Going, Going, Crohn

Sometimes I forget myself and get often overwhelmingly and uncharacteristically angry at my predicament. This mainly happens when either I am desperately ill, or someone I care about is in the same, or a similar situation, and I'm helpless to make them feel better. I get angry because good, kind and wonderful people have to suffer, fight and often lose battles, against horrific diseases every day. They struggle on a daily basis against the indignities illnesses impose upon them, the conditions that strip away pieces of them little by little until they are a shell of their former selves. It breaks my heart then makes me rage.

I don't really have a right to feel any self-pity as I'm alive.

Like Elton John before me, I'm still standing despite my condition and wobbly though I may be, I am still well enough to live, breathe, pet cats and listen to Beyoncé on repeat. Some people aren't so lucky. But yet I manage to feel anger at my own situation quite often. I wish I didn't. My Catholic upbringing ensures I feel almost instant and unbearable guilt at my selfishness of course, yet sometimes I still feel a bubbling rage at the hand I've been dealt. I feel fury for the people who have lost their lives after battling illness and worry for those still around; how do we move on from losing you? Why are we ok and you're not? Like any grief it is a long and arduous process to locate some sort of comfort in amongst a verifiable banquet of misery.

I've known and developed friendships with people since my diagnosis who have passed away. Some from complications due to their IBD and some for other health related reasons. I am ashamed to admit that in amongst the grief I've panicked to think what this must mean for me. Am I next? At first I didn't understand how it was even possible life could be taken so quickly, the mere idea of it being snuffed out before you are old enough to jump Post Office queues or insult people in public without embarrassment, is utterly terrifying to me. I could be taken into hospital one day and never come out. It doesn't bear thinking about. But it is thought about, regularly. With every procedure, every medication, every form you have to fill in that has POSSIBLE DEATH in the small print. It’s an inescapable worry.

When I had my first surgery I remember vividly waiting to be wheeled into the operating theatre and thinking about all the things I should have said to my Mum, my partner, everyone. Then discounting it all in an instant because I had to force myself to believe I’d wake up.  But why should I be so lucky when others haven’t? It’s a strange feeling; shame at living. It’s an aspect of living with chronic illness I’d never expected and am not sure how to deal with.  With each loss it feels as though time is running out. Like most fears it’s not bound in reality. It’s inbred from stories and experience and often leaves as quickly as it comes. The feelings of loss don’t just come from the physical loss of another human; a friend or relative, a fellow patient in the bed next door; they also come from the day-to-day loss you feel at what has been taken away from you. The things you can’t do and the activities you've had to sacrifice. Those ways in which you've become someone who needs to be cared for.

It's easy to feel positive when things are good. Not so much when you feel bombarded with misery and bad news. With chronic illness, life is like walking a tightrope. There’s a relentless and persistent fear that if you put a foot wrong you'll lose everything you've worked for. You just have to keep on trucking and take care of yourself and those around you. If I've learnt anything from Jerry Springer, and that’s where most of my moral lessons in life have come from; it’s to take care of yourselves and each other. 

Dalai Trauma

Chatting/struggling to hide a grimace with a hypochondriac this week has been a strange reminder of just how much, as patients with chronic illness, we learn to accept as 'normal'. Everything we feel and experience becomes a part of our daily lives and we quickly learn to adapt to what is essentially an abnormal situation. 

I of course never thought the feelings I felt were 'abnormal' until I was diagnosed with Crohn's Disease. I always felt my body wasn't quite like other bodies… bodies. I suppose I just put everything down to growing pains, or tried not to think about it at all to be honest; it seemed too dirty and weird to talk about. Of course I'm not of that opinion now!! I'm more than happy to discuss what’s left of the inside of my stomach and/or the Bristol Stool Chart with anyone who'll listen, anywhere! Doctors surgeries! Parties! Funerals! Anything goes.

But as patients with long-term or incurable illnesses, we learn not to complain and gripe about the small things. Small things most 'normal' people would consider being LIFE-DESTROYERS. Things such as relentless and incredible fatigue, aches and twinges from joint pain which stop you being active or carrying out BASIC IMPORTANT LIFE ACTIVITIES like scraping the last out of the Nutella jar and petting cats. We suffer pain daily and learn to treat it as just another annoyance, like cystitis and/or Donald Trump.

Even faster than the BBC buying the rights to another Jane Austen novel, it’s at breakneck speed that we make these adaptations.  

The trauma of diagnosis is swiftly followed by the realisation it’s NOT EVER GOING AWAY, then the "it’s not as bad as it was/could be/looks" creeps in and thus begins the 'new normal'. We have very quickly reached a point where we realise we tolerate a lot more than your average Joe. If you are reading this and your name is Joe it’s just a turn of phrase Joe, calm down Joe you’re always overreacting Joe. We learn what our stomach can stomach pretty quickly and act accordingly. It’s not fun and it’s not a situation we want to find ourselves in but it’s where we are and must be acknowledged. Burying our heads in the sand is pointless (and really nips the eyes).

