Comfort Crohn

 When I started writing this blog, about 2 and a half years ago now, it was to fill my time.

To keep me amused after my surgery and to keep my mind active and focussed on something more constructive than daytime TV. I was mind-numbingly bored and recovering at home after having had my first (to date) major Crohn’s surgery. I had a bowel resection; which to the uninitiated is a procedure whereby the surgeon removes a small part of the patients’ bowel and intestines, the aim being the subsequent removal of the most badly affected area of disease.  In my case the operation was thankfully a success and the most badly affected part of my insides ended up in a surgical waste disposal somewhere rather than killing me from the inside out.

It was a terrifying time in my life and being in and out of hospital was a whole new world which was relentless and depressing in equal measure. I was unbelievably relieved to be granted this operation which I’ve been consequently advised after the event; proved to save my life. I was expected to come round from the operation with a stoma; I didn’t, another fact I took as a victory. I was gushing with joy (and the morphine was wearing off…) at the outcome of my surgery. My scar now remains to show how far I’ve come since then. It’s more like a proud battle scar in my mind now than something I initially saw as a repulsive eyesore. It all seems a lifetime ago at this moment and I am incredibly grateful I’ve been nowhere near as ill as I was back then. I’m not under any illusions that I won’t be in the same position in years to come. I’m very aware that due to that pesky incurable aspect of my condition, I will most likely get worse rather than better and that any further surgeries I may have to undertake will be decidedly riskier than the first. But I know how determined I have become, and that I will run the risk of anything to make sure I can be as healthy as possible and can make the most of the life I am so lucky to have.

The reason I’m reliving all this for you is not to be maudlin and self-pitying, but to reiterate to anyone reading that there are always going to be trials in your life. However small or insignificant they may seem compared to others, and you will always be tested. How you deal with those tests is truly in your hands. You can allow yourself to lie down to the challenges in your life and let yourself be steamrollered into the ground, or you can choose to be bolder than you thought possible and face hard times with enthusiasm and hope.

In the last few years I’ve been uploading these posts it’s become apparent that many of you enjoying reading my writing. Being Scottish and therefore practically incapable of accepting a compliment this in itself is a bold move for me to admit. I’ve discovered how much I love writing; and this blog in particular. It’s like a public diary for me (without all the explicit stuff, and by that I obviously mean how many Jaffa Cakes I can eat in one sitting) and a form of therapy in a way; to know many of you feel as I do, disease or not, serves to remind me I’m not insane. And that I’m not alone. So I suppose this post is really just to remind you all the same thing. My wonderful friends and family have shown me in the last few weeks that I am truly loved. It feels good to be reminded, because sometimes its necessary. I want to spread some of that warmth your way. Whoever you are, you are not alone, the feelings you feel are real and things are never as bad as they seem. There is always someone willing to listen if you are willing to talk. Open up and let someone in. I mean that in the least sexual way possible of course. My Dad might be reading this.

And it’s 12 by the way.

12 bloody DELICIOUS Jaffa Cakes. My proudest achievement to date.

 

 

To Each His Crohn

My blog posts have been pretty down in the mouth lately. That’s mainly because I’ve been feeling distinctly below par. Both mentally and physically. The two tend to run in tandem for me where Crohn’s is concerned.   I try my best to remain positive when symptoms strike, but it can be incredibly difficult. I’ve spent most of the week throwing up, rushing to the toilet and in pain.  

The problem with pain and Crohn’s is that if you’re anything like me you can forget how bad it can be until it invariably strikes again. Pain can vary from slightly annoying cramp-like niggles to the feeling you are being stabbed in the stomach with a red hot poker. Frequently unbearable and can often impede anything from walking long distances to simply sitting upright.  

The pain is awful and can be relentless. But it’s not the discomfort that gets me down as such; it’s the potential for interference of plans. When the disease starts to involve itself in my social/work life is when it really hits home how much of an impact it has on my life. I hate when it’s necessary to change plans and let people down due to my illness. I can’t stand when my condition affects my work and get unfeasibly frustrated when I can’t perform even the simplest of tasks without almost keeling over.
Lately I’ve been thinking a lot about my future and what I want out of life. Obviously in an ideal world, Crohn’s Disease wouldn’t be top of my list. But I’m stuck with it.  

One of my favourite lines from one of my favourite songs is ‘You get the love that you allow’. I want to have the disease that I allow. What I mean by that is that I intend never to lie down to my illness. Unless I’m under general anaesthetic I imagine. Whilst I am well, I will relish it and when I’m sick I’ll deal with it with as much dignity and grace as I can. Behind closed doors of course; there is frequently little dignity in a bowel condition. When Crohn’s interferes in my day to day life I’ll try my best to dedicate the time I need to get better so I can feel like ‘me’ again and not an invalid.

