Showing posts with label #chronicillness. Show all posts
Showing posts with label #chronicillness. Show all posts

Saturday, 26 August 2017

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. 


Wednesday, 19 July 2017

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?)

Saturday, 8 July 2017

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 50th 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. 


Saturday, 17 June 2017

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. 


Sunday, 23 April 2017

Ch-Ch-Ch-Ch-Changes

I’ve been thinking a lot lately about how much a chronic illness can change a person. Typically this phenomenon isn’t unique to a diagnosis of illness of course; a person can ‘change’ for countless reasons. But one of the most substantial is a sudden and drastic alteration to our life. An unexpected shock. A bombshell.

Of course not all diagnoses of illness follow this ‘bombshell’ route – many of us are eventually diagnosed with something after a long and protracted period of sickness. Symptoms build and we experience all the ups and downs and confusion that goes alongside being continually ill, rather than just waking up one morning and finding ourselves ‘diseased’.

It might not seem much of a revelation to talk about a person changing due to illness. It’s not. Being told you have an illness which is incurable and/or will be a continual struggle for the remainder of your life has a huge mental and physical impact on a person.
The bright side of this process of change is that said change doesn’t have to be negative. That’s something I certainly found difficult to grasp for a long time after my own diagnosis; I focused solely on what and whom I’d lost, what I could no longer do and what this illness had done to strip away from who I used to be. It made me sad, frustrated, despondent and so, so angry.

Anger is powerful.

It can be a cause for action, a good catalyst to spur us into productive fight – we use our anger at the injustices of the world to fight back against governments, against unfair laws, against sexism, racism, bigotry of any kind. So undoubtedly anger is not always a bad thing. For someone like myself who has routinely hated confrontation I’ve tried to appreciate that anger is something that cannot (and shouldn’t) be contained forever. It has to have an outlet, and that choice of outlet should be one of our choosing which doesn’t cause damage to you, others or your own heart.

What I mean by that is I’ve been on the receiving end of anger which hasn’t been funnelled in a safe way – where it comes out as spat-out obscenities you’ll regret later, where it comes out through hasty and stupid choices, or through a clenched fist. None of these scenarios end well, and they certainly don’t lend to us being well.

Anger for me is a part of life.

I’m angry a lot and I wish I weren’t. I have a lot not to be angry about – I have a job I enjoy, I get to write, I have a loving family and friends, and I have a partner who without whom I’d surely turn to dust.

But I am angry because I have a chronic illness that causes me to spend my life in pain. I have learned (as best as anyone can) to live and adapt to it, but my condition is ever changing and unpredictable. I’m angry because I am someone who now struggles massively with anxiety and suffers from depression. That may all have come to my door with or without Crohn’s, but nevertheless it’s here and it’s the ‘thing’ I’m angry at.

I don’t think I’ll ever stop feeling some form of anger at being ‘sick’, but like every aspect of this illness what matters now is how I cope with it. How I choose to act and how I live despite it. I hope that that is without bitterness and resentment, because as much as I wish I wasn’t a permanent patient, I am grateful for whom I have ‘changed’ into throughout my sickly-life.

My heart is full of love and lust for life. I want to live life to the full and I get angry and frustrated when it feels like that life is being stunted or shortened. But as I can’t use my anger to paint banners and march to Parliament to rid myself (and all of you) of this illness, I can use it to remind myself that simply feeling it means I’m alive. If that isn’t something to fight for I don’t know what is.


Friday, 31 March 2017

A Little Bump and Kind


I don’t have daughters. I don’t have children at all for that matter. I have a huge dog, a cat and am soon to have another little kitten brought into our fur-filled household. All of this aside, I do have friends with beautiful babies who are blossoming into incredible little people before my eyes. I don’t doubt that perhaps one day I’ll desire a family of my own; I’m in a committed long term relationship and it’s the ‘done thing’ after all; but for now I’m happy as I am. We’re happy as we are. If that changes, then so be it, but for now; my womb my business.

It is odd the interest in your reproductive organs that grows as we age. I haven’t been ‘blessed’ with a child. I haven’t ‘realised’ it’s what I want yet. I’ll ‘never know until I do it’. It’s common to be left feeling patronised and like a borderline oddity when everyone around you seems to understand what you want and need better than you do.

