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

 

Sunday, 11 December 2016

Holy Moly

A few recent conversations with people I love and admire (and who also happen to be religious) got me thinking about faith and living with chronic illness. I should begin by mentioning that I am not religious myself. At all. I was raised Catholic, and I do still hold on to certain elements of my religious upbringing. Such as trying to treat people with kindness, treating those as you'd like to be treated yourself, and valuing and nurturing love. These are all aspects of my character I can attribute to both my wonderful parents and the bleeding into my life of Catholicism. If Jesus will pardon the pun.

But recently I've pondered how different my handling of my disease may have been had I continued down the path of that of a practicing Catholic. Because I don't feel a belief in any 'higher power' or am drawn to any form of organised religion, I wonder what that must feel like in comparison to my current lifestyle of taking each day as it comes. I suppose the element of my religious past I’ve held onto most would be feeling guilty for absolutely everything. This includes eating a delicious and/or expensive meal – I’ll feel guilty about the indulgence and the pain it’ll undoubtedly cause my purse and intestines. That’s fine I guess, a little guilt never hurt anyone and it certainly puts a halt on me doing anything that might actually warrant 25 Hail Mary’s and a Holy Communion afterwards.
I don’t want any of this to sound patronising or disrespectful in any way. I would never question why people I love/abject strangers feel a need or calling towards religion. It’s a choice; just not one I’d choose. In much the same way you wouldn’t question my undying love of Jon Hamm. DO NOT QUESTION MY UNDYING LOVE OF JON HAMM.

I blindly put my ‘faith’ in doctors. I have to. I don’t believe in a specific Higher Power, I don’t have an alternative. That’s my choice, of course. But for me it’s all I have. I’m often secretly envious of those with a strong faith in God/Aloe Vera/whatever. Not because I feel at a loss without something to believe in, but because I wonder how different life must be for those patients who do. Does having a deity of some sort to reach out to make pain and suffering easier to tolerate? I imagine it is a comfort; at least that’s what I’m led to believe from those around me. Any form of comfort with a chronic illness is a blessing. I take my comfort from my loved ones. I ‘believe’ in them, and in their ability to soothe my anxious mind. They are tangible, and real, and around. They forgive my occasional bad behaviour and understand it comes from pain and anxiety, they don’t expect a penance for it, and I return the understanding just as wholly.

With a chronic illness, and especially in talking so openly and publicly about it as I do, patients are often subjected to a seemingly endless ream of ‘miracle’ cures. I have a tendency to pooh-pooh these ‘cures’ in much the same way I do religion. Maybe without even realising how that may appear to those with a strong faith. I’m well aware that rubbing my every orifice with Aloe Vera may not necessarily go and in hand with attending mass. (Although, I’m still stoically of the belief that neither would ‘cure’ me). There is a difference e between a spam email trying to sell me dodgy diet pills and a caring friend/family member offering me comfort by sharing a belief they hold dear. I need to see that more often perhaps, instead of being so overtly dismissive.

I don’t feel I’m missing out on anything because I don’t believe in God, I just don’t ‘get it’. But then  I don’t have to, just like you are totally allowed to believe in whatever the Hell you want too. If Jesus will pardon the pun. Again...


Monday, 21 November 2016

Be There or Be Flare

I was talking to my wonderful Mum today about family, and poor health, and flapper dresses amongst other things. But rather than dedicate my blog to the beauty of a fringed frock, I should probably focus my attentions on the former.
Family and the opinions of my family and friends have always been very important to me. They have been the ones to whom I would turn when I had a huge decision to make, or when I’ve made the wrong decision and need a shoulder to cry on or a cave to retreat into. Of course the older we get the more decisions we must make on our own, often without input (and the harder these become). The love and support of family and friends is generally what gives us the confidence to make these decisions and have the confidence in our own choices.

Some of these choices are hard. Possibly none more so than when we are in poor health and must make decisions that may literally be life or death. When I was advised I should have life-threatening surgery, the consequences of such an undertaking didn’t factor into my decision. Maybe they should have; but if I were to consider I might’ve left my mother without a daughter, I wouldn’t have been able to go under the knife at all.

