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! 

Stress Who

It’s commonly known that stress is a huge factor in exacerbating chronic illnesses such as Crohn’s Disease. It also almost nigh on impossible to avoid. Everyone deals with their own stresses in day to day life, be it struggling with finances, feeling harassed at work, relationship troubles or just not being able to catch that last Pokémon. We all have our own issues and we all deal with them in different ways, so there is sadly no quick fix.

One of my main stressors, (and I hadn’t realised it was such a thing until recently) is being around negative people. This is a stress for me, mainly in my day to day ‘real’ job where the environment can be borderline toxic with reams upon reams of people competing to outdo one another in the misery Olympics. Of course being perma-sick like me can also cloud your judgement on these people, as you feel you have a unique outlook on their particular ‘problems’ – mainly that they need to realise how lucky they are not to live with an illness every day. But that’s just a biased and marginally unhealthy attitude and one I sometimes struggle to keep under wraps.

I’ve tried various methods in dealing with these people from straight up ignoring them to trying to play amateur therapist and everything in between. For the most part, nothing works, because the hard truth is; some people love to complain. They LOVE it. They relish finding misery in the minutiae of daily life then amplifying it for all to hear. But because I know being around these people makes me genuinely unwell, and I have no option but to be around them, I try to do certain things to make sure I’m protected. I can’t heal the world and make it a better place, but I can try to shield myself from some of the bile spewed into my airspace. So here are a few things I try to remember when I feel myself being drawn in:

1.  Don’t Become the Person you despise

By that I mean, don’t spend your evenings complaining to your significant other/friends/cat about said person(s) you find so unbearably negative. Although it can certainly be cathartic to vent your frustrations, all you are doing is perpetuating the misery and continuing a vicious cycle of gloom. Plus, you don’t want to be the one talked about in the same vein do you?

2.  Focus on what you can control

So here I’m referring to your mental state. Don’t allow someone else’s perpetually bad attitude to alter your own. Don’t be disheartened either when you find your amiable attitude doesn’t rub off on others, you haven’t failed, you’re not Mary Poppins, just focus on what you think and feel about certain situations and don’t get tangled up in bad feeling.

3.  Change the record

Sounds an easy task to just change the subject, but it's can be a challenge when someone is in the midst of a rant about this that and the next thing. Tempting someone away from the dark side of every situation can be hard but rather than indulging them it's often more effective to subtly change topic. It's easier than confronting them endlessly on their bad attitude, and they have nowhere to go with a rant when the recipient shows zero interest.

4. Act don't react

If this negative person happens to be a friend of yours, it can be tempting to try and solve their problem in the first instance. It’s of course always the right thing to display a degree of compassion for someone you care for/anyone who seems to be in a harmful spiral, but remember to avoid falling into their habits yourself. If you see a common type of behaviour of theirs approaching then perhaps try and pre-emptively ease it, before they slip into the same depressive slump.

5. Put Your Health First

There may come a time, regardless of your persistent efforts to help, when you should consider what you are getting out of a certain friendship and how much of it is draining vital life force from every fibre of your being. If a relationship revolves around one party’s negativity you’ll find yourself a verbal punch-bag, that’s when it might be time to cut ties where possible, or at the very least put some distance between you both. Health and particularly mental health is IMPORTANT and being made miserable and stressed regularly is a strain we just do not need. 

Book Up A Storm

I've neglected the blog a wee bit lately. Sorry about that. But with good reason! 

I’ve been so busy with book promotion, (how weird is THAT sentence?!), my real life full time job and stuff at home in my personal life that I feel like I've barely stopped to catch my breath let alone pen a blog post.

So here's what's happening. My first (and hopefully not last) book on living with Crohn’s Disease ‘Go Your Crohn Way’ came out 5^th May!  

Since my first book was published it's been an incredibly exciting time in my life, a genuine whirlwind and I've cried a LOT of happy tears. 

The outpouring of love I have received since the book was published has been overwhelming and completely unexpected!  Not that I think my friends and family are monsters who wouldn’t support me; but because I have been totally single-minded in focusing on doing the work (of which there is a LOT) to get it out into the world. I hadn’t stopped to think that other people would particularly care, or be in any way affected by something I had written. But at the end of the day I WANT people to be affected by the book: isn’t that the whole point? To raise awareness of an unspoken condition, to help give an understanding of life with chronic illness, and to help those suffering feel they are not alone and capable of living an AMAZING life? YESSSSSSS.                  