Childless women are just that for a myriad of different reasons. Some of us are not in secure relationships, some of us are unable to conceive, some of our partners have issues with fertility, and some of us simply don’t want to have a child. I know that is an alien concept to so, so many women. I know that from 99% of the conversations I have with mothers. Thank-fully, my own close friends who have families are much more accepting of what I choose to do with my vagina, and that’s great. They understand that children are not for everyone and that many of us can still (incredibly) lead happy and fulfilled lives without disrupting our sleep patterns and tearing our genitals to shreds.

That said I do feel a strange kinship with my friends who have children. Although it’s not necessarily something I want for my own future, the love I feel for their spawn often takes me by surprise. It helps me understand the unconditional nature of a mothers love in a small way.

I feel the same pull from the young women who message me about their illness. Some to talk about a diagnosis or some just to let me know they appreciate having someone else speak up about IBD/mental health. I feel a responsibility to the girls and young women who follow my blog to be respectful of their choices. Their fears are universal and have been felt by all of us to some degree. I don’t have a ‘fear’ of starting a family I should clarify; I just don’t want to. That doesn’t mean I don’t deserve the same respect as a mother receives. My choices shouldn’t be dismissed or belittled for not conforming to some sort of perceived ideal, and this serves to remind me how important it is that we, as adult women; aunts, friends, mothers; listen and respect the choices of our ‘daughters’.

When we talk to one another we should try harder to listen, truly listen, to what is said (and often what is unsaid) before judging. We all do it, I’m not claiming to be as pure as the driven snow here, but I do think it’s now more important than ever we help young women to grow accepting of themselves and one another. Life is hard and growing up even harder, throw into the mix the possibility of a chronic/mental illness and it can be difficult to see past the next few hours within the day let alone make choices that will affect the rest of our lives. 

So my ‘motherly’ advice (from a certified non-mother) is to simply be kind to your kind.

Today is National Kindness Day (apparently), so what better day to start! xo


Thursday, 2 March 2017

Nerve Agent


I’ve always been shy.

It took me a good few weeks to stop weeping for my Mum aged 5 starting school. I would go beetroot-faced when asked a question in front of the class aged 10, and I’d laugh nervously like a borderline lunatic when a boy so much as looked at me, aged 15.

 

Most of that has dissipated these days, thankfully. Although I do still cling onto my Mum’s foot every time she attempts to leave my house, but like the majority of us, I’m a work in progress.

 

Those childhood nerves and inhibitions may have subsided gradually as I’ve aged and been opened up to more experiences and seen a little more of the world, but they seem to have been replaced with something almost even more intrusive;

 

Anxiety.

 

This wasn’t something I was bothered by to a massive degree ‘pre-Crohn’s’. But it’s something I now often struggle to get a handle on. Unlike my Mothers’ ankle. It certainly wasn’t something I’d have considered to be an ‘issue’ either until I realised it was impacting my own life.

 

There is a big difference from saying you are an ‘anxious person’ to actually trying to make a dent in coping with it.

My anxiety manifests itself in many ways:

 

  • I’ll overthink anything and everything.
  • I’ll work myself up into a frenzy about the ‘what if’s’ of any given situation.
  • I’ll put off doing things through nerves.
  • I’ll stare at the phone until it stops ringing.
  • I’ll talk and babble too much to fill what I’ve decided is an ‘awkward’ silence.

 

Anxiety is a common issue with those of us with chronic illness because we spend a lot of our time thinking about ‘it’. We have a lot of factors to… factor in to our life alongside the normal day to day activities that we all undertake. Whether the issue is with mobility, pain, bathroom worries or mental health issues; we all have our own fears and apprehensions surrounding our illness.

 

Of course getting stuck in our own heads is often dangerous and isolating, so step one in overcoming the worst of this is really in talking about our worries. When we do this we often find they are sorely unfounded and based on nothing more than our overactive imaginations. Not always, but often. When we decide how someone is feeling/thinking about us, we also insult them, and eliminate the chance of them proving us wrong. We push people away through using our own fears as a barrier. Look, I don’t have the answers on how to cope with this, I just want to share with you that you’re not alone in feeling like an insane person from time to time!

