Man-ILL-Festo

Manifesto

Noun;

A public declaration of policy and aims, especially one issued before an election by a political party or candidate.

Man-ILL-festo

Noun;

A public declaration of aims from a diseased person, a mishmash word I just made up which has no basis in reality.

If you know anything about me, or have read almost anything I’ve written, you’ll know that I love a pun. I’ve you’ve read my book Go Your Crohn Way, you’ll have established it contains over 5015435 puns (that’s an approximation only). Some people love the puns, some hate them. They are the marmite smeared across my pages. But as the best writers are always telling us, ‘write what you’d want to read’ and I CAN’T EVER QUENCH MY PUN-THIRST.

Anyway I mention this merely as I’ve started the blog with yet another one. Sorry pun haters but I can’t always be what you want me to be.

So, what is this ‘Manillfesto’ I speak of? Well I’ve been thinking a lot lately about what I can do ‘better’ in the way I approach and manage my illness. Of course there are a myriad of things out-with my control, (having chronic illness in the first place being the main one of those), but there are a few small but powerful ways I’ve found I can help myself be the best and happiest version of me.  

[Most of these are just sensible rules for life for everyone to be honest so feel free to follow my manillfesto policies regardless of your health status lads].

-          TALK: don’t bottle up how I am feeling when I need help/comfort/company.

This is a continual issue for those with chronic illness as we often find it less emotionally exhausting to simply whip out “I’m fine” or the like when asked how we are. This is no one’s fault; it’s just often so much easier than explaining our every gripe and symptom again and again. It’s honestly tiring enough experiencing it all without feeling the need to vocalise it. However ‘I’m fine’ doesn’t really resolve anything when it’s used inaccurately. All it serves to do is worry the person on the receiving end (who probably knows you’re not fine anyway) and stops us from getting the support we might badly need. So I’m trying to limit my use of an erroneous “I’m fine” for emergencies only (i.e. when in the midst of a colonoscopy)

-          PROACTIVELY SELF-CARE: make time to make myself feel better

Self-care doesn’t have to mean completing 45 Yoga DVD’s then downing 15 Kale smoothies. It can be something as simple as finding what makes you feel comfortable and relaxed and actively making the space in your day for it. For me I love a hot bubble bath, headphones on, candles lit, channelling my inner Barbara Cartland and coming out barely conscious and a shade of lobster not yet discovered by scientists. So I try to make time a few times a week to have my precious soak. It’s also a nice way to physically relax achy joints and let your brain slow down. But if you don’t have a bath you can do other things; read a good book, paint, draw, watch a box set, go dogging, whatever makes you feel happy.

-          STICK TO AN ADULT BEDTIME: develop a regular sleep routine

This is important for many reasons, and more of a challenge than you might think. Those of us with chronic illness often find what should be horizontal bliss more of an uphill struggle. We often find getting enough sleep difficult depending on our pain levels, nausea, bathroom issues or medications. For example when I was on steroids I slept for about 5minutes over the course of 5months. When I did sleep through the sweats I’d dream of murder then wake up wanting to carry it out. I didn’t follow through on any of the dream-murders you’ll be pleased to hear. So try and ensure you stick to a suitable bed time and get enough where you can, it gets easier over time once you get into a regular pattern. Keeping a track of your sleep patterns is also useful for tracking flares and symptoms and for assisting the police in their enquiries regarding local murders.

-          TAKE A LUNCH BREAK: everyday, no excuses

This sounds minor but it’s very important. Most days I work through my lunch, eat my desk (when I remember to eat) and am lucky if I’ve had 15mins of a ‘break’ in a full day. This stems from work pressure, and a little anxiety about how much time I might spend in the loo from one day to the next. Regardless of my bathroom habits I’m still LEGALLY entitled to a break so I should be taking it without question or guilt. This is a habit I, and many of us need to break. Getting away from the desk/phone/whatever you’re chained to also helps to clear the head for an hour. Unless you are chained to someone else if you are a bungee instructor for example then please ensure everyone is safely on ground level before making your Pot Noodle.

So, some basic but important points to remember there. Little changes go a long way; prioritise, look after numero uno and make the best of each day even when you might feel like death is coming up the rear faster than an experienced Gastroenterologist. 

Good Grief

I’ve written a little in the past about the similarities I find between coming to terms with a chronic illness diagnosis and the stages of grief. It’s been on my mind again recently for different reasons: the idea that just as grief rears its weepy head every so often so does the same feeling of loss that comes with having an incurable illness.

Lately I’ve been missing my beloved Grandmother quite a bit and recalling how I felt when she passed away.

 

*I didn’t at any point say this blog was going to be a rollercoaster of non-stop fun so get off now I’ve you’re not tall enough to come on this ride*

 

My sweet Granny Peggy died when I was in my early twenties. I was in the first flush of romance with my first ‘proper’ boyfriend and heading on a holiday. She died in hospital, I was there, thankfully, along with the rest of our close family. She was ‘ready to go’; she told me as much many times, and now that I’m older I understand why a little more; then I just couldn’t bear to hear the words. I didn’t want her to go and selfishly wouldn’t so much as contemplate the thought, choosing instead to do everything aside from putting my fingers in my ears shouting “LA LA LA” to avoid the conversation. She wasn’t being selfish; she was just tired.

