Wednesday, 25 September 2013

Ache It Like A Polaroid Picture

The other day I got to thinking whilst flicking absentmindedly through my virtual photo album (my phone).
I've always loved photos. Not of myself you see; I don't think I've been photogenic since around 1983 and even then I was probably screwing my face up at having to eat a Rusk. No, I love taking photos. Of my friends, family, anything the makes me happy or that I feel will remind me of my happiest moments. I have countless photo albums with Polaroids and actual photographs you can actually hold in your actual hands, from the days before I cautiously dipped my toe into the world of smart phones and digital cameras. 
I love to look through these photos when I'm feeling a bit blue or fed up. They remind me that my life isn't, and hasn't ever been, all about being sick. 
It's pretty much been confirmed that I've had Crohn's Disease for most of my youth, but I've only 'officially' had it since 2010. I don't like to think my disease has massively affected my life, but that would be foolish. And a lie. 
In the beginning, Crohn's made me unhappy, caused me to drift from friends at times, made me shut off from the world and generally become a misery guts for prolonged periods. But has it really? Or was that just my chosen mentality brought on by my situation. I fear the latter.
Although I constantly preach that Crohn's can have a major affect on your mental health as well as your physical (which I still firmly believe), I feel a lot of the responsibility falls on the patient to combat this. You need to take control of your life, in the moment and in the future. Decide if you are going to lay down to an incureable illness or strive to be the best you can be despite it. Again I choose the latter. I'm not by any stretch of the imagination saying I've gotten there yet, but I will. 
When I look back through my photographs I don't see misery and sadness, I only see the physical ravages of Crohn's; my hair falling out and becoming thin and dry, my moon face from excessive steroids, my stance; hunched up and uncomfortable, my skin; broken out and painful, my scar from surgery, the pain in my face and of course, my positively skeletal figure. 
These are all unfortunate reminders of how ill I've been in my recent past, but they make me feel positive rather than forlorn. I know the signs because they are documented and neatly stored in an album. I know what to watch out for when I'm becoming sick again and I know I can still live my life to it's fullest regardless, even when I'm at my worst. 

Say cheese! (But only a slice for me, I shouldn't really have dairy..) 


Saturday, 21 September 2013

Here I Go Again On My Crohn..

I'll be getting a new boss at some point this week. This isn't major news in itself, but to someone with a chronic illness who has an absolute belter of a boss, it's a teeny bit heart-breaking. Don't get me wrong, I'm thrilled for her moving on as she is beyond lovely and deserves to be blissfully happy in her work, BUT, I'm also incredibly anxious as to what will happen when she's gone. 
I'm fairly sure my new manager will be great, know their job and a super person, it's just that the thought of starting from scratch in explaining my illness fills me with utter dread. 
Crohn's is such a complex disease with so many symptoms that it takes time, patience and effort on another persons behalf to get to grips with everything it entails. My current boss took the time to learn all about it, inside and outside of work, she listened and helped in any way she could, and did everything she could to make my time at work more comfortable. She also just knew over time, when I was sick and trying to hide it from her and focus on my work. I feel I can talk to her about anything and not be judged or thought badly of and she knows I respects her enough never to take advantage of her kindness. 
I know it's a lot to expect to have that same level of care from someone new, especially straight away, but I can't bear the thought of not having it at all. It may take years to get even vaguely close to the understanding she has of Crohn's with someone new, if it even happens at all.

Small changes like this to a 'normal' person are difficult enough as it is; as a race we are generally frightened of change, even on a small level like this. But when you have an issue which goes unseen and often unspoken, one which people often struggle to grasp, it can be incredibly frustrating to start afresh. It can often feel you are constantly trying to justify why you are STILL sick. 
My previous boss didn't get it. He wanted a nice easy case of employee is ill then well - back to work as normal, when in reality he had me; in and out of hospital with minimal information to provide him with, I wasn't getting any better and had no clue when or if I would. 
My current boss understands that if I can't contact her straight away it's because I'm in agony/on the toilet/in hospital/all of the above. She knows I'm not and would never take advantage of my work due to my condition. But then she knows me. 
That's why the prospect of a stranger who doesn't is scary. 
Its an intimidating thought but I suppose the best I can hope for is someone understanding who is prepared to listen. And isn't afraid of the unknown..*
*my rear end..