 

What works for me may not work for you, but talking is really important. Don’t be afraid to admit you are scared and nervous and that its overwhelming you. It so much more common than you think. People who love you and/or doctors can help to give you clarity on your feelings. Stop beating yourself up for something that is simply a factor of an ongoing illness. It’s not shameful to admit you are mentally struggling; quite the opposite in fact.

 

So the next time someone from Accounts doesn’t say ‘hi’ back to you in the morning at work, maybe don’t spend all day wondering what horrific atrocity you’ve committed against them and accept that maybe they just didn’t hear you.

 

That is the case isn’t it Linda? You just didn’t hear me? LINDA…?!?




Friday, 24 February 2017

Diseasey Peasy


I receive quite a lot of messages and emails from young people who have recently been diagnosed with IBD. It makes me happy and sad in equal measure; happy that they reaching out to talk to someone about their worries (albeit a decidedly unqualified person like me), and sad because they are struggling with something incredibly distressing on top of all the usual, more common yet challenging aspects of ‘growing up’. Some of them are just looking for reassurance and advice on how best to live with a chronic illness; some of them don’t want to live at all. 

 

I do of course reply to these messages, as quickly as I can and with as much information as I can, but I often feel at a loss as to what to say to soothe a young man or woman who’s experiences perhaps mirror my own fears from several years earlier. I try to think about what I wanted to hear when I was diagnosed: what might have made the whole thing a little less scary, and I hit a frustrating brick wall.

 

I was lucky myself in the sense that I was (officially) diagnosed when I was in my mid-twenties. I certainly didn’t feel lucky of course; I was heartbroken, confused and devastated. I imagine it feels that way irrespective of your age mind you, we all have different tolerances and being told you are never getting better stings regardless of what stage in your life you are at.

 

So I suppose what I’m clumsily trying to express is that I feel at a loss at times to help those who are experiencing what I have. What I am.

 

Then I try to take a breath and remember that all I wanted to hear when I was first sick was that life would go on. I still do. Don’t get me wrong – I undoubtedly would not have thanked anyone for spouting that at me at the time of my diagnosis; I didn’t want life to go on if I’d have to carry this disease with me for the remainder of it. I didn’t believe it and I couldn’t accept it. But as I’ve grown alongside my illness (I’m now in my mid-thirties), I’ve found my outlook has changed along with my priorities. All I care about now is my own happiness and that of those around me. My illness is still a huge part of my life and always will be, one that can consume me from time to time, but those moments pass. Chronic illness is a slippery path whereby sometimes we wobble a little, sometimes we can’t get on an even keel, but nevertheless we never lie down to it; we don’t have that luxury.

 

But the truth is, our life does go on. We are incredibly lucky in that sense. We will have to make adaptions to those lives to make room for this illness, we don’t like that but it’s easier than trying to bat it away like a pesky wasp at a jam sandwich. We have to accept it and stop fighting its basic existence. Denial is fruitless and prolongs the period of time it takes to come to terms with having an incurable illness.

 

Don’t get me wrong here though, I’m not implying ANY of this is easy; sometimes I even have a little cry myself when I feel low – I often feel I’m back to square one with this and the frustration of that can be overwhelming. But if I’ve learnt anything since I was diagnosed it’s the importance of talking. Talk to your parents, your friends, your nurse, talk to me! Don’t push yourself into it – there’s no shame in that either; the last thing I wanted to do at first was talk about this with anyone, but eventually that changed and it became more of a comfort and camaraderie than a fear.

 

So please remember that you are not alone.

 

Things will get easier and you will learn to live with this. Like every challenge in life it feels monumental at first, but the more steps you take towards dealing with it the easier it becomes. I’m not in any way saying I love having a bowel disease – I hate it – but it has also taught me boundless things about my own body, its shown me a strength I never thought I could find and its brought me closer to the people I love. It’s made me value my own life, and allowed me an opportunity to help me help you to value yours.

 

So if you take anything from my ramblings let it be this: disease is hard and scary and intimidating, but your life is worth the challenge.



Tuesday, 21 February 2017

Let Them Eat Cake!


My blog turned 6 last week!

