Big Spoonie Little Spoonie

The term 'Spoonie' is one commonly used with chronic and invisible illnesses. It originates from a great read; The Spoon Theory by Christine Miserandino, in which she attempts to explain to a friend how having Lupus affects her daily life. (http://www.butyoudontlooksick.com)

She uses spoons as a physical interpretation of the unlimited possibilities most 'normal' people have in daily life. She explains that those with a chronic illness don't have that luxury and are limited in the number of activities (spoons) they can undertake. The spoons were used to convey things being taken away as the day progresses. Things like energy running low and how sick people quickly 'lose' parts of themselves in the process.
To be completely honest, I’ve never been entirely comfortable with the ‘Spoonie’ term. I certainly understand why it's so commonly used in explaining the life of a professional sick person, but I often feel it's almost an acceptance of defeat. I want to award and applaud myself for what I can do, not what I can't.

I've struggled for years in having Crohn's Disease to deal with the idea that parts of my life that I love have to be limited, or phased out entirely. It's often heart-breaking and can seem so unbearably unfair. I feel like I've gone through puberty and the grieving process all at once since my eventual diagnosis.  I was almost unbearably angry at first, and accepting my life had changed irrevocably was something I'm not sure I'll ever get used to. I wept and pushed myself to be the 'old me' rather than adapting my life to suit the newly diseased me. I didn't want to be this person; I wanted to be ‘normal’, and fun and not the friend who can't make it YET AGAIN. I felt a constant temper tantrum bubbling away inside myself, (and there was enough bubbling inside to deal with as it was).

I now try to decide as I wake what I can manage that day. If I find I'm really struggling, I mentally rate myself on a score of 1-to-hospitalisation and then take it from there. I work full time but my employers are very considerate of my condition. If I can't cope they appreciate I still want to try (plus sick leave only leads to incredible anxiety) so they'll give me alternative work, or even let me go for a lie down. Housework needs to be planned too: I will maybe try at least one task after work, maybe two if I'm feeling cocky and make sure I have enough time left over for an hour or two's relaxation.

In the last year or so I feel I've finally begun to understand what it means to be a 'spoonie'. I try not to plan to far ahead wherever possible, as I hate letting people (or myself) down. My loved ones understand this now too which is an amazing bonus. They never pressure me and have adapted our relationships to cater for my badly behaved bowels. Those simple acts are incredibly kind and remind me how much I should never take them or anyone in my life for granted.

This post was written as part of The Super Spoonie Story Swap

Crohnly in your Head

A few months ago I found myself in a bit of a black hole. I was ill, and stressed in my home, and work life, (thus exacerbating my already horrendous symptoms) and I was struggling to hold it all together. I was snappy and weepy and found myself bursting into tears on the bus to work or the toilet, because that's where I was spending most of my time. Eventually after a chat with my then manager, I decided to try speaking to a counsellor. 

On making that decision, all at once I felt relief at possibly having an outlet for my apparent abject terror at the state of my life. 

I also felt a little silly. 

'I don't need 'therapy'! I'm a grown woman! I just need to get a grip of myself! It's probably just PMT! I'm taking up valuable time for someone who might really need it! Someone might have had their whole family murdered in front of them or lost their kitten and NEED help and I'm whining about MY life?!'

I calmed down and cooly calculated that if a counsellor could see me it's because they had time to do so, and weren't snowed under with distressed/kittenless orphans. Plus i was just being a big fearty.

After my first 'session' (I had 6 in all), I felt positive, and vowed to start a wee video diary to log my experiences and share it with all of you. I managed two videos then couldn't continue. Not because I got bored, but because seeing a therapist is really emotionally gruelling. If you are honest with him/her of course. 

In my experience over the few weeks I visited my counsellor, I came to realise that I had begun to blame every wrong thing in my life on my disease. In my mind, I was at fault for not looking after my emotional/physical well-being, and I was solely responsible for my symptoms worsening. 

I was angry and confused at first because she wasn't giving my the answers to these problems! Where was the quick fix and problem-solving I'd expected?! I was having to do all the hard work myself?! I had enough on my plate!

Obviously there IS no easy answer, or quick fix to heal emotional wounds. 

