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.

My Kind of People

Chronic illness is used as such a ‘catch all’ phrase these days. It covers a myriad of illnesses, diseases and disabilities. But then couldn’t all of those words be used in the same vein? Don’t all chronic illnesses ‘disable’ us in one way or another? Make us feel ‘diseased’? 

Chronic, as it relates to illness, is defined as ‘persisting for a long time or constantly recurring’. Its meaning is clearly definable but the number and variety of conditions it covers is certainly not finite.

Health, and especially frequently poor health, naturally hits highs and lows. Sometimes those lows last for what can seem like the longest time and you struggle to see an end to them. This can be hard enough to deal with on your own, but factor in having to communicate your health issues to the outside world and you’re faced with a whole new set of complications to deal with.  Explaining the intricacies of a condition to an outsider can often be intimidating and challenging to say the least; particularly if you are new to it yourself and still learning. When we do discuss our condition with others and don’t get the response or reaction we perhaps expect, it can be quite the setback. Often living with a chronic illness can feel humiliating. It can be embarrassing, distressing and complex. Often we don’t want to talk about our condition, which is wholly our right, of course, yet sometimes our symptoms make that privilege all but impossible. If it is a visible condition it allows for comment, and that’s something we sadly can’t control.

So pulling on at that thread of uninvited comment, a certain infuriating phrase that sticks in my head, and has been said to me upwards of 168798782784240 times, (at last count anyway) is:

 “There always seems to be something wrong with you…”

This is generally said as an off the cuff, (perhaps feeble attempt at humour?) with a snide undertone. It’s often spoken with a question mark at the end of it; as though we are somehow expected to answer to it. It’s not really deserving of a question mark in my humble opinion as it’s more of a statement of fact. I’m not sure what the relevance of such a question is either, other than to remind us that we are ill, ALL THE TIME. Sadly something we are all too aware of already.  The only answer that could be given to such a bizarre poser (and I find it most effective bellowed through a megaphone) is “YES, THERE IS ALWAYS SOMETHING WRONG WITH ME: IT’S INCURABLE”. But that response only served to get me thrown out of the library and banned from the local church the last 5 times I used it.

It is phrases such as these that are upsetting to someone with a disability and/or illness for many, MANY, reasons. Let me count the ways. (7. There are 7 ways).

1.  It implies we are being untruthful about our health problems. If you have to query in a suspicious tone that expects us to answer for an incurable condition then you nail your ‘I DON’T BELIEVE YOU’ colours firmly to the mast. This funnily enough doesn’t make for a comfortable conversation to follow.

2.  It makes us feel like a nuisance. No person who even remotely cares for another person should make them feel this way. Implying we are using our condition for attention or exploiting it for our own gain is just mean at the root of it.

3.  It singles us out. We don’t want to be sick, and we certainly don’t want to be treated any differently to a ‘normal’ person. Suggesting we are seeking some end goal other than the best
possible health makes us retreat into our shells and that can be increasingly risky for those of us with already wavering mental health.

4.  It makes us feel we are appearing like a hypochondriac. Anyone with a chronic illness dislikes hypochondriacs intensely. We have to eat, sleep and think about illness every day; we don’t need to hear you give us chapter and verse on that one time in 1983 when you had the measles. Just because you perhaps aren’t used to hearing people talk honestly about an incurable condition doesn’t make it any less true when we do.

5.  It silences us from talking about our illness. This is NOT good. We need to talk about our conditions because it allows us to educate, share, unload and learn. The more we remain silent on what we are experiencing the more withdrawn we become and the more ashamed we feel.

6.  It makes us feel embarrassed and ashamed. As above: not good. Something we should never allow ourselves to feel. Chronic conditions can get such bad press; we need to be at the forefront of changing that, not being beaten down by uninformed opinions.

