Never Miss a Sick

I’ve written before about the most gut-wrenching aspects of living with a chronic illness; seriously, I’ve written about it a LOT. So if you read my ramblings regularly, or are just like me, you should know by now there are many horrible day to day obstacles we have to overcome in living the life of a chronically ill person; from pain, medication, nasty drug side effects, stupid uninformed comments, the list really is as long as a lifetimes’ worth of loo roll. And what a DREAM that would be.

But one of the most seemingly straightforward issues we face is the one which personally causes me a veritable bucket-load of anxiety and guilt. That’s being forced to miss work, and the supposedly simple task of phoning in sick. It’s an undertaking which causes me incomprehensible worry, embarrassment and guilt and I’m still not entirely sure why. I know, because I’m the one doing it, that I only miss work when I have no option but to. And I know that I’d never become one of those awful people who uses their condition to gain time off, or uses it as an excuse for poor attendance. I know all of that and a million other things but it doesn’t stop me feeling useless and ashamed by the fact that I can’t drag my diseased carcass out of bed.

I’ve been through all the various stages of poor attendance, warnings, 2^nd warnings, being forced to pledge your allegiance to your employer through blood, but then haven’t we all. I’ve never been sacked (touch wood) due to my sick-leave, and I know I’m currently not anywhere near that stage, but it’s a constant nagging doubt in the back of my mind which grows arms and legs with every day I am unable to make work.

Today is one of those days. I’ve been in intense pain for over 24hrs and have barely slept thanks to nausea, headaches and a night fever that would put the Bee Gees to shame. I can’t really remember the conversation I had with my manager as I was absolutely up to my eyeballs in painkillers and ready to pass out. The strange thing about phoning in sick is the sense of instant relief at knowing you can now relax safe in the knowledge that your employer doesn’t think you are M.I.A, is almost instantly replaced with the guilt that you should be working. (At least for me anyway). I start to mentally talk myself into the idea that I’m not ‘really that bad’ or that I could maybe at least make up the missed time later in the day, or that I could actually just get up and face it like a (wo)man and stop wimping out all the time – but by that point I’ve either projectile vomited and/or collapsed to the floor like a broken-hearted 1950’s actress clinging to her beloved’s ankle as he walks out the door. But with less make-up and more dramatically. This guilt is compounded by the feeling that you are relaxed and comfortable at home and therefore should be at work. If you can feel better sitting at home then you should be absolutely fine sitting at your desk shielding calls, waiting tables, walking around in a boob-tube down at the docks or whatever it is your Mum does for a living.

Having been an employer myself, I can understand this sickly situation from both sides. You have to know what is wrong with your employee in order to establish how long they are expected to be off, and how you can best support them whilst they are off and when they return. That’s the theory anyway. But how much do you really need to know over the phone? As a patient, having to explain yourself when you already feel at your worst can be upsetting and distressing, especially if you feel there is a lack of trust or that you are not being believed.

If you are forced to take time off, try to remember you have chosen to do it for a reason. In living with an incurable illness comes experience, and you will begin to gauge what passes as ‘workable’. I’ve often been in work when very ill at times when a ‘normal’ person would've bowed out disgracefully. I now know what to tolerate and what to accept as time to GO BACK TO BED. 
Leaving the world for a day or so is sometimes vital to be well enough to step back into it. 

Are You Crohn-a Be My Girl?

As a fully-fledged woman, with over 30 years’ experience of womanhood and of doing woman things, and thinking woman thoughts, I feel I can speak with some experience on how women ‘tick’. Of course, don’t just take my word for it; if you need confirmation of my womanliness before I continue, let me just say that my qualifications include historic knowledge of Barbie and Ken dating back as far as 1986. I'm also the proud owner of a fairly serviceable vagina.