I had begun to realise I was much, heartbreakingly, further from having accepted my illness than I'd thought. The truth of the matter was I wasn't sure I ever would. But I'd begun to realise that that's ok. I don't have to. 

In not 'accepting' Crohn's I'll never lie down to it. I understand of course, and 'accept' that I have a lifelong and incurable condition, but I don't have to let it rule my life. It never has to seep into every part of my being.

I cried a lot over that few weeks and was angry and sad and furious, and an absolute nightmare to live with, (sorry James), but I am still here and now with 98% less fear. I accept that there are things in life and in my past that I can never change. I can't force people to act in certain ways or say certain things and I can't be all things to all people. 

I am by no means on some hippy-style path to enlightenment, but I definitely feel 'emotionally lighter' and that can only be a good thing. 

Nothing worth doing is easy, and the hardest thing is looking at your own behaviour and judging yourself. Blaming a condition, your surroundings, people around you, or your place in life, means absolutely nothing if you can't look yourself in the mirror at night. 

I can. And I still see that squint tooth and hate myself for it. 

Where's that counsellors number again...?

Flush Hour

I speak to a lot of people with Crohn's Disease, chronic illnesses and many other forms of life-altering conditions, (both mental and physical).
No, I certainly wouldn't profess to being Florence Nightingale, but I do share many of the same feelings and experiences as people in the same diseased boat as myself. So I find it helps to share knowledge, and try to offer comfort wherever I can. This is generally a two-way street, and that's a lovely safe place to be.
However, what I can stand, and what I notice more and more in my life and in the IBD community and beyond; is when people use their illnesses as an excuse for what they can't do. Or, as a get-out clause from potentially difficult situations. Even worse, to make others feel guilt or pity for them.

Nothing good in life ever came from sitting back and taking whatever is thrown at you. 'Life is what you make it' is about the only 'inspirational' quote I am quite fond of. It's one I've found good to bear in mind when I find myself wallowing in self-pity or taking my anger and frustration out on those I love.
It's true of course that misery and sadness are all a part of life's rich and (unfairly sewn) tapestry, but if we were all living in a constant state of bliss what would we have left to appreciate? We would take everything and everyone for granted.
I like the dark and light of life. All the ups and downs, and that feeling of relief and achievement in coming out the other side of a bad patch. I'm 99.9% sure I wouldn't say that when I'm in abject misery, (or having my colon investigated), but I appreciate the happiness I feel when it comes.
That's why the idea of using your condition as a stick to beat yourself with, never washes with me. Neither does lying down to a life of pain and unhappiness. What would your 65 year old self say to that on his or her death bed? (I'm Scottish so if I live to 65 I'll be pretty happy. All that deep-fried-whisky-flavoured-heroin has taken it's toll).

Having Crohn's Disease hasn't made me 'happy' - it's made me sad and heartbroken, painfully and life-threateningly unwell. It's made my day to day life almost 80% more difficult (I use percentages as an in-joke because I'm 100% useless at maths).
However it's made me see what's important, who I can depend on and made my love-stocks and shares soar through the roof. I congratulate myself on small victories, and try not to dwell on the times when I can't perform as well as I'd like, in all areas of my life, (sorry Dad).

I don't ever and hopefully won't ever, accept that I am somehow less of a person because I have an incurable illness. If I started down that road I don't think I could find my way back. I've swapped my high heels for walking shoes because I'm here for the long haul.

            

Crohn Out of All Proportion

This is a blog aimed at a particular branch of the 'sickly' tree. It's a bit of a nuisance that it's necessary but it's been a hot topic in my life of late so I felt the need to vent. 

Everywhere I look lately people are 'inventing' illnesses. They profess to have horrific and life threatening conditions in order to achieve some unknown goal. To garner attention? Gain sympathy they feel they require? I'm not sure. Whatever the reason, it's incredibly stupid and damaging to those of us who suffer from chronic and/or life threatening illnesses in 'real life'.

I in particular have tried to take the higher ground when hearing these hypochondriacs imagined tales of woe. I've gently sympathised, albeit through gritted teeth, as who am I to know they aren't genuinely unwell? I'd certainly never wish to be accused of jumping to conclusions on what may or may not be wrong with someone as it's something I've experienced on my own rocky road to diagnosis, and it's distressing and frustrating in equal measure to be on the end of someone's suspicion. 

