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

Thursday, 17 August 2017

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


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. 


Saturday, 29 April 2017

Ari You Gonna Be My Girl?

In a few days my friend Ari is coming all the way from Argentina to holiday in Scotland (and see me). She’ll be staying with my partner and I for lots of the trip and we will even go away on a little mini holiday of our own in the middle. This will be the first time we’ve ‘met’ face to face after talking on the internet for maybe 3 or 4 years.

We chat EVERYDAY.

That’s rare in this day and age (and certainly for me) probably because I don’t feel that interesting or engaging most of the time. Yet this friendship is easy, fun and loving. It puts me at ease and there are no judgements on either side. She just makes me laugh and feel precious and our bond feels effortless. I can’t wait to meet my darling Ari in real life (and prove to everyone she isn’t a 45 year old man from Croydon).

Although I feel I know Ari very well and am not in any way nervous about meeting her, I’ve been thinking about how bold a move it is for her to fly halfway across the world for the sake of a friendship (and vegetarian haggis obvs). Friendships often get harder to make as we age so that’s one of many reasons why this one is so important to me. It came into my life at just the right time and now feels like it (she) has always been there.

I’m in my 30’s now.

So as these things do, many of my childhood and teenage friendships have dissipated over time; wrapped themselves up in quite a neat and healthy bow. Without meaning to sound harsh, some friendships just serve a purpose at a certain time and struggle to survive beyond their particular environment. 
Work relationships for example: once a close colleague leaves, or you move on it can be a tricky tightrope to walk in terms of whether or not you should maintain what may essentially have been kinship over a water-cooler and not much more. Thank-fully I’ve made a few AMAZING friends through work in my own life and I can’t see those relationships ever fading. I think the feeling is mutual on both sides and that’s comforting (and pressure free).

As most people with chronic illness will understand, maintaining relationships can be hard, and often disappointing. When people we love prove themselves to be flaky or uninterested in what is essentially a massive part of our lives it can be a bitter pill to swallow. And we already have enough of them to ingest.

Friends who love us will make an attempt to understand what we are going through, they will check in with us regularly and make us laugh, or simply give us a shoulder to cry on when we need it. With us returning the favour of course. Friendships when you are sick should still be a two-way street; we don’t become patients rather than people, but they may just need some adaption.


When anything changes in life we try our best to accept, adapt and move on, and the same goes for pals. We become adaptable. Adaptipals if you will. You won’t? No problem, I still love you, pals. xo


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


Thursday, 31 December 2015

Reelin' In The Rears

It’s that time of the year when we begin to reflect on the past 12 months/drink too much/worry about not having anyone to kiss at midnight/contemplate suicide. Depending on your viewpoint, this ‘reflection’ can involve getting drunk and internally screaming THANK GOD THAT’S OVER (usually my favoured option), or perhaps fondly remembering what has gone by with affection and gratitude.

For me, this year has been difficult, stressful, painful, and WONDERFUL.

2015 began, as most years do, in January with me having been nominated for 4 WEGO Health Awards. I made Finalist in two categories! Beyond my wildest expectations and an honour to be listed among some amazing health advocates!  It was also a joy to see some of my favourite IBD writers take prizes. Very proud to be amongst others raising awareness on such a grand scale.
This past 2months I’ve been nominated in the UK Blog Awards, and for Healthline’s Best Health Blog of 2015. A thrill and a lovely end to a busy year! I don’t expect to win either of these as they are fiercely fought contests, but again I am delighted to be listed amongst such talented individuals!

In May I started my Infliximab treatment. This is the first biologic treatment I have been on, so naturally I was very apprehensive. After bombarding my IBD nurses/consultants with a million and one questions I braved my first infusion. I always prefer to be independent around my health but this time I must admit I was afraid and felt alone. However the treatment has proven successful and is keeping any active disease at bay. I am still floored from time to time and struggle in the weeks leading up to my infusions but so far so good. I understand this intestinal bliss won’t last forever, but I am enjoying it while it does nevertheless.

In August my lovely Mum turned 70! We celebrated with a lovely lunch together with my brothers. She is as vibrant and full of life as she was when I was a child and I am proud to call myself her my friend as well as her daughter.

In September my beau and I celebrated 10years together. A decade with the man I love. By no means has our relationship been a smooth ride, but who can say spending 10 years with someone ever is? Love changes and grows as you get older and I adore living through that with him. 

