I’ve been withdrawn for the past 4 weeks… mainly from Social Media, but on a larger, wider scale too.  I haven’t wanted to talk to people.  I haven’t wanted to socalise.

I find sometimes, the world gets all too much for me.  I get bombarded with advertisements and media and images and thoughts and feelings that just make me cringe.  And you know what?  They shouldn’t.  They only do because I’m chronically ill and I have this little window into a world that only a select group of people see.  My only escape sometimes is to just… escape.  I get accused of being uncaring and not empathetic enough – which is wrong… I care and I’m very empathetic, just on a different level.  I suppose it makes me look like an arsehole… I suppose I realised that a while ago… I guess I’ve just started to stop caring.

Over my much anticipated Christmas break, I was suffering from a yet unnamed virus (at least one, perhaps more) with several underlying bacterial infections.  I made it through all the family festivities but on the 27th of December after unsuccessfully trying to get in contact with both my clinical nurse and Gold Coast Outpatients, I was admitted to Robina Hospital.  At the time I thought very strongly that it was just my “out of practice” adrenals having trouble dealing with a virus… I imagined my stay to be: blood test followed by bag of IV Prednisone/Quartisone injection then discharge same day.  I was wrong.  I presented at Emergency with sever dehydration (even though I’d drank 3 bottles of water that morning alone), high pulse, high blood pressure, high fever, crippling joint pain, non-specific abdominal pain and cold sweats with underlying Crohn’s Disease.  It was  the last part that got everyone so excited… they mustn’t see a lot of Crohn’s at Robina.  Anyway I was in an Emergency bed in 7 minutes which was nice… and blood was taken immediately… its strange when you’ve been sick for a while and you pretty much order your own blood panels, then apologize profusely letting the doctors know “your not telling them how to do their job”, but you are.  They were very accepting of my “expertise” in the field of Crohn’s and my ability to read my own blood work… cause in their own words “you know more about this than we do”.  And I suppose I do…  My first lot of blood was back quickly and it revealed a CRP of 138 – with that result I kissed goodbye to going back home that night… my highest result with active Crohn’s to date had been 93 – CRP in a normal well person is less than 5…. the scale only goes up to 300 so my results had everyone buzzing.  CRP isn’t a specific indicator though – it just means I’m “sick”, it could be flare up, could be viral… could be anything – it’s just screaming “inflammation”.  I was given chest x-rays to clear me of a bacterial respiratory infection and tested for viral pneumonia.  Both were negative and I was admitted to Medical Observation – usually just overnight.  I saw the first doctor… the word “Crohn’s” made her pee her pants and get the attending who had no personality (just the way I like them) but was much more reasonable.  My blood work was missing a few flare up indicators so he ruled out active Crohn’s (which was a bit of a relief) and said – virus with Adrenal Crisis and ordered a Cortisol test and cultures.  Now… needles don’t worry me at all anymore… the cannula didn’t worry me… the blood test don’t worry me the injectable med’s they don’t worry me so… I’m a different patient to the one they would have got 3 years ago.  I don’t cry or scream or flinch… I laugh and joke… it’s part of a normal week for me now… so nothing really to be even apprehensive about… unless they want to stick me in a confined space…

Anyway – there I was…. Stocker was in shock cause he believed I would be discharged after the blood test and the round of treatment for my Adrenals.  I was in a full ward of 4 – but two were admitted as I moved in… the whole ward was respiratory infections…. two were moved as soon as I came in and I was left with one – the worst snorer I have ever shared space with…. I slept for 2 hours that night and that was because I was playing Mumford and Sons “Babel” as loud as my little iPhone would.  I woke at 4:45 to the booming sound of the woman next to me snoring, in a pool of my own sweat and with a fever of 40-something.  To which they gave me the most vial uncoated, paracetamol.  I spent the rest of the night stinking like my own sweat attached to my third bag of fluids… unable to sleep.  My Cortisol was taken in the morning at about 8am by a woman who “lost” my vein while she was in there…. it took her 7minutes of wiggling that needle to find it again – lucky I have a pretty high tolerance to these things now… the doctor came around just before 10am and I was ready to go home… he told me that wasn’t a possibility until my fever had broken, the sweats had stopped and my CRP was back under 100.  I was reduced to tears… I was home sick and had a very stressful night… all I could hear was the happy woman (who’d kept me up most of the night) next to me getting discharged… after she’d been coughing blood up… and here I was with pretty much just a fever, staying for the long haul.

Given the circumstances – I was admitted to a ward in a private room – the way of the future – the staff at Robina were telling me.  To stop the spread of infection.  I didn’t care the reason, the room was nice and I finally got some sleep, as well as another 3 bags of fluid…. that made 6.

To cut what is becoming a very long story short, they were unable to grow the virus, even though they are continuing to try now.  They did find several smaller bacterial infections which were treated with my ninth course of antibiotics this year… on the fourth day, home sick and starting to suffer serious anxiety (that at the time I couldn’t identify as “anxiety”) I checked myself out against medical advice to go home and administer my own Panadol.  The next three days were almost scary… the fever continued and I was lethargic, tired and just “sick”.  I feel like I’m starting to see the other side now but the whole experience has shaken me.  I believed my serious condition was due to my Adrenals not working correctly – it can take 6 months for them to kick back in after a long course of Prednisone.  I had a Cortisol test in hospital and I had it redone by private pathology when I was out and both were normal.  My body had been fighting this virus as hard and as well as any persons body could… I was given all the bloodwork and my liver wasn’t functioning normally… the GP said the function pattern was wrong for drug or alcohol abuse (I’d taken nothing but panadol for 6 weeks leading up and had two beers in that time) but there was something wrong with it.

My liver enzymes still aren’t right, but my CRP has fallen to around 50 and the fever has broken.  I still feel like crap and am taking a few extra days off work to try and get a little better before the onslaught begins again… Rejoning the world… I’m not sure I’m ready to do it…. all I read about on Facebook is stubbed toes and skinned knees and how serious it is…. all the while I get this little voice in my head saying “I could show you what serious is…” it’s a really bad, dark side of me…. cause I wouldn’t want anyone in my life, even my most hated enemy to go through what I’ve had to go through in the last 3 years… I know its a matter of perspective… its like the people from work coming in and saying “I’ve been sick forever with this cold – I’m sick of being sick”… it really is bad to them… and I’ve learned to just smile consolingly and say “you poor bugger, get well soon”.  They couldn’t know that it makes me twitch hearing that… because what they are going through is truly bad and frustrating to them…. just like knowing I’m never going to get better is a frustrating thought for me…

I have a lot of issues at the moment, I suppose not just at the moment, I always have.  And its common – something I hear from a lot of chronically ill people.   I’m happy to say my care plan reset on the 1st of Jan so I’m off to get me 6 shiny counseling sessions which might help me stay part of the world without always feeling just on the outside.

I must admit I’m looking forward to my “home detention” being over and seeing, touching, hugging shaking hands with and jumping up and down with friends and family again.  It’s been a very lonely 2 weeks – but I know the consequence of catching something else while I’m already sick with some mystery bug.

All I can say to finish my story of woe today is: here’s to 2013 – the year of better health and creativity.