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..

                

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 

                         

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.

Young Arse, Run Free

When I was around 14 years old, I was awkward, lanky and both wise beyond my years but totally naïve. 

My main concerns included worrying about kissing boys (it says in Cosmo I should bite their lips, but that can't be right?), growing boobs (can I get away with socks in my training bra?) and passing my exams (my life will essential be over if I don't). 

I dreamed of being an artist but I had absolutely no confidence I would achieve that goal. I liked my work for approximately 5 minutes, then the longer I stared at it the more flaws I could find and the closer it came to ending up in the bin. I was besotted with Andy Warhol and Gustav Klimt and Rene Magritte and had absolutely no one to talk to about these obsessions other than my geriatric, male, pot-smoking, art teachers.
I jumped into massive art history books and spent long hours in the art room drawing and actively trying to avoid the advances of the creepy class assistant who tried to woo me into the dark room on an almost daily basis. 

Don't misunderstand me though, I wasn't lonely, I had lots of lovely friends and lots of lovely laughs, but I just didn't think I was particularly worth bothering about. I wasn't depressed, I just liked my own company just as much as having company. I read books and sketched and watched Vic & Bob videos until I knew all the skits off by heart and they weren't funny anymore.

Apart from the lack of chest activity, I certainly didn't know my body was any different from anyone else's. 

Years later, when I was at art school and ensconced in a love-bubble with my then boyfriend, I had developed a 'party trick' whereby if I lay flat on my back, (you can keep reading Dad, don't worry) I found my stomach went into overdrive and made sounds akin to a whale giving birth. It wasn't painful, I just felt sick and bloated after eating only a few bites of food. Every time. But that was the same for everyone, right? I was just being greedy. Maybe I had a smaller stomach than my friends? Or maybe I was just eating too much chocolate and drinking too much fizzy juice? I've not actually been sick so it's nothing to worry about. I just need to grin and bear it, maybe eat less? 
 

I tolerated these weird feelings and barely ate for around 10years before I went near a doctor. They asked me questions that made me realise I've felt this way forever. I don't remember a time when I've ever enjoyed a meal without pain, bloating, diarrhoea or nausea. 
 

When I was around 25 and I began to find myself in unbearable and excruciating pain, I eventually went to my surgery. I could barely stand upright and walking was suddenly a concept that seemed alien. I had set foot on the long road to getting a diagnosis. I wasn't scared, I just wanted to the pain to stop. Anyway possible. 

When I was told I had appendicitis and I had to get my appendix out I was overjoyed. In a few hours I'd be better and the pain would be gone. Only I didn't have appendicitis, so my appendix stayed put and the pain was still there. A few months later I was finally diagnosed with Crohn's Disease and ever since, I've been sliced and poked and prodded and had implements inserted in orifices I'd rather not have. But enough about my private life. 
 

The reason I'm relaying this not so sorry tale is because I don't ever want anyone else to feel alone or frightened or that there is something about your body that just doesn't feel quite right. Talk to someone close to you; a friend or family member. If you can't do that comfortably then talk to a doctor. It's absolutely vital you share your fears with another human. They might not be able to diagnose you first time, or make the pain go away, but they can certainly bear some of the burden and maybe help you feel less alone.
Only you know your own body, if you feel something is not quite right then speak up. It's the only way you'll get closer to feeling better.
 

              

Cloak & Gagger

There’s a certain ‘inspirational’ quote I see bandied about social networking quite regularly. Something twee along the lines of “the strongest people fight their battles in silence” – I hate, hate, HATE it. Let me count the ways in which I hate it. For a start it’s wholly inaccurate; how many ‘strong’ people have been surveyed to reach this conclusion exactly? They surely can’t have advised they are ‘fighting a battle’ because they are clearly mute. Did they write their issues on a white-board to express the level of their strength? Or did they arm wrestle someone to the ground to prove their superhuman might?

I also dislike the impression it gives that people who are open and talkative about their illnesses are somehow in the wrong or ‘faking it’. Or, even worse, that they are the opposite of strong; weak. This is something that every Crohn’s, Colitis, or Cancer patient I have ever met, has NEVER been. This daft quote also implies it’s a good and somewhat brave thing to do to keep your pain to yourself.

I’ve been living with a chronic and incurable illness for some years now, and here’s what I’ve learnt about ‘suffering in silence’ – it doesn’t work.

Silence leads to feelings of isolation and loneliness. Silence causes people to make assumptions about you. Silence ensures you reach the wrong conclusions.

Don’t get me wrong, I don’t think everyone with a health issue should necessarily be shouting it from the rooftops, boring the drawers off everyone they meet by describing every twinge or bowel movement in graphic detail. But I do believe remaining silent about the difficulties you face doesn’t help in any way. Especially when you have been recently diagnosed. Finding out you have a serious, debilitating and life-changing illness can be a terrifying and incredibly uncertain time in any person’s life, whatever age they may be. It’s absolutely vital a patient has someone to talk to. This can be anyone you feel comfortable with, from your doctor or nurse, friends or family, or a colleague. Even relative strangers on social networking and in support groups can quite comfortably and gladly take some of the burden from your weary shoulders.