The important thing to remember when accepting this new version of normality is that we don’t neglect to keep questioning things. Don’t just 'accept' absolutely everything as part of the sickly process. Question WHY the pain is worse?, WHEN is the best time to seek a second opinion?, WHERE in the name of all that is holy is the Nutella kept in this house?

If we allow ourselves to accept pain and misery we will become pain and miseries. (Aware that sounded much more Dalai Lama than I’d expected but if you want to list me in the same vein as him then that's fine, I won’t complain. Although I will add I have much better hair and breasts than the big man himself. But in all seriousness, it’s vital we only allow a certain tolerance of our new version of ‘normal’. We shouldn't forget we don’t deserve to feel awful 24/7, and we shouldn't. Where we can help ourselves and practice a little self-care we should. That’s my favourite version of normality. 

Sweet as a Butt

When you are suffering from a chronic illness, there will be times when you require looking after. This ‘care’ can come from nurses, doctors, your partner, or family and friends. Maybe even your cat. (Maybe all of the above). There will be occasions when you are out of action against your will and you can’t do things as well as you used to. This might be temporary or long term. The way you react to being thrust into the role of being ‘patient’ depends largely on your outlook of your disease and lifestyle.

It can be a hard pill to swallow (often literally) if you are someone who cherishes their independence. It’s something that can be very difficult to adjust to, particularly if being ‘cared’ for is something you haven’t experienced since you were too young to realise it was happening. It can stick in the throat when you are forced to sit back and accept help. On the other side of the coin, some patients relish the pampering. They enjoy being cared for and take full advantage of having someone to order about.

Personally I find it uncomfortable. I don’t like having to ask someone else to help me with what should ideally be simple, everyday activities.

After my surgery, due to my own pig-headed determination to DIY my recovery, I probably set myself back a good few weeks. I showered alone (a MAMMOTH TASK), I made 80% of my own meals (a challenge when you can’t lift so much as a kettle), I walked up and down stairs unaided (well the bannister helped) and generally started to get out and about well before I was ready. Don’t get me wrong; there were plenty of wonderful people around me who wanted to help, and offered their hands and ears to aid me, I was just too rash at turning it down. I don’t beat myself up about this fact, anymore anyway. I know now I was naïve in thinking I was somehow superhuman and that everyone else who’d told me my recovery would take at least 4 months were just wimps who really needed to stop overreacting.

The other potential problem in being cared for is the feeling of loss when said care is inevitably taken away. There will be times when you are well enough to look after yourself – hopefully more often than not – and that can be difficult adaption to make in itself. Suddenly you have to be a grown-up again who relies solely on his/her self. The attention alone can be a habit that’s hard to kick. I mean, much like Beyonce, I’m an independent woman [throw your loo rolls at me] yet I can sometimes feel very alone when I’m ill. I often revert to my childhood and just want a cuddle. I just want my Mum. Pathetic as it may seem, it’s not uncommon. If you are stuck in hospital for any length of time, you are obligated to be cared for. It’s why you are there in the first place; to get better. So strangers will surround you and feed you, medicate you, maybe even clean you. They will change your sheets and wake you up, they’ll tell you when its lights out and when you can and can’t have visitors. They will basically turn you back into a TEENAGER. Therefore it’s strange to be released back into the wild and be expected to do adult things, like pay your mortgage and renew your car insurance. YAWNFEST.

However if, like me, you pride yourself on doing it all yourself because you’re a big girl, then having the care of others thrust upon you then pulled away like several CM of your intestines, can be distressing to say the least. It can cause anger and confusion, and give the feeling of having to start over again and again. In short it’s a bummer when your bum is no longer the centre of everyone’s universe. But although, again much like Beyonce, I buy my own diamonds and I buy my own rings, I am not Beyonce, and in the long term I wouldn’t want my rear end to be the subject of such daily scrutiny.

I’m learning to accept help when I need it and look after myself when I don’t. I still find hospitalisation uncomfortable but a lot of that probably comes down to how I perceive it; having a ‘don’t help me’ attitude doesn’t go down too well in the very building MADE FOR HELPING. The bottom line (pun always intended) is to find your own happy medium. Don’t play the martyr, take assistance when you require it, but don’t lie down to your disease. Fight back when you can and don’t play the victim. It’s an easy trap to fall into. Also if someone offers you chocolates and/or flowers; take them; if you are allergic to chocolates and /or flowers, I’ll take them. I’m caring that way.  