In October, after a long hiatus due to fear of rejection, I finally started to receive responses from my having sent away my finished manuscript. My book on my life with Crohn’s Disease  was accepted by 3 publishers and I’ve signed with a fabulous and friendly publishing house who are planning to release my book in Summer 2016! I am still in shock to be honest. Every step of the process is more intense and exciting than the last and I am relishing being such a close part of the books’ development. So thrilled for you all to read it – my life and bowels are in that book, and messy as that may sound, I hope that helps even one of you in dealing with your own defunct insides.

In late December, we added a new addition to our growing menagerie (of two humans and two cats) – a massive dawg. His name is Lucky and he’s had a tough old life for his mere 3 years. He’s the softest and sweetest dog on the planet and that’s coming from a well-known cat lady. We are going to give him a great future in a happy, loving home.

So as I head into 2016 I have lots to look forward to and lots to keep me pushing forward. Thanks to all of you for your continued support and love, and know that it’s reciprocated fully. But please, one more restraining order and I’ll be arrested. Happy and healthy New Year to you all, I love you! xox


Saturday, 24 October 2015

Cistern of Mercy

Whilst having a cupboard clear out, amongst old gig tickets from cringe-worthy bands I pretended to like to impress boys, countless, countless love letters, and 20odd years’ worth of birthday cards, I found my old diaries. I’ve kept a diary since I was around 14 years old. It’s been a confidante through my teens, a comfort through my twenties and a cause of major hilarity and heartbreak years later.

At the end of a year I tend to hide my diary away. This tradition probably stems from the happiness at the closure of a perhaps below par 12months, and the nervous excitement of starting a new one. But today as I came across my own past written in scrawled biro (with notable devotion given to CAPS LOCK), I lingered on 2010, and the year in which I learnt I first had Arthritis, followed swiftly by Crohn’s Disease.

As I fingered through ‘myself’, err my words that is; I found myself crying and cringing in almost equal measure.  The first few months of the year were spent in compete denial there was anything wrong with me, despite all the evidence pointing otherwise. As I noted hospital visits, pain and toilet peculiarities, it was all done with a matter-of-fact attitude that after a while whatever it was would be fine.

‘Fine’ features a lot in 2010.

Reading all of this back now makes me feel almost embarrassed for my 26 year old self. She had NO IDEA what was to come, and no idea how to cope with any of it.

What struck me most in the pre-Crohn’s diagnosis days was how tired I was all the time. I don’t particularly remember that part when I look back now, (although that’s understandable as there was a lot more gruesome stuff to come), but I think it’s important to focus on it, as now I realise what a clear sign exhaustion is that something is awry. I feel quite the fool reading of my utter naivety now that I’m decidedly more versed in the workings of my own body, but back then I was a dunce in the deduction of illness. 
Now I have an encyclopaedic knowledge of my own back passage of course, and not many 25 year olds' can be expected to have that, unless they are in extraordinarily specific and somewhat questionable professions…so I won’t beat myself up too much.

Anyway, one quote from my diary, which particularly upset me, and struck a chord even today, was in relation to my…relationship. I spoke to my leather-bound confidante on my permanent exhaustion and nausea, and how it left me cold in getting amorous with my beloved:

‘I couldn’t possibly try to explain to him why I don’t want to be with him and I think that’s what’s going to end up being the death of us, just not being able to explain the way I feel about things’

This made me cry a little because it reminded me how deeply the disease was affecting every aspect of my life, even before it had even been officially named. Already I was unable to communicate my feelings to the man I loved because I was incapable of communicating them to myself. I was completely and utterly alone. Trapped in my own failing body.

I feel sad for my former self because I want to scream at her to go back to the hospital! See the doctor! Don’t listen to that colleague! But as we haven’t quite mastered time travel yet, I just have to make do with saying the same to any of you who need to hear it.

It wasn’t ‘the death of us’ by the way, nearly the death of me, but I thankfully dodged that particular bullet too. I suppose the reason I’m relaying this afternoon of musings from my memoirs; to remind you that it’s important to trust your gut. (Even if it’s your gut, that’s letting you down). If you think something is wrong then push to get it clarified. Talk to the people you love – if you don’t understand what’s happening to you and can’t find the words then just tell them that.


If all else fails, write it down. Just don’t wait 5years to read it again.