Run away from illness

"In the hospital it is as quiet as a tomb. The nurse fights to find a vein in my right arm. We give up after five attempts. Would you faint if someone stuck a needle into your arm? I've got used to it - but I still shut my eyes.

The Gautama Buddha instructs me to walk away from illness. But he wasn't attached to a drip.
The drip stings
A lump swells up in my arm
Out comes the drip
An electric shock sparks up my arm

How can I walk away with a drip attached to me?
How am I going to walk away from this?"

Derek Jarman- Blue


Please be warned that this may be a brain dump type post..........
The above excerpt is from `Derek Jarmans fantastic work "Blue"

http://www.queerculturalcenter.org/Pages/Jarman/JarmanBlue.html

https://www.youtube.com/watch?v=3RoasUMmV9Y

I woke up with the lines "walk away from illness" on a loop in my head this morning after a particularly difficult appointment with my Crohns consultant yesterday. I studied Blue in depth many years ago when I was at performing arts college, and his lines about the waiting room always whirl around my head at every appointment

Here I am again in the waiting room. Hell on Earth is a waiting room. Here you know you are not in control of yourself, waiting for your name to be called: "712213". Here you have no name, confidentiality is nameless. Where is 666? Am I sitting opposite him/her?

Now obviously I would never be as crass as to compare my experiences of Crohns with Derek Jarmans terminal illness and ultimate death but there is a definite familiarity of the medical roundabout you find yourself on. 

Since I was diagnosed in 2010 I have been on many different medications- sometimes the side effects are worse than the illness they are supposed to be helping. I started on steroids that made me a bit ragey and buggered my immune system. I then moved on to methotrexate which made my hair fall out and made me vomit. and vomit. and sleep. and have headaches.Then made me so depressed I ended up on meds for that.  I then had 18 months of wonderful remission with no Crohns symptoms at all. Then it came back. I then went on Azathioprine which made me feel like I was having a stroke and gave me such a bad chest infection I ended up in A&E at 3am unable to stop coughing. I then went back onto methotrexate, but this time injections which apparently have less of a vomitty effect. But yay! I kept the headaches and the lunacy. So I came off that. 

Im March this year I went to see my consultant in a major flare. He told me there and then I had a choice of Humira injections or Infliximab infusions- sort of chemo-esque delivered by a drip once a week. If I didn't choose I was to be admitted as an inpatient. I chose Humira- a medicine that is self injected once a fortnight after the loading doses given on a ward. When I went in for my second loading dose they had an extra gift for me while I was there: an iron infusion as I was by this point so anaemic the iron tablets weren't cutting it! SO a nice bag of iv iron it was- or the Guinness infusion as it looked so much like.

 Ive now been on Humira for 7 months, which was fine until the seasons changed and I have had infection after infection after infection due to the immunosuppressant element. I have had tonsillitis, a chest infection, and cold upon cold upon cold. 2 weeks of mega antibiotics and have been unable during this time to take my Humira, so happy days! My Crohns has gone into full flare mode. 

I went to see my consultant yesterday and was given two new medications- oh the excitement. Im back on steroids for a month and then he has given me a "bulking agent" to well, I'll leave you to figure what thats for...........
I am to leave off the Humira for another 3 weeks until I have cleared all these infections and then hopefully will be able to continue with it.

However there is an alternative...................Surgery. 

It has been mentioned before by my consultant but this time it seems more of a choice than an eventual "one day" distant option. Now for the technical bit- My crohns is in my ileum- ileitis 

http://www.ccfa.org/what-are-crohns-and-colitis/what-is-crohns-disease/types-of-crohns-disease.html

this means the surgery on offer would be an ileostomy

http://www.nhs.uk/conditions/ileostomy/Pages/Introduction.aspx

a huge thing for anyone to get their head round, albeit a temp ileostomy. They will take out the dodgy bit (12 cms in my case), give me a stoma for 6 months, and then reattach my innards with no inflammation. Surgery can work wonders- people can remain in remission for many many years after surgery, OR it can begin a game of cat and mouse where the inflammation moves along the intestine, requiring further surgeries. 
What a great decision to have to make *sarcasm*

Yesterday I felt quite sorry for myself. I have a lot whirling round in my head- options, choices, decisions. Whilst dealing with the side effects of the various drugs and getting my head round the 20kg I have gained since diagnosis. On a positive note the consultant has suggested that I give up work for the forseeable. It is just not feasible to try and hold down a job when your toilet trips are in excess of 5 or 6 a day, and last on average 40 minutes. When the side effects of the drugs make you so ill, so tired, so grumpy. This is a good thing now I have got my head round the concept that I am not lazy and workshy, I am ill and need to look after me to be well enough to care for the family.

It also give me time to run, in the day. I tried it for the first time this morning- I dropped my daughter at school in my running kit armed with my garmin, my headphones and my playlist. And I ran. I ran just over 4km and I ran away from illness. Derek Jarman came with me in my head, walking away from illness. I thought of his drip as I ran with my three huge bruises on my inner arm from yesterdays blood tests. I thought of the poo sample I had to supply the hospital yesterday. Which poor  bugger had to test that this morning! Id much rather be running than fiddling about with other peoples poo.   Running won't cure my Crohns. Running won't change the side effects of the medication or my utter impotent rage I sometimes suffer at the unfairness of my diagnosis. But running helps to clear my head. I processed some of the info I'd been given. I thought about my options. I was thankful that I was running. I was thankful for the NHS. I was thankful for my husband and family. I was so so thankful for my husband and his unwavering support, his wonderful attitude toward my giving up work, thus leaving ALL the financial commitments to him. 

Thank you running, for allowing me to revel in what my body CAN do, rather than bemoaning what it can't do, and focusing on the broken bits. I will run away from illness, me and Derek Jarman, as long as I can.