Saturday, 14 September 2013

Diseasey Rider

This week is 'Invisible Illness Awareness' week. 

It's a week in which I assume, we aim to highlight  the struggles that people with un-seen conditions have to endure in their day to day lives. 
Great, but the only slight snag with that I find, is the 'highlight' part. By it's very nature an invisible illness is just that; invisible. So how can we possibly show you what goes on inside? 
Put simply, we can't. 

It's often said that if people could see what goes on under the cover of a Crohn's patients skin they would think differently about how they treat said patient. Well I would hasten to add that that would potentially be the case if anyone, healthy or otherwise, were suddenly to start parading around skinless and as naked as the day (before) they were born. 

It's true to say that having an 'invisible illness' can be both a curse and a blessing. It's incredibly difficult to explain that you feel like death warmed up when people on the outside don't see any physical change whatsoever. It can become increasingly frustrating, and often feel like you are trying to 'prove' yourself to others, when really it's the last thing you have energy or time for. 

I wholly admit I often find the 'invisibility' of Crohn's a challenge; but on the whole it's funnily enough the one aspect of my condition I am mildly grateful for. 
I feel it allows the patient to claim a bit of their control back. YOU decide to tell someone, YOU decide who you want to know and YOU can power through it without having to tell a soul if you so desire. 
Crohn's can take away so much of your dignity, and affect such a huge chunk of your life that I find having that power over what I choose to conceal and what I choose to reveal, an immense relief. 
I don't have to tell every single person I meet what's wrong with me from the get go, I can disclose the ins and outs of my barmy bowels when and if, I see fit. 

However, although this sickly cloak of invisibility can be a found to be a bonus, it often leaves you in awkward positions in which you feel helpless to express yourself..
Today I was at the shops, I felt tired and weary when I left but by the time I'd gotten through my short shopping list and was awaiting the bus I felt AWFUL. Panicky and hot, sweating and shivering and in incredible pain. I was breathing through the cramping and willing myself not to pass out. I focused on the bus pulling up at my street and getting my keys in my door and breathe breathe breathe.. 
The bus arrived and I was motioned on by a neighbour, sat myself down and sighed with relief at the thought of being home in a matter of minutes,  only to hear this from a few seats back; 
"There was a pensioner at that bus stop and she just stepped on before him.." 
The 'pensioner' in question is 52 and happens to be the kindly neighbour who motioned ME to step onto the bus before HIM, after ME having initially stepped back to let HIM on. He had also just come direct from the gym where he works out twice a week, along with his coaching commitments for a football team of under 14's. And I NEARLY PASSED OUT GOING TO AND FROM THE SHOP. 
I left the comment hanging in the air because I almost sobbed at the sheer embarrassment of it all, but mainly with frustration. 

There will ALWAYS be people out the there who will judge you. She decided because I was younger than this man that I was both rude, and clearly healthier and more able bodied than him. Wrong on both counts. But nevertheless she felt it necessary to mumble insultingly regardless of having any facts at her disposal.

We are all guilty of judging others based on appearance. If you disagree with that comment then you are a liar. (See what I mean about judging others?) 
But what we need to change is the idea that just because you can't see someone is in pain doesn't mean it's not happening. Don't decide to slate someone or assume you know better when you can't see what we can feel. Had a man gotten onto the bus with a broken leg, he would've been accommodated and pitied because he was VISIBLY struggling. How do I defend myself against insults based on a condition you can't see? 
Think before you speak. 
Will what you are about to say enrich yours or anyone else's life? Or will it just end up the basis of a blog by a raging Crohnie? 
You be the judge.