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. 


Wednesday, 10 August 2016

Pain Killer

A little thing a lot of people without chronic illness may not understand is that it can be really, really difficult to tell people you are in pain. It may sound like a simple act; a brief discussion with an employer, an off the cuff comment to a loved one, but for me it’s often an impossible task.

Today I am writing this in a LOT of pain.

It’s one of those days that come every so often where everything hurts. My hair hurts. My eyes are constantly on the verge of welling up and my hands are fists primed to punch something/someone/your Dad out of sheer frustration. I wouldn’t though, I’m a lover not a fighter, and my arthritic hands can’t make fists right now so it would be a weak slap at the very least.  Plus I like the gifts your Dad buys me too much to rock the boat.
You see it’s easy to write all of this down, to tell a computer screen that I’m in pain, mainly because I can’t see your face as you read this. I can’t see your eyes roll or glaze over as you desperately try to force your brain to tell them otherwise. I can’t see you bored of me, or see the sympathetic head tilt.

I can’t see you disbelieve me. I can’t see you pity me.

Of course I’m not saying you all do these things, of course you don’t. Most of the faces I see are that of concern. And yes I’m supremely open to the suggestion that it may be my EXTREME anxiety and paranoia causing me to see these things in your visage, but it’s just that I’m pretty much a seasoned pro at spotting these reactions now.

The problem with talking about pain when you’re ‘in’ it, is that it allows room for little else other than feeling it. It can be genuinely difficult to even form a coherent description of it when you are experiencing it. I suppose that’s why doctors have developed these charts; the ‘how many out of 10’ and the ilk, for speed and accuracy in treating us. But those charts don’t apply when you are talking to people outside of the doctor’s surgery.

This morning as I struggled to get some sort of relief from the pain in my legs, my stomach, my head and my ENTIRE USELESS CARCASS, I tried to find ways to communicate this without over dramatizing. I didn’t want to sound ridiculous, like I was trying to skive at work, or bore my friends. But instead I played it down, like I always do, because it’s easier. Easier for me, and easier for them? I don’t know. I just can’t bear the judgement sometimes. It’s so utterly hypocritical of course, as I’m always the one who preaches how important it is to be transparent, open and honest in talking about your illness. But today I cried like I’d been subjected to a double-feature of Terms of Endearment and Les Miserables in the bathroom instead.

I’m not looking for sympathy here by the way, absolutely not, but I’m so continually and persistently anxious that I am already pre-empting your reaction to this. I care what you think of me and I wish I didn’t. The bottom line is (by now I shouldn’t have to tell you, but PUN INTENDED), when we are in pain, it’s all we can do just to tolerate that, let alone try to express how we are feeling. So just try to be patient with us. Make us laugh. Don’t let us see that we are frustrating you if we are. I know that may seem selfish but we honestly won’t have the energy to get into any form of debate with you, from brokering a trade deal between countries to forgetting to take the bin out, it’s all impossible.  Give us a bit of time to feel ‘normal, and don’t make us feel that we should apologise for it. Even though I’m 99.9% sure we will later anyway.


Just be kind to us, it really is that simple. 


Tuesday, 2 August 2016

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 Pok√©mon. 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. 

Sunday, 17 July 2016

Saved By The Bowel

I was walking my dog today, he had a bit of a poorly tummy (bit of a running theme in our house) and he unfortunately threw up on the way home. This was on the path on the way into my street and just happened without warning. He was sick, I petted him and after he was done he trotted away quite happily and carried on with his day. However the look he got from a woman across the street stayed with me for the rest of mine.

She looked utterly disgusted. She shook her head and looked at me as if I’d just stripped naked and danced the cha-cha in church. I HAD just done that but she didn’t wasn’t there and that’s beside the point. The point is, she looked as though he had been wrong to be ill in public. In her eye-line.  As if I should have somehow stopped him.

Now I know he’s a dog and you’re probably thinking what does this have to do with IBD, but it was a moment that made me feel the same way I’ve felt many times in living with chronic illness. Embarrassed, ashamed, and ANGRY. You see these ‘moments’ happen a LOT in living with health problems. Here are a few from my (never ending list) of embarrassing moments since I got sick for reference:

-          Stripped down to my bra and pants for an MRI and walked into the room only to be reminded it was for my head only so I didn’t need to take anything off.

-          Threw up on a bus full of people into my BF's hoodie then stuck my face into it in some vain attempt to hide, in the process covering my face in my own vomit.

-          Passed out as soon as a needle hit my arm then threw up all over myself.

-          When my arthritic knee gave way when I was crossing a main road and I had to direct traffic around me. 

-          The time the tube containing my latest stool sample rolled out of my bag in a hospital waiting room under the chair of an old woman.

I could go on for another 56645451354854 examples but I don’t want you to get dumped/ fall asleep/ burn your toast /whatever, on my account. My point is that having a chronic illness often causes ‘embarrassing’ moments. Moments you’ll undoubtedly laugh at later, but in the moment you’ll want the ground to swallow you up.

The main issue I have though is that other people tend to make these moments embarrassing; they judge. They look at you with pity, or confusion or even disgust. They think your illness should be dealt with behind the safety of a hospital-ward curtain, where your sickness doesn’t have to offend their eyes. They have a rule book of ‘done things’ and you throwing up in the street/ on a bus/ on them isn’t one of them.  

But what do they think we are thinking? Well we mainly feel ashamed because they are staring at us like we’ve just arrived from the Planet Zod, we feel vulnerable because they are looking at us with disgust, and while we are trying to focus on simply putting one foot in front of the other we suddenly find ourselves in the position of trying to consider YOUR feelings. Those of an abject stranger. Then we get ANGRY because IT HAS NOTHING TO DO WITH YOU.

The point I’m trying to make is that people with a chronic illness can’t always hide away for fear of offending you. We shouldn’t ever have to. Bodily functions and ‘accidents’ happen to everyone, some more than others perhaps, but that’s our problem not yours. How much of a tit do you have to be to take offence to someone else’s misfortune? A triple-G-cup-sized tit that’s how much.


So when someone is vulnerable and you don’t know the full story, if you can help, then you should do that instead of look on in horror like you’ve just seen your own reflection in a puddle. Also maybe be more mature than that last sentence, and try to bear in mind that when things happen we maybe can’t help it. Having an invisible illness can be hard for so many reasons, please try not to make it harder for us just because it’s visible to you.