Top Trumping

When in the midst of a pretty nasty flare-up recently, someone said, by way of offering comfort, that I should remember 'there is always someone worse off than yourself'. 

Maybe surprisingly I don't take that as a comfort and am always slightly baffled by the phrase itself and the insinuations that go along with it.

Personally, I know that when i'm ill, I try to remind myself that there are people out there suffering much more than me; not because it makes me feel better about myself, in a smug competitive suffering sort of way; but because it brings home how lucky I am to have Crohn's and not something much worse.

I can't for the life of me understand why anyone would relish the prospect of another human being enduring more pain and suffering than them just because it makes them feel better about what they are going through. It's childish in my eyes. It reminds me of the playground and how petty arguments were started because one pupil had a better pencil sharpener than another. 

There appears to be a strange class-system in the world of chronic illness. Some people love to tell you how much time they have spent in hospital or how many surgeries or procedures they've had to endure. Like a warped game of Top Trumps. Where really there are no winners. 

Of course this attitude is common, but thankfully I've encountered more of the other end of the spectrum, where people just want to help, advise, and care for others, not pummel them into oblivion with their woes until they submit and admit you are indeed the sickest person in the room. 'I see your flare-up and raise you a bowel obstruction!' Congrats! 

Ideally, if I could, I'd love to follow in Michael Jackson's footsteps and heal the world, make it a better place, etc. Although he seemed to go slightly awry with that plan..

But in reality all I can take are minuscule steps to try and help people understand that we are all in it together. I know that people look at me and often think 'thank god I don't have that..' but I know that some are also filled with a bizarre envy, seemingly under some false pretence that as Crohn's patients we get special treatment. There are no immediate 'benefits' to living with chronic illness, no red carpet at the hospital door and no gold credit card for the vending machines; we might be back and forward to doctors and consultants more often than most but that's because we need to ensure we manage our illnesses as effectively as we can. It's tiring. It's not to get time off work, skive or get sickly brownie points or pity, because on the whole that is the last thing we want. Most of us want to live as normal a life as possible, under abnormal circumstances.

If you are reading this and in disagreement with everything I've written then it's possible you need to take a look at your attitude towards your condition before it overwhelms everything else in your life. Try to look at the world as a place where we try to lend a hand to someone on need, not show them how your hand is on much worse condition than theirs. Trump them with kindness. 

The Underdog Days are Over

It’s August. One of my favourite months of the year. My favourite is December, since you ask, because that’s when there’s snow everywhere  (and the country almost comes to a standstill), we give each other lovely presents (and end up in financial ruin in January) and I get to make use of the part of my wardrobe I’m most comfortable with;  JUMPERS. LOTS OF JUMPERS. Some jumpers ON TOP OF other jumpers. Bliss.

But I digress. August is a great month for me as its slap bang in the middle of summer, although we in Scotland take a quite different slant to traditional summer (5wks of rain and 2 where we raid the sun lotion shelves like there is an apocalypse coming. And it’ll be HOT when it comes). It’s the month of my birthday, my Mum’s birthday, my partners’ Mum’s birthday and several other close family members and friends. It’s pretty much a whole month of celebrations for me. There’s always something happening and it’s always lovely.

August was also an important month for me back in 2010. It was the month I was told I had Crohn’s Disease. It felt for a while like the worst moment of my life and that my future looked beyond bleak. I know now, that it was the beginning of a major challenge and huge chapter in my life. I say ‘chapter’ but a life-long disease is more of an on-going story. Or blog, if you will. Sometimes it has things to say and bile to spout, sometimes it tries to take an undignified stance and rule the roost, but mostly it just likes to remind me on a daily basis how it can control me with the simple click of a diseased finger.

August 2010 was also 2 months before my partner and I moved into our first proper home together, and 5months before I had life-saving surgery. It should have been one of the most stressful times of my life. Instead it was one of the most exhilarating. Don’t get me wrong, after my diagnosis I wept and wailed at my freedom seemingly being taken away from me, I was terrified of what lay ahead and had moments of utter despair and hopelessness. But I also endured. I didn’t fall to pieces, I didn’t push people away and I got through it. Like I now know I always will.

