Today marks 5 weeks from my last abdominal attack. I will put that in prospective, I nearly ended up in hospital 6 times at the beginning of this year with a 3 week break in between. My last inactive period (directly before this one) was before I started the treatment plan – and that was 7 weeks. Do I think the drugs are helping? Well it’s hard to tell. If I can stay in remission for lets say, 3 months, then I will start singing the benefits of the drugs. You will notice that I said abdominal attack above, during my consultation with the ‘specialist’ I was interested to find out that I was showing just about every common symptom. Yes, there’s the abdominal pain and distension, also common are migraine headaches, joint inflammation (arthritis), skin irritation and rashes – there is rather an extensive list. I managed to tick all those boxes, but until the Crohns diagnosis I thought I had bad eyesight causing my headaches, hereditary arthritis and some mystery rash, which has been treated with every cream under the sun to no effect. I guess its good that I don’t have like, 5 different problems, but its not good that these other symptoms aren’t tracked and they don’t start ringing alarm bells when people start exhibiting several of them at around the same time. I am still suffering migraines intermittently. Most are manageable with the liberal application of painkillers, Tuesday night was the worst I had ever suffered – and I’d had some crackers. One of the frustrating things is your never sure if it’s a Crohns symptom or not? I assume that if the specialist said Crohns is the root of most of my long-term health problems, then he is speaking from experience. Then again – this is the same man who didn’t know what the drugs he was prescribing looked like.
I don’t know how many people who read this have ever had a migraine. So I will start of by saying there is a big difference between a headache and a migraine. Headaches throb at the back of your head, they are annoying, yes, but you can still function.
I have been a migraine sufferer since my teenage years. At the start they thought that these intense headaches were because my degrading eye sight. As I said above, my specialist believes they are a symptom of Crohns disease. Peachy. Generally my migraines start out as plain old headaches. I only start to realise its not when you chug 2 glasses of water and it does squat to the quiet throbbing. At this point I realise its not going to stay quiet throbbing for long – very soon it will grow teeth. My usual solution is to take 4 Extra Strength Aspro Clear (equivalent to about 2000mg), wait 10 minutes and continue with my day feeling that my head is detached from my body – better than the alternative for sure. If I don’t get it under control, things spiral out of control quickly. I end up feeling like my head is in a vice and even wrinkling my brow ends up causing unimaginable pain. This progresses until I feel like I have a knife sticking out of my head (you know those novelty headbands with half a knife on each side so it looks like its going through your head – like that). I develop sensitivity to light, I start to heat up and it culminates with me being physically sick. All you can do is lie in a dark, cool room and pray to whatever you believe in that the pain will go away soon.
Tuesday afternoon, I started to feel like that. Being quite astute at reading the signs with years of practice under my belt, I downed 4 Panadol and waited for the numbness to start – but it never did. You see along with all the medication I have to take now, there is a lot which I have to stay away from. That includes Aspirin, Nurofin, Disprin and Panadol Fort. I can take Panadol. No, that’s it. That’s the only painkiller which wont make me worse. Yep, Panadol. I have got news for the entire medical profession, Panadol doesn’t fucking work. Nope, not even a little bit. So I thought that (in my partners words) I wouldn’t let it get the better of me. I packed up and went to the bowl, late of course. During the drive to the Bowl, which will remain nameless, I found it hard to concentrate. So hard, I was having to push myself to focus on staying in my own lane. “This is new and exciting”, I thought as I turned into Ashmore Road listening to the end of Hack. It was indeed new – I had never lost focus before.. been in pain, yes, dangerously lacking the ability to concentrate, no. I went to the counter to pay, and the female attendee who had always been bitter and nasty to me, made her normal quip about paying on credit. I responded with the following: “perhaps when you get diagnosed with Crohns Disease and have to pay $300 a month for medication, you can comment on my financial state”. She and the assistant manager gaped at me, as I collected my money with tears in my eyes and stalked off. Tuesday was not the day to fuck with me. Bowling is the last luxury I had allowed myself – it was the only activity I want to keep – that I am fighting to keep. My family from Nerang Bowl, a lot of them bowl in my league on Tuesday, their warmth and caring has always pushed me on. I love them all, every single one more than I can say. It will break my heart if it comes down to me giving it up.
Anyway, I proceeded to bowl on the less that stellar lane conditions tentatively. The first game was all the focus I had left. Once it was over, so was I. Things went down hill quickly as I felt like my skull was splitting down the centre. I pulled out of the last game – something I’ve never had to do before, and I hope to never have to do it again. It was so bad – I had to ask someone to help me out to the car… How awesome and independent am I?
The drive home was the hardest thing I have ever had to do. I couldn’t think. If I hadn’t have done that drive 1000 times before I don’t think I would have made it. Right toward the end, my sight began to blur and I was in real trouble. Happily I made it, thankfully in one piece. My partner and I discussed later on how dangerous it was for me to drive home in that condition, at the time though, I didn’t think about the process of making my way home, just the goal.
I stumbled in the door, muttered something then staggered into the bedroom. I lay there thinking that may help it. It was cool, dark and quiet, but no relief came. The pain eventually brought me to tears as I sat on the edge of the bed clawing at my eyes – thinking if I could rip them out at the sockets that would stop the pain. I begged for Aspirin to dull the pain before I started to heave my guts up. Stocker was reluctant, he knows that I am on an obscenely high dose of Anti-Inflammatories as it is, taking the Aspirin could have pushed me over the edge. I reminded him that I had been popping one form of anti-inflammatory or another for 10 years… I am sure that 2 Aspirin wasn’t going to kill me. I lied, I had no idea what it would do, but anything was better than feeling my brain pushing hard up against the sides of my skull. By some miracle I got it down and kept it down even though I was gagging pretty solidly. I lay down and it took effect in less than 10 minutes… The pain went from migraine to headache quickly, the next thing I know I was being woken up two hours later as Stocker got into bed beside me. The migraine was gone – for now.
This experience raised a lot of questions with me, sure, my abdominal pain seems to be on hiatus, but the other symptoms seem to be worse than ever. Are the drugs doing it? Or is Crohns just reaching out since it cant attack its normal haunts? Most importantly, if Panadol (paracetamol) doesn’t work with strong pain, what are you meant to do? Just ball up and wait till it goes away by itself? What if it never goes away by itself?
It’s a real wake up call – perhaps this medication is effective against abdominal Crohns – but what about the rest of your body? It seems you stop it from doing its work somewhere and it just attacks another area with twice as much enthusiasm. I don’t care what the specialists say – I am going to continue taking the painkillers that actually work. Its alright for them to mandate what you can and cant take, they never have to deal with the consequences.