I had no idea having a book published would all be such an emotional experience! It’s not just my friends and family who have showered me with praise and encouragement, its people I’ve ‘met’ online, on Twitter and Facebook and through my blog. People I know well and people I don’t. How wonderful is that?

I suppose the subject matter of the book and the fact that it’s so personal has emphasised how people who love me are reacting to it. It feels to me a very cathartic experience; I’ve also found myself in a privileged position of putting something out into the world that may help people feel less afraid, isolated and alone. I wrote this book because it’s something I would have loved when I was diagnosed. I wanted to know that I’d have a life beyond my illness – something I didn’t think possible when i was being pummelled into insignificance with descriptions of my unsightly bowel and medical terms I didn’t understand.

I cannot describe how exciting it is seeing you all with your copies of MY book. When my partner saw his name on the inside cover (it’s dedicated to him, my parents and wet wipes) it was so incredible I wished that I could see his face could stay that way forever.  It’s all such a surreal experience and one I never thought would actually come to fruition. Every day is a treat and I don’t care that the hype will inevitably die down because my book will be in people bathrooms for years to come and I LOVE that fact.

I truly hope you enjoy it. And if all else fails, it’ll make the most luxurious toilet paper. 

Crack To Life

I don't have a single clue what I'm doing.

That's OK.

I don't have to.

I’m 32, and I don’t have a single clue what I’m doing!

Don’t worry [MUM], that doesn't mean I don't have ambitions, and goals in my future that I want to achieve, because I really do. I just don't have it all worked out just yet.

Not quite. Does anyone? I’m not sure.

If Facebook posts and stop-and-chats with old school friends are anything to go by, most people seem to have life all figured out. It’s all going swimmingly. I just don’t buy it.

For some people I’m sure life IS sweet. They are in the job they want, have a happy relationship, and maybe some perfect kids/cats. That’s great and I’m very happy for you.  

The truth is, for young women (and I’m sure men: I just don’t have that same experience to share), there is a tremendous amount of pressure on us to have ‘it’ all worked out pretty early. Despite being endlessly told not to grow up too fast, not rush into anything and enjoy our youth because it's the 'best time of our lives'; everything else tells us the exact opposite.

Decide what you want to do with the rest of your life before you leave school.

You're 16 you should know what career you want by now, come on!

Get a further education.

Get that job.

Get married, have those 2.4 children.

Get a mortgage.

Get a pension.

Write your will.

Die.

WOAHHHHH there. Can we just take a minute to ENJOY life? And see where it takes us? When I approached turning 30 I did so with not so much trepidation, more like abject terror. I focused solely on what I hadn't achieved. The rules of relationships and expectations put on me by every book, film, magazine article around me. I hadn't found my dream job, my perfect home, I wasn't married and I didn't have children. What had I achieved then?

That’s right: Nothing.

So instead of wallowing on my apparent failures I decided to forget about it and have a big party where we all dressed up as 80’s icons instead. (That was definitely one of my better and more glitter-inducing ideas).

I got sick though. Not that night. Although I did mix my drinks and eat faaaaar too many potato wedges. I became ill in my mid-twenties. It suddenly didn’t matter what job I had, or what colour of paint I’d buy for the lounge; it mattered that I stay alive long enough to wallow in the joy of choosing paint colours.

Illness, no matter how seemingly insignificant to those on the outside, can be genuinely life-changing. It can be all but impossible to simply fall back into old routines or old ways of thinking, because for you everything has changed. That can be very hard for those around you to understand, let alone accept.

That’s OK too! Don’t push them to, and more importantly don’t push yourself. You are doing the best you can so just keep at it. Much like our defunct bowels things will work themselves out eventually. Just be patient. A patient, patient if you will.

After all, your [insert current decade of age here] are the best time of your life. 

We Care A Lot

I don’t have a ‘carer’ as such. Not in the traditional sense anyway.

Many of us do. Many of us are unable to work, unable to dress ourselves, unable to ‘be’ without the help of another.

I have a full time job, and am physically fit and healthy enough (the majority of the time) to do pretty much everything for myself. I’m very lucky. I still have a chronic illness though. So at times I need to be cared for. Whether I like it or not, and I usually don’t like it one iota. 

I value my independence massively and when I am too unwell to do even the most basic of tasks and am forced to rely on people around me to pick up my slack, it grates. Big time.

My own ‘carers’ are wide and varied. 