Personally, for someone who has always preferred to fade into the background (apart from my brief hiatus at art school when I dressed like a 1970's hippy), I found the sudden flush of unrelenting attention when I was hospitalised very comfortable. I didn't know what to say to visitors, most of whom were the people I love most in the world. I didn't understand why we couldn't just chat like we did at home, why did they look ashen with worry? I was FINE! They looked ashen with worry because I wasn't fine. 

I was dying. Right in front of their eyes and they were absolutely helpless to do anything but chat about the weather and bring me magazines. 

I didn't like being thrust into this sickly limelight. It made me angry, but I wasn't angry with their attention i was grateful for it, I was angry at my situation and that it was MY illness which was breaking their hearts.

So, I do understand how it feels to have this massive influx of love and Marie Claire's all at once given, then gradually phased back to a more manageable level. When you start to get a little better you go back to being a 'normal' person again and fade back into the crowd. It can be unsettling. It can seem as though you want to stamp your feet like a toddler and shout "I'm still sick!!" But there's no need. The people who care for you know that. They are always there, they just don't need to treat you like an invalid as much now and that's good. It's great. 

For those lacking in love and affection in their own lives I suppose faking an illness could be considered a logical way to grasp some of that attention you crave. But where do you go with that? If you start lying it can be incredibly difficult to stop. And how elaborate do you make those lies? Just like heroin and Nutella addiction, lies can spiral out of control and wreak havoc on your life and everyone in it. So just stop. Aim higher. Try to have the best life possible because you are well enough to do so. Don't wish illness on yourself because you will waste away through resentment and frustration. Focus on what's good in your life and work on that. Like Nutella. Just in moderation. 

Rose Tinted Recta-cles

When I think back to my life before I was diagnosed with Crohn's Disease, it seems I'm wearing rose-tinted spectacles so tight they're almost superglued to my skull.
In my somewhat hazy memories of my pre-pain, 'healthy' life, my days were filled to bursting with fun. Dancing, drinking, romance, abandon, performing 14hr shifts with as little as a 10 minute break, never worrying about running out of toilet paper… the list goes on. However, it’s very easy to focus on the good stuff in the past when in the present might not particularly feel so great.

Torturing yourself with perhaps not entirely accurate moments from your past can be unhealthy and detrimental to your recovery. I learned this to my cost in the process of beginning to write my own Crohn’s book. I thought it would be a good idea to refresh myself in how exactly I felt pre-Crohn’s, post-Crohn’s and all the nasty gory bits in the middle, by reading my old diaries. I’ve kept a diary since the age of 14 so I had plenty to work with. I half expected to see a massive change in my lifestyle, to read dejectedly as the pages turned from joy to misery in the space of the weeks and months leading up to my diagnosis. I didn’t.

I read about a woman who was growing and learning about her body and her heart. Learning how to use her own mind, how to separate the wheat from the chaff in her social circles and how to treat those around her with kindness. I read about a woman becoming a woman, in every sense of the word, and worrying about not becoming the type of woman she, or others wanted her to be. About a woman who was completely and utterly pant-wettingly terrified about what was happening to her body and about losing herself and the people around her. I read about a woman who had a horrific crush on that boy in high school who would have received the blackest of black-eyes from her Dad if he’d so much as come within 15 feet of her.

I cried into my own pages and struggled to remember that this was me. I realised that I had felt incredibly alone in my suffering for a long time, and how happy I am now that I don’t have to go through that loneliness and confusion ever again. As I read my own forgotten words I felt sorry for this woman and wanted to tell her it would get better. That people love her and won’t desert her, and that eventually the pain will get easier to bear. And that she will end up with a hilarious and handsome man who loves cats just as much as her, because miracles do happen.

The Devil's Crohn

Often the main obstacle in getting well with a debilitating or chronic illness is you.