I've lately felt a strange shift in the way we, as females of the species, treat one another. This is an issue for all of us of course, but I refer more to our treatment of one another within the health community. Forums, social media and blogs centred on chronic illness should in theory be the most sacred of places, where we feel safe in the knowledge that we can say anything about our conditions without fear of judgement or being silenced and/or shamed for what ‘society’ perceives to be inappropriate levels of discussion around bowels and the contents of our toilets. We should be able to speak freely and without the added worry of upsetting those we love. Our own, personal, sickly safety net.

But often the holes that can appear in that net cause more issues than they are designed to resolve.  I've found that competitiveness, bitterness, and resentment often practiced by women (and humans in general: I'm no sexist, we are all idiots from time to time), in day-to-day life has started to bleed into our ‘safe places’. We argue amongst ourselves over what we should and shouldn't say and do. We make other women feel weak because our symptoms are worse and we can do this that or the next thing, so why can’t you? We shame one another when we struggle to hold everything together. We badmouth those who try to better themselves.

Why?

Well, firstly I will say that I’m no saint. I’ve served my time in the hallowed high school halls where bitching about your fellow teens is completely expected, if not insisted upon. Especially if you don’t want your head to be flushed down the toilet, which let’s face it, even Christian Grey would probably squirm at the thought of. I was absolutely never a bully, I find these people abhorrent; but I did get drawn into the badmouthing of others. It’s very hard not too, especially as an impressionable teenager. But we are now adults, and that excuse no longer fits the crime. As with any form of bullying, it usually stems from something missing in the bully’s life. They look to distract themselves and the wider world from what they lack by pushing someone allegedly weaker or more vulnerable further down.

Chronic illness and all that goes with it can already be an incredibly isolating and lonely world to find yourself in. Over the course of my illness, from my initial (and lengthy) diagnosis to today, I've gradually found the people in my life who have been unable to ‘deal with’ my illness, have fallen by the wayside. I've slowly but determinedly dropped them off at ‘Acquaintance Street’ where they are more comfortable in perhaps just seeing me once a year, or texting me randomly to talk about anything other than the state of my bowels. Don’t get me wrong, losing some of these women from my close circle of trust was an incredibly painful experience in most cases. It made me feel weak and useless and that my personality had somehow changed beyond all recognition. What had I done wrong? I’m not in control of this illness of course, but maybe I wasn't trying hard enough, I just need to woman up or I’ll end up losing everyone! I'm upsetting people and I shouldn't be; it’s my fault! Maybe I should be making more of an effort…  Do you see how easy it is to fall into that trap?

On the whole my experiences of other women within the health community have been very positive. They’ve helped me in immeasurable ways to feel less alone, less ashamed of my condition (and my new body) and educated me in ways a doctor doesn't have the time or perhaps inclination to. I want us to learn to pull one another up. 

Help us help ourselves. 

The more we start to berate one another for not trying hard enough is when we begin to doubt our own abilities. Be proud of one another when you achieve, and when you try but don’t. You of all people know how hard life is with an incurable illness, so why on earth would you want to make it even harder for someone else? You have the unique ability to share your knowledge with someone perhaps less fortunate, so grasp it, instead of reminding them how much harder you have it. Maybe if you changed that outlook things might be that little bit easier for you too. 

Be Mine(r)

I’ve had a great weekend. I’ve barely thought about my disease in the whole 48hrs! A first! 

Ok so since you've twisted my arm, I'll admit that I’ve felt pain in my gut when eating dinner on the date my beloved took me on. 

And yes ok since you strapped me to this lie detector machine, i will say I’ve felt exhausted and achy from walking around town and from just being ‘social’. 

Ok fine, and since you've begun water boarding me [is all of this entirely necessary?] I'll admit that I’ve felt anxious at eating more than one piece of gnocchi incase my intestines pulled together and made a suicide pact. 

But other than the aforementioned, this weekend has been filled with fun, laughter and love, and aside from feeling like I’ve run 5 marathons with Hulk Hogan on my back, I feel pretty refreshed. I have a clear head and feel more positive than I have in a long time. I'm not entirely sure why that is. I can only assume it's because I've been active and spent time with people I love and not had to spend every waking minute thinking about my illness. A happy relief. 