I’ve personally been on both sides of this conversational coin and I know now that I could never go back to keeping my disease quiet. For one, I am not ashamed of my condition. Remaining silent on what I go through would only cause those feelings of embarrassment and shame I once had, to return with a vengeance. I never want to feel alone, it’s one of the most miserable feelings in the world. I want to continue to reach out like a hungry baby clutching for a bottle towards the people who love and want to help me.

This doesn’t mean I tell everyone and their cats about my illness. I certainly don’t. Not because I am ashamed or afraid of what people may think, but because my condition isn’t relevant to every conversation I have with every person I meet. Like my love of cats, David Bowie and ridiculous 1940’s frocks, some aspects of my life are only privy to those who have been lucky enough to penetrate my inner circle. Obviously I now have to painfully include certain doctors in that bracket L

 When I was first diagnosed with Crohn’s Disease I was terrified, withdrawn and thought I was going to die. I was bombarded with information but couldn’t see beyond the fact that it was ‘incurable’. Doctors spoke at me about treatment and recovery rates and remission but all I could see was their mouths moving and smiling pitifully at me whilst I tried to stop myself from crying feebly every time they came near me. I cried a lot. My family and friends cried and we tried to stay positive all the while knowing we were acting out Oscar worthy performances to make one another feel better. It didn’t work. I got flowers and chocolates and magazines and cards and felt special for 5minutes then remembered why this was happening and sunk back into feeling pathetic. I told everyone I was ‘fine’ or ‘getting better’ because it was what they wanted to hear, when all I really wanted to do was soak their shoulders with tears until my eyes were barren. Strong eh? No, it wasn’t. But when I stopped crying and the shock wore off and I started telling the truth, I’ve never felt stronger. I won’t ever call myself weak again because I may physically be too fragile to lift a book at times, but mentally I am more determined than ever.

Disease Release Me

Hello again. If you’re reading this you are perhaps a friend, my Mum, or just an all-round lovely person. Or possibly you have a fetish for bowel issues. In any case those are all utterly acceptable reasons and I’m very pleased to meet you. If you have read this blog before you will know that I have Crohn’s Disease and I try to regularly document my life with it here. It’s a very rocky road I tread with this disease and not the good kind with marshmallows and chocolate and bits of chewy stuff that I’m still not sure what they actually are. (What are you little guys and why do you taste so good?!)

Anyway, as it’s World IBD (Inflammatory Bowel Disease) Day this Monday, I just wanted to take a moment to reflect on how equally cursed and blessed I’ve been in the past few years since I was finally diagnosed. The kindness of others has made me see humanity is essentially good. It’s spurned me on when situations have been hairy and as rough as my legs during a Scottish Winter. I’ve had to face challenges in the last few years I’d never thought I would ever have to. Challenges I certainly never would’ve thought that I could ever feasibly overcome. I’ve shown myself I can be brave and stronger than I ever would’ve thought possible.

Crohn’s Disease is an incredibly debilitating condition which has no cure. It causes agonising symptoms at its worst and is an endless inconvenience at best. It can be ‘controlled’ but nothing more. It affects it’s sufferers in minor and major ways, and can floor patients at the drop of a diseased hat. It’s taught me the resilience of my fellow ‘crohnie’s’ is both surprising and wonderfully unrelenting. It’s given me faith in myself and my future – it’s not bleak and it’s not going to be all about Crohn’s. It’s going to be as bright as I want it to be, as bright as I allow it to be. NOT as bright as my disease allows.

I’m finally starting to feel proud of myself. I previously thought that every nasty procedure, every stay in hospital, every day when I’m in work when I want to be hibernating in bed, was just life. My life. I don’t deserve praise for what I should be doing. I don’t want it, don’t get me wrong, but I want to start praising myself for these little victories. As should everyone with a chronic illness. Things such as getting out of bed, getting dressed and carrying out a day’s work aren’t akin to running a marathon for most people; but they are for us. Therefore it’s really ok to give yourself a pat on the back when you cross your own finish line.

Be Our Guest

I've been writing regular 'guest' blogs for the Crohn's Forum website for the past few weeks now. I'll be posting these above in the 'Guest Blogging' section, but here is a quick catch up of any you may have missed/attempted to avoid so far ;)


'Crohnly You' (March 24th)


http://www.crohnsforum.com/blog/?p=120#more-120


'Bear With Me' (April 7th)


http://www.crohnsforum.com/blog/?p=177#more-177


'Like A Bridge over Toilet Water' (April 24th)


http://www.crohnsforum.com/blog/?p=219#more-219


'One, Two, Three SORE' (May 8th)


http://www.crohnsforum.com/blog/?p=246#more-246