Rose Tinted Recta-cles

When I think back to my life before I was diagnosed with Crohn's Disease, it seems I'm wearing rose-tinted spectacles so tight they're almost superglued to my skull.
In my somewhat hazy memories of my pre-pain, 'healthy' life, my days were filled to bursting with fun. Dancing, drinking, romance, abandon, performing 14hr shifts with as little as a 10 minute break, never worrying about running out of toilet paper… the list goes on. However, it’s very easy to focus on the good stuff in the past when in the present might not particularly feel so great.

Torturing yourself with perhaps not entirely accurate moments from your past can be unhealthy and detrimental to your recovery. I learned this to my cost in the process of beginning to write my own Crohn’s book. I thought it would be a good idea to refresh myself in how exactly I felt pre-Crohn’s, post-Crohn’s and all the nasty gory bits in the middle, by reading my old diaries. I’ve kept a diary since the age of 14 so I had plenty to work with. I half expected to see a massive change in my lifestyle, to read dejectedly as the pages turned from joy to misery in the space of the weeks and months leading up to my diagnosis. I didn’t.

I read about a woman who was growing and learning about her body and her heart. Learning how to use her own mind, how to separate the wheat from the chaff in her social circles and how to treat those around her with kindness. I read about a woman becoming a woman, in every sense of the word, and worrying about not becoming the type of woman she, or others wanted her to be. About a woman who was completely and utterly pant-wettingly terrified about what was happening to her body and about losing herself and the people around her. I read about a woman who had a horrific crush on that boy in high school who would have received the blackest of black-eyes from her Dad if he’d so much as come within 15 feet of her.

I cried into my own pages and struggled to remember that this was me. I realised that I had felt incredibly alone in my suffering for a long time, and how happy I am now that I don’t have to go through that loneliness and confusion ever again. As I read my own forgotten words I felt sorry for this woman and wanted to tell her it would get better. That people love her and won’t desert her, and that eventually the pain will get easier to bear. And that she will end up with a hilarious and handsome man who loves cats just as much as her, because miracles do happen.

The Devil's Crohn

Often the main obstacle in getting well with a debilitating or chronic illness is you.

Many patients find themselves embarrassed, ashamed or just downright awkward when it comes to explaining their symptoms to medical professionals. Understandable of course, but utterly unhelpful. In the early stages of living with an illness like Crohn’s Disease, the more gut-churning symptoms can be somewhat hard to stomach. [Other tum related clichés are available]. It can be an incredibly embarrassing time expressing what’s going on ‘down there’ to anyone outside of your triple-locked diary. For me, getting to grips (literally and otherwise) with my own bodily functions was a far from easy process. It can often feel as though you are forced to endure a continual series of humiliating tests of will-power as you progress towards a diagnosis.
In my relatively short history with the disease I’ve had countless men and women investigate my every crack and crevice, insert implements of mild torture into every available orifice and collect samples of my outpourings for investigation. I’ve also had some medical procedures done too.
From day one there has been a continual feeling of “well at least I’m not getting [insert unappealing procedure here]” –until I inevitably get said unappealing procedure. Repeat to infinity. Things I thought I’d never be able to tolerate, I have. Not because I am in any way ‘brave’ or fearless, in fact the complete opposite; but because I’ve had no choice. Pain in itself isn’t a choice; it’s forced upon you. So when you encounter someone who may be capable of helping to ease your suffering, you grab the chance, regardless of what unpleasantness you might have to endure to get there. If not, the you are the fool. You are causing yourself unnecessary misery and are standing in the way of your own wellbeing. And you are allowing yourself to feel at your worst. No one, I repeat NO ONE, likes having needles and cannulas inserted into their veins, or having cameras inserted into their rear ends or down their throats, no one wants to find themselves reliant on medication and pain relief to get them through the day - but what is the alternative? Unrelenting and self-imposed misery? Again, there is no choice.

Much like the emails I constantly receive asking if I want to enlarge my penis, suffering in silence is pointless. Talk to someone about your symptoms before things escalate and get over yourself. If you have to deal with something unpleasant to aid your doctor in finding the right treatment for you, then woman up and get it done. In the long run you will feel embarrassment drift away and find it replaced with nothing but pride at what you’ve endured.

 

Update: I’ve been checking my briefs for weeks and there is still no improvement on the size of my penis.   

The Future is your Crohn

I've slightly neglected my blog lately for various reasons. I've spent more time writing my regular posts for the Crohn's Forum, I've been working, I’ve been in and out of the doctors' surgery in the process of getting tested for various other potential ailments, I’ve been trying to maintain some semblance of a social life, and I've been sick. All not excuses just reasons. But mainly I've been trying to work on 'me' and how to make myself happy.
I'm pretty sure this sounds like an incredibly easy and straightforward task, but in reality it can be an extraordinarily difficult and often painful experience. 

When you take human existence back to basics, all we really need are food and water, the ability to breathe and rest. So why do we worry and stress ourselves over the most insignificant of issues?

I've come to realise I've spent much of my life 'catastrophizing' [therapist-speak for always seeing the worst case scenario and acting accordingly]. I've panicked over the smallest and most insignificant issues and that's clouded me dealing with the bigger ones. This is absolutely in no way uncommon. We are all guilty of this to varying degrees. I’ve started on my journey to fix this by making some small but incredibly positive changes in my day to day life. For starters I am trying to deal with each issue that rears its head with a level of panic and downright terror it deserves. For example, previously, upon establishing that our boiler had packed in, our oven broken down and shower ceased showering all in the one week, I may have, in lesser enlightened times thrown my proverbial toys out of the pram and had the tantrum to end all tantrum’s. (Inwardly though). I’d panic and stress and do rapid fire calculations and write lists upon lists, create pie-charts and hold focus-groups with members of the local area to work on various solutions. (The last two may or may not be exaggerated).

Now I seem to have reached a point where I am more at peace with my life and my illness. I realise I can only do one thing at a time. Women may be considered excellent multi-tasker’s, (for example I am currently writing this blog alongside checking my Facebook AND Twitter), but when it comes to piling on the pressure it’s just not necessary. And certainly isn’t good for my already shaky health. 

I of course understand that I will still feel this panic and overwhelming pressure from time to time but I think I’ve learned not to let it rule the roost. By throwing out ways of behaving or thinking that weren’t working for me I feel more positive and more excited about my future. My insides and pensioner-esque body may not look it but my future feels pretty rosy.

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.