I do appreciate that I still have to make some big decisions on my next Crohn's treatment soon. Something I'm decidedly anxious about as it's uncharted territory. Up to now I've been ordered - given a prescription or (often literally), spoon-fed my medication. I've been blindly following my doctors orders as they know best, but now it's in my hands as to what I do next. 

It's somewhat invigorating though. 

I have been actively researching my possibilities and it's all a bit of a whirlwind. What one can do the other can't, what one helps the other hinders, etc. I also have to think long term, as I'm a woman (yes, I know it's hard to believe) and my womanly bits are of some concern; some medications may affect my chances of pregnancy, my fertility, and as I'm already in my early 30's I'm not sure I want to have the idea of having a human exit my vagina taken away from me entirely. I'm obviously referring to a potential baby there. And those Chilean miners. What a couple of months that was. 

Anyway as we face dreaded Monday morning, I'm feeling pretty good about my future and feeling better in my cranium seems to encourage me to push on in all areas of life. My illness is difficult to deal with at the best of times, and finding the balance between giving my poorly body the attention it deserves and pandering to it, is still a tricky tightrope for me. 

I'm slowly learning it's ok to come out of my misery-cave when I'm unwell, and much like those Chilean miners, I know there are people out there in the world who care and will to fill me in on what I've missed. 

It's important not to let your disease consume you. A valuable lesson I'm learning a day at a time. 

The Disaster Crohn

Yet another strange aside of having a chronic illness, (I’d mention them all but my fingers would turn to stumps from excessive typing), is the expectation from outsiders that we should 'perform' in a certain way. That we should act more like the ‘sick’ people we are.

Seeing is believing after all, and some people just can’t seem to get their heads around an invisible illness.

They can comprehend Heaven and Hell, and that God (James Spader) exists, but they can’t quite seem to grasp that we have a disease that mainly exists under the cover of our skin.

OK so these people know we can’t possibly walk around in hospital gowns 24/7 for their benefit, because that would be both inappropriate in high powered business meetings, and THEFT; but they’d still prefer if we could make life a little easier for them. Perhaps a sandwich-board with “YES, I’M STILL SICK!” emblazoned on it? Or a tattoo we could get across or foreheads with a detailed artwork conveying our burning loins?

In terms of our outward persona, we never seem to get it quite right for them. 

Too happy? You can't be being honest about your symptoms!
Too sad? Cheer up for christsakes!
Too quiet? Talk more!
Too loud? Attention seeker!
We seem to morph into this strange re-enactment of Goldilocks when we are around these doubters, whereby we can never find the right porridge. Then everything turns red. Well the toilet bowl anyway. Too graphic? Not sure where I'm going with this analogy but stick with me.

So because our illness is invisible we are yet again, in mainstream society, expected to behave as patients. Or people's preconceptions about what a 'patient' or a ‘person with a disability’ is anyway. If I had a broken leg and was hobbling about on crutches and wearing a massive cast I would still acceptably be permitted to laugh and joke like a normal human being as you scrawled 'FRED WOZ ERE 2015' onto my leg in permanent marker. Wrong leg Fred, the one with the cast you idiot. But because you can’t see my disability it can’t possibly exist can it? And if it REALLY does, why are you laughing? You’re ILL aren’t you?

As you can't see the ulcers on our intestines, colon, mouths etc, the internal scarring, the swelling, the bleeding, amongst countless other grisly sights, it’s somehow allowable to assume all should be well. Even if we remind you verbally, it still seems beyond comprehension for some of you.

I've often fallen into a strange place whereby I feel almost guilty for displaying happiness. If I show improvement in my health, outwardly, I then have to start from scratch again when things turn the other way. Produce the 'I'm still sick' card, which is entirely depressing, and can feel like attention seeking when really we’re just over the moon that we don’t feel like The World’s Strongest Man is using our intestines to pull a 4x4.

