“You’re not allowed to be sick here”

I have had a volatile relationship with my parents for about the last… er…. 6 or 7 years.  

Why? You know, I’m not really sure. After my first divorce in 2004 I became pretty fiercely independent.  To some extent, I think that’s been a personality trait that has helped with my illness.

In the last 2 years – it’s deteriorated to the point where I just don’t want to see them. I can hear the cacophony of people saying “you only get one set of parents”, “you’ll be sorry about what your saying”…. but my situation IS different, like it or not – so, will I be sorry? You know all those times you want your mum when your sick….? Yeah – I don’t. I want two valium and to be left alone. I don’t want to be told to be positive while my liver is toxic, I don’t want to be asked all the gut wrenching questions people ask the chronically ill (that makes us want to perform physical violence). I want to be with the small circle of people who understand what’s going on with me – and in some cases they understand that they don’t understand. They don’t compare it to their arthritis, or their diveiticulits or (and I nearly throw up in my mouth when I type this) old age. Yes, one of my parents actually told me that I had it EASY because I wasn’t old. I might have it even easier and not make it till I get old because of a complication.

As I wrote in my last post – the levels of my Mercaptopurine (6-MP / Purine-Ethol) have built up in my system to the point they are hurting me. Symptoms somethings wrong is just an all around “shit” feeling without being able to be specific – flu symptoms (without actually getting the flu), exhaustion, lethargy… headaches… I was called into the emergency clinic at GCUH because some of my tests were coming back poorly – the team suspected it was my Crohn’s returning – hell, even I was getting ready for it.  It doesn’t look like that was the case (which I’m unendingly grateful for). To try and find out what was actually wrong I was sent for a gamut of tests including a liver study which is something only hospital pathology can run.

As soon as the doctors suggested it – I new that’s what it was. I’d had a similar, but worse reaction to Imuran in the early stages of maintenance treatment. 

So the problem is – many of the immunosuppressants that they use on conditions like mine (autoimmune or pseudo-autoimmune) take 3-months to build up in your system – meaning they take about the same to start petering out when something bad happens. I’m going to feel crap for 6 weeks or longer because that’s just the way it is. And yes, I’d rather have a toxic liver than active Crohn’s Disease – how messed up is that…?

I’m dealing with it the best I can, I’m at FTJ and trying to return to freelancing (in hopes to continue to save for our trip in December – that can’t come fast enough). It’s making me more tired, more exhausted – but my mortgage doesn’t pay itself and I’m not eligible for disability from my government (I do however get out of Jury Duty – so yay on that one).

I very rarely talk about my struggles – and when I do, I blog about it because coming out and saying “I feel like I’ve been hit by a bus 90% of the time” is never a good conversation starter. My parents have been pissed I’ve not been there more than I am – but this is the time we live in. I work two jobs, Stocker is back at uni “part time” (which feels a lot more like “full time”). Our house looks like a borthel, we’re eating far too much Subway and Guzman y Gomez, and I’ve not seen the working side of my treadmill since April. I don’t have time to take care of myself – should I be responsible for catering to other peoples needs right now?

The age difference isn’t helping – my parents had me in their 40’s, so I’m mid way through the part of life where I have to work my arse off while they’re in the part of their life where they expect everyone to bend over backward for them. That however doesn’t excuse of the belligerent, selfish and plain stupid things that they’ve said and done over the last 2 years in particular.

Last night – we went round for dinner… it was such a mistake. I was exhausted – I’d worked probably 80 hours that week and my liver was only a few days into the reduced dosage of Mercaptopurine so things hadn’t started to improve. I was thrust a glass of wine when I walked through the door, but had to decline. Bad liver + alcohol = hours of vomiting. I know that all to well… “What’s wrong with you THIS time” my father snorted – offended because I couldn’t drink, of all things. I replied “my liver is a bit distressed from my medication – I can’t drink on top of it at the moment because it just makes it’s job harder”. “STOP ALL THAT RIGHT NOW!” he yelled, “you’re can’t be sick all the time”. I was so taken back I just stood there in dumbfounded silence…. My husband said quietly “you do know what chronically ill means, right”…. There was silence for a few more seconds while we all stood there staring at each other “well – you’re not allowed to be sick here. We don’t want to hear about it”. So – tell me, how am I meant to react to that? I just clammed up… I spoke only when I was asked a question and watched my wristwatch eagerly waiting for an “appropriate” time to leave…. In my silence – my father drank more and more… to the point I could barely understand him. This wasn’t a special occasion – or unusual for him – it was just a typical Friday night…. Minutes before I got up to leave… he told me that I needed to take responsibility for my actions… That Crohn’s was a result of my youth…. I don’t even have words for how that made me feel. I don’t think I can ever forgive something like that being said…. I don’t think I want to… I will certainly never forget.

I have been through infusions, medications that are more like torture than medicinal, surgeries, invasive tests… more… The only thing I WANT from my family is for them to say (and hopefully believe) “hey that sucks”. Instead, every time I even mention my disease I’m berated and hit with every single thing on the list of things NOT to say to a chronically ill person. Seriously – FUCK YOU. Don’t tell me whatever you have going on is worse, it’s not a fucking competition… I’m looking for a little compassion in the one place that it should be free flowing – my family. Instead, going there is a chore… I hate being there, being around them. I hate having to make polite conversation… we have NOTHING in common. And I mean nothing. I have fought for every single inch of what I have, and I mean FOUGHT. My house, my job, my clients, my money and most importantly – my life. I’ve fought to still be here when there has been a lot of occasions that giving up has held much solace. 

All I want is the family that I read about in the Crohn’s flyers… The “support system”… I don’t want things, or money… or anything really. I just want them to tell me “it’s ok” when I can’t make it round… and to listen to me when I need to get things surrounding my illness off my chest…. I know now – that’s never going to happen… My illness is incurable – I feel that my families stigma toward me is also….

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