That August and the few months following were probably the hardest in my life but they are engrained in my internal history book as defining moments in my life. Ones that helped turn me from a scaredy-cat who was frightened of so much as a needle in her arm to one who has the confidence to face a surgery which may well have left me without major parts of my anatomy. I’m not looking for praise or a round of applause; I’m just proud of myself and will continue to remember that time as one that proved what I was capable of. If I ever feel weak and pathetic or that I’m letting my disease better me, I remind myself I’ve coped with a lot worse.

And that August will always come back around.

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

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.

 

 

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.

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. 

Game of Crohn's

It's a common aspect of having a chronic illness to spend a lot of time in doctors surgeries and/or in hospitals. 

Unavoidable really then that you will encounter the staff that inhabit and exact the running of these buildings. Doctors and nurses. Maybe even surgeons. 

It's also common that happening upon a bad or simply unpleasant experience with a health professional is one that we as regular patients will encounter from time to time. Myself, I've had many of these. Only one or two however that I would consider 'blogging fodder' - and by that I mean experiences so awful and/or shocking I'd want to wax lyrical about them, for all the world to see. The thought has crossed my mind that why should I, as the tiny weakling of a patient bow down to the power someone in a role so important has over me? 

Shouldn't I go hell for leather and publicise such horrible treatment across social networking sites for all the world to see? 

Well the short answer is no. 

In my humble opinion, mouthing off about a difficult time you've had, with a difficult person, can only do more harm than good. Of course if the experience you wish to speak of is so bad that it's breaking rules of patient/doctor conduct then by all means speak out. But through the right channels. Speak to the persons head honcho. Or complain to the ward sister. Deal with it within the hospital or the health board. 

Posting an inflammatory rant on Facebook, Twitter or your social network of choice may make you feel better for 5minutes but will it solve the problem? Now please, don't get me wrong, I've spent a lot of time in hospitals. I've had countless experiences where i've wanted to scream from the rooftops that something shouldn't be happening, and I've relayed all these stories to my family and friends. So i'm by no means judging anyone who has or may do this. Seeing a few of these posts today alone has just got me thinking that it can be potentially harmful to a much wider bracket than the post-ee may think. 

The advent and attraction of social networking, health forums and such like has also made it part of the norm to post these feelings to the wider world. Conversations are carried out en masse with friends where anyone can stick their opinion in.  

Myself, I used to use these sites to provide updates for my friends on my time in hospital - I'd post funny statuses from 'inside' and announce when I was getting home excitedly. As I still see a lot of you do. That's obviously fine and a great way to update those you don't always feel like texting or calling when you are already weak and tired or utterly forgetful thanks to tons of medication. It's one less thing to worry about when you are already in a big enough state of anxiety about your future out with the ward walls. 

When it becomes health-bashing is where the problem arises. Bear in mind who may see what you are posting. Health communities can be tight knit, and people take advice from others, you don't know what damage your potentially worrying words could be doing to someone reading them. You slating a certain hospital or doctor could cause no end of anxiety to someone about to go through the same thing. I'm not of course implying we sugar-coat everything, but often this doctor- baiting is an aspect of 'competitive suffering' I just can't get on board with. We are all facing this illness together - it's not a race to the finish line it's a case of learning how to cope and face each day without feeling like death to the best of our ability. Where is the sense in pummelling others into the ground for being less worse-off than you? In hospital or without? If you are having a hard time in dealing with your doctor, request another one. Don't put the fear of god into his/her other patients. You may be the common denominator.. 

I'm not preaching we have the most wonderful health care system or the most perfect Mary Poppin's style staff but our NHS is already fragile enough - as are we - don't work at compounding matters for your own irrelevant gain. Put some of that energy into getting well.