 

My Gran was my salve. We lived in the flat downstairs from her for many years, the whole of my childhood in fact, and she was a safe bosom to run to whenever I felt overwhelmed, sad or just needed someone other than a parent to listen to my childish nonsense. What I always remember most about my Gran was her sense of humour, she laughed a lot and loved to hear us laugh. She loved to throw me back and give me ‘French kisses’ (her version of this was just pecking my neck until I giggled and wriggled away like a happy eel), we danced around her kitchen a lot and she let me draw on almost all of her treasured possessions. I wrote her poems and stories and she lauded them all with praise worthy of a Pulitzer.

 

So reminisce aside what does all of this have to do with Crohn’s Disease? Well the grieving I do every so often for my Grandmother feels painfully similar to the grieving I do for my life pre-Crohn’s. Right now I’m flaring and feel decidedly awful most of the time; when this happens it sends me into a flurry of anxiety. I worry about how long this will last, how it will be remedied, what adjustments I must make to my life and what it must feel to live with or be around a person such as myself struggling with keeping it all together and not finding much room for anyone or anything else. Sound familiar? Grief is all-consuming and unpredictable just like chronic illness. It strikes when you least expect it and lingers for much longer than you’d like.

 

But sometimes, you forget. Sometimes you feel good and that’s OK. It’s OK to revel in feeling happy despite loss. It’s OK to remember happy times and not feel guilt for what you could or should have done during the bad. So when you are struggling with illness (or grief) and feel lost try to remember the good; and that that good will come back around in time. Focus on what you have and not what you have lost, because sometimes that’s all we can do to get through. xo

Eat, Drink and Be Poorly

When you have a bowel disease the relationship with food can be, at the very least, a complicated one.

In my mind and in my heart I LOVE food. I love the smells, the sights, the taste of it. I love the comfort it brings, the happy memories it evokes, the new experiences it allows. But my stomach HATES it. My stomach physically despises it. Rejects it faster than a 3-legged-puppy at a dog shelter. (Which is something for the record, I would never do)

And therein lies the issue – the one place where food should find its happy, nourishing home before starting its journey into the sewage system, is stunted by an intense, repellent disgust for anything I choose to shovel into my cake-hole.

Food and the partaking in eating it, may seem initially like such a basic human need that we can often lose sight of how wonderful an aspect of life it can be. We associate often unknowingly, food with socializing, with blossoming romance, cultivating friendships, nurturing our children. It is associated with being part of something. This eats into (pardon the pun) a common issue patients with chronic illness have; feeling on the outside of things.

For me the idea of going ‘out for dinner’ is great. I love thinking ahead about what I’ll wear, scoping out the menu in advance to see what looks delicious, anticipating the great conversation I might have in a cosy environment. But then, much like a selfish lover, that thrill disappears as quickly as it comes.

I am then met with the stark reality-reminder of what might actually happen; I’ll worry about what I can wear to disguise the inventible bloating that comes after one morsel, I’ll panic over what I can eat that doesn’t contain an ingredient that will cause me pain (clue: nothing), I’ll worry about a potential lack of bathrooms or my tables’ proximity to a bathroom, and worst of all, I’ll worry about ruining the evening for my companion before the night has even begun. All this anxiety serves [can’t stop won’t stop with the food puns] to put a dampener on what should ideally be an exciting and fun prospect.

Much like any bad relationship, when you love something that causes you nothing but pain you must learn to cut all ties. Not quite as easy with food, due to that pesky aspect of needing it to stay alive.

Food is an inescapable part of life, so in order to avoid an early meet and greet with the Grim Reaper, some form of adaption must take place. We must learn to fit it into our life in a way that causes us the least mental and physical torture. No easy feat. Or should that be no easy feed?! Haha ha ha no you’re right probably not.

For me there has been no ‘diet’ I’ve found to absolve my symptoms (and believe me I’ve looked). Over time I’ve established the main foods and drinks which I know will particularly upset me, I try as much as I can to cut these out. Often IBD is so utterly unpredictable that ‘safe’ foods cause just as much discomfort as others; this is a particular gripe of mine, especially when it takes so much will power not to eat what I love.

On the whole my appetite is as elusive as a vegan at a cattle market. I generally don’t crave food: against my will I’ve conditioned my brain that ‘food = pain’ and this is a hard mentality to break out of. Don’t get me wrong I still eat and drink as much as I am able, I ensure I stay hydrated when I am unable to tolerate food and I seek advice when food is off my proverbial menu [don’t take on the pun-queen unless you want to be humiliated] for longer than I’d like.

I suppose this blog is just a reminder you are not alone in seeing food as an uphill challenge. What may seem like an unthinking aspect of the day can be a stressful and anxiety inducing experience for others. So don’t beat yourself up if you struggle to finish your plateful, just be sensible, patient with yourself and your body and take care of yourself. And if you ever see me eating soup in a steak house please don’t judge.