Friday, 20 June 2014

I Can't Believe I'm Not Bitter

Much is written on the symptoms of Crohn's Disease (and other long-term illnesses); on how to manage the effects of medication and treatment, and how to best manage pain and nausea along with the plethora of other symptoms that go hand in bowel with inflammatory bowel disease. Lately I've noticed I've had the tendency to stray away from the ins (and more predominately outs), in living day to day with Crohn's and focus more on how it affects myself, and others, mental health. 
This unfortunately seems to be an issue commonly shied away from, disease or not. I feel as a patient with an invisible illness some consider 'embarrassing', I have to spend enough of my time trying to ensure I don't hide anything; so why should I shy away from discussing another part of my life this illness affects? 
As much as i'd prefer to think I have a pretty positive attitude to my disease, I am regularly and periodically disappointed to learn that I still feel incredibly angry about my situation from time to time. When this strikes I feel disappointed in myself. I hate feeling this anger. And when I say 'anger' I mean Hulk-smash, seeing someone punch a kitten angry. ANGRY. This tends to spill out and spread like wildfire throughout my relationships. I get irritable and argumentative. I get frustrated and upset. I get edgy and snappy. Knowing all the while that there is no excuse for behaving this way towards others, but I literally can't help it. I constantly relay the fact that I don't want special treatment, so why should I be pandered to when I feel like a stroppy teenager? I bite my tongue because if I said what I really felt I'd probably be in a padded cell by now being fed through a straw. 
I completely understand that having this disease can be brutal and unrelenting, and that I have to make certain allowances for feeling this anger from time to time. I also understand that it's important I remember that having this disease is not the worst thing to happen in human history. I'm not living under Hitler's rule or being tied to a chair forced to watch Mrs Browns Boys. Worst things could certainly happen. 
But knowing all of that doesn't seem to make it all any easier. I'm angry in a "why me?" way. I'm angry that I will have this forever and I'm even angrier that my partner and family and friends will be living with me-living with this disease forever. I don't want anyone to tip-toe around me incase I explode. I'm well aware these feelings are part and parcel of living with an incurable illness and of that old chestnut 'life isn't fair'. 
Sometimes when all I want to do is get home from work so I can take copious amounts of pain relief and sleep until I feel better or forget, it's hard to get excited about other people around you. I find myself feeling envious of my friends 'normal' lives - pain-free and NORMAL. Don't-think-about-every-single-morsel-of-food-you-eat-incase-it-upsets-you-normal. Don't-plan-your-evening-around-toilet-visits-normal. That type of thing. 
From time to time I feel fury at the things that have had to change in my life due to my illness and I'm not sure that's a feeling that will ever completely go away. Sometimes it's not funny and sometimes I can't laugh it off. I hate seeing others suffering and I hate that's there's nothing we can do about it. I feel I'm fighting yet another battle to avoid being bitter about my badly behaved bowels. Like every other aspect of living with a chronic illness, all I can do is continue to try and manage these feelings. I'm not going to brush them under the carpet, but I'm not going to let my inner-Hulk out either. Mainly because I just can't afford to buy a new wardrobe every time I tear out of my clothes..


Sunday, 15 June 2014

Papa was a Rollin' Crohn

My Dad is a private man. He doesn't 'do' gossip or social networking. As far as he goes in caring about other people's business is wondering why the woman across the road hasn't taken her bin out yet and why has that car been parked at number 42 for 2days..? 
He doesn't discuss illness as a general rule. Doesn't ever have anything wrong with himself and HEAVEN FORBID we would mention it if he did. Myself, I've chosen not to adopt that attitude towards my own illness however, instead going down the route of openness and honestly whenever possible. That doesn't mean I don't respect his choices, because I most certainly do. 
My own transition from complete shock and despair at having Crohn's Disease to sharing it with the rest of the world didn't happen overnight of course. I still struggle from time to time to be as truthful as I'd like about what my condition stops me from doing and how it can affect my life. 
My Dad, let's call him Richard,  because that's his name, has bestowed a glimmer of this private attitude on me that I tried to initially shy away from (for want of a better word). I didn't think there was any shame whatsoever in talking about my condition. I was frustrated others didn't feel the same, and overly defensive that people would have the gall to so much as wince at the idea of me having a bowel disease.