You see my health affects the people I love. I wish that weren’t true but it is. The same way that any of us being ill affects people who love us; the decisions I make about my health are essentially mine, but will affect the lives of others regardless.

Were I a ‘healthy’ woman, I wouldn’t have to worry a lot of things. I wouldn’t have to worry that I was causing stress and upset to those who love me. I wouldn’t have to worry that I am unable to provide for my little family and that my partner may be forced to pick up the slack. I wouldn’t have to worry that I’m making others unhappy because I can’t do this, that, or the next thing.
I wouldn’t have to worry about living and I could focus on doing just that. But I do, and I have to face that day in day out – as do you. We all make the best of the hand we’ve been dealt and I no longer wallow in the occasional misery of my situation as I once did. I suppose this is just a meandering post really, but at the heart of it it’s a reminder that the people who love us are SO important to our recovery and general health-maintenance. Support and love is a boon to us and although it may often seem we take you for granted, we appreciate you more than you can know.


Often we just have a lot of worry spinning around in our heads and we forget to say thanks for being there. So I think I speak for every ‘sick’ person when I say THANKS FOR BEING THERE xo


Tuesday, 1 November 2016

#HAWMC - Day 1

It’s the first day of this year’s WEGO Health Writing Challenge (#HAWMC)! I wasn’t too keen on taking part this year as I’m working on a new book alongside my full time ‘proper’ job and have been feeling physically lower than a worms bra strap. But I figured it might be a good way to keep the writing momentum going as well as getting some much needed inspiration from my fellow health writers taking part!
So anyways todays writing prompt is as follows: 

Let’s get to know one another! What drives you to write about your health? What do you want other activists to know about your condition and activism?

Well if you are reading this chances are you already know a little bit about me and my writing (HI MUM), but if not then allow me to inform you of what you have SORELY missed. I live with several chronic conditions, the most prevalent being Crohn’s Disease. I was diagnosed with arthritis age 25 then Crohn’s shortly after – since then I’ve developed chronic migraines, nerve damage,  Gilbert syndrome, anaemia, low blood pressure, anxiety etc etc to infinity.

I started blogging about my experiences of life with Crohn’s Disease in 2011 shortly after my first surgery. Since then I’ve been nominated for/been finalist in several blog awards, and have had my first book based loosely on my blog published in May of this year! (it's called Go Your Crohn Way and availability from all good retailers FYI) ;) 

But coming back to the prompt: what I’d ideally like others to take from my writing would be a feeling of comfort, camaraderie and a decent laugh every now and then. I’ve always written in the hope that I can help educate and inform people on how it feels (physically and mentally) to live with incurable illness. I want to remind patients and their families it’s possible to thrive despite a chronic condition and not just ‘survive’. My drive to keep writing comes from hearing and seeing others stories, and just how difficult they find adapting to illness. There is always, ALWAYS someone who needs a little kindness. Incurable illness never ends so I keep writing for myself and for others in the hope some of that kindness rubs off. Pass it on, it feels great! X


Sunday, 25 September 2016

By The Book

I haven’t been blogging as regularly as I might be lately as my writing time is occupied writing another book. I’m really excited about this one and putting much more pressure on myself to make it brilliant and funny and genuine.

The first time round I had nothing to lose in writing a book – I wanted to do it to achieve a dream and to help people come to terms with an IBD diagnosis or just to give long term Crohn’s patients maybe something to smile at. I took my time in approaching any publishers because I genuinely didn’t think anyone would look twice at it, and to be totally honest I was afraid of having to face the knock-backs! But it turns out I didn’t receive any of those and the publisher I went with has been just brilliant to work with.
Getting a book out into the world with no knowledge of the industry, marketing or public speaking is no easy task so I’m proud of myself for all the work I put in to making it happen. Obviously my loved ones played a big part in that too but I’ve already thanked them enough privately to restraining order proportions.

