Saturday, 26 April 2014

Happy Just to be with Loo

I've never been one for these 'inspirational' quotes you find strewn all over social media. I generally find most of them tip me more towards nauseated than 'inspired'. They inspire me to vomit, if you will. 
Nothing against those of you who post them, or perhaps even take some form of comfort from them. I liken it to religion; I may not agree with certain beliefs or opinions but I would never reprimand anyone for them. I've certainly never been so bold (or offensive) as to stamp all over someone's beliefs. Besides I only wear a size 4 and a half. 

These quotes I refer to usually come from a place of mild misery. 
'Let me show you how strong I am by posting something someone at some point in history may or may not have said' 
I appreciate, for example, Marilyn Monroe was (and still is) considered a role model for young women as she was a good looking, curvaceous woman, however I find it hard to believe she spouted quite as much drivel as my Facebook feed implies.
"Eat more cheesecake!" - Marilyn Monroe.
"Remember to take the bins out" - Dalai Lama. 
"Maybe it's Maybelline" - Adolf Hitler. 
You get my point. 

The reason I don't really like these quotes is because I find them a little bit twee and mainly fruitless. What gain came come from someone I barely know telling me to 'Smile it might never happen!'? Apart from me finding myself charged with grievous bodily harm of course.

However, lately I've started to think about my life in a slightly different manner. I've been seeing a counsellor and have had the chance to think long and hard about what may be holding me back in life. 

I've come to realise I've been blaming Crohn's Disease too long for anything negative in my life. Yes it's a massive part of me and it's caused me no end of unhappiness in the past few years, but it's can't be held responsible for every wee thing that goes wrong in my world. I've spent too long feeling consumed with anger and bitterness over things I can't change and I've accepted I need move on and tuck those feelings away in a nice double-locked safe in my brain so as not to let it spill out over and over again and destroy the happiness in have in my life. Of which I have bountiful amounts. I have to let the happiness in and the misery out. Easier said than done but I know I'll get there. The alternative doesn't bear thinking about.
 "I choose to be happy" - (Kathleen Nicholls, 2014)

Friday, 18 April 2014

Rear, Far, Wherever you Are

When I began blogging back in early 2011 I didn’t expect anything to come of it. I merely wanted a distraction from lying on my scrawny behind and watching endless episodes of C.S.I. (New York, since you ask) This hiatus from my normal routine had been enforced due to me having had a chunk of my bowel and intestines removed due to my Crohn’s Disease. I had to do next to nothing for 4months after my release from hospital incarceration and was gradually getting my appetite back and in the process eating my local supermarket clean out of Jaffa Cakes. Something to distract my hands from delving into yet another packet was a welcome idea. When people began to read my daft posts and I began to build friendships and Crohnie alliances all over the world it became more apparent the blog was as much for me as for the people who took the time to read it. I couldn’t believe people were interested in anything I had to say (especially as in the first few months of writing I wasn’t massively knowledgeable about Crohn’s myself). I was learning as I went and the relationships and contacts I was making have now become invaluable.

However all things considered it now feels that I have spent a lot of time writing for others and not myself. The intention of the blog for me, certainly after the first couple of months anyway, is to help other sufferers feel less alone, to share my experiences and thoughts in the hope that others can relate and realise there is always help out there if you are willing to look. It’s also served as a handy tool in helping those closest to me understand what I am dealing with.

Nevertheless it seems that I’ve used this ‘tool’ to stop having to verbalise how I really feel. I still probably hold back in the blog – I feel I have to – let’s face it, no one wants to read the graphic details of my symptoms and no one wants to be depressed to within an inch of their lives. I try to keep things light-hearted for the most part and wherever possible, because that’s how I approach the condition in ‘real-life’. But that’s much easier said than done, and sometimes I need to learn to be a wee bit kinder to myself. Everyone does I think. I tend to put others feelings before my own and worry to excess about how my illness will affect them. It’s exhausting and pointless because the bottom line (pun always intended) is that I can’t control how anyone may or may not feel. I can only be honest and open and hope that my loved ones can understand when I’m not at my best. (Whatever that best may be).  I intend to be a little easier on myself and try harder to accept my lot.  I don’t have to spend the rest of my life dwelling on having gotten such a bum deal. Remember what I said about puns?