 

I know what you are thinking; blogs can’t have birthdays, they are not sentient beings, so why waste decent cake? I hear you! But this particular ‘birthday’ has felt worthy of celebration mainly because I’ve sadly neglected my blog lately. I’ve had a new job to focus on and the completion of a new book I’ve been working on since my first came out last year. Also I’ve been ill. Not front page news that last one I grant you; some might even say it’s what this blog is all about, and yes I appreciate that smarty-pants. But being ‘sick’ can often feel like a full time job in itself and it overwhelms anything and everything. It interferes in work, relationships, your state of mind. It demands attention.

 

But this blog was started as an outlet for me to express my fears, experiences and abject terror at having a chronic illness, and while it still is such a place to allow me to vent or share, it’s become somewhat more of a safe place where I can come to talk openly and without judgement (although my inbox may say otherwise). It has granted me the opportunity to help others simply but sharing my life with you and making cat jokes. So rather than spend this special occasion focusing on the more negative aspects of my illness I thought I’d celebrate this 6th birthday with a little bit about all the good stuff that’s happened in my life since this blog was ‘born’.

 

So here are my 6 happy things:

 

  1. I have written and had published a book on Crohn’s Disease which is doing well and getting great feedback.
  2. I have focused more on nurturing my relationships and this has been wonderful and reaped countless rewards. (No I’m not talking about the bedroom, get your heads out of the gutter).
  3. Although my health has been a consistent challenge and treatments have failed I haven’t had any further surgery which I take as a big win. *touches all of the wood*
  4. We got a giant dog! Who makes me incredibly happy, cares for me and makes me and laugh and cry at his cuteness every day.
  5. I changed jobs and it’s been an incredible boost to my mental health and stress levels.
  6. My amazing friend Lyndsay gave me a bike! So now I cycle to said new job and have much more time with my family (and longer lie ins) while getting a little daily exercise. Also my thighs could now quite easily crush a grown man’s head.

 

So it’s not been all bad since Crohnological Order began. I’m happy and alive and that’s a great start. I’ve been granted some wonderful opportunities since writing this diseased drivel and I want to continue to use what little voice I have to help others. SO thanks for sticking with me for the last 6 years and hopefully beyond! I love you! xox


Sunday, 15 January 2017

OMG!! SEE ME TOTALLY NAKED IN THIS LEAKED SEX TAPE!!!

OK now that I've got your attention, I'd like to take a few minutes to talk to you about these so called 'click-bait' articles with eye-catching and inevitably misleading titles (of which the above is); and in particular how they can negatively impact on our health.

Now as you may have established by this point, the chances of you seeing me ‘TOTALLY NAKED’ and in a ‘SEX TAPE!!!’ are slim to none. I’m sorry to be the bearer of bad news so early in the blog but you’re the one who clicked, so more fool you! Besides, who even uses the word 'tape' anymore? Get with the program losers! What is this, 1992?!

Anyway, regardless of whether you clicked this link because there was a vain hope of seeing my melons, or because you were just intrigued as to whether I’d finally lost my mind; now that we are all here, let’s get to the matter in hand. Despite the fact that this title is undoubtedly false and deceptive it did its job in getting you to click on the preceding link, maybe to even to hang around and read the whole article. So in that sense it has been an effective tool. Effective yes, yet undoubtedly frustrating too, (in particular for those of you still vainly holding out for a peep at my wares).

NOT HAPPENING PLEASE MOVE ON WITH YOUR LIVES.

But while we can all laugh at the absurdity of this particular title, what of those articles with similarly attention grabbing titles, aimed for the most part at the more vulnerable and desperate among us? Those of us who are perhaps crying out for a 'solution', whatever it may be. Well, here we find my pet hate: the ‘health’ click-bait. In case any of you are still in the dark about what I mean by ‘click-bait’ please see this definition:

“(on the Internet) content whose main purpose is to attract attention and encourage visitors to click on a link to a particular web page”



These are those articles that draw us sickly individuals in with promised 'cures' and quick fixes, advice on someone’s ‘miracle cure’ or how someone else ‘cured themselves with tree bark’ or some other such nonsense. Once clicked on, these articles (usually a mere few barely decipherable sentences) inevitably lead us down the rabbit hole of terrible advertising and ineligible text, over-priced products and bad advertising. Maybe they will follow on where the article left off and attempt to sell us a product that promises to cure all of our ails. The one certainty is that they are definite time-wasters. They offer inane hope to those of us who perhaps have none, they lie and explain our conditions in a vague and unintelligible way, they grope in the dark for anything they can grab on to in order to gain an audiences favour. Just like your Mum.

