Showing posts with label #diagnosis #Crohns #pain. Show all posts
Showing posts with label #diagnosis #Crohns #pain. 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. 


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. 


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.