A nurse told me recently that it was just as well I have a sense of humour. This was said as she had to make a third attempt at taking blood from my hands, the second attempt hit my bone and I knew if I didn't laugh I would end up letting these things get to me, there would be no point as I have to get this done once a month, every month and this won't ever change.
Having a sense of humour is useful, actually it is essential, to get through the day when you have two different auto-immune conditions. For the (luckily) uninitiated, auto-immune conditions are those where your body goes a bit haywire and starts thinking it's own bits are foreign and attacking them, like a mighty war going on inside your body. There is nothing you can do to foresee, prevent or cure this, all you can do is manage it and try to laugh about it.
Ding-ding Round 1!
The first illness/condition/disease (whichever makes you less squeamish) I was diagnosed with was Oral Crohn's Disease (when you say the word 'disease' to anyone they automatically back away until you explain, for the umpteenth time, that it isn't infectious). The first signs of there being anything wrong were exhaustion and a bottom lip that had swollen so much that I looked like I had a sausage stuck to my face where my bottom lip should be. Kids stared, adults stared and asked if I had 'what that Lesley Ash' had done and all I could do was keep going, you don't get a choice. Only one single photo exists of me from this time, it is just unfortunate that it is my provisional drivers licence, I look like an entirely different person.
So the massive sausage-lip was what finally started diagnosis, after lots of head scratching, umming and aahhing, being stared at by GP's, dermatologists, surgeons and medical students I was finally sent for a biopsy. The biopsy was taken from the inside of my cheek by the nicest medical professional I have met (and I have met a lot of them). He was kind and calm and told me what was going on and what he thought it was and reassured me the biopsy was needed to confirm it. So, after some stitches, drooling and a couple of weeks of waiting it was confirmed I have Oral Crohns Disease (CD). To reduce the sausage-sized lip I had to have three courses of five injections into my lower lip and if there is anything more painful that that then I have yet to experience it (this will be surprising later!). This is where the sense of humour kicks in, 'Ha!' I thought, 'People pay lots of money to have this done in the name of beauty! Suckers!'. There were few noticeable side effects and nothing too scary to live with, a sore face, ulcers and tiredness but nothing I couldn't cope with.
Ding-ding Round 2!
At the time there were no other signs of CD in my body however just over two years passed until I started to display symptoms of something else. I would be doubled over in pain, tears streaming down my face as it felt like someone was kicking me in the stomach. The pain would pass though, what was worse was the relentless exhaustion, not tiredness but actual physical exhaustion no matter what I did or didn't do or eat or how long I slept. I was so tired I couldn't see family or friends after work as all I could do was rest, I was 23 and living alone, this was not a great situation to be in. More doctors and more head scratching (albeit less than last time) and I was sent to see a gastroenterologist. Once again that ol' sense of humour proved useful while drinking a barium meal. Sat in the cubical, trying my hardest not to vomit (as I knew I would just have to start again) I amused my self by thinking 'Hey! I am radioactive! Do I get superpowers now?!'. Sadly, no superpowers were bestowed upon me, just a very sick feeling, an order not to sit next to anyone for two days and a horrible time of it going through my body. The test indicated problems in my intestines so next up on the magical mystery tour of medical procedures was a colonoscopy. Yes, it's a camera on a flexi stick to look at your insides from the bottom up (literally). I would say that it is exactly as horrible as it sounds except I have no memory of the procedure at all.The preparation however remains vivid, very large doses of a ginger flavoured laxative which is why I hope that was a once in a lifetime opportunity to not see my insides. You are supposed remain lucid during the test but I was out cold. I remember being told to lie on my side and the next thing I remember is waking up alone and not being able to stop crying. This earned me the nick name 'Tiny Tears' from my little sister who had to help me up and help me get dressed all the while I am crying and woozy. This was 7 years ago, I still get called Tiny Tears. The presence of Crohn's Disease in my intestines was confirmed. Argh! My body is at war with my intestines! Argh!
Once again, humour was necessary. Visits to the gastroenterologist became visits to the 'Bum Doctor'. A visit I doubt I will ever be lucky enough to forget was getting undressed after being told to go behind the curtain for an exam ( I thought 'Ok, he is going to do same rectal exam as last time), lying down naked bum facing out only to shock and embarrass the doctor as he was going to do an abdominal exam but failed to explain this to me. In hindsight this is hilarious, I managed to fluster a man who looks inside bums and guts for a living with the sight of my naked bum!
After the diagnosis things were never really the same, I take daily medication to control it, was initially on steroids (which, being asthmatic, I had previously had so thought I knew what to expect) but this was different. Higher doses for longer were required to get the CD under control, the tiredness got less but never totally left, it never really has. But you learn how to cope with it, learn how to calm panicked family and friends and learn day to day what it means for you as it is different for everyone. The most important lesson I have learnt is to never, ever google the name of your disease and then press on images. Boak.
I mentioned I have two auto-immune conditions but this is enough for now.
The scores are Auto-Immune Diseases 1 - Alice 0
Come back soon to see Alice vs Her Own Body - Grudge Match.
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