Thursday, 29 May 2014

Young Arse, Run Free

When I was around 14 years old, I was awkward, lanky and both wise beyond my years but totally na├»ve. 
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.


Friday, 23 May 2014

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.

Saturday, 17 May 2014

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.

Saturday, 10 May 2014

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)

'Bear With Me' (April 7th)

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

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

Friday, 9 May 2014

Do you Rear what I Rear?

Lately I’ve seen a lot of offensive and incorrect articles in the press in relation to Crohn’s Disease. Within the UK and across the rest of the globe. Most of these offending articles have either got their facts entirely upside down, or have just straight up lied about the severity of the condition.

There still appears to be major confusion between IBD (Inflammatory Bowel Disease) and IBS (Irritable Bowel Syndrome). Written down, there is merely one letter of a difference, so an easy mistake to make one could say. However these mistakes can be incredibly and increasingly damaging to the wider worlds’ understanding of our diseases. My last post specified in a lot more detail exactly what IBD entails – not a pretty picture to paint – but it’s vital for us as patients people know the difference. I have several friends with IBS and I know it’s no walk in the park from time to time. However it’s not an incurable illness with countless horrific symptoms which can, in extreme and heart-breaking cases of complication; kill. Something I rarely want to even consider let alone draw attention to.

With incurable illnesses such as Crohn’s Disease or Ulcerative Colitis, we fight a constant battle to try and make people understand how difficult our lives can be. At work, with friends and families, in our social circles and sometimes even with medical professionals, there is often a continuous and relentless clash between facts and fiction as far as the intricacies of Inflammatory Bowel Disease go.

It royally infuriates me that people still frequently feel Crohn’s is as straightforward as IBS. But when articles float around stating this is the case and lumping the two together as some sort of tummy-face off, it’s almost understandable. (Which just in turn, sends me into even more of a Hulk-like rage).  It can be like battering your diseased head against a brick wall trying to ensure people understand, or are at least aware of how crippling IBD can truly be, and how much of a devastating impact it can have on every aspect of a patients’ life. I don’t mean to depress but I often feel borderline pathetic and childlike when I try to express the issues IBD can raise. “But I AM chronically ill too!” sounds like Justin Bieber on helium in my head so I can’t imagine how irritating it would be if I actually said it out loud. I regularly want to scream with frustration when it’s as much as implied that Crohn’s is anywhere near IBS, so I have to keep a lid on those feelings for the sake of my own sanity. (And to avoid murder charges).

If anyone is in any doubt about the complexities or even the basics, around chronic illnesses such as Crohn’s or UC, please, PLEASE ask someone who has it. We know what it entails as we live with it 24hrs a day, 7days a week. It doesn’t leave us and often causes unyielding misery. Please don’t add to that misery by insinuating its nothing to write home about.

Sunday, 4 May 2014

A League of Their Crohn

May is IBD Awareness Month, and on the 19th, World IBD Day.

For the uninitiated, IBD = Inflammatory Bowel Disease and includes three incurable illnesses; Crohn’s Disease, Ulcerative Colitis and Bowel Cancer. Any form of awareness for these much misinterpreted conditions is absolutely vital in helping others understand the complexities of them and in helping us get closer to finding a cure. So although I’m sure most of you who read my blog are more than aware of what my fellow sufferers and I go through, it never hurts to educate those who perhaps aren’t quite as clued up...

These illnesses are ‘autoimmune’ diseases; which basically means that our bodies are attacking themselves. Our immune systems’ are trying in vain to fight back, which unfortunately results in a constantly losing battle. Some of the more delicious symptoms of IBD are; excruciating abdominal pain, severe weight loss, sickness, anaemia, chronic fatigue, hair loss, our bowels becoming swollen and ulcerated, painful strictures and holes in the bowel forming through the abdomen (fistulas).

There are currently no cures for these conditions, only treatments, most of which come with an array of horrid side effects. It can be incredibly difficult to find the right fit of medication for each patient as the symptoms and extremes of them in IBD differ greatly from person to person. These treatments can vary from supposedly straightforward anti-inflammatories and/or steroids to injections the patient can, in most cases, administer themselves (these are a mild form of chemotherapy). Side effects of drugs used to treat IBD include; weight gain, painful bloating, swollen face, aching joints and muscles, insomnia, ulcers, anxiety attacks, memory loss, nightmares, constant hunger, heart palpitations, constipation, cramps, pain in the abdomen and various other parts of the body, confusion, and hallucinations. Mental health problems such as depression can also occur if patients are on these drugs for long periods of time.

Myself, after trying Prednisolone (commonly considered the bad-guy of the steroid world), Pentasa (slow-release tablets and granules), a completely liquid diet (unfortunately not the 40% proof stuff), countless other medications, and finally surgery to remove the most badly affected part of my bowel, I’m currently on another tasty drug called Mercaptopurine.

Some of the many unpleasant side effects of this drug include diarrhea, nausea, vomiting, loss of appetite, darkening of the skin, immense fatigue, weakness, skin rashes, stomach/abdominal pain, and hair loss. More serious adverse reactions include mouth sores, fevers, sore throat, finding you bruise or bleed more easily, yellowing of eyes or skin, and painful or difficult urination. Mercaptopurine also causes ‘myelosuppresion’ which basically means it suppresses the production of white and red blood cells. It can also be toxic to bone marrow, so patients who take it are required to undergo weekly blood tests to ensure they continue to tolerate it. Like most drugs used in treating IBD, Mercaptopurine can be a case of trial and error; it takes some time to establish what dose each patient can bear without it becoming adverse to their recovery.  

Medications, symptoms and side effects aside, suffering from a chronic illness can often feel like a full time job. It’s tiring enough in itself keeping track of ordering prescriptions, picking up medications, arranging blood and various other tests, seeing specialists, doctors and consultants and all the while trying to fit in having a ‘normal’ life around the whirlwind of your medical-schedule.

Despite the simple fact that Crohn’s Disease has turned my life upside down, it’s also shown me who I can rely on when times get tough. It’s made me see just how much I underestimated the love and support of my friends and family; something I’ll never do again. I’ve met some incredible people I’m now lucky to call friends who have shown me the strength and resilience a human can reveal even at their lowest ebb. I know when I’m at my worst I have people I can turn to for kindness and a friendly ear if nothing else. Something everyone needs, diseased or not. Being ‘aware’ of IBD isn’t just about learning what the gruesome side effects are, it’s also about reaching out a helping hand to another human being who might not necessarily look sick, but just might need it.