Thursday, 25 July 2013

I Love to Hate Poo

Crohn's can be such an all consuming disease. Particularly when you are in the midst of a flare up. There are times when almost every part of you is in pain. When even your hair hurts. 
In normal circumstances, (whatever they are) Crohn's has to be factored into your plans everyday, in everything you do. I wake up thinking about it and go to bed the same. That's not as dramatic as it sounds; in waking I have to plan my morning routine around what state my bowels are in upon getting out of bed/and or having breakfast. In going to bed I have to consider my partner and if my incessant trips to the toilet will keep him awake, or will I be able to get closer to him than a cuddle without feeling nauseous. (The is 100% related to Crohn's by the way; he is a fine figure of a man). 
Due to the persistence of the symptoms, Crohn's is a big part of most sufferers lives and therefore it's important you work out how much of an impact you are going to allow it to have. Lots of patients are 'fighting' Crohn's. I have pretty much resigned myself to living in as close as I can to harmony with my illness for now. I don't want to think of myself as constantly fighting a battle I can't win. 
That's in no way meant to sound negative, I truly hope there is a cure for Crohn's one day, but I want to live my life in hope, not in constant torment at a fight I'm in no way trained for. Besides, I've never been in a fight in my life, I wouldn't know where to start. (Unless you count endless scrapping with my younger brother, which to this day still makes me feel guilty.) I'm clearly not cut out for 'fighting'.

I love my illness in a strange way. I suppose I'm a lover not a fighter when it comes to Crohn's. Don't get me wrong, it's a pretty volatile relationship and I'm not entirely sure it loves me back just yet, but I'm working on it. 

My disease has taught me an amazing amount about my own body. About bodies in general for that matter, and how they function. (Or not as the case may be). It's been a thrilling adventure for a lass who was once squeamish at the sight of her own nail breaking. I've been through so many toe-curling procedures and had so many implements inserted in so many orifices I've just had to get over that girlish nausea. But enough about my weekend, back to the blog..

Crohn's has also made me acutely aware of what I can achieve if I set my mind to it. If you choose to go with it and not allow bitterness to eat you up, it can fill you with a determination that's hard to fake. When your own body tries to set limits for you, that's when your mind puts it's proverbial foot down and forces you to take action. I've surprised myself in what I can, and have coped with and what I can do when I really push myself. 

My love for my illness grows daily. I hate it and love it in equal measure. Much like an evening coming from work to see dishes still piled in the sink, Crohn's disappoints me on a regular basis. Mild irritations as with any relationship are a common occurrence but you learn to accept them and find ways to better the situation. I've tried to look at, and focus on the positive sides of my illness. The friends I've made, the things I've learnt and the people I've helped with my blabbering writing. It's a pain, quite literally, but also a constant reminder of how strong and resilient I can be.
I love you Crohn's you mad bastard x x

Thursday, 18 July 2013

Bless This Stress

I’ve had a stressful few weeks. Because I have Crohn’s Disease that’s meant this stress has caused my symptoms to exacerbate and I’ve been feeling pretty rank rotten on top of everything else. That’s ok though, because in theory that means that once the stress is over, and things outside of my colon are calmer, more than likely the inside will also follow suit. Albeit, probably about a fortnight later. That’s the plan anyway. It’s how it’s worked for me so far.

Don’t get me wrong, it’s far from ideal. As anyone with or without the disease will no doubt know, stress is incredibly common and can rear its hideously ugly head from time to time, playing havoc with your day to day life. There’s no easy solution, in most cases, depending on the cause(s) of said stress, you just have to ride it out and hope things will get better when you come out the other end. It’s compounded when you are at your weakest when trying to deal with it though.

I try wherever I can to minimise stress in my life. However in worrying about my job, my home, my friends, family and relationship, this is easier said than done. I know I will be ill when I get stressed, but I am still surprised how quickly it happens. It’s often as though my body predicts the stress before it actually begins. An early warning system, if you will, that sticks the knife in purely for its own sordid amusement.

Possibly surprisingly, health isn’t my main worry. It was of course, pre-Crohn’s diagnosis. When I knew that I was very ill but didn’t know why, I was in a state of constant anxiety wondering what bowel related terrors lay ahead. A good few years down the line and one bowel resection later, now I know that whatever Crohn’s throws at me, and from whichever orifice it comes from, I’ll be equipped to deal with it. I have the fore-knowledge of what my disease entails at my fingertips and the backbone to speak up when something isn’t quite right.  