Saturday, 12 April 2014

Takin' 'Bout my Gut

I spend a lot of time talking to other sufferers of Crohn’s Disease on social networking and beyond. The main feeling I generally get is that there are generally two types of ‘sufferers’. These people tend to be absolute polar opposites. Bowels apart you might say. Allow me to explain...

There are The Professional Patients’ as I like to call them; those sufferers for whom the word ‘patient’ doesn’t really apply. Those who seemingly take delight in relaying their tales of woe at any available opportunity. I find this type of person tends to consider themselves as a ‘victim’. They have a fairly sickening ‘woe is me’ attitude, and love nothing more than having attention (and sympathy) lavished upon them. These people are a massive irritation to me. Don’t get me wrong, Crohn’s Disease is incredibly difficult to live with, but it’s far from an instant death sentence. The key is in learning to live with it; not allowing it to take over your life. These constant complainers take great pleasure in relaying how miserable and difficult their existence is, seemingly temporarily forgetting they are not the only people on the planet who have ever been sick. They are fans of relaying every gruesome detail of their illness across social networking, amongst family and friends (and stranger’s if they get the chance). They are usually Doc-Botherers’ too; never away from their doctors surgery or hospital with every minute symptom.  There is, of course, nothing wrong with being a little cautious and vigilant over the state of your health, especially with a chronic illness, however there is a fine line between extra concern, and hypochondria. One of my least favourite qualities in a human is selfishness and these patients tend to epitomise this quality. They want those around them to remember at all times that they are suffering and everyone around them should therefore act accordingly.

Now the other variety of sufferer I refer to is one I can really get on board with. These patients are in vast contrast to those just mentioned. They obviously feel the same pain and endure the same symptoms; however the main difference here is that they don’t play on any of it for attention. They simply deal with their condition as respectfully and gracefully (as you can with a bowel disease). They loathe attention being lavished on them due to Crohn’s, and aim to live the best life they can despite their illness. These sufferers tend to find they sometimes need a little extra attention or perhaps just consideration, mainly because they often don’t actively seek it out for themselves. Occasionally these sufferers often conceal more than they perhaps should. They don’t want others to view them in a certain way, and those feelings can sometimes lead to irritation and anxiety over the possibility of losing control over certain aspects of their life. They want their lives to be as ‘normal’ as possible, and sometimes end up pushing themselves to the limit, physically and mentally, in order to achieve this.  These patients also find themselves sharing their story more than they perhaps should. They take on others issues and try to help as best they can, which can often serve to increase their own stress levels.

These differences in patients become more and more apparent the longer that Crohn’s is a part of a sufferer’s day to day life. I’d like to think I’m somewhere in the middle of both of those, although I fear I’m probably not that unique. I probably go through most of these aforementioned personality traits about 50 times a day. It all depends on your outlook. If you want to become a ‘patient’ rather than a person that’s entirely your choice, however it may lead to boredom, depression and others withdrawing from you. No one wants to hear about your bowel habits 24 hours a day – I certainly don’t want to think about my own, let alone force the rest of the world to share those intimate details too.