Many patients find themselves embarrassed, ashamed or just downright awkward when it comes to explaining their symptoms to medical professionals. Understandable of course, but utterly unhelpful. In the early stages of living with an illness like Crohn’s Disease, the more gut-churning symptoms can be somewhat hard to stomach. [Other tum related clichés are available]. It can be an incredibly embarrassing time expressing what’s going on ‘down there’ to anyone outside of your triple-locked diary. For me, getting to grips (literally and otherwise) with my own bodily functions was a far from easy process. It can often feel as though you are forced to endure a continual series of humiliating tests of will-power as you progress towards a diagnosis.
In my relatively short history with the disease I’ve had countless men and women investigate my every crack and crevice, insert implements of mild torture into every available orifice and collect samples of my outpourings for investigation. I’ve also had some medical procedures done too.
From day one there has been a continual feeling of “well at least I’m not getting [insert unappealing procedure here]” –until I inevitably get said unappealing procedure. Repeat to infinity. Things I thought I’d never be able to tolerate, I have. Not because I am in any way ‘brave’ or fearless, in fact the complete opposite; but because I’ve had no choice. Pain in itself isn’t a choice; it’s forced upon you. So when you encounter someone who may be capable of helping to ease your suffering, you grab the chance, regardless of what unpleasantness you might have to endure to get there. If not, the you are the fool. You are causing yourself unnecessary misery and are standing in the way of your own wellbeing. And you are allowing yourself to feel at your worst. No one, I repeat NO ONE, likes having needles and cannulas inserted into their veins, or having cameras inserted into their rear ends or down their throats, no one wants to find themselves reliant on medication and pain relief to get them through the day - but what is the alternative? Unrelenting and self-imposed misery? Again, there is no choice.

Much like the emails I constantly receive asking if I want to enlarge my penis, suffering in silence is pointless. Talk to someone about your symptoms before things escalate and get over yourself. If you have to deal with something unpleasant to aid your doctor in finding the right treatment for you, then woman up and get it done. In the long run you will feel embarrassment drift away and find it replaced with nothing but pride at what you’ve endured.

 

Update: I’ve been checking my briefs for weeks and there is still no improvement on the size of my penis.   

The Future is your Crohn

I've slightly neglected my blog lately for various reasons. I've spent more time writing my regular posts for the Crohn's Forum, I've been working, I’ve been in and out of the doctors' surgery in the process of getting tested for various other potential ailments, I’ve been trying to maintain some semblance of a social life, and I've been sick. All not excuses just reasons. But mainly I've been trying to work on 'me' and how to make myself happy.
I'm pretty sure this sounds like an incredibly easy and straightforward task, but in reality it can be an extraordinarily difficult and often painful experience. 

When you take human existence back to basics, all we really need are food and water, the ability to breathe and rest. So why do we worry and stress ourselves over the most insignificant of issues?

I've come to realise I've spent much of my life 'catastrophizing' [therapist-speak for always seeing the worst case scenario and acting accordingly]. I've panicked over the smallest and most insignificant issues and that's clouded me dealing with the bigger ones. This is absolutely in no way uncommon. We are all guilty of this to varying degrees. I’ve started on my journey to fix this by making some small but incredibly positive changes in my day to day life. For starters I am trying to deal with each issue that rears its head with a level of panic and downright terror it deserves. For example, previously, upon establishing that our boiler had packed in, our oven broken down and shower ceased showering all in the one week, I may have, in lesser enlightened times thrown my proverbial toys out of the pram and had the tantrum to end all tantrum’s. (Inwardly though). I’d panic and stress and do rapid fire calculations and write lists upon lists, create pie-charts and hold focus-groups with members of the local area to work on various solutions. (The last two may or may not be exaggerated).

Now I seem to have reached a point where I am more at peace with my life and my illness. I realise I can only do one thing at a time. Women may be considered excellent multi-tasker’s, (for example I am currently writing this blog alongside checking my Facebook AND Twitter), but when it comes to piling on the pressure it’s just not necessary. And certainly isn’t good for my already shaky health. 

I of course understand that I will still feel this panic and overwhelming pressure from time to time but I think I’ve learned not to let it rule the roost. By throwing out ways of behaving or thinking that weren’t working for me I feel more positive and more excited about my future. My insides and pensioner-esque body may not look it but my future feels pretty rosy.