So now I am working on book two and it’s strangely even scarier than the first time. What if no one wants me this time? What if I’m a one hit wonder? What if I hate every word I’ve written? (the 3rd one swims about in my head EVERYTIME I sit down to write).  

But that’s where I am with that: trying to make something readable and enjoyable and HELPFUL and consistently filled with self-doubt. But I guess that just makes me an author. If you’d like to be first to know any book news and aren’t my Mum or lover then you can sign up to my mailing list if you’d like! Click on this helpful link -

http://kathfantastic.weebly.com/go-your-crohn-way.html

I'm also thrilled to have been nominated again this year in the WEGO Health Activist Awards! I'm up for both Hilarious Health Activist and Best in Show: Blog. Thanks to everyone who nominated me! If you want to cast your vote by way of an 'endorsement' you can do so to the right of this post or on my website. Thanks! 

http://kathfantastic.weebly.com/crohnological-order.html

Health wise things aren’t too great at the minute, I’ve been pretty floored with a nasty sinus infection that I can’t seem to shake. My immune system is so low that the minute I start to improve someone just has to sneeze within 20 miles of me and I’m flattened again. My partner isn’t loving having to sleep with Darth Vader, but we all have our crosses to bear. Infliximab is still going well, so far so good, so I’m counting the days to next week when they pump me with more of the good stuff. And also Infliximab.  


But enough about me, how are YOU? 



Wednesday, 21 September 2016

Lazy Crohn's

Please forgive this angry blog in advance but here goes. An issue I cannot grasp is when some people, even after having been told several times of a condition’s INCUREABLITY, (not sure that’s even a real word but if not it should be), still expect you to ‘improve’. Without mentioning any names or places or specific occasions (*DISCLAIMER*) – let me give you a few examples of what I mean by this. Although I’m all too well aware you will likely have your own for reference.

In my case there is often an expectation I will be able to ‘perform better’ (and I’m not talking about within the bedroom here so draw your own conclusions). This is an impossibility as I already carry out every task to the best of my ability. Including piss poor rhyming it would seem. I try with all the patience I can muster, to express just how damaging and frustrating it can be to tell someone with a disability they should ‘try harder’. Mainly because we already are. We are trying harder than you. We have gotten out of bed and are completing the same tasks as you WITH a chronic illness. We are already better than you in so many ways. So why do you make us feel worthless?

When you offhandedly mention that we could try harder, you make us question ourselves. Maybe we are coming off as lazy? Maybe we could make more of an effort? That is a tough situation to put someone in. Not to mention dangerous. How much further should we be pushing ourselves in your opinion? So far we end up in the back of an ambulance? Maybe a morgue? Yes I am being dramatic here I grant you, but when your best isn’t deemed good-enough it’s completely and utterly soul-destroying. ESPECIALLY when this apparent lack of ability is caused by something totally out-with your control.  

When you tell us we should/could try harder, you are basically asking us to ‘improve’ our disability. Perform an impossible feat. This may sound dramatic to those of you without an incurable illness, but the invisibility of a chronic illness like Crohn’s allows for a startling amount of ignorance. Would you ask someone who was paralysed from the waist down to ‘just have a go’ at walking? Didn’t think so. So why then is it deemed acceptable for someone to query why my intestines don’t work as they should?

Let me finish with this: I have a full time job. I work long hours in a stressful environment. My condition(s) mean I struggle with pain mainly in my stomach, legs, arms, and hands, I experience almost weekly migraines, my medication means my head is often fuzzy and I suffer memory loss, extreme fatigue means I struggle to stay awake around 2pm each day and I am constantly and consistently exhausted. Did I mention that I can’t tolerate food and am either on the toilet or throwing up in it? Oh and that along with anemia and low blood pressure means I’m dizzy almost all day long.


I’m not mentioning all of this for sympathy – I know I am lucky as there are people who face much worse every day, but I mention it to reiterate the point. On top of all of that, what exactly would you like me to improve? I’d say I’m doing pretty well just remaining conscious to be honest.