I’ve had a good run! 5 years counting with no flares, very little pain and managed disease on low dosage of Azothioprine, diet and lifestyle but just a little blip in the master plan of conquering Crohns Disease… I’ve found myself back in hospital with a fistula and an abscess. Whilst visiting Matt on the Isle of Harris, a pain I’d had in my lower back got increasingly worse, I started feeling infected, I was hallucinating, throwing up, and the pain was becoming unbearable. Took myself off to the local A&E on Stornaway where my temperature had sky rocketed, I was irritable and in a lot of pain. The nurses and doctors were amazing; they had me assessed and prepped for surgery in less than 3 hours where they made an incision down my left bum cheek to drain the abscess and suture the fistula. The surgery went really well and I’m now in very little pain at all but it very quickly shot me back into a really dark and terrifying place that you can often find yourself falling into with a crohnic illness. It had me thinking about the long term; how is this going to effect my work? how is this going to impact all of the adventures I had planned this year? Will this happen again and is there anything I can do to stop it? Will this leave me incontinent in the future? Will I need an ileostomy bag again? There are to many questions swimming around in my head that, coupled with my body being filled with pain killers, I very quickly ended up in a full blown panic attack. But reading back over some previously blogs I’d written reassured me that I’ve been here before. I’ve been in that place that feels so completely isolated and lonely and as if no one has ever felt how you’re feeling and the thing that re-reading my blogs made me realise? It passes. It passes really quickly when you remember how wonderful the doctors and nurses are, or how quick your family and friends are to rally around you. It passes, and I think that’s the thing to remember to anyone reading these blogs…all of this is temporary. There will be respite from whatever pain you’re feeling or whatever dark place you’re stuck in. Allow all of the negative feelings to happen, share them with someone you trust and let them wash over you because it will get better, it might just take your body a little time. I’ve always found writing cathartic, and a lot of that in the past 5 years has been privately in a blog or a diary but some times it needs to be shared. I know some very close friends who have been stuck in this really shitty, dark place for a while now but believe me, it’s temporary. Crohn’s Disease doesn’t make you, and don’t you dare let it break you. You will be okay.
I’m a little lost, two years down the line and I still don’t think I’ve grasped the concept of having something for life. I mean, sure, we’ve all thought about finding your soul mate and spending your life with them. Or getting a tattoo and having it blend into how you define yourself. These are the things you want, the things you search for, but when something is forced upon you, and you have no say in the matter, it is a completely different story. I’m trying to find the words to explain what it is like to have a doctor tell you that you have an illness, a disease, something that will effect your daily life for as long as you dare to imagine that life will last. It infects you, the thought that it is lurking, somewhere, anywhere, everywhere. In your joints, in your bones, in your mind. You wonder if that is what will define you. If people think of you and think of it. I’m struggling with the concept of being on drugs for the rest of my life also. It feels so completely unnatural to force a man-made chemical down my throat every day, just trusting the ‘specialists’ word that this is the best drug for me. As if they know me. As if they think of me as something other than a statistic, I’m 1 in a 1000. That’s all I am. nothing special, just another number. But I think they forget that this is the only body I’m ever going to have, I don’t get a second chance at any of this, and if all we boil down to is numbers then I’m gonna be 100% sure I squeeze every ounce of knowledge out of every specialist, every doctor, every blogger, every nurse, every patient I come across. I will work out the real statistics, from the real people that matter. I will sign up to every medical research trial, give blood at every blood test, try every insane, unorthodox ‘cure’ that there is. But I won’t give up. Not until that day I dared imagine comes along.
Fear [feer] noun – a distressing emotion aroused by impending danger, evil, pain, etc., whether the threat is real or imagined; the feeling or condition of being afraid.