It’s important to pinpoint the causes of your stress as early as you can and establish what can be done to banish, or at least minimise it. Work on solutions instead of wallowing. You’ll be surprised how much better you feel being proactive rather than allowing negativity to creep in. I don’t profess to have all the answers, clearly, as I’ve already stated I’m a walking-talking stress-fest. All I can advise is to keep powering through it, hard as it may seem. Don’t be afraid to let others in and ask for help. Don’t take everything on yourself. For most patients Crohn’s is a daily struggle as it is. Don’t make yourself ill worrying about things that might really amount to nothing. Prioritise your worries and put those that deserve your attention at the top of the pile. If health is your worry then please seek the help you need. That’s one problem you can’t solve yourself.

Saturday, 6 July 2013

30 on 30

In a mere few weeks my birthday will come around I will be 30 years old. Depending on your age whilst reading this you will have several different opinions on ‘turning 30’. If you are in your teens you will think its OLD. In your twenties you will fool yourself that you’ll be cool with turning 30 yourself, when really the idea of it probably makes you heave. If you are 40+ you’ll maybe look back fondly and think your thirties were a highlight or a bit of a turning point, and if you are in your 60’s you will probably wonder what all the fuss is about and tell me to find something more important to worry about.
The truth is I’m not worried. I’m excited. For once in my life I’m looking forward to this new decade instead of looking back with regret. I’m facing the next few years with anticipation that things will be better as I leave my twenties behind. 
I’m slowly but surely coming to terms with the fact that Crohn’s Disease will always play a massive part in my life. I have resigned myself to working on what I can control, how I let it affect my head and my heart. It may well ravage my body but the minute it gets into my mind that’s when I know I have work to do.
So as I approach the status of a full blown woman of the world (or Scotland at least), what words of wisdom can I impart to those of you living as I do, with chronic illness and/or hot-stepping it into a new decade? Almost like I planned it, here are my 30 musings on the matter...

 30.  It’s ok to feel sad. Crohn’s is a horribly intrusive disease; you are allowed a few moments to wallow. Let yourself grieve for your old body, your old life and the plans you’ve perhaps had to scale down. Don’t be hard on yourself for letting go from time to time.
29. Allow yourself to be cared for. If someone loves you enough to want to help you then accept it. Don’t be a martyr to your illness.

28.  Be prepared for the fact you may lose friends. Or ‘acquaintances’. Often illness isn’t ‘fun’ therefore in their mind neither are you. It’s no big loss. The people who are there for you love you unconditionally; you’ll find them through the mist.

27.  Make yourself happy. Easier said than done I know, but bring yourself joy when you are well, find what you love and put your energy into it, don’t let your disease stop you from ANYTHING.
26. Be patient. Bear in mind it may be a struggle establishing what’s best for you, doctors and nurses are doing their utmost to get you well, so don’t make it any harder for either of you during that process.

25.  On the other side of the coin, speak up. If you feel let down, tell someone. If you are concerned about your health then speak to whom it may concern, and don’t take no for an answer.
24.  Learn all you can about your condition. You are in the midst of the most challenging time of your life, you need to be as prepared as you can for what lies ahead. Things are never as bad as they seem, and it makes it a million times easier to deal with whatever’s thrown at you when you are forearmed.

23.   Might sound a bit hypocritical considering you’re reading this on a personal blog, but keep some things private. The world and it’s wife doesn’t need to know about your latest bowel movement.

22.  Protect yourself. Keep the things that matter close and don’t allow yourself to get caught up in that which won’t keep you warm at night. Treasure what’s real and what matters above all else.

21. If you are regularly in and out of hospital it’s a good idea to pack a little toilet bag filled with all your essentials. This takes away the stress of trying to remember everything you’ll need in the panic and worry of a hospital stay. Also makes things easier for your loved ones to organise everything else. It’s a nice idea to stick a wee treat in there too, a nice and unexpected surprise when you are at your worst.

20.  Focus on the future and not what you’ve left behind. Unless you are a Time Lord you don’t have the ability to change your past so instead ensure you don’t make the same mistakes again. If you are a Time Lord HIGH FIVE BECAUSE THAT IS AWESOME.