Sunday, 6 April 2014

Toilet-Paperback Writer

As most of you will know I’m in the process of writing a book based around my experiences shared in this blog in the past few years since my diagnosis. It’s been a labour of love, but mostly a very difficult experience. Lots of you are lovely enough to enquire as to how it’s all going so I thought I’d share a little update on my progress…
Writing a book based mainly on your own life isn’t as easy or as much of a vanity project as you may think. Especially when you are talking about some of the worst and most painful (mainly literally) experiences you’ve ever had. You wouldn’t think any research would be required when writing about yourself but it is amazing how many details are forgotten in a haze of drugs and pain relief. Hospital stays especially can be so mind-numbingly dull and lonely that the mind tends to blur chunks of it out and leaves only the worst or best bits. Selective memories I suppose. I started my own ‘research’ by looking out my old diaries and immersing myself in my own recent history. I spent hours sobbing into the pages as I was faced with the horrible recollection of how horrendously ill and miserable I was. The resounding feelings bouncing off the page were that of utter hopelessness and confusion, constant pain and sadness. Now I’m well aware most people who keep diaries (I have since I was 12 years old) have a tendency to dramatize – especially if you were an aspiring writer like me, but there was no drama in here, just facts. A little bit of ranting at the wretchedness of my existence but certainly nothing worthy of Sunset Beach.
After stepping back out of my pre-penned history I was able to start to thinking about how to make something so miserable into a piece of work someone would actually want to read. Preferably without hanging themselves by the end of the first chapter. (I didn’t say I set my bar high). I use my blog to try to make something universally rubbish seem slightly less so through humour, mocking myself and of course, puns. LOVE A PUN. So I figured this was the best way to go. I want people to read my experiences and see there is life beyond chronic illness, especially those who are recently diagnosed. It can be such a terrifying time for everyone involved, so the book contains lots of help for sufferers themselves and I hope their families and friends can gain a bit of insight from it too. That’s the plan anyway.  Some of my friends who are fellow sufferers’ have read the book (in its early draft) and have had positive feedback for me so far.  I didn’t quite realise it may be uncomfortable for my family and friends though, as some have told me it’s been difficult and upsetting to read as they didn’t realise how bad things actually were.
It’s hard to write about Crohn’s when you live with it. Looking at something subjectively is practically impossible because it is with you 24hrs a day. Finishing the main body of the book has taken me much longer than I’d hoped because I’ve been ill. The LAST thing I want to do when writhing around in agony is write about how great life can be despite Crohn’s because in those moments I certainly don’t believe it myself. I hope I’ve managed to get that across in the book; that life is going to be far from easy, but that it doesn’t have to change completely.  
Now, to down a vat of coffee and get back to it…

Saturday, 5 April 2014

Crystal Bowel

I’ve been thinking a lot about the future in the past few months. More specifically what mine will entail and what ‘legacy’ I will leave behind me, if any.  I may only be 30years old and by all intents and purposes ‘too young’ to worry about all that, but I also have an incurable illness. I struggle day to day with pain and sickness and when these annoyances hit my thoughts tend to drift to the remainder of my life. Flickers of ‘will this always be the case?’ and ‘what if I never get any better?’ start to glimmer then burn away in my mind as quickly as they light.

I know I am incredibly lucky in my life. I have amazing friends and family and a wonderful partner who all love and care for me, I am comfortable(ish) financially, have a full time job and an active social life, and I have two cats who are the absolute BEST a cat-lady can get, but it’s often difficult to focus on any of any of the positive stuff when I feel consistently rotten. 

More recently I’ve begun to realise that I spend a huge chunk of my existence worrying about the ‘what if’s’. I know that when I look into my crystal bowel and consider my disease in the future, I see myself getting worse rather than better. I know this is of course not necessarily the case – I may, in time, be lucky enough to find myself in prolonged period of ‘remission’. Or, there may even be a cure found in my lifetime. You never know what the future holds. There are advances in medicine every day and Crohn’s is so changeable it’s nigh on impossible to predict where you will be physically from one day to the next, let alone in 5 or 10 years’ time.

I’ve decided it’s good to have plans; in terms of what I want for the years ahead; but far from healthy to focus all of the little energy I have into worrying about what the future may hold for my ailing bowels.  I may get worse, I may spend much more time in hospital and I may end up back on the operating table. But I can’t stop or even control any of those things so why waste time worrying about it? The only things I can be 100% sure of are that I will die, and that I will always have cats. How I die, and if the cats are somehow involved, I’ll never know.

I can’t control everything in my life. I think that’s the main cause of my anxiety – knowing that since the day Crohn’s blundered into my life I’ve had every inch of control (and a few of my intestines) swiped away, never to return. I have to learn to accept that I can’t be held accountable for my loved ones’ feeling sad on my behalf, and I can’t stop them feeling those feelings. They are helpless too, after all. I can’t control what happens to my body today, tomorrow or the next day. All I can do is make the absolute most of everyday in which I’m lucky enough to feel good, and ensure I follow my doctors’ advice to get the best out of my treatment. And I certainly intend to continue in that vein. That I can control.