However I now appreciate there are certain things I DO hold back. I don't blog about my family or my relationship, and that's mainly because it's MY choice to write about my life, not theirs. They didn't sign up to have details of their life all over the interweb too and I have no right to do so. It's out of love and respect for their opinions and privacy that I wouldn't. I'm only making a small exception to this rule today because it's Father's Day and I love my Dad more than all the cats in existence put together. (which, let's think about that for a second, WOULD BE AWESOME). 
Due to my Dad's penchant for not talking about 'this sort of thing' I appreciate how hard it must've been when his only daughter became ill. I'm ashamed to say that first I was inwardly a little angry with him. I thought perhaps if we had all been more open and honest about out health and everything that goes along with it, maybe it wouldn't have taken me so long to find out what was wrong with me. Those feelings didn't last long, because it really made no difference to my situation; I was stuck with Crohn's whether I liked it or not, nothing my Dad or anyone else could say now (or then) could change that fact. It's no ones 'fault' I have this disease.
I'm proud of the aspects of my Dad's personality he's been kind enough to pass on to me. In particular his sense of humour, which is both incredibly witty and has a beautiful sense of the ridiculous. Even in his 70's my Dad can still make me laugh until my sides ache. I still tell people about his one-liners years down the line. He is strong willed, adores my Mum, he is fiercely intelligent and protective of my brothers and I. 
I know how hard it's been for him to understand my condition and I will never be angry about that because he WANTS to understand and that's all I need to know. 
Happy Fathers Day to my beloved Dad, The Rickmeister. Love to all of your Dad's and to those of you without today x 


Sunday, 8 June 2014

Misery Guts

Lately I’ve wrestled with that age old poser in living with chronic illness; ‘How much is too much information?’
Now, I already grudge the fact that I’ve had to start this post with a question, like some sort of diseased Carrie Bradshaw, but needs must. Although I write this blog and other pieces on Crohn’s Disease, I am active on social networking sites and never shy away from discussing my condition if asked, it doesn’t in any way mean that my life is based solely around my disease. If anything it’s a blessing when I have the opportunity to think about something else for more than 5 minutes. I find it still seems with some I can’t find a happy medium between talking about Crohn’s and all it means for me, and just giving a general overview of the fact that unfortunately, I’m STILL SICK.  
I find it increasingly frustrating when people assume that if they see me having a bad day (or a series of bad days) it must mean that I am depressed or that my personality has somehow warped into that of a misery-guts (pun intended). I understand it’s never all hearts and flowers with Crohn’s, but surely I am permitted some occasional wallowing time? The thing is, it’s not even proper ‘wallowing’ – it’s simply trying to paint on a smile and plough through the day when all I want to do is curl up in bed with a variety of wee cats and a cocktail of drugs until I’m not in gut churning agony. I wholly appreciate that hearing the more gruesome or worrying aspects of my illness must be upsetting for those who care about me, but on the other hand why should I have to edit what I say for fear of upsetting others?
I certainly don’t discuss those symptoms that may be considered nauseating for those without Crohn’s, but I often feel I’m forced into the position of having to ‘put a face on’ to spare the feelings of others. It’s ME who has this disease. ME who has to deal with it 24hours a day for the rest of my natural existence, and it’s ME who sometimes gets completely and utterly overwhelmed, and fed up with those far from simple facts. Yes, I am well aware that perhaps that all sounds very child-like and dramatic, and ME-ME-ME-ish, but it’s impossible not to feel that way from time to time.
Crohn’s patients, unless they have entered into that mystical realm of ‘remission’, will experience pain or discomfort of some description almost every day. They will feel nauseous and floored by treatment and fatigue.  And they will often be sick to their bowels talking about it. It’s nice to be able to forget from time to time, and it’s even nicer to feel you can share some of the burden with others.  Don’t forget that we don’t want to feel this way. We certainly don’t want to be type-cast in this particular play as the ‘sick one’ and when we are down it’s because we have normal life and all its problems to deal with alongside a relentless illness.  Crohn’s isn’t something we can predict, or turn off and on when it suits. It hands us varying degrees of misery and how we deal with it depends as much on our immune systems as our outlook. Please bear with us when that can often be as changeable as Scottish weather.