When do you know better than your specialist? Your specialist that has been to University for practically his entire adult life? The correct answer is never.
That makes me feel just a little bit extra guilty about what I have been doing lately.
Back in April, I had the review which resulted in me being taken off all my medication (again) and my Imuran dosage being lowered for the second time. When I went back on, a week after my review, I was meant to be taking 75mg of Imuran. Well, I got lazy. Splitting pills got to hard, and I started taking just 50mg about 3 weeks ago… and I feel so much better than I have during the past 12 months. I am active again, which hasn’t eliminated my fatigue, but it has helped. Fatigue is the forgotten symptom of Crohn’s Disease. It can be so bad that you literally have to throw yourself out of bed in the mornings – knowing that if you don’t get up and get to work, they can quite legally sack you for not being able to perform your duties. You wake up… feeling like you have been asleep for about an hour after days without rest. And its a vicious cycle. The more fatigued you are, the less active you are. The less active the more the fatigue takes hold. Its worst in the colder months… because you are exhausted and if you have joint involvement, you just ache from hair follicle to toenail. It is unrelenting. Now I love the winter, but I don’t love how broken I feel during it. I think the biggest effect I have gotten from not taking my entire dosage is I am hating myself a little less. At some point in our lives we all make the decision to be healthier… quit smoking, eat better yadda yadda yadda. Before Crohn’s I was no different… When I went on the Azathioprine… every time I swallowed one of the tablets… I knew I was putting radiation into my body that in all likelihood would result in me contracting Cancer on top of Crohn’s. Every time I took one.. I hated myself a little bit more… because I knew, one day, what I was doing, was going to make me worse. But – what choice did I have? Become seriously ill and possibly die from active Crohn’s? Or take the medication or be almost assured I would end up with one type of Cancer in the ensuing years? What a choice right? Its one that everyone with Crohn’s and UC need to make… and I still say, it shouldn’t have to be.
Sooooo…. how much trouble do you think I might be in for self medicating? I would have said probably not so much because my well-being had picked up.. until that is, I read the information in the package I received from Crohn’s and Colitis Australia on Tuesday.
There, large as life, was an article about the importance of staying on your medication regime. I can make all the excuses I want “I feel better and that’s the most important thing”, “I know my body better than the doctor”, “It’s only 25mg less, nothing to wig out about”. But I know that my doctor does know better than me, I know I was proscribed the amount for a reason and I know… but deviating from my prescription by even 25mg could make me seriously ill. So why, when I am obviously logical, am I still doing it? Quality of life. I had very little for the 12 months after my diagnosis… and I am doing the illogical so I can live in the moment for just a little while. My medication made me feel much worse than the Crohn’s did – even though I know the Crohn’s made me sicker. It toyed with my head, my emotions and my strength. It let very dark thoughts and notions creep in. I left that part of me behind many years ago… I deal with my demons… but all the medication and the tests and the procedures bought some of them back to life.
Should I be more worried about the risk I am taking? The literature says I should – but everyone is different. Should I be? I really don’t know. I think, making the conscious decision, I would rather walk the tightrope a little in exchange for feeling a bit more “myself”. So that’s what I intend to do. Don’t get me wrong, I fully intend to be honest about what I am doing – after all, feeling better is nothing to be ashamed of. If I meet my doctors wrath, then I do.
Again I ask you? Should anyone be in this position? Whatever the name of the disease… there should be more and better options that “take the medication and probably get sicker, don’t take the medication and stay sick”. Diseases with this kind decision should be a research priority… instead, illnesses like mine… get only 0.1% of the national medical research budget which has been deemed as “unnecessary” in the last few budgets and lowered consecutively. I have personally asked government representatives to help give us another choice by putting that allocation up to just 0.5%… but while there is a “treatment” in the system, they don’t care about the choices involved with taking it. They don’t care… because not one of them… have ever had to live a day in one of our lives… none of them have had to make the same decisions we make when we take some of the treatments on the market.
I best get of my soap box and back to work finishing by saying… if symptoms persist, see your doctor.