To feel fear, I believe, is to feel alive. When one is faced with a situation of flight or flight, what is the immediate response? To feel that surge of adrenaline coursing through your veins, the throb of your blood pulsating at your temples, the cold sweat beginning to slide down your body, gravity pulling it downward. Do I run? Do I hide? Fear is an unrequited love, smothering you with it’s greasy hands. Raping your senses. You can smell fear, you can hear it ringing in your ears, taste it on your tongue, but most of all, you can feel it. In that one moment, you realise your wildest nightmares don’t compare. The little things no longer matter, the anger you felt when you couldn’t find your keys, or the frustration at hearing something someone had said about you become irrelevant. In this moment you and your instincts run hand in hand. Your body will do everything for you; breathe, bleed, cry. You’ll have no control.
When I really think, I fear many things. I fear that Crohn’s Disease will come back, I fear it comes back more determined and does it’s job properly next time. I fear it spreads to the whole of my digestive system. I wonder how many times in my life I’ll be admitted to hospital. I fear for my future children, will they suffer with Crohn’s? Or maybe the Crohn’s gets my reproductive system and I can’t have those children? I will always have those fears, but that’s all they are just now, and I hope that’s all they’ll stay. Tucked away in a not too far corner of my mind.
Last week was a terribly sad week. Alison Atkins, a beautiful ambassador for IBD and ostomy bags passed away. She had an extremely hard battle with IBD and everyone is devastated to hear she had passed away. At only 16 she had a very tough life battling bowel disease. She always had a smile on her face, and helped many people come to terms with having an ostomy bag. She will never be forgotten. Rest in Peace Alison. x
“one day, much too soon, the end will come to each of our precious, brief lifetimes; knowing this; live fearlessly; leave unchallenged not a single obstacle between yourself and the realisation of your most joyous dream”
With this being said: I’ve decided to finish my studies at university. Yes; I adore learning about the human mind, I am like a sponge, absorbing each molecule of the fascinating, intricate, beautiful workings of the wonder that is the human mind. I could sit for hours reading books, articles and the dreaded online journals simply to leave myself asking more questions than I started off with. I love psychology, it is to me as water is to a fish: vast, captivating and necessary. However, I will forever be learning about the mind. The past five months have taught me more about the mind than any book can. It is an incredible thing. Capable of storing hundreds of thousands of images, sounds and tastes. Capable of blocking out memories too raw for you to re-live. Capable of allowing you to forget excruciating pain and reminding you every day of what you are on this planet to do: live. Some view religion as their path in life, to spend their time preparing themselves for a life in heaven. Some believe they are on this planet to work, to set a goal and achieve it. Others simply have no understanding as to why they are here…yet. Some see the good in everything, others, not so much. But each and every individual is here to live. I highlight the most important word in this sentence for extra emphasis: It is only you, the individual that is capable of paving the way for your own future. I recently had what you would call an ‘off day’. I was full of hatred, blame and denial. I was angry that I was sitting in my house doing nothing, because I couldn’t do anything. I was immensely frustrated that I was told not to lift anything heavier than a kettle, I was furious at my body for being painful and I was terrified that this wasn’t the end of all my suffering. It had finally sunk in that Crohns disease is like a puppy; it is for life, not just for Christmas. Was I ready for this commitment? Could I face the fact that I may be back in hospital in a month, a year, a decade? What surgeries do I face in the future? How many more tubes will I have to have stuffed down my nose? How many things will I be unable to eat, or drink? – I was spiralling, being consumed by an unknown fear of the future and what possibilities it held. My mind is constantly thinking about my bowels, every sound they make has me on high alert, each cramp sets my adrenaline pumping: if I am to be honest with you, I am completely and utterly exhausted. I need a break from my body, I need something that will allow me to escape, so with each stomach gurgle, I urged myself to write, write and write and you know what? I feel so much better. What is the point in living life if I am afraid of what’s to come, that’s just time consuming. I re- read what I have written and I’m taking my own advice, surrounding myself with good people, good music and good food. The three things that make my life what it is: incredible. I may not wake up each day with a smile on my face but it certainly makes an appearance at some point and right now, that’s all that matters to me.
“Life is like riding a bicycle, to keep your balance,you must keep moving.”