19.  Make some more mistakes before your time’s up.
18.  Maintain your dignity. Remember how undignified parts of this illness can truly be, don’t let those facts cloud who you are and pick up any dignity you’ve lost on the way back out of the doctors surgery.

17. Try not to be driven to distraction by other people’s apparently deadly illnesses – bear in mind that for someone who has never been ill a day in their life, the flu will feel like they are dying.
16. Don’t become a health bore.

15.  Or a bore.
14.  Or an eyesore. Take some pride in how you appear – it can actually serve as a good tool for dragging yourself from your diseased bed and work as a little pick me up.

13.  Tell your Mum and Dad you love them. If you are lucky enough to have them in your life cherish them. Remind them how grateful you are for everything they are and everything they have instilled in you. Nothing to do with Crohn’s, just do it.
12.  Remember it’s not a competition between sufferers as to who has the worst end of the stick. ‘Competitive suffering’ is pointless and redundant. Focus on getting yourself well and don’t waste others time in bullying them into pitying you.

11.  Don’t tolerate or welcome pity.
10. Try not to play the victim. You have an incurable illness but that doesn’t give you carte blanche to act like an arse when things aren’t going your way.

9.  Have some grace.
8.  (When you can’t be graceful do whatever you need to do behind the hospital ward curtain.)

7.  Your body is not imperfect, it’s a walking talking map of everything you’ve done and everything you’ve come through over your years on the planet. Don’t pick at what you consider to be flaws or beat it into oblivion with endless negativity. It’s honestly no fun.
6.  Have fun.

5.  Listen to your body. The longer you suffer from chronic illness the easier it will become to establish what’s worth worrying about and what’s JUST A COLD.

4.  Don’t waste your life worrying about what other people think of you. What you think of you is what really matters; are you happy with the person you’ve become? If not what can you do to change that?
3.   Be tolerant of yourself and others, don’t allow your frustration at your failing body to spill out. It will destroy even the most solid of relationships.

2.  Love deeply and show the people who care what they mean to you whenever you can. You can’t ever tell someone how wonderful they are too regularly. Although that restraining order I got in 2003 may read otherwise.
1.  Wet wipes are, and always will be, your true friend.

Wednesday, 3 July 2013

My Crohn Worst Enemy

Even after what's now been several years, I sometimes still get taken by surprise by my illness. 
This seems ridiculous even to me, as I feel the presence of my disease every day without fail. Even on a 'good day' with hardly any symptoms I still have to consider Crohn's in almost everything I do. It's become such an unfortunate part of my routine that it is on my mind the majority of my day. 
It's a consideration in my life I cant afford to ignore, be it eating the wrong things or doing too much, making sure i've taken my medication or ensuring we have enough loo roll; my condition plays a major AND minor role in my day-to-day life. 
However, there are still moments when I struggle to come to terms with it. Where I feel like I'm on the outside of my colon looking in. (It's not a pretty place to sightsee I can tell you, only 3 stars on Expedia :(..)
It may sound daft, given the fact I've already mentioned what a major part it plays in my life, but it's often still a mild shock that it's actually ME suffering from it. I feel it physically a LOT, but mentally is a harder nut to crack. 
I regularly feel I talk about it too much. Like I become a health bore. I think about my illness for most of the 24hrs in a day so it stands to reason I must yap on  about it for at least 90% of that time? Well no. Apparently not. I don't talk about it nearly enough if my loved ones comments are anything to go by. 
So how to get out of this relentless funk where I'm reminded of my illness like a bolt from the blue and instantly feel the same crushing disappointment as when the doctor first diagnosed me? The truth is I don't think there is any easy solution. It's all about learning to accept what your limitations are and not holding your disease responsible for every questionable decision you make.
I think the way I feel is often something I expect only fellow Crohn's patients will understand. Which is great, I have an amazing support network online. But I should also remember that my friends and family are neither dumb nor blind. They know when I'm sick, when I'm in pain or just generally rotten. I should focus on explaining how I feel to people who care and not feeling so defensive when they quiz me. 
If I'm in the frame of mind where I've sickened myself thinking/talking/writing about my disease, the last thing I want to do is actually LIVE WITH IT! I'm well aware how daft that sounds but that's because it is! It's a crazy frame of mind but one that I feel I experience a big chunk of the time. 
I'm well aware I have Crohn's Disease, I just wish my body wouldn't try to remind me so bloody often.