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 -

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!

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. 

Monday, 29 August 2016

Rest In PJ's

A very important aspect to bear in mind when living with chronic illness is 'self-care'.
Firstly, I appreciate that may sound hippy-ish, and may inspire someone who doesn't eat kale or drink pumpkin lattes to feel increasingly nauseous, but at the core of it ‘self-care’ really just means looking after number one. 

In the least selfish way possible, it's vital to ensure that when you feel at your worst (and even when you don’t) that you take the time you need to help yourself feel as well as you can. Now of course that doesn't necessarily mean immediately calling your boss and throwing a 4week sick note at him so fast he gets a paper cut. It just means it’s important to remember that there are things you can do to ease the pressure of a day to day life with a chronic illness. For example: REST when you need to rest. It may sound ridiculous but this is often the most difficult for me. It seems to come exceptionally low on my list of priorities. I’ll always have something more pressing to do first. Then I came to the realisation that really that means I’m placing my own health pretty low down the rung on the ladder of life. And really, although a support network around you is imperative, it’s also vital to value yourself and your own body.

I've begun to try and act accordingly now instead of pushing myself to my body's limits and beyond. For example, if I’ve had a busy day and I’m into a new realm of exhaustion, I’ll find 20minutes to take a nap. Previously I would have made a million and one excuses not to: it's almost dinner time, I don't want to be rude and leave my partner alone, my favourite TV show is on, the moon is in Venus, etc, etc. Now I try to act on my body’s demands and feel better for it.

Looking after yourself may not make you feel massively different physically; it may only serve to allow you to feel a little more rested and give your triple AAA’s a well-deserved recharge. But that’s not really the point. I find it has a greater impact on mental health. It allows you to grant yourself permission to ‘be ill’. You don’t have to excuse yourself for something you have no control over, you just have to adapt to it and sometimes let it win a few battles. You still take the gold in the end; you just do it at your own pace. So put down the dish-cloth and pour yourself a delicious glass of bowel prep, you deserve it! 

Friday, 19 August 2016

Stress This House

Not sure if I mentioned it recently, if it all, I mean I have been pretty quiet about the whole thing tbh, but I've written a book on life with Crohn's Disease. With writing a book you, of course, open yourself up to criticism and judgement. That’s wholly understandable; I’m expecting people to take the time to read something I’ve written and maybe even purchase it with some of their, no doubt hard-earned cash, so I am certainly open to hearing opinions on it.

But within writing circles pretension runs rife. I’ve been made to feel that I’m not a ‘real’ writer in several areas; and I’ve gone along with that because I don’t truly feel like one either. Even though I’ve had a book published it still feels as though I’ll be ‘found out’ eventually and I’ll have to admit that yes I’m an idiot who just got lucky, LOLZ sorry!

But my own insecurities aside, and I hate to break it to anyone criticising me, but I’ve written a book on my experience of bowel disease; I’m not trying to be the voice of a generation or pen The Next Great British Novel.

This same feeling of insecurity permeates all aspects of my life when I’m feeling low. I’m not a good enough writer to be taken seriously, I’m not a good enough partner to the man I love and eventually he’ll see it too, I’m not ‘sick enough’ to talk about it with any level of knowledge, etc ETC to infinity.

These feelings all began when I got sick. Because with long-term sickness often comes anxiety and depression. Not for everyone of course, but for more of us than I’d care to wager.

I’ve always been self-deprecating; it’s what helped me avoid being bullied in high school (I had no boobs, a 10y/o boy’s haircut and liked cats more than boys). It’s what got me tips as a waitress and barmaid. It’s what help bagged me a beau. Laughing at myself is probably a safety net – it gets it out of the way before anyone else does. Not that I truly believe they will; but it doesn’t matter what I truly believe, because the minute I think those thoughts they take over. Approximately 4565775675 different scenarios play over in my head then I’m back to square one.