In my humble opinion, any article that struggles of CORRECTLY SPELL the name of the condition it writes about, promises a ‘cure’ it can never prove, admonishes patients for a perceived lack of effort, undermines our suffering, or simply insults us in a roundabout way, is GARBAGE.

So my own advice would be to avoid these headlines and their preceding hogwash ‘journalism’ unless they come from a reputable source (or a QUALIFIED DOCTOR). And if you find yourself drawn in by an article promising you the world where your health is concerned (yes EVEN if it contains the promise of a bare naked chest), pull out immediately. As the Actress said to the Bishop. 


Saturday, 31 December 2016

HAPPY NEW REAR!


It’s time for one of those 'end of year' posts we bloggers love to write (and you dread to read)!

And what a year it's been.

 

HORRIFIC. 

 

I won’t even begin to go into the changes we’ve undergone with Brexit here and Trump over there, because I don’t want to projectile vomit all over the screen.

 

We've played a seemingly endless game of 'Who's Dead Today?' this year with almost everyone in the public-eye quaking in their boots at the mere sniff of a cough that they'll be 'next'. Of course for me the hardest of these 'celebrity' deaths was my beloved David Bowie. I genuinely sobbed when the news hit and felt the same grief I would for a loved one. It seemed so utterly confusing that I would mourn someone I've never met, but the depth of feeling I had for his music (and the shock of his unexpected death through illness) hit me more than I could have expected. I suppose with a sudden and unanticipated death such as his, it hit a lot of his fans in a similarly painful way. So many other deaths followed, that this year switching on the breakfast news each morning seemed like opening the world’s
most depressing advent calendar.

 



The next big setback in my year came when our beloved cat passed away. We knew he was poorly and would in time be heading to that giant Cat Scratcher in the sky, but his death was very sudden and still came as a big and heart-breaking shock. Our beautiful boy was so special and such an intrinsic part of our little family that his loss is still felt around the house. The loss of a pet can be surprisingly heart-breaking: when they are such a huge part of the family it takes a while to adjust to him not being home. 



 

But for me certainly 2016 has not been all bad. And really as we know, it’s all about ME.

 

This year saw me quit my job of over 10 years to take on a new challenge closer to home and allow me more time for writing and working on book 2! Scary but incredibly exhilarating, and definitely the right decision.

 

This leads us on neatly to the next big emotional event in my 2016: The publication of my first book! GO YOUR CROHN WAY came out in May and was a whirlwind of anxiety and joy. It was a surprisingly emotional time for me for many reasons; because it was a reassurance I wasn't a terrible writer, because it was coming from a place where I could hopefully help others in a wider way, and because it was a painful part of my life being transformed into something positive. We had a wonderful book launch (The Crohn Way Soiree) which was one of the best night's of my life. Excluding that time a taxi appeared just as the heel on my stiletto broke. I've had such good feedback from patients and their families alike that's it's made my heart swell. It’s been well received so far, I’ve been on radio, in papers and a local MP has even put forward a motion to have it mentioned in Scottish Parliament! This is about the only level of fame I could tolerate without exploding into a ball of anxiety and feeling the need to wear makeup everyday/brush my mane so I’m pretty happy with that :)



 

I’m currently working on book two and it all seems pretty exciting and that I’ve found where I want to be in life which is incredibly comforting.

 

The year ended for me on a pretty low note as I’ve been advised my treatment is no longer effective and my body is fighting against it (again). So back to the diseased drawing board. I spent most of the lead up to Christmas in hospital and it was extremely disheartening, just the idea of being properly ‘sick’ again. Tests and procedures and hospital food; none of us want it. But I was lucky enough to get home for Christmas. Now just awaiting more of the same, scopes and tests until we know what may work for me where others haven’t. I’m trying my best to think positive about this as I know I’ll get there, just stuck in limbo at the minute.

 

2017 will hopefully be healthier for us all.

 

For me, this year despite many, MANY setbacks, I have achieved something I never thought I would, I’ve made a brave decision or two, I’m in love and loved and HAPPY. Good health will follow, and if not, I’ve got all the love I need to help me through it.

 

Your support, however small or large this year has meant the world to me!

I love you!

Happy New Year everyone! xox