7.  It reminds us that THERE IS ALWAYS SOMETHING WRONG WITH US. Yes, we KNOW.

On the flip side of this ghastly and mildly insensitive coin however, when met with thoughtlessness of this degree, I often try to mentally counter these statements with any positives I can find in them. Easier said than done, especially when you are still clutching a knife to their throat, but if you take a mental (and maybe physical) step back, and look hard enough you are bound to find something.  Let’s throw the negativity over the balcony, crushing it painfully below, causing irrevocable damage, and try that now.

1. Yes there IS always something wrong with me yet I’m still here, being alive alongside you, making me better than you in so, so many ways, and that’s excluding my impressive rack. 

2.  No, nope, sorry I think that’s all I can come up with. Maybe I’m just not a very
forgiving person.

The issue with phrases like the aforementioned “There always seems to be something wrong with you…” is that, whether intended that way or not, they are simply unkind and just so unnecessary. As I’m not (at time of writing) practiced in mind control, I can’t stop people thinking things like that of course, but I can certainly voice my discomfort when they allow the words to leave their lips. Meaning if you’re going to openly say something along those lines to someone with a chronic illness then you should really be prepared for the potentially messy fallout.

What may seem an entirely innocent comment on our condition to you may come across as a not-so-subtle jibe directed at us for reasons we’ll have to retreat into paranoia to discover. You see, it’s not ‘just a joke’ when you make another human being feel essentially lesser.

Kindness is so easy. It’s often found simply in inaction. It’s effortless! You can be kind by just not saying that thing you know would be taken badly should the person it’s aimed at hear you. Just don’t say it! It’s that simple! You can be kind by taking a moment, just one precious moment, to consider the outcome
of your words. If you have an inkling that what you are about to say to another
human being may be mean or insulting then just don’t say it. NO, you won’t
receive an award for it, but you also won’t receive a black eye, so swings and
roundabouts. Think bad thoughts by all means; we ALL do that. It’s one of the silent joys in life. But in much the same way you wouldn’t follow up saying “I’ll kill him” with then committing
ACTUAL MURDER, you can think we are lazy (for example), without actually
accusing us of being so. 

Maybe just consider this: Are you the type of person who deliberately sets out to upset and offend another human being whose only crime is not acting or looking the way you want or expect them to? If you answered yes to that then I hope you find what’s missing in your life someday. 

(See how easy it is to be kind instead of wishing you dead?)

Hello, I Love You

In the early days of our relationship, when my BF and I used to argue (and we used to argue a LOT), I’d often fall down. Flat out flop unconscious. I’d pass out and he’d have to rouse me. It was in equal parts humiliating and frustrating. I didn’t want to do it – it was out of my control, it was like my body would literally shut down at the first sign of stress. This didn’t happen all the time of course, just occasionally, and he’d naturally be panicked, worried (and confused). Perhaps suspicious even; that I was somehow doing it on purpose; faking it.

I wasn’t. But I entirely understand why he might think I was. It was ‘convenient’ – a distraction from the heat of an argument. Only I’d black out, so the argument was 500miles from my mind when I came round.

The funny thing about all of this is I’m so stubborn and defensive during arguments, that fainting in the midst of it is the absolute last thing I’d want to do. As I’m sure you can appreciate, it’s hard to win an argument when you are unconscious.

Nowadays I’m older and (hopefully) wiser, and I try my utmost to discuss rather than destroy when talking with the man I love. I try not to take things personally or immaturely assume that one cross word is going to be the end of us. I try not to ‘win’ in a game where we should be equals. Thank-fully I also no longer faint when we do get into a disagreement.  

This fainting was a direct and physical reaction to stress. My body couldn’t cope with the extremes and would quite literally shut down. I didn’t know I had Crohn’s Disease back then; I just knew the way my body was reacting was far from normal.

But, as all insecure women are inclined to do, I just lost myself in my own head and logically assumed I was insane. Thank-fully I’m not insane, (diagnosis pending I’m sure) but unfortunately I do have a chronic illness. Knowing that stress is such a massive source of my physical symptoms has allowed me to attempt to manage it. Of course that’s much easier said than done.