Anxiety and insecurity is a bitch because it doesn’t matter how many people tell you that you are wonderful and worthy and loved; you’re Teflon. It all just glides off you because you don’t feel it. Now let me be clear, (in particular for my Mum because I know she’s reading this hi mum I love you) I do not feel like this all the time. A large chunk of my life I feel self-confident and brave, important, and pleased with my image and my work. I feel deserving of the man I love and the friends and family who love me as I know that I should. But when that is gone and I’m just a ball of anxiety and frustration I can’t see how I ever had the gall to believe in myself.

Look I know this is a ramble and it maybe means nothing to a lot of you, but I’m mainly writing this to the young women who flood my inbox with emails everyday telling me they are scared and feel isolated in living with chronic illness. I want them to know they are not alone, and although it isn’t exactly a pleasant thought that another human being feels as bad as you do, it can also be a small comfort. Knowing you’re not ‘crazy’ and that these feelings will eventually dissipate gives us hope.

Maybe tomorrow I won’t want to weep when I see my reflection, and I will feel strong enough to write another chapter of another book because maybe someone might want to read it. If I can convince myself of that then you can too. Or whatever it is you ‘do’; do it! If writing is your bag then go for it! Just don’t write too well, I’m not good enough to handle the competition ;) 

Wednesday, 17 August 2016

Cordon Loo

You know when you walk into a public toilet? One that other human beings use as well as yourself? And you are met with an aroma that stings the nostrils. An unpleasant odour. The toilet almost smells like…let me see if I can get this right…a TOILET?

With IBD we encounter this more than most. We tend to spend a great deal of time in the toilet. Because of this, we are, and I have thoroughly researched [made up] this fact), 99.9% more attune to smells, cleanliness and hygiene. We are also more accepting of other people’s bodily functions because we are consistently judged on our own.

In my handbag, where most women perhaps carry a phone, purse, tampons and a lipstick, I carry all of the above, but also wet wipes (ONE DAY I WILL BE THE WORLDWIDE FACE OF WET WIPES), a small spray to eliminate potential odours, a lorry-load of medication for every eventuality, spare pants, spare tissues (in case of a lack of loo roll), a sick bag and E45 cream in case excessive-wiping is required.

Bet you’re screwing your face up at the thought of all this. Maybe you’re even imagining me ‘having an accident’ and thinking less of me. That’s ok. It’s your first reaction and you can’t help that. But its learned behaviour. We’ve been taught from birth that going to the toilet and performing the most basic function in order to help us remain alive, is a dirty thing which should be kept hidden; and certainly not openly talked about! Heaven forbid!!

We applaud our children when they learn how to use the toilet for themselves. Mothers excitedly tell other mothers about this exciting milestone after weeks or months of back and forth frustration. But when it comes to discussing matters of the rear that’s where it ends. As soon as we are grown we are designed to be ashamed. Go quietly into the toilet. Sit in stony silence until the other person next to you leaves. Don’t FOR GODS SAKE open your bowels when someone else is within ear-shot.

I encounter this daily. I don’t feel self-conscious anymore, for the most part anyway. I calmly do my business and carry on with my day. It means I can successfully function at work, get on a bus without fear, and stand upright. It doesn’t really matter if a stranger is ‘offended’ by me using the toilet, because I understand it’s their programming. With a little bit of their own self-consciousness thrown in. They WISH they could be as laid back and relaxed to drop their drawers in public as I am.

Some people of course, and many of them YOUNG PEOPLE with or without IBD, cannot use the bathroom in the conventional way and require life-saving procedures which leave them with colostomies on their bodies. You perhaps can’t see this so you judge someone for taking what you consider to be too long in the toilet. You assume.

All I’m trying to say here is try to remember that visiting the bathroom is a normal bodily function that everyone performs. You are not special. You do not expel gold-dust scented of the rarest flower.

Going to the toilet is not ‘disgusting’; it’s essential. You being a tit about it is wholly optional.