Crohn’s can take away such a considerable amount of control from the patient that it’s essential you retain as much as you can of your life ‘pre-Crohn’s’.

I aim never to allow what can be seen as a negative to cloud the positives in my life. How I manage that is really up to me.

Crohn to Pieces

Lately I’ve forgotten who I am. I feel a little like I’ve lost my identity.  I haven’t valued myself enough, if at all, and I am struggling to establish where I fit in in my own life.

Everything is up in the air and people who I have previously never doubted have suddenly executed U-turns which have knocked me for six. I’ve spent the last few weeks feeling quite forlorn and alone and I have been struggling to see past it. I’m writing about my woes because I feel it helps me think more clearly. I apologise in advance if it sounds at all whiny. If you regularly read my blog you’ll know this is never my intention. And if you know me in ‘real life’ you’ll understand why I’m being cryptic. Sorry about that.
I’m frightened of the future. I am afraid of what lies around the corner and unsure of my role in the world. I’ve never felt this way before and this is possibly what frightens me the most. I’m not depressed; anxious perhaps, but I don’t feel hopeless. Just a little bit afraid.  Before now the only things that scared me were Jenny Long Legs and those illustrations in my childhood story book of people with no features on their faces. ARRGH.

My disease is active and helping out my current stresses by acting up. This just adds to my already existing worries and makes life that little bit harder. For once it’s not my main concern but it serves to remind me that no matter what life throws at me I’ll have to consider my condition in everything I do. I’m blue and feel dejected. I know I need to pull my big girl pants up and get on with life but at the minute it’s easier to hide in a cupboard till it all blows over. Not literally of course, I’m also claustrophobic. (Should really have mentioned that under ‘things that scare me’…).  Living with Crohn’s Disease takes its toll and when stressful situations arise it’s hard not to feel sorry for yourself. I generally steer clear of this course of action as it’s a trait I find abhorrent in others. I prefer to focus on the positives and the rest tends to follow suit. Although it feels lately there haven’t been many of those positives to cling on to.

For once I don’t really know where I’m going with this blog. I think I’m just trying to remind you (and myself too probably) that you mean something to someone. You are special and unique and when you forget it make it your priority to surround yourself with people who love you and remind you.  The thing is, it’s very important to remember you are important. You offer something to the world. No matter what anyone else tries to tell you.  I need to take some time to remember that myself. Maybe I should just try to get over all those things that scare me.

Thanks for listening, I’m off to jump into a wee cupboard filled with Jenny Long Legs and cuddle someone without a face. X

I'm So Tired of Being A-Crohn

Whether you live with a chronic illness or not, it's important to surround yourself with positive people who are a source of inspiration wherever possible. 

My parents, brothers and group of closest friends are a never ending fount of inspiration to me. They smile and endure the difficulties life throws at them, and come out of every challenge they face that little bit stronger.
Individually they are all incredibly different people, with often polar opposite outlooks in life, but they all have their humour, kindness and enthusiasm for life in common. 

They are all human, therefore they often fall to pieces and air any gripes they may have, but they never whine. Never weep and wail about how hard done by they are - and if the urge ever takes them to do so, they do it with dignity; behind closed doors or in confidence of a loved one. They keep their personal lives private and share their highs and lows with the people who deserve to hear them. 

I hope over the years I have developed even an ounce of their strength and resilience. 

I'm not trying to make you jealous here at how unbelievably awesome my friends and family are; just trying to remind you to focus on those that matter to you. Take inspiration from the way the people you love are. 
 

Crohn's is still such an unspoken and 'embarrassing' illness that it's often easy to forget that people can still feel awkward or ashamed to discuss it. I certainly don't think that's right, or healthy, but unfortunately it's the way of the world at the moment. 

I'm not ashamed of my illness. I don't feel I ever have been.
There was such euphoria when I found out what was wrong with me that it cancelled out any potential horror I may have felt at the realisation I'd be thinking about my bowels everyday until I kick back in my grave. 

It's not a well known illness so it's one we often need to explain again and again. This can be relentless and frustrating and just really, really BORING. That's why I find it vital to have people in your life who 'get it' and who would never think less of you because of what you suffer from. Oh and most importantly; who would never pity you. 

There's no reason to ever feel alone with your disease. Open up to those around you and they may surprise you by showing you just how wonderful they really are.X

                                                         

 

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..) 

                                            

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..

                                                  

 

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.." 

UNBELIEVABLE RAGE. 

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.