But in amongst this assortment of symptoms and barrage of knowledge about an ever changing condition where does the other half of me fit in? The man who has to watch as I collapse in front of him, when I throw up after he’s cooked for me, when I writhe in pain in bed next to him? I feel a great deal of guilt in being ‘sick’ and in love with him. I’m too selfish to leave him of course – can you IMAGINE how often I’d collapse if I saw him with another woman?

He doesn’t want me to leave him of course, which is a great relief to both me and our mortgage provider. 

But due to one of our twosome being in a state of permanent illness, he is the one who has to see the person he loves in pain. He is the one who feels helpless and frustrated for me. He is the one who has to spend nights alone when I retire to bed ill yet again. He is the one.

I love him. And I love all the partners of women and men with chronic illness for their unyielding patience and compassion. It must be hard to maintain your own personality when everyone around you asks “How is she/he?” before “How are you?” It must be stifling when huge chunks of your conversations are about someone else. So it’s important we remind the people we love they are appreciated. It might be hard for us to tell you that when we are consumed by pain or our own misfortune, but we feel it. Patients become selfish because we are thinking about illness 99% of our day – we are sad and exasperated and don’t want to feel the way we do. But we are in there waiting for you to pull us out of the doldrums, and remind us we are still more than an illness.

We owe you the same courtesy; so please know that we appreciate you and everything you do, and often everything you don’t do; every time you don’t roll your eyes when we complain for the 50^th time in an hour, when you don’t have a tantrum when we cancel a night out, when you don’t show your frustration when you’ve cooked for us and we can’t eat it.

We see it all. We see you, and we love you. 

Ache News

Eight years ago today I was in hospital on one of my increasingly common ‘investigatory’ stays.  I was incredibly ill, confused, and afraid and certainly without the first clue what Crohn’s Disease was.

I would eventually be diagnosed with the disease approximately 2 months later, followed by my first surgery in the Jan of the following year. To say it was a trying time is to put it milder than an IBD patient’s curry.

I’d been advised I had arthritis in the early part of this same year and was barely getting to grips with that when this new pain began to strike. So loooong story short, within 12 months I found myself with two life-changing chronic illnesses, unsure of my future and facing severe surgery. 

The reason I recall this grim year is a little because it’s been on my mind lately due to feeling distinctly below par, but for the larger part because I’ve been trying to recall how I felt at that time, which let’s face it, wasn’t great. Lately there have been countless articles and ‘celebrity’ statements on IBD strewn across the internet and beyond like disused wet wipes. These articles I refer to make comment on the ways in which patients can ‘cure’ their disease, through means of juice diets, special healing crystals, ‘unconventional’ medicine, veganism, thinking positively, preaching to the Great Lord Zuuuuzo, and COMING OFF MEDICATION, amongst others. 

OK, so some of those may be slight exaggerations for comedic purposes, but in all honesty after reading some of these dumpster-worthy think pieces you’d be hard pressed to establish which ones. I’m not about to slate any one person/publication in particular as it’s not massively helpful and still directs more views towards these outlets they sorely don’t deserve.

All I will say is that it’s very important we as patients/loved ones of patients/just decent interested human beings are selective and careful in what we accept as fact where it comes to IBD, and any chronic illness for that matter. When I hark back to my own state of mind as a freshly diagnosed patient I worry so much about those men and women in the same boat as my own eight years ago. They will be encountering these same articles, (some of which have even been publicised by leading Crohn’s charities), and feeling hopeful there are simple fixes to their condition. There aren’t. IBD is a complex, incurable disease.

