Its been a hard week… and on Sunday night… I snapped.
It was due to many things – probably most notably the fact I had been ill since before Christmas with almost no reprieve. In fact… it appears to the casual observer that I am getting worse.
I am at the limit of what conventional modern medicine can do for me. I am taking both Corticosteroids and Immunosuppressants, I am taking the highest dose my body can handle of both. I am taking my vitamins… I am doing everything “right”, but nothing is going right. My weight has plummeted… I am now at 56kgs, from 62kgs only two weeks ago and my patients is frayed.
Going on the medication – having the condition “managed” is meant to make it better – make you feel better. I feel worse. At least, before the medication, I was at a happy 60kg and felt good for a few weeks in between my bowel obstructions… Stocker likes to remind me I would have died if I had of continued down that road… But… in the weeks between at least I had a life.
Now I am confined to our house often… so I get lots of artwork done… great. I find though, I am turning into more of a hermit than Sophie, our moody Blue Heeler.
On Sunday night as I continued with my tear ridden, emotion driven rant I unearthed one of the other main reasons for me finally losing my water. I feel like I (myself) and my condition are being trivialized… and the main culprits are my own family. Yes, that’s right, my family are treating me like I have the flu and I will just get over it. All of my family bar one. Jodie. I think in the last year, I have acquired some understanding of what my sister went through in her teenage years, battling her own chronic and debilitating condition. I was too young to really know what was going on back then… but if I could go back in time… Jodie is one tough cookie – and now I know why. Anyway, yes, back to the rest of my family…. there are a few events that have led me to avoiding their place. I will recap the last two (which sound minor – but in reality are the straw that broke the camels back). Every time I say that I am sick – or that there is something wrong with me… there is ALWAYS something WORSE “wrong” with a few of them… for fucks sake – just let me be fucking sick for two seconds! At my mums birthday, I had been to the dentist just hours before… I walked in in a bit of discomfort. I was immediately informed how my situation wasn’t that bad (I had someone else’s perspective shoved down my throat) followed by my father saying “I have broken all the teeth on the right side of my mouth and I don’t even go to the dentist”. Right – thanks guys for even asking how I feel or how my day was (this all happened before I could even open my mouth). The second was on Friday – I was having a flare-up (which stopped me from going to work and attending an important meeting). Not a bowel obstruction flare, just a “can’t get off the toilet with pain that almost makes you faint and fall in” flare. I was meant to be going to my parents house after work – so I rang to let them know that I wasn’t coming. When asked what was wrong (rather than regailing them with the whole story > after which I am sure I would have been told how much worse their <insert problem here> was) I said I wasn’t well… to which my mother replied “what – have you got your period”. I laughed in her ear to stop me from screaming. “No mother – I am having a Crohn’s flare up – but its nice that you think my pain threshold is SO low that I have to take a day off because of my period“. I then hung up before I could hear her response.
My family have no.fucking.idea about what I have… much less what I go through. At first I thought I was protecting them by not giving them the whole story. I realised that was in error after they expected that it would just “clear up” one day… that its no more painful than indigestion. I tried to sit them down and explain it at which point I got met with “I have it so much worse” or “you’ll be right”. No… Nope. I’m not alright, and sorry but no.. even though your <insert condition here> is painful, I think I am still a little ahead. I mean, I don’t want it to be a competition, I never have, but I don’t keep taking it there – they do… what I want… is for them to sit down, at the table and listen to what my life is like now without interrupting. What I want, no, sorry, what I need, is the support of my family. And it is something I don’t believe I have – and at this rate, will ever have. I listen to all my friends who tell me how supportive their families have been through all there challenges… This, Crohn’s, is my biggest one… and I feel like they are treating it – and me like a joke.
So yeah – these are the two main things that drove me over the edge on Sunday night… but not the only things. After 12 months of thinking I was coping with all of this well – I have realised I am not coping with it at all. After 12 months… I have finally decided to see a councillor under the Queensland Government Care Plan project. If nothing else, I hope to be able to talk to someone who isn’t going to tell me how lucky I am… or how much worse their <insert condition here> is.
I am hoping… even if its just an hour… to be allowed to be sick.