I suppose what I’m getting at is that we could all try to practice a little more tolerance. Those without chronic illnesses could try to listen more instead of judge and assume. Those with, could learn to use these encounters as opportunities to educate rather than take offence. And patients could learn that we are all in this together and all aiming for the same outcome: a cure, and in the meantime the best possible treatment. We could take care of one another physically and mentally and pick up those who are struggling rather than getting competitive about who ‘has it worse’.  Competitive suffering is one of my biggest peeves and should be eliminated from all of time and space immediately.

Now if you’ll excuse me I’ve got permanent marker I need to try and remove from my leg and a Bible based around the life and teaching of James Spader I need to pen.  Bye for now.

P.S. Just a quick note for those who missed it: The WEGO Health Awards were announced yesterday and although I made finalist in two categories (Best in Show: Blog and Best in Show: Twitter) I didn’t take the crowns! BUT I’m honoured to have gotten so far, and want to congratulate some amazing WINNERS from the IBD community!

-Sara Ringer (Inflamed and Untamed)

-Eric (Vegan Ostomy)

-Meg (FrontButtYoutuber)!

CONGRATULATIONS again! <3 

Ok byeeee! xox

Stool Runnings

It's difficult isn't it, when you find yourself straddled uncomfortably between happiness and misery. 

Like some sort of 50 Shades of Grey activity where you've forgotten your safe-word it can be incredibly difficult to manoeuvre yourself out of a situation you're not comfortable with. 

You stretch out a hand towards the life you envision for yourself yet it's always just out of reach. It's a painful losing battle to find yourself disappointed again and again at the hand you feel life has dealt you, and you're seemingly helpless in your vain attempts to clutch at what you desire in life.

In suffering from a chronic illness these feelings may be familiar to some. Commonplace, even. To outsiders airing these feelings of often abject misery can be perhaps worrying and a cause for concern because they don't feel the relentlessness of your illness. 

They don't feel the pain all day every day that surges through your body. 

They don't experience the uncomfortable and interfering symptoms that you do, and they don't feel physically and mentally exhausted every day in life. 

Even on the 'good days' patients will think about their illness; why aren't I pain? What does that twinge mean? What if I need surgery again? What if I need to go to the toilet and can't find it? What if I've forgotten my wet wipes?

I try not to wallow too much in the pain I regularly feel because I'm tired of feeling it and want a break. Also because it's B-O-R-I-N-G to talk about. 

Chronic illness isn't fun. 

There's no metaphorical finish line to cross because there's no getting better. I don't jump into the air and click my heels together when I get home from yet another hospital visit because I've generally been handed another deluge of information to begin to comprehend, alongside a massive bag of foul-tasting drugs. But enough about my dealer. Kidding Mum! Prescribed drugs, obviously. I don't have a 'dealer'! But if I did I'd like him to be called something like 'Crazy Leroy' and wear loud shirts and shiny brogues. 

I digress.

I write often on the mental health issues that can often coincide with chronic illness, from anxiety to depression, as I don't believe it's something to keep quiet about. It's not shameful, or embarrassing to admit you sometimes feel low. It's safe to talk and be open about your feelings because you might not feel safe in yourself by keeping them in.
I often align suffering from IBD with grieving for a loved one. Not to in anyway minimise the horror of losing someone close, but it's apparent to me that the so called 'stages of grief' are startlingly familiar to anyone who has faced the diagnosis of an incurable illness.

Denial, Sadness, anger, depression, acceptance.

I was told last year I should "learn to accept" my disease. How do you go about accepting it exactly? It's not a bunch of flowers. It's an incurable condition I will have to endure for the rest of my life.
I suppose in terms of 'acceptance' I've come to the realisation I'm not going to get better. That's not to say I won't find a treatment to suit, but that I won't wake up one day and find myself Crohn's-free.

Shortly after my diagnosis I felt for a long time that I was looking at my illness through the eyes of everyone else: my parents, family and friends. The man I love.
I'd taken on board all they felt and predicted for my diseased future, and just rolled with it because it was easier. When I'd recount my stories of surgery and hospital visits it would feel like me talking about a friend: difficult to describe I suppose, but I think the mind has a way of closing off certain parts to protect itself; I wasn't physically strong enough to cope with what was happening to me so how could my mind be expected to comprehend such life changing news? The truth is there is no right or wrong way to cope with chronic illness; it's abut finding what fits you, not pushing yourself too hard, not punishing your body and ensuring you aren't bottling your feelings up.

