Normal

Well you will all notice a strange and unexplained absence.  I am please to say its because I have been leading a relatively normal life.  Please note – I said normal, it hasn’t necessarily been pleasant.

So what has made the last few weeks so “normal”?  Well, I guess it started with me getting sick – just like a normal person.  Completely unrelated to Crohns Disease.  Last Friday I had a sinus infection – a regular old sinus infection.  I had to take a day off work cause it was quite violent but it had nothing to do with my illness.  I went to a normal doctor, like a normal person.  I got normal antibiotics like a normal person.  Defiantly not what I would call a nice experience, but… I need more “normal” days to prove that this disease will not define me.  We believe that the cause of the problem was the hair dye I used – I know I have a lot of problems with hair dyes.  Anyway, the most expensive brand was on special for what I would normally pay for my cheap dye.  Naturally – I considered this a bargain and bought it.  It was a high perfume dye and I have had problems in the past with strong smells.  Consequently, I went to bed tired on Thursday night and woke up on Friday with the mother of all Migraines.  I went out and took my four Aspro Clear (naughty naughty) and returned to bed thinking I had 40 minutes before I had to actually get up for work and it would be gone by then.  I was wrong.  It continually got worse until I started throwing up…. I continued to throw up for 4 hours… until my partner, who thankfully stayed home to drive me to A&E if the need arose, went out and got me some Nausatell (an over the counter Stemitell).  After three goes at keeping one of those down I fell asleep for an hour and went to my regular GP to get my regular diagnosis.  It wasn’t all “normal” though – I did finally get some painkillers which have been made for people with abdominal conditions such as mine.  They still slow the bowel down (like most other painkillers) but they don’t have any destructive side effects.  I have heard a lot of Crohns sufferers asking about a better pain relief, well these are pretty good – and not yet in the realm of narcotic based pain medication, which I want to stay away from for as long as possible.  They are called Doloxene – and they act like Codeine without the destructive aftermath.  I have had to take a few to force myself through the last week at work with my unrelenting headaches.  They are working – and they are better for me than Aspirin.  The real test is still to come – what are they going to be like during a proper – fuck you – flare up when I have a bowel obstruction.  Hopefully I wont have to find out in the immediate future.

In other good/bad news, I have had another flare up – one day short of 3 months in remission.  The good news?  I am starting to suffer Crohns like a normal Crohns patient.  My last flare up didn’t include a bowel obstruction.  I had a plain, normal, run of the mill, honest to God flare up.  I know many Crohnies are shaking their heads right now – nothing to be happy about right?  Well, maybe not normally – but for me, its relieving.  Don’t get me wrong, having to be no further than 1m from a toilet at any given time was inconvenient – especially considering I was presenting to one of our largest clients that day (my account).  But it is the strongest indication yet that the Entocort has done its job and reduced the swelling in my small bowel.  It means that surgery is now on the backburner cause I am now a standard case of Crohns Disease.  I am so relieved I am that I chose the Entocort.  It was the more expensive choice, but it was the right choice for me.

Monday (before my flare up) I had another review with my GI.  I so like him – and all of the staff and Gold Coast Hospital.  I can’t stress enough how amazing they have all been – and how at ease I am going in to potentially get bad news.  I am a supporter and advocate of the public system – and the harder I listen the more horror stories I hear from people in the private system.  Anyway – yes, he noticed quickly my “demon eye” (I ruptured blood vestless in my left eye while throwing my guts up the Friday before) and asked what it was from.  I told him and remarked that it was nice being sick – normally.  He laughed, I don’t blame him, but I think he understood that its been Crohns Crohns Crohns for the last 6 months, it was nice to have a metaphoric “break in the weather”.  He changed my Imuran start date to the 13th of September – a few more weeks of feeling good before we start the new drug.  I must say I am a lot ore comfortable with doing it now.  They are keeping a close eye on me and after reading drug reviews – the people who are using it and it works on, it works spectacularly well.  As in – they are eating whatever they like and they are flare free.  That gives me hope.  I also quizzed him on other options, just in case I am one of the 20% that has problems.  There are other options – Imuran is the most tried and tested.  On the way out he said “keep smiling and no one will notice your eye”, I have smiled ever since – a few kind words are sometimes all it takes to put someone on a high.  I am more confident than ever about my health improving to the point I can more or less forget I have this damned disease.  I am confident in the people I have around me, and I am confident I am strong enough to fight off anything thrown at me.  I needed the time to accept what was going on and I think I am almost there.  I still need to take some time off work – cause… its very stressful at the moment.  I am the entire marketing department and there is just not enough of me to go round.  The last thing I want this to sound like is that I can’t do my job.  I can, and I do it well.  There is so much of my job now though… I mean – technically I am spread quite thinly over three or four roles and I don’t feel like I am doing any with great poise or success.  However I am getting it done, and even if I don’t have the title in writing, I am consistently being called the Marketing Manager now – and, well if nothing else, it makes me feel good.  I would like that good feeling to translate to my bank account as well, but I have a feeling that’s still a ways off – that is if I stay with my current employer.

Over the last few weeks I have had a very strong pull toward politics.  Not just because of the election, but because I am passionate about it.  Crohns has added to my passion.  Seeing the plans for the health system, hearing what both sides plan to do to it has disgusted me.  They have no idea how hard people who need the service are already doing it, yet they are intent on making it harder.  Labour wants people to start paying for diagnostic and regulatory testing and the Liberals want to cut 1 billion dollars from the PBS (Pharmaceutical Benefits Scheme) which isn’t delivering the right medication to the right people now – I can imagine how much worse it will be 1 billion dollars poorer.  I am sick of talking about how poor some of the decisions the parties make are.  I want to get in there to try and make some changes – particularly with regards to the fluidity and transparency of the public health system.  People like me – like us, should not have to suffer more of a burden than what our disease puts on us.

My last big decision.  I am no longer going to worry about, or hide my blog from people.  If it offends you – or you don’t like the realities of my life and my condition – to be honest, stiff shit.  This is how it is for me – this is how it is for a lot of us.  I have been stunned to get messages from a lot of people with many, diverse, chronic illnesses.  I was wrong in thinking that Crohns sufferers were the only people who understand what I was going through.  It seems everyone with a chronic condition has an idea of how alone you feel when you have a disability or an illness that people cant see on the outside.

To everyone who reads this blog with a chronic condition – continue to fight through the bad days ad enjoy the good days.

To everyone who reads this blog who doesn’t have a condition – thank you for trying to understand those of us that do, better.

No Comments Yet.

Leave a Reply