Recently I just concluded my first course of Prednisone. I was put on a high oral dose of the drug when I became seriously ill at the beginning of the year. Only 4 people know exactly how sick I was, a few more knew what the treatment for being that ill did to me. After the first two weeks – I stopped posting what I was writing in my blog. Reading it over now, I realise just what a dark place I was in.
The doctors, they give you a rundown of what “possible side effects” you can experience on medication. I was initially prescribed Prednisone on contact to try and get my condition under control. After a lot of thought and talking with my partner – we opted to try a new, more expensive treatment called Entocort. I was on and off Entocort for almost 2 years when we finally reached the decision that it was never going to be strong enough to subdue my particular case of Crohn’s. My choices were Bowel Resection or a high dose of Prednisone. Due to our impending wedding we chose Prednisone. I can’t help thinking it might have been the wrong choice.
The Prednisone worked – my inflammation count has normalized and is now even in the “good” category for someone with an Crohn’s/Colitis. So what could be so bad about the Prednisone? I suppose it effects people differently. I’m sure some peoples side effects aren’t as bad as mine were… but there are still a lot of people who suffer on this medication. Another long term Prednisone user described herself as “a totally different person” while on the drug. The conversation I had with her about her Prednisone usage perhaps saved my sanity. That might sound like an exaggeration – I assure you its not.
For the first 2 weeks I didn’t sleep… well perhaps I got an hour here or there when I was so exhausted I could no longer physically function. There is a reason they use sleep deprivation as a form of torture. When it becomes extreme, you start to hallucinate… you start seeing things, people you know can’t be there while your wide awake. They only thing the doctors could do for me is proscribe me sleepers. So my routine had turned into not sleeping during the week, then drugging myself into a comma on the weekends….
Sleep deprivation was the worst of the effects of the actual drug. I became complacent. Till I started to step down and withdraw. It was then I felt like hell had literally opened up and swallowed me whole. I abused the one person that I cared about the most, I did it often and from what I remember I did it with ruthless efficiency. He sat there through to months taking everything I could throw at him… How do you ever begin to thank someone for that? Its like… it wasn’t actually “me” doing and saying those poisonous things…. its like the real me was watching it, like you’d watch a TV program. I started getting chest pains and shortness of breath that in extreme cases triggered anxiety attacks. Over the course of 6 months I had 4 attacks so severe I had to depend on my now husband to medicate me – on two occasions quite heavily. I had never had an anxiety attack that bad before in my life… I had never had one that I couldn’t identify and take action on… Then from the speed like high of being on a high dose of the drug I started to experience exhaustion so bad I had to fight every morning, just to get out of bed… just to take another pill so I could start the cycle all over again.
I was moderately psychologically involved on the Prednisone. Meaning I did things and had thoughts I would never ordinarily have. I think I came to terms with what I had and what that meant about 18 months prior to all this starting. I’ve never been one to give up on anything in my life… This disease wont take me without a fight – and that’s just what I’m giving it.
Now I’m totally off and have been for 4 weeks, the last of my withdrawals have finally come under control. It’s like a veil has been lifted and I feel like my old self again. My strength and determination has returned which is something I’ve missed over the last 6 months. But its also bought with it a flood of memories. The things I thought and said… I’d rather think it wasn’t me – but it was. I was totally controlled by these tiny white pills that the dispense without warning or care in pharmacies.
I’m bothered by knowing while this was my first experience with Prednisone, it wont be my last. This will likely become a yearly exercise for me until my bowel is resected. Since the Prednisone has been, medically speaking, such an epic success, my surgery will be put off so worse cases can be seen before me – and I don’t disagree with that. I know there are people who suffer worse than I do with the disease and there is no question in my mind that they get priority treatment. My concern is in my own abilities. Can I do this again – know what it will be like, knowing what I’ll be like?
The short answer is I have to. I have to carry on. I have to get up everyday, go to work and smile like one of the normal people. And I have to do it for me – because I want to see the other side. Doing it for someone else – well I’m not sure that will get me where I need to be.
It’s in times of adversity you discover things about yourself, about the person you are. I’ve discovered a lot about myself over the last 6 months, some of it bad but a lot of it good. I got pushed to breaking point at work, with freelance work, with my body failing me and my mind not far behind. I got pushed to breaking point. But I didn’t break. Thoughtless, careless people can’t break me. Work can’t break me. Prednisone can’t break me. Crohn’s can’t break me. Fear… can’t break me.
I’m confident in saying, knowing what I know, seeing what I’ve seen… nothing can break me.