Hello my friends, it’s been a while… but then it’s been a while since I had the energy to write too, but this one has taken me the better part of a week to put together, so I guess I’m making up for it :)
If you are planning on reading to the end of this one, I’d suggest you grab yourself a cuppa or a glass of your favourite cold beverage… Maybe you might want to fix yourself a snack while you’re at it too because as I sit here at the beginning of this ramble, the end seems very far away – just a small pinprick of light at the end of a scary dark tunnel, a tunnel where there may be any number of unknown iggly things just waiting to jump out at me to trickle their terrible tentacles down my spine and – ergo – your spine too.
Let me start by explaining the title of this post. I had a number of semi dramatic titles that I felt might be apt. When friend becomes foe was one of the first ones that jumped into my mind. Grant me a healthy dose of perspective followed closely on its heels. And then as the outlines of this story coalesced into something tangible the possible titles came at me thick and fast…
Clarity with a needle in my arm
Awakening after a deep dark slumber
A map to finding my own rainbow (somewhere over the rainbow was playing)
God save me from myself
and then when this last one came along, Extracting ones head out of ones own arse I realised that the title doesn’t really matter, what does matter is the story inside me that needs to get out. So, “All of the above” it is :)
This story’s roots lay buried in the past. Twenty years ago at the age of 19, after a brief but violent bout of unexplained illness, I was diagnosed with Crohns disease (warning – graphic medical terms and some images may cause distress, if you have a weak stomach don’t make with the clicky clicky!)
I was submitted to a barrage of invasive tests, became a human pincushion, stumbled upon the unpleasant discovery that doctors were not Gods, and was prescribed a number of drugs with horrid side effects to control my crohns symptoms which were, at that time, debilitating. I eventually lost faith in my specialist after he told me I shouldn’t ever have children and stopped seeing him. This was the beginning of my sticking-my-head-in-the-sand phase which lasted about 15 years :) I didn’t return to the medical profession and its league of learned gentlemen until last year. By the way, for those readers who are new to my ramblings – I have since been blessed with two beautiful boys who are now approaching 11 and 14 years of age – stick that in your pipe and smoke it Dr he-who-shall-remain-nameless!
Over the years I learned to cope with my crohns on a daily basis. I self medicated when necessary and was mostly able to live what appeared to be a relatively normal life (to the outside world at least) with the love and support of my family and especially my husband.
A few years ago now I came upon the realisation that stress was one of the main indicators of a flare up, but it is only recently that I have learned some medical facts of the disease and medication that support this theory. So I have undertaken measures to ensure my life is as stress free as is possible in this modern world. I live in a secluded supportive community, next to one of the most beautiful beaches in the world, a walk upon which never fails to soothe my soul. I have limited my working hours, and indulge my creative pursuits as often as I possibly can. I sleep when I need to, and try not to feel guilty about my many nanna naps.
However as much as I try to keep my stress levels to a minimum, sometimes shit just happens that is out of my control and before I can even acknowledge to myself that I’m stressing about stuff my body lets me know as it starts to break down. I’ve found myself in a bit of a vicious cycle over the last 18 months or so, what with one thing and another, and as a result have spent more time on prednisolone than off, at times only just keeping on top of my symptoms. High doses and long term use of this medication brings its own set of problems. I’m terribly overweight and have the classic steroid moonface, both of which make me awfully self conscious and give my self confidence a good kick in the gut. Long term steroid use has made my bones brittle, my eyes photosensitive, I get itchy skin, mood swings and if I catch a simple cold my body had no resources to fight off infection so I’m sick for aaaaages.
And as if that isn’t enough, coming off the drug presents its own set of problems, not the least of which is a possible life threatening lack of adrenalin.
But with all of this, and we’re really just scratching the surface here, over these past 20 years I have made a conscious decision not to let it get on top of me – I’m a naturally positive, glass half full kinda gal so wallowing in self pity just isn’t my style. As far as I am concerned I live a charmed life. I have a husband who adores me, two incredibly bright, good hearted kids, I totally lucked out scoring a job which I absolutely love and am extremely passionate about, and live in a community of wonderful caring people in beautiful place with a climate that suits me to a tee. These are the thoughts I try to keep foremost in my mind, but sometimes I slip…
Last weeks visit to the specialist resulted in me having to undergo an iron infusion, because my levels were extremely low. At least that explained why I was struggling to stay awake until lunch time! My doctor mentioned that on the odd occasion some people had a reaction to the infusion, and very very rarely the reaction was severe enough to send someone into anaphylactic shock. He didn’t make a big fuss about it so I thought it would be cool.