I don't mean to depress or upset, because the majority of the time I personally feel incredibly lucky to have amazing people in my life, for all of you lovely readers, and for the love I have around me. But often I feel sad, and exhausted, and that's when I (and YOU) have to remember that this particular storm will pass. It won't last forever. Even if my disease will.

27 Stresses

It can be quite incredible the impact other people's actions can have on your mood and outlook. Whatever age you are, or walk of life you come from [what does that even mean anyway?], it can be surprising when you find yourself affected by even the most seemingly insignificant actions of those around you.

In my day to day work-life for example, I find myself drawn in again and again to imagined drama; be it someone's stolen someone elses milk from the fridge, or someone has had a bad nights sleep and has chosen to wax lyrical about it for the entirity of the day. All insignifcant and irritating and borne of frustration and attempted avoidance of real-life problems. Or they are just daft eejits, also a distinct possiblity.

After being advised last year that I suffer from anxiety I have learnt a few methods of my own to remind myself not to get caught up in this daily web of discomfort. I firstly point out to myself I am suffering from a chronic illness, the symptoms of which are exacerbated by stress. Therfore it's physically dangerous for me to involve myslef in someone elses argumental minefield. When this mental reminder doesn’t work, the unbearble burning in my diseased intestines is a more forceful encouragement.

I have some other calming tools up my sleeves, such as replaying the lyrics to one of my favourite songs over in my head when i'm in intense pain - (it helps to keep my mind focused on something else)- DISCLAIMER: this isnt a cure for pain and pain relief is also advised, so don't be a moron about it.

I also take some alone-time to myself, into the  toilet if necessary (I'm in there a lot of the day anyway) and close my eyes. I think of two colours and visualize them ; breathe in with red and out with yellow for example, until I feel my heart rate slow down and my muscles begin to relax.

Of course just because these quick-fixes often work for me, certainly doesn’t mean they will work for you, but they are worth a try. They are also in direct correlation to the extent of the situation you are getting anxious about. If its something as regular as meeting a stranger then quick calming methods may work to ease the stress of what to sayand what to do and if you have herbs in your teeth from that pizza at lunch. But if you are dealing with something as horrific as devestating grief or a major shift in your lifestyle, then you may find yourself in a stress-shaped-hole you struggle to climb out of, where you can repeat David Bowie lyrics in your head until you are blue in the face and it wont make one iota of difference.

Anxiety and chronic illness go hand in sweaty-palmed hand. It can be nigh on impossible to ignore when you find yourself in the unfortunate position of suddenbly having to factor your illness into every aspect of your life. For IBD patients, something as outwardly simple as finding the nearest toilet in a strange place, can fill us with dread quicker than being asked if you "come here often" by a seedy suited business man in a nightclub. Although coincedentally that's how I met my first husband. JOKE I don’t have a husband! He's been chopped up in my car boot for saying "I don’t look ill" in 2002.

Alongside the more obvious worries in being diagnosed with a chronic illness, such as how your body will change, if you will lose the use of certain bodily functions, what side effects you will have from medications and what grotesque treatments you will have to endure; there can also be a myriad of other stresses you hadn't previously considered. Anxieties over the progression of relationships and if your employer will accept you potentially not being able to perform as you once did. Worries about performance levels dropping at work can often be more overwhelming than a man in his twilight years surfing the net for Viagra after a first date. Again coincidentally how I met my second husband.

Anxiety is incredibly common, sadly one of those most prevalant mental health problems in the UK alone, with people of all ages suffering from the condition, yet many too afraid to so much as discuss their fears with their doctor. There is no 'quick-fix', only mechanisims that can be learnt to help on a day to day basis. Looking at your problems in a more rational and in-depth way may also help to iron out some of the underlying issues causing your anxiety. Sometimes this needs someone else to coax it out of you - preferably an outsider if possible as family and friends worrying about you can often compound your anxieties.