My friends, my family, my love. 

They are self-appointed in this role, and like the superheroes they are they simply don their capes and fly into action whenever they are required. Thankfully they only wear their pants outside their tights indoors and for my own personal LOL’s. This care they offer me comes in what they do for me, both physically and mentally. They help me walk when I falter through pain, they hold my hair back when I’m sick, they make me eat when I don’t want to, they make me laugh when I think I never will, and they remind me life is worth living when I can’t see it for myself. They do all of this with such precision and ninja-like stealth that I’m sometimes sure there is some sort of co-ordination going on behind the scenes.

It’s often such a whirlwind from me being well to being the polar opposite that neither of us really notices we have fallen into the roles of patient and carer. But we do. It seems it’s all effortless on their part. We know it’s far from it.

They make me feel that I am worthy of love and care and that my illness is never a burden, although at my lowest ebb I usually feel like that excess baggage you have to pay over the odds just to get on the plane with you when you didn't really want to bring it in the first place or even go on this stupid holiday I don't know why we cant just go to the caravan its such a waste of money and the waiiiiiiting at the airport don't even get me started…OH MY GOD….

Caring for someone else isn’t easy. It’s exhausting, and a job that generally goes unappreciated or even unnoticed. That isn’t because we don’t appreciate you, or don’t notice what you do; it’s just that it’s normally after the event that we begin to realise what you’ve been doing for us. 

We are ill and miserable and require ‘care’ in the moment – we are generally too concerned with managing pain and sleeping and drifting into drug-induced oblivion to thank you for all you do.

So here I am, thanking you for all you do.  

We appreciate you! Please know that! 

I know we are difficult, and tiring and absolute NIGHTMARES from time to time, but we love you and are always incredibly grateful for your time and attention.  We care for you too. Always. Pants inside or outside your tights, you are my heroes. 

A Room of Our Crohn

The man I love and I have been together for a decade this week. 10 YEARS he has tolerated my terrible jokes, cat-voice and ownership of the toilet. A SAINT of a man.

When I first met him, we worked together, and I was a relatively healthy and active 22 year-old. Well I’d say, ‘officially’ healthy at that point; no doctor had diagnosed me with anything, but I still felt like something wasn't right with my body about 60% of the time, it just wasn't really an imposing issue at that point. We managed about 5 years together as a ‘normal’ couple before my health took a massive slide. I'm no Maths whiz, but by my calculations, for around half of our time together I've been ‘diseased’.

In the first few months after I’d become ill, everything was a blur of anger, frustration and pain. Getting to the bottom (pun always intended) of what was slowly killing me became my sole priority and my love-life and everything else took a self-imposed back-seat. I feared I’d lose my job and feared I’d lose my life. I feared My Love would inevitably realise he’d unintentionally hitched his wagon to a horse who turned out to be dud.  

Living with chronic illness can make you selfish. Not in any way intentionally; but patients will find they are often taken over by a single-mindedness to either get better, or simply to hibernate and close off from the rest of the world when feeling at our worst.
My Love is thankfully a patient man. In ways I often don't realise. He is tender and kind; qualities I know I far too often take for granted. I probably don't notice the majority of the things he does for me; too wrapped up in my own pain. 

I'm ashamed to admit that in the earlier days of my illness (and even more often than is fair, now), I’ll expect him to play mind reader and somehow know my pain, know what every twinge and jerk meant, know how I felt and what I needed; then if he read me wrong I’d internally curse him for his inability to jump through my invisible hoops. Knowing this cycle of behaviour often doesn't make it any easier to cut out either.

Chronic illness is unforgiving and relentless. It’s impossible to ‘grin and bear’. That doesn't excuse treating the one you love with a disposition they don’t deserve of course. My frustration, (and I'm certain I am not alone in this), is mainly in my inability to ‘heal’ myself. My future often feeling bleak, and my loss of ‘self’. Disease takes so much away from you that you are left piecing your jigsaw back together and finding there’s always a missing part. The picture never looks as it should.

When you are ill, and sad, and feel alone even when you are surrounded by people, you can be left feeling you are not worthy of love. I know, (although I sometimes have to remind myself of the fact), that I too am worthy of everything good in the world and more. I want that for My Love and for us. My disease shouldn't define me, or stand in the way of my relationship. I’ll aim every day to continually appreciate the man I share my life with gifting me his care and attention, and remember that love is two-way. Well for some maybe three-way but that’s for a more X-rated blog.