In the days before the internet, that would have been the end of it. I would have just toddled off to my appointment, a little nervous for sure, I mean who isn’t nervous about needles? Later that night however, I decided to go visit my friend google… and I so wish I hadn’t. My friend turned foe. There was horror story after horror story after gruesome bloody tale written by people who had had this treatment and stopped breathing, blacked out, had to be resuscitated, given adrenaline, ALMOST DIED, entered a long tunnel, saw grandma who had passed years ago in the light saying “Goooo baaaaack…..”
Ok, so that last bit may be a bit of an exaggeration, but there were some truly horrifying stories. It freaked me out to the point where I almost cancelled. And… whats even worserer… it freaked me out enough for me to admit to my mum that I was scared. This was a truly epic fail on my part. See there is a reason I don’t normally share with people and that’s because they will usually stress, and when they stress about me, I stress about them stressing about me and I end up getting sicker… pfft!! I think I also don’t share because I am deathly afraid I will look into their eyes and find pity lurking there. I categorically do not want or need anyones pity, they need to save that for people and causes that really do deserve it.
In the end though, some reassurance from my dear friend Rosemary who used to be a nurse in a previous life, and a stalwart hubby who only wants the best for me insisting that I needed to go, saw me rocking up to the hospital at my allotted time.
Needless to say… I survived ;)
It was a bit harrowing especially as my veins had gone into hiding and they had to have a couple of goes at sticking me, but aside from that it really wasn’t too bad. The nurses were awesome to the power of rad, and I got to watch a couple of episodes of Glee without hubby or the boys ribbing me about it. The food was even quite palatable!
What really hit me hard sitting in my little corner of the medical day unit for 6 hours was watching the steady stream of oncology patients coming in and out of the clinic to have their treatment. Most of them had permanent canulas, so they don’t damage their veins from being stuck so often. There were people having stuff injected into them that was (I can only presume) so toxic that the nurses had to fully suit up in protective gear to administer the drugs. There were women making creative use of bandanas and hats to hide their hair loss – or maybe I am wrong there. Hiding something indicates shame, or embarassment… perhaps these brave women were simply keeping their heads warm – it was a cool day after all.
Without exception, every single patient that came in to have treatment for their cancer had a kind word and perhaps even a laugh to share with the nurses.
And you know what? I felt ashamed.
Ashamed for being so egocentric as to believe, for a fleeting moment, that I had it bad. Ashamed to have inflicted these needless concerns for myself on others dear to me.
But there was an upside too (here’s the glass half full kinda gal speaking up). I also found myself incredibly moved and inspired by the bravery and grace exhibited by my fellow patients that day. And because of them I decided that it was time to break my self imposed silence on living with crohns disease. I’m starting by posting my positive experience with the iron infusion everywhere I can, and I will encourage others to post their positive stories as well to hopefully give others a more balanced view than was afforded me.
Think globally, act locally a phrase often bandied about, but nevertheless apt in this situation. I can’t fix the woes of the world, but if by sharing my personal experiences in my small corner of the internet makes it a little less scary for someone else, well that’s a win in my books. And if my ramblings help someone who has a person in their life living with crohns understand a little more about what that person is facing then that has to be a good thing too surely?
Life is one big learning journey, I thought I might share a few of the lessons I have learned this past week or so.
- be informed, but know that people are more inclined to write about bad stuff than good.
- if someone reaches out to you because they are scared – for whatever reason – sometimes all they need from you is to hear the words “It’s going to be ok. I’m here for you.”
- no matter how bad something seems, there is always someone going through something worse.
- an experience shared may change a life
- if you are living with a chronic disease, don’t stick your head in the sand. Get care, see a professional or you may find yourself in a life threatening situation thinking “If only…”
- be very verrrrrrrrrrry careful what you share with your mum if she is on the other side of the country and can’t express her concern for you by coming over and giving you a hug ;)
Heartfelt thanks to anyone who has read even a part of this very long ramble, I can only hope that there was some small thing that resonated in it for you and maybe made you stop and think for just a moment.