Now without that meaning to sound incredibly grim, sometimes we can’t always sugar-coat facts. We shouldn’t. We should never go into any life-changing event with our eyes and ears wide open. Of course I am only too well aware that being diagnosed with any illness is terrifying, whatever age you are or stage in your life you are at. When I got sick I was in a secure and loving relationship; but I still assumed my partner would leave me, because I felt almost instantaneously worthless. That is long since passed, and my attitude to my illness has changed beyond all recognition, but from time to time I still want to scream and cry with frustration that this sickness will never leave.

I don’t want to preach that patients shouldn’t have hope in times of uncertainty and fear; we all should. But we have to be careful about where we take our information from. When we are in states of frustration and vulnerability we shouldn’t have to filter our knowledge to suit – but sadly we do. 

We need to ensure we take information on our illness from reputable sources; stick to our doctors, consultants, medical experts. If you do venture further afield, then stick to articles and blogs with a good following, who focus on aspects of mental-health, relationships and ways to adapt to the illness.

The most important point to remember is if you encounter writing which advises a certain way of life/diet to ‘cure’ you, consider it an instant red flag. If it were curable you wouldn’t need to hear it from a Z-list celebrity in your spam folder. 

It's a Kind of Magic

A few days ago, a horrific attack happened in Manchester. I don’t need to describe the events again as I’m sure you have all read about it in painful detail, and really, I don’t want to; it’s so greatly unpleasant and upsetting. Our threat level in the UK is currently ‘critical’ and although I know those are cold hard facts that I know to be true, it still feels as if we are watching this all unfold in a sort of live action movie. 

It’s almost too impossible to comprehend the level of depravity and evil some people are capable of, and practically on our own doorstep. 

What does come out of these tragedies is the resolute power of the human spirit. Its always so heartening to see people go above and beyond to help others in situations such as these, where really we act without thought for occasions we could never have prepared for. The way humans act when under extreme pressure, or in abject danger is almost overwhelming in its beauty sometimes. 

When these moments happen I wonder if I am a good person. I wonder what I would do if faced with someone in pain or in a situation where I had to act now or run. Of course I would like to think should a situation such as this arise I’d do everything and anything I could to help another person, but we never quite know do we? I wonder if I could be selfless and put the needs of others before my own. Its what I’ve been brought up to believe should be the case, despite years of adulthood being advised we should 'look after number one'.

Well looking after number one hasn’t gotten us very far thus far. Presidents' aside perhaps. 

Not to say I don’t care for myself as best I can, when I can, because I do and it's important to do so. But the idea that we should put ourselves first at every available opportunity grates on me. It's a common attitude and one which serves to alienate.

There are so many people in my life I care for; I love. I can’t even bear thinking about how it would feel if one of them was taken from me suddenly and without warning. It is the definition of incomprehensible.

Therefore I think I know deep down the way I'd act if faced with sudden tragedy - with bravery. Its what I aspire to at least. 

It's easy to write off our behaviour when we aren’t called upon to be ‘heroes’. We can shrug off the responsibility or guilt at feeling helpless as we perhaps are not in a physical position to help. 'I wasn't there, what can I do?' Etc. It’s easy to do/think such a thing. We all do it – make excuses to ourselves and others as to why we can’t help. 

But we can help one another. Every day. In even the teeniest of ways. 

We can simply treat one another with kindness and without judgment. 

We can utilise patience where normally we would act with frustration. 

We can complement one another where normally we may internalise jealousy. 

We can help one another by listening and being a physical and comforting presence instead of making others feel pressured and uncomfortable. 

We can do all those things with barely any effort at all because they are all within us. 

We don’t have to save lives to make a difference to someone’s life. 

(Unless of course you are currently performing a life-saving operation then please stop reading this and continue with your important work). 

We can make someone feel great just by being kind to them. That fact alone is so simple yet so effective it genuinely reduces me to happy tears. So when things are painful and hard in any area of our lives, let’s try and reach out to one another with kindness and compassion; it won’t solve any of the worlds greater problems, but it might just make life a little happier for those of us still lucky enough to be around. 

Love always, K ❤️