Today one year ago I was recovering from my first Colonoscopy. Today one year ago I was “unofficially” diagnosed with Crohn’s disease.
I really threw myself into work today – this is an anniversary I’d rather not have. I must admit – I did get a lot done. But none of it stopped me thinking of what transpired a year ago today. It has been a bad year… and every time the one year anniversary comes round of a bad event that has occurred in the last 18 months I hope that “maybe this day marks the end to the year from hell”. No such luck – but I keep hoping.
There was nearly a homicide last Friday when I rocked up to my parents house to check on my ailing mother. My father was a complete dick to me – after everything I did for him the few weeks before…. I was absolutely furious. I lost my temper in front of all the family that was there. I know my mum is sick – and I am terribly worried about her… but ever since I got my diagnosis, the only one of my family who has asked how I was feeling (and actually wanted to know the answer) and listened to my story is my sister Jodie. The rest of them – they walk around in this dream world where they think I have something like the flu and that “I’ll get over it”. Its always been ignorance that has got my goat – this was no difference. With tears of anger and repressed pain, I screamed at them all… I remember saying that “would it kill you to ask how I am for a change – and actually stop and listen for long enough to hear my answer?”. If they had of, they may have had an idea of how sick I have been over the last 3 months, how low my self esteem is from all my skin lesions and how flat I am. They may have got the hint that I am not okay… and perhaps I would have liked to have talked about it. I suppose Jodie gets it because she has had chronic health problems and she is different from most other people too… I don’t know… I just feel like I don’t have to sugar coat anything for her, but everyone else in my family would lose their waters if they actually knew how serious things were and how sick I was and the pain I have to deal with on a daily basis. I don’t think people like to imagine their loved ones in pain – but, the reality is, ignoring it doesn’t make it go away. It just makes those of us with it more bitter – cause our own family doesn’t care about the trials we face every day. I laid it all out on the table, and I think the only other person in the room who “got it” (finally) was my recovering mother who replied “I think I understand you a little bit…. cause I feel like I am living with a time bomb inside me and I think thats part of what you are explaining”. That was – part of it. Only people with chronic bowel conditions can understand the pain part… only they can understand the fight we have most mornings just to get out of bed and join the rest of the world. My father screamed some sort of abuse at me and stormed off… I told the remaining family members that I hated him and went home – what the fuck would he know about REAL pain. Of course I don’t hate him – but I don’t really like him right now either. He is so quick to be critical of me with no understanding for my state of play and state of mind – yet he sugar coats things for the others? I am the youngest and I think for a change, I would like to be taken care of a little by my family instead of it being the other way around. I would like to talk about MY problems rather than just listening to everyone elses. Before I walked out, my parting blow was “now I know why I have it (Crohn’s)… because I am the only one out of the lot of you that can handle the physical, mental and emotional destruction it leaves in its wake… and still rock up to listen to your problems too”. … and to some extent, I believe thats true.
I did end up getting an apology…. but… I haven’t been able to bring myself to go back there… I have also been getting calls from my mother and my brother to check how I am… I think laying it all on the table and saying “sometimes I don’t want to wake up…. if this is all I have to look forward to for the rest of my life… some moments (only moments) I think that I would just like it to be over” may have scared them into paying a little more attention. Naturally I snap out of it. I don’t want to top myself or anything anymore… but sometimes, in between, I don’t want to keep on keeping on either. It has been nice feeling a little bit cared about for a change…. and I feel a bit revealed to give them the slightest insight into what my life is like now. For instance… I am sitting here feeling like I am going to chuck, because of the migraine medication I took to stop the headache I got from my Crohn’s medication to keep my Crohn’s in check. Its such a delicate balance – and some days, yeah it fucking sucks to have Crohn’s Disease and other days its not so hard. And on the very rare occasion I forget I am sick altogether – just for a moment. They are the best moments – where I can pretend I am just a normal girl… doing normal things.
Well after all that doom and gloom, a bit of good news. Yes, as you read above, I am getting headaches again from the Entocort – I think its unavoidable… but I can deal. The tea and yogurt thing? Seems to be working a little…. I haven’t been as bloated… my insides haven’t felt quite so heavy in the last few weeks… even if this is all I get, its enough. Any improvement in my situation is worth “ringing the bell” about.
But honestly… I still hate yogurt.