Diseased to Meet You

About 6 months ago I went to see the doctor. Not an unusual activity I hear you cry; this is a blog about chronic illness after all. However for once this visit wasn't Crohn's related.
I went to see him because I'd been feeling pretty low for a good while and felt I needed to do something about it. I’m very proactive in the upkeep and management of my physical health so I decided I should take my own advice and adopt the same attitude with my mental health.

I told my doctor I suspected I had PMS due to the regularity of my mood changes, my cycle, and that it appears to have gotten worse as I've grown older, and also oh my god I shouldn't even be here this is so stupid I'm just wasting your valuable time etc etc.
He told me to stop being silly (in his own words) and asked me a few questions. Before I knew it he'd put me on a course of anti-depressants.

I left the surgery and walked out into the snow with a prescription for anti-depressants when I'd pretty much expected to be gently but sternly reassured I was just feeling the same blue moods every woman feels from time to time, and to be trotting happily into my new stress-free life.

NOPE.

We had a brief discussion about the possibility of my moods being caused by PMS and he listed the regular solutions to this issue (all the birth control I can't take thanks to my Crohn's meds and some hippy remedies to try instead to alleviate my devilish hormones). All to appease me however, as he was adamant this wasn't the case. I was confused, and dare I say it, depressed; to learn that whatever I'd said in that few short minutes led him to think I needed this course of action over simply pulling my big girl pants on and getting on with it. That’s what we British do isn't it? Drink tea, queue, cough and get on with it? Mind you my Doctor is Irish working in Scotland so maybe he’s less stiff upper lip about the whole thing.

I wasn't depressed, I'm NOT depressed. Am I? I'm not someone who takes anti-depressants. That's for other people. People I know and people I don't, people who feel low at times, struggle with anxiety, get stuck in a funk and need to give their fuzzy brain a bit of help…oh hang on; ME, THEN.

As soon as I was about 10 yards away from the surgery I felt guilty. Guilty for assuming the exact thing that I berate others for; lumping people together in a deranged list based on their medical problems. I hate being singled out, or worse, avoided, simply because I have Crohn's Disease, so what gives me the right to assume what 'type' of person should or shouldn't be depressed? It’s a label I realised I’d give people off the cuff and a phrase I'm ashamed to say I used too readily.

I write a lot about how important positive mental health can be in coping with chronic illness, so why was I so averse to trying something that might help mine? The doctor himself said it's not uncommon to have these blue moods when you have so many symptoms, and feel so unwell most of the time, but somehow that wasn't a comfort. It just reminded me that others in my predicament may be feeling low and struggling and finding it hard to see a way out. It felt as though I had to face another unfortunate truth that maybe these feelings won’t just pass without a little help. I wallowed for a while and put it off and focused on my Crohn’s treatment. I felt the same, if not worse as things progressed.

So, here I am, 6 months later, and I’ve got my prescription! (Baby steps here..) I'm happier to admit now when I'm not always happy, and ready to feel better. 

As with accepting my Crohn’s diagnosis, I know that I’m not admitting defeat in receiving help; I’m helping myself. 

Sitting back and waiting to get ‘well’ never ends.. well. So I’m opening up to the idea that there’s nothing wrong in feeling this way; I’m low and need to get a lift back to the top. Where I belong. See you there! 

Every-Bodies Talkin' At Me

How much detail is too much detail when discussing your illness with those around you?

It’s a question I find myself asking a lot. It seems finding a balance can be difficult, certainly depending on who you are talking to. My own general rule of thumb (bowel?) goes as follows:

Strangers: Description of my condition taken almost word for word from Wikipedia with the inaccuracies removed.

Family: General overview of the banalities in having a medical condition, such as upcoming appointments and treatments. A little on side effects and brief summary of how I’ve been feeling.

Friends: All of the above, plus obscenities and graphic descriptions of my bathroom habits, including random swooning over attractive doctors/nurses/hospital janitors. Lots of generally unreasonable whining.

Fellow patients: Rage at doctors/nurses/hospital janitors, more graphic descriptions of my bathroom habits and visceral descriptions and theories of my internal organs and beyond. NO HOLES BARRED. Literally. Although the whining is reigned in a little more here.

Maybe you have a similar system. Or maybe you aren’t a nutcase like me and don’t use a ‘system’ when communicating with other human beings. Either way, it’s something we all tend to do in some, if not all, aspects of our lives. Alter our tales for certain audiences. COME ON, don’t try to tell me you’d describe that first date you went on and your subsequent loose morals in the same detail you would to your best friend  as you would to your Dad? DIDN’T THINK SO, SMARTYPANTS.

For me, the main issues in talking about my disease openly with everyone to the same extent, are the fear of upsetting my loved ones, unnecessarily worrying people I care for, or disgusting relative strangers. I don’t think this is a conscious decision; to change tone, but it’s something I’ve found myself doing to a greater degree lately. I’ll also fall into the dangerous trap of whom I have told what, thus confusing myself and potentially hurting someone’s feelings when they inevitably think they aren't special enough to hear that particular never-ending-colon-story.