Talking is a great first step. Little and often.

Don't worry that you will push people away by opening up - it's one of the bravest things you can do, and those who love you will have nothing but respect for you. If you feel trapped and afraid and are sinking in metaphorical quicksand then reach out and accept help when it's given. You don’t have to 'put up with' feeling this way and you don't have to be alone with it either.

On the other side of the anxiety coin, if you see someone suffering and stuck in a downtown funk then offer your hand to help them up.

Coincidentally how I met my 3rd husband, Bruno Mars. 

Written in the Scars

Something I've never been able to understand, even from a very young age, is why mental health is still such a taboo subject. 

Especially today, in 2015. 

This was meant to be the decade of hover boards, robot policemen and flying cars. OK so, some (all) of those predections didn’t quite make the grade, but the idea of advancements in technology and invention was always considered a thing of the future. It's so upsetting then, that it seems so many of us are still stuck in the past in terms of what we consider to be acceptable subjects to talk about. It's always been pretty obvious to me that we should look after the health of our minds in the same way we do with the rest of our bodies. 

I've never been a fan of shrouding my life in mystery. I'm probably too much of a 'sharer' if such a thing is possible.

I deplore lies, and favour people around me who are open, honest and enthusiatic. I am judgemental in my own way, which is something I wish I could eliminate and something i judge myself for, constantly, but I don’t believe in maintaining silence over something that causes you so much as an ounce of sadness or pain. Be that internal, or external.

I suppose chronic illnesses such as IBD go hand in bowel with poor mental health as they share a lot of the same nasty foibles. They both go widely unspoken, are 'embarrasing' and generally considered uncomfortable to talk about. But why is that? Because we don’t talk about them!

I'm not ashamed or embarrased to admit my own mental health has taken a startling decline since my diagnosis. 

As my physical health declined when I was in my early twenties, I felt I was too young to be so unwell and to have so much of my life changed so suddenly and outwith my control. I hated losing my independence and having major decisions made for me by seemingly abject strangers in white coats. At the exact point I was 'finding myself' as a young woman I was being forced to make choices that would ultimately affect the rest of my life. I didn’t realise at this point just how mentally, as well as physically poorly I really was.

Hopelessness is a common feeling associated with long-term/incureable illness. Because there is no end at the light of the colon it can feel as though there's nothing to aim towards. When you get into this mindset you start to focus on the negative and cancel out any positives when they do arise. It’s frighteningly easy to fall into a state of depression as you begin to survey the situation around you and your potentially bleak future. That’s one of the worst aspects of depression; not being able to see past the negatives life throws at you. Seeing everything in black-cloud tinted glasses. I've been in the unfortunate position of feeling so low that even cuddling a kitten for more than 30 minutes hasn’t been able to rouse me from my glum-ber.

It's a strange feeling. Knowing you are in the midst of this doesn’t make it any easier either. It can be like quicksand; the more you stuggle against it the deeper into it you fall. This is why I am a massive advocate of talking about your feelings. So what if you make someone feel uncomfortable? Who cares? We are all adults, not delicate little flowers who curl up and die at the sight of a tear on a friends' cheek. If the person you are sharing your fears and worries with flinches or just doesn’t understand, then help them to help you. 

Just start slowly by talking about what's on your mind. It can be amazing what that simple act can do. Maybe you are really anxious and troubled about everything (or nothing at all) and talking with friends and family wont cut it; that's ok too, visit your doctor and let them begin to try to help you. there is absolutely nothing to be ashamed of in opening up about feeling unhappy.

Everyone at some point in their life will feel hopeless, it doesn’t make anyone less of a person by sharing the load. Incureable illnesses are hard, nad made even harder by cruel, ignorant and intolerant people. Surround yourself with love and kindness and it will stick to you like a plaster will when that kitten you've been hugging for 30 minutes has lacerated your arm trying to escape.