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.

The streak day 2

So it would appear that despite my better judgement I am Still Ill and after waking up  (and STAYING UP) at 4am completely congested I dragged myself back to work for the first time in 2 weeks only to be sent promptly home by my manager. I promptly slept half the day on the sofa and was supposed to be going running with the Trundlers this evening but they all protested and said I shouldn't as Im still rough, and I DESPERATELY want and NEED to be better for the graduation of our first C25K ladies tomorrow eve. Anyway I was so determined to do my streak and not fail on day 2 that I got my running stuff on while it was just still light and treated myself to 1km. Up and down my garden LOL. Now luckily I have a large garden but I also have four amused children, 2 confused cats and no doubt some still sniggering neighbours.

The most interesting thing is just before I ventured out into the garden my son #1  (aged Nearly 12) said "You need to go and run in the street, Mum, not just the garden" "Why?" I asked him. 

"Because when you go out and run you INSPIRE people. Thats what everyone always says when you post about running on Facebook, that you are an inspiration so you need to run out on the streets where people can see you"

I am absolutely gobsmacked. And ridiculously proud of my son for noticing what I do, and being so very supportive. And I'll tell you what. Im rather proud of me, too, for trotting up and down my garden, scaring my cats, slipping on manky apples, receiving a face full of cobwebs as I circled the rotary washing line for the 19th time and no doubt now having a street full of neighbours that finally have the proof they needed that I am, in fact, bonkers!

The crying tree

Lets start at the beginning. A few years ago my husband wanted to do Parkrun-he'd read about it and rather fancied it after he'd done a 10k or two. He persuaded me to go along as he knew I was keen to start running but was apprehensive. Actually it was a fair few years ago as I know I was still smoking and I'm about to celebrate 3 years smoke free! Anyway I digress:

I can remember not being overly keen on this Parkrun lark- I'd read the website and been assured they were very friendly and inclusive but still I was scared. So scared that I snivelled delicately behind my (huge, non running) sunglasses the whole way there. When we arrived I'd sort of imagined that there would be some sort of nice "newbie" section. You know, like in aerobics "any new people. any injuries? Welcome, lovely to meet you, lets bugger this running lark and have a cuppa" - you know, that total flight of fantasy that meant No Running With The Proper Runners.  However we arrived dead on starting time and before I even realised I was there everyone (who were all dressed like proper runners) took off like shit off a shovel up a quite frankly humongous hill. Very quickly I realised that I was being overtaken quite swiftly by the kids, buggy pushers and dog runners, people who are usually related to the back of the pack. I tried to keep up (remember its a proper shitter of a hill) and suddenly a lady was beside me. "Are you ok? Im the back marker and we're quite far from the back" Me: "wheeze, gasp, hiccup, sob" I swear to God at this point some of the lycra clad men were fair bounding back DOWN the shitting hill, barely a sweat on their lycra leggings (which to be fair will ALWAYS look weird on men). At this point I informed the back marker lady that I "couldn't do it" and to "carry on without me" like a dying soldier in the trenches and I limped my way back to the tree where all the belongings were, to wait for my husband with my (huge) sunglasses firmly back over my (still leaking) eyes. From this moment forth it became known as "The Crying Tree"- a name that has since been adopted by some of my running friends that have helped me to conquer my fear of that dreaded Parkrun.

Anyway I was thinking about the crying tree today. I have been quite poorly lately- Tonsillitis, a lingering cold, two lots of antibiotics and a trip to the out of hours GP yesterday where I got diagnosed with costochondritis (inflammation of the cartilage between the ribs from coughing) and I am sick of being ill. I missed my planned run at Tyntesfield this morning but then I realised that a few of my C25K pals were going out to do a 28 minute run at lunchtime. I decided to join them. I decided that actually its a BEAUTIFUL day (17 degrees on Nov 1st) and I want to blow away some cobwebs and possibly some germs, especially as I return to work tomorrow after 2 weeks off *sob*

We started to run and it was hard- my calves were hurting, my nose is blocked and my chest definitely isn't 100%. After about 10 mins I was thinking of stopping- Doubting Delores popped into my head "You're poorly, You're tired, it won't MATTER if you stop and wait for the others to finish, they'll understand, you can just wait, or walk" etc etc. Then I thought: If I stop and they carry on I will be PISSED OFF. I won't be able to join in the post run selfie, I won't have the smug pants, I will feel CRAP. In fact, I would be firmly under the metaphorical crying tree. I don't want to go back to the crying tree. The crying tree lives firmly in my running past. There will be no more crying trees on my runs.

In fact I enjoyed it so much I have decided to do a running streak for November. Now don't worry, thats not streak as in nudey rudey streak, its a streak of a number of runs in a row- Im am doing 30 days (the whole of Nov) and the only stipulation is each run is at least 1km (so no running down drive in trainers and dressing gown pretending that counts before diving back into bed feeling falsely smug!) I will record it here so I can brain dump all the feelings I have during these 30 days. Hopefully there will be no crying trees involved...........