I don’t love my disease of course, but I do love what it has taught me about my own capacity for it. Limitless and immeasurable.

Intercourse Of Antibiotics

Before we begin on our sexy odyssey of discovery, let me leave a specific note for my Dad, if I may:

The following post may contain graphic descriptions of your only daughter holding hands and kissing a human man on the (facial) cheeks. Please look away now thank-you xox

So now that the foreplay is out of the way, let’s light a few hundred Yankee Candles, fire on the Barry White and slip under the covers of my latest post…

There are many reasons why sex and intimacy can be 50 shades of a grey area for those living with IBD (and chronic illness in general). Along with the basic initial difficulties in feeling the ‘urge’, due to pain, bloating, depression, exhaustion and a plethora of other issues; there is also a mountain of physical issues we often have to navigate through before even considering getting our paws on our partner. So here I’ll run through a few of the most common issues and some potential fixes to let you get back…on your back, or otherwise.

Stress

For anyone, sickly or not, stress is a very common problem and/or reason for avoiding or simply not wanting sex. For men, sex can often be a stress-reducer, but for women this is rarely the case. Dealing day to day with a chronic illness on top of everything else in life; work, family, home commitments, can be utterly overwhelming, so it stands to reason that doing the horizontal cha-cha is about as far from your mind as enjoyment is to a colonoscopy. In order to feel aroused, you have to be receptive; stress can hinder this, so it’s important to try and work out what your biggest stressors are and focus on how to reduce them. Then cha-cha to your hearts content.

Depression

Certainly for women, depression can make our libidos sink lower than a worm’s bra strap. Unfortunately, most antidepressants can have the same effect; decreasing our serotonin transmitters which play a massive role in arousal. You know, the same happy feelings we get when we meet a new kitten or find an unopened jar of Nutella in the cupboard.  Although often vital, drugs to ease depression can also decrease libido, hinder ability to orgasm or even interfere with sexual function.  If this is your Achilles heel, then first stop isn’t jumping off a cliff with frustration, but to see your doctor to discuss changing medication to something with fewer side effects, and/or to counteract the worst effects for you.

Negative Body Perception

With all IBD can do to our bodies, it’s not surprising that the after effects of this can spread far and wide. Often spreading to the bedroom, where its pyjamas on–lights off before even considering getting close to our beloveds.  Our stomachs are often bloated and painful, we are scarred from surgery, and our backsides are often so strained that it feels like we’ve been sitting on a cheese-grater-rollercoaster for 15 hours solid. Not the most alluring, as you can imagine. The bottom line is always, if you feel insecure and unattractive, you don’t necessarily want to take your clothes off. Try to remember that your partner probably doesn’t even notice (or care) that your tum looks like it has an entire bun factory in the oven. All of the issues you are fixated on are utter non-issues for the person who shares your bed. Intimacy and body-confidence is about more than just a physical ‘act’; it’s about sharing everything with one another. If that involves sharing your fears and insecurities, try it; I’m sure you’ll be pleasantly surprised by the response.   

Exhaustion

It’s no huge revelation that extreme fatigue is a common symptom of IBD. So when we think of bed, our first thoughts generally drift more towards snoring than sexy-times. Our bodies are sleep-deprived and almost constantly exhausted; we generally need more sleep than sex, and if we’re not sleeping enough, our libido’s shut down. The general solution to this would of course be to ensure we get enough sleep; however that’s hardly realistic in our cases, we couldd be asleep for 100 years and still wake up feeling like we’d gone 10 rounds with Rocky Balboa. Anaemia and iron deficiencies are also common in patients with IBD and they similarly cause an increase in these feelings of sluggishness. See your doctor regularly to ensure you are taking all of the right supplements and getting the iron infusions and/or B12 injections you sorely need.

Pain

Last but by no means least, pain and discomfort can be major sex-serial-killers. When you don’t feel good, your desire can take a serious hit. The last thing you want to do is consider sexual gymnastics when you can barely turn over without agonising pain. Sex should always be pleasurable, so if something is painful during intercourse that’s understandably going to cause a decrease in libido. It may initially seem mortifying, but try and talk openly with your partner about how to make things more comfortable – for both of you. Then, and only then, you’ll find yourself livin’ libido loco.

Dad: Obviously all of this comes directly from Cosmopolitan magazine and I haven’t so much as heard Sexual Healing by Marvin Gaye. Love you bye xox