generally weird-ish and I love it – but for once in my life, why, why WHY can’t I just be normal, in this one way?

and habit-forming

And a quick health related post as well, because shit’s been going down! Kind of!

Well, to be honest, it hasn’t been anything that wasn’t already expected. I went in for an appointment on Tuesday, with the nurse and doc running the trial I’m on. Hypothetically, it was for my next dose of the drug, but we all went into it knowing that, unless something had happened of a dramatic nature over the weeks beforehand, there wasn’t any point continuing. So we’re not.

And I finally nodded, in moderate defeat, when prednisone was brought up. The many and varied medical staff who I deal with have all been very understanding of my reluctance to take steroids, and so I’m only on a low dose, and will be tapering after a month. I’ve been feeling a little better – I’m not sure if it still needs a day or two to really kick off, or whether the dose is just too low… I’m really hoping the former. But regardless, the slightly more major thing, kind of, since the pred is just a temporary measure, to hopefully jump-start my feeling better (although to me it feels sort of like a bigger deal, since I’ve been saying ‘…no, thank you’ for the past year, almost) is that next week, I have my first infliximab (aka Remicade) infusion. Fiveish hours on the IV. Hooray.

I mean, I’ve had an iron infusion before, so I kind of know what’s up, but still, megadrugs! Problem is, the trial drug I’ve been on is a TNF blocker too, and I had minimal – if any – response to it. So it stands to reason that the infliximab (I’m getting used to calling it that, even though most of the internet does refer to it as Remicade, because my medical folks all do) may well not work for me either. But in the positive column, it has a proven track record – been around since about 1999, I think? – as opposed to being in phase II of a trial.

So we’ll see. Maybe I’ll even liveblog (or livetweet, more likely, let’s be honest) the whole exciting experience next Wednesday! It is fun slightly freaking out one’s Facebook friends list with sassy bathroom mirror pictures of yourself attached to an IV… oh wait, here’s one I prepared earlier!

What a sexy face, n’est-ce pas? And that bedroom hair! Oh, stop!

But yes. So, we continue the quest towards Successful Medication Ideally Without Total Colectomy. Which currently means that I’m taking upwards of 15 tablets a day, in addition to the soon-to-occur infusions. What an exciting life I lead. Oh, and this whole starting infusions thing at the same time as starting meds with possibly super-duper fun psychological-and-other-stuff side effects? All at the most stressful time of year for me as a textbook buyer for schools. SWEET AS.

gollum and government

It seems appropriate, given the current Hobbity furore (which I’m something of a part of, I’ll admit – hard not to be when you were a die-hard LotR fan as teen in the early noughties), that my intestinal word association of the morning as I’m lying in bed writhing (even though I popped Tramadol two hours ago) was of a Hobbity nature.

As I moaned to myself ‘take it OUT, don’t want it,’ some constantly fantastical corner of my brain piped up ‘We don’t… neeeeeed you.’ Granted, if it gets to the point where ‘jpouch looks after us now’, then I won’t even have any angry colon-gollum to talk to (and with its grumbles and gurgles, perhaps it is talking back… bitch). ‘Go away’, ‘leave now and never come back’… bro, those are my vocabulary almost every morning.

The pain for the morning is slowly – very slowly – abating, but this is really just cementing the fact that I really want off this stupid trial. I wouldn’t even care if they decided to skip infliximab/Remicade entirely and just took the damn thing out. That being said, I really can’t take an extensive period of time off work until April (working in a uni bookstore means WEIRD periods of business. March and July are the ‘yeah, you want leave? time to resign, buddy’ months, whereas December is, for most people – except for me, since I deal with the orders for several schools which start back in January, huzzah – our quietest month of the year. The possible problem with Remicade is that typically government funding wouldn’t cover a large course of it for me since I only (at last check) have left-sided colitis, even though the left-side in question is super bad. A long course of Remicade would normally require pancolitis. But, given that I have exercised every other possibility, including way too many months on this damn trial, I think the docs are fairly confident that an exception could be made for me – the hospital has additional funding for situations such as this, or something. Things like this give me the tiniest glimpse into the hell that the US healthcare system must inflict on those with an IBD or any serious/chronic disease really. From what I can tell, it looks as though a single infusion of Remicade runs about 6000USD, and even people with insurance seem to be having to pay a thousand dollars or so towards that.

That blows my mind. It won’t cost me anything, in effect. I know that taxes pay for it, but it’s not like having higher taxes on my hardly noteworthy salary makes me incapable of carrying out day to day work. It sickens me to think that a purportedly first world country can have so many people who think it’s acceptable to maintain such an ‘every man for himself’ mindset, to be so anti tax. No government is perfect, and for sure there are things that they do or say that aren’t to my liking – hell, I can’t stand our current PM or his party – but at least we don’t have to worry that getting sick will bankrupt us. If I had one of these ‘deductibles’ or ‘out of pocket payments’ or whatever the hell it is that the terrifying insurance companies make you pay in the States, I don’t know what I’d do. It would make what is already a horrific thing to deal with so much worse. My prescriptions cost me $3 for a three month supply, regardless of what they are. Because Remicade would be administered in a hospital, it wouldn’t cost me anything.

But, like I say, at this point, I’d almost rather they just take my damn colon out. It may have had 18 or so years of reasonably perfect function, but for the last 3/4 years it has just shut down shop. It’s about 2 years since I was officially diagnosed. And despite going through the rigmarole of Pentasa, Colifoam, Asacol, azathioprine, and now several months of trial injections, not to mention an upper endoscopy, two full colonoscopies and five (I think?) flexible sigmoidoscopies, I’m pretty much as bad as I’ve ever been, if not worse.

So, take it. I don’t want it anymore.