It’s exhausting having a chronic illness. So it’s doubly tiring when you have to relay the same sorry tales over and over to everyone in your life. Don’t get me wrong, I want those around me to care about me and my illness. I want them to want to talk about it, and to learn with me as my body changes and life progresses. I desperately want to rid the world and greater universe of shame and embarrassment around MY disease; but I can’t do that alone. I need my friends, family and all of YOU to help. Talk for me when I can’t. Talk for each other. Don’t think because I’m not talking it’s because I don’t want to share my life with you, it’s probably because my life often feels consumed by illness.

I can’t deny my disease is a huge part of my life, because it would be fruitless. Much like my Facebook friends around me having babies and getting married, going for manicures and getting Graze boxes delivered, my swollen colon is an active part of my day to day existence. I just don’t paint mine with glitter and post 480 photographs of it on social media. (Although if that was an option I SO WOULD). 

Baby and Crohny

I was explaining a little bit about my condition to a colleague the other day. They had only just found out I have Crohn’s Disease and hadn’t heard of it. They were genuinely interested and a bit taken aback at all it entails. I gave them the ‘U’ version of my story for now; don’t want to crash straight in with the gore and misery until we’ve at least struck up a vague friendship. Plus it was pre-lunchtime.

As I relayed my abridged tale of diagnosis to present day, I realised many of my sentences were set in the past. Lots of “I used to..” , “when I could..”, and the worst of all, “I used to love doing that…”. When I mulled the conversation over in my head later, those points were all I could focus on. 

Why was everything I used to love being pushed to the past simply because I’m sick? 

That’s not entirely true of course; I am still relatively active, I still enjoy most of the things I used to but 'in moderation' now. 

In moderation never used to be a phrase I had expected to use until at least my 60’s. And being Scottish and a lover of both alcohol and fried foods, I generally didn't think I’d make it to my 60’s. 

When you suffer from any form of chronic illness, moderation is a word you will hear a lot of. Everything in moderation. Remember everything you once enjoyed? Well start taking that in tiny little doses until eventually any shred of pleasure you once gleaned from it is all but extinct and you live solely on carrot shavings and the salty tears of Mumford & Sons. That’s what I hear when I'm told to do things in moderation anyway. 

I understand why of course; If things make you feel worse then you should generally avoid them. I really should have used the moderation lesson with my first boyfriend, but you live and learn. 

Healthcare professionals want you to do all you can to help aid them in giving you the best shot at a healthy and happy life. Therefore they'll handle the medical stuff and it's up to you to work on the 'happy' part. If you focus on what you can't do, you will find your focus become blurred with nothing but sickness. You don’t want your life to revolve around your illness yet its often almost impossible to avoid the topic. 

It’s so easy to forget about the things you love to do when huge chunks of your life are taken up by all the medical and actually ‘being ill’ stuff.

Here are some activities I love to do, (despite not being very good at them..)

- Dancing. I love to dance because I feel absolutely in touch with my body- yes I'm well aware how unbearably pretentious that sounds but I don't care- there's nothing better than moving in time to music, except maybe when you're friends or a handsome man are doing it with you.

- Writing. I love to write because it's opened up a world of support and expression for me, it's gifted me wonderful opportunities to help others and that's just the BEST feeling in the world. (Other than when Gett Off by Prince comes on at a good party obviously).

- Impressions. [Disclaimer: mainly limited to Irish accents, the high-pitched Bee Gee and Arnold Schwarzenegger]. I love to do impressions because I have an obsession with perfecting an accent and will annoyingly do it over and over until I get it right. It's not big or clever but it's as satisfying as nailing that Baby and Johnny lift without breaking an ankle.

- Painting. I love to paint because I love the way colour affects mood and the way it can be possible to capture and interpret beautiful things forever on a canvas.

It's hard enough to fit in 'normal' life with a chronic illness. The stuff you should be doing, (in theory), like housework, caring for a family, attending work and performing your best; all of this is exhausting enough as it is without trying to force yourself to have hobbies and FUN too. But, at the risk of sounding like Yoda, force yourself you must – otherwise what is left but a shell of his/her former self who talks of nothing more than what's going in and out of her bowels. FUN, and informative as those conversations obviously are; they are generally best reserved for a certain audience only. (NOT the in-laws during Christmas dinner or a job interview). 

So try and focus on the “I love to…so I will” and make it happen. Don’t lie down to your illness. If you cant quite do whatever it may be as well as you used to, then don’t think of that as a negative but as a little personal challenge- adapt and conquer! 

But always in moderation of course..