A View to a Pill

When you are chronically ill or unwell for a protracted period of time, it’s incredibly difficult to maintain that infamous ‘positive attitude’ we are all led to believe in. That hallowed state of mind whereby, whatever life throws at us we can get through it with the aid of only a cheesy grin and a blind faith in our doctors, bodies and ourselves. I’ve personally never been one for the ‘It’ll all work out in the end!’ approach. I favour medication, and people with medical degrees over sticking on a CD of whale music and burning a few incense sticks.

I’m a big believer in trying to avoid negativity wherever possible; it’s something that can certainly compound the stress and upset of an already difficult situation. Hospitals are rife with bile, and not just of the physical kind; people who are desperate to remind you that they are worse off than you and that nothing is going to get better, like, EVER. They advise you on how terrible their condition is and frighten the life out of newly diagnosed patients with inaccurate horror stories on what’s ahead of them.

I have various friends with chronic illness, who, like me struggle with the idea of ‘positivity’. Not to make us sound like the aforementioned nightmare hospital roomies, but we try to be realistic about our situations. There isn’t anything wrong with this; yet we are often made to feel we are being negative purely because we don’t skip around with flowers in our hair as we haven’t vomited in 24hrs. Being realistic isn’t the same as being negative. Please do not assume because we are gritting our teeth behind our cheesy grin, we are purposely choosing to be difficult.

Sometimes ‘thinking positive’ isn’t always productive for us. Putting all your eggs in one blind faith-filled basket can often serve as a frightening reminder that we aren’t ever necessarily going to ‘get better’. Chronically ill patients often set themselves mental goals such as; “After this appointment I’ll be sorted...” or “Once I’ve had my operation I’ll feel better...” are often setting themselves up for a major positivity fall. When said ‘goal’ has come and gone and you still feel beyond awful, it can be so disheartening you feel utterly hopeless. When those around you keep encouraging you to think about the future it can be excruciating. Most people with chronic illness struggle to think about tomorrow let alone months and years down the line.

I’m absolutely not encouraging anyone not to think positively. If that’s what works for you then that’s honestly great! I just worry that pushing yourselves to create possibly un-achievable goals will do more harm than good. Focus on what’s within your control; be proactive on educating yourself and those around you on how to best treat your illness. Mentally and physically. Listen and learn from the experts and ensure you are doing all you can to feel as well as possible.

If all else fails, look at this picture of my cats giving each other a high five and watch your worries simply drift away. Now where did I put those incense sticks…? 

Rage Against the Latrine

I'm angry. 

Not an uncommon occurrence; I'm generally pretty fury-filled on a regular basis, about anything from the injustice of children dying in hunger to there being only one bus every 40minutes after my shift finishes. But today in particular, I'm angry because I have an invisible disability, and people around me, (some complete strangers and some people I've known (and liked) for years), question the validity of my condition on a daily basis. 

Today I cried in the toilet of my work place. Somewhere I spend a large portion of my day because I have a condition which means I often need to go to the loo for prolonged periods, throw up, put my head between my legs so I don’t pass out or dab myself down because I have a sky-high fever and don’t want to appear like a sweaty mess in public. 

I know every crack in every tile in that bathroom because I've rested my face on the cold wall when i'm burning up. 

I know which cubicle floor has uneven lino because I've knelt on it when I'm cradling the toilet bowl vomitting up my lunch. 

I know which toilet cubicle is the cleanest and which has a dodgy flush because I am in there between 10-20 times a day. 

So when I come out of the bathroom, and someone asks me why I'm in there "again" or something of that ilk, (in a voice filled with more suspicion than even Peter Falk could convincingly pull off), I want to punch the doubt right off their smug face. But today, because I have the energy of a sloth with a hangover, my first instinct was to go straight back in and cry.

I used to worry that my anger at outsider's lack of interest and complete ignorance at my condition was making matters worse. That maybe the stress holding this anger was putting me under was just exacerbating my symptoms. But the minute I tried to let it go and tolerate the stupid insensitive comments, I found myself feeling weaker. Pathetic and frustrated at my lack of back-bone. I wanted to explain they were wrong and that my symptoms are genuine and how damaging it can be to insult already vulnerable people with their thoughtlessness, but then I was fighting a losing battle. One I don’t have the energy for, 99% of the time. 

But then that frustration at the inane ignorance of others turned to anger and I realised that this anger can actually be powerful. It puts a fire in my belly. Well, another fire in my belly.

Ignorant people cant fathom patients who stand up for themselves and challenge their misconceptions about our illness. We just don’t fit their mould. People with invisible disabilities should be weak and helpless. We certainly shouldn't talk back or question their beliefs. Oh and it goes without saying that we should all be in wheelchairs with bandages wrapped around us to make it easy for EVERYONE ELSE ON THE PLANET to establish we are ILL. 

If we stand up for ourselves and show a little fight we are generally disbelieved to an even greater extent because we are pushing it too hard, or accused of shoving our illness down peoples throats. Where's the balance? 

 

I'm going to stay angry. And stand up for myself and my friends, and others in the same poorly boat. Not because I want to punish the precious parts of my internal organs I still retain, but because the angrier I get the easier it becomes to correct you when you tell me I shouldn’t eat this or I shouldn’t do that. 

It makes it easier to tell you that my disease is mine and mine alone, and that your 'opinion' on it is utterly invalid. 

It makes it easier to live with an illness that has to be factored into every single decision I make, every single day of my life.

I'm angry because its visible, and audible, even when my disease is not. 

One Sick Pony

I’m a 31 year old woman. 

I was 26 years old when I was finally diagnosed with a chronic illness called Crohn’s Disease. 

For those not familiar with the condition it’s an ‘invisible’ illness which causes inflammation of the intestinal tract and disease itself can be located anywhere from the mouth to the anus. On the scale of sexy diseases it’s probably pretty far down the list. Who made a scale of sexy diseases anyway? What’s wrong with you? PERVERT.

Due to the invisibility of the condition it’s often difficult to express how you feel without fear of judgement or disbelief. If you look fine on the outside it’s natural people would be surprised to find you feel like your intestines are about to combust on the inside. But it’s not all invisible. Many of the treatments, medications and general upkeep in living with the illness can leave side effects and symptoms that are far from invisible.   

Before I knew I had Crohn’s, I had arthritis. In my knees, at 25. Nothing majorly unusual about this I hear you cry, but I was of the assumption at that time that OLD people had arthritis. Pensioners, who are generally slow and live at a snail’s pace, anyway, have the defunct bones and muscles because that’s the way of the world when you start to age. I was in my mid-twenties and suddenly found myself in excruciating pain when I so much as bent my legs. I was despondent and miserable, and depressingly in the position of considering treatments and taking drugs and having ABSOLUTELY MASSIVE needles stuck into my knees. I couldn’t enjoy dancing or swimming like I once had, and couldn’t even cross my legs without discomfort. It was an odd, new and unexpected situation.

Mere months later I was in agonising pain higher up – in my stomach. I was suffering from another issue, the aforementioned Crohn’s. If I’d found the arthritis a frustrating challenge up to now, I had no clue what was ahead of me.

I was a young woman, being wheeled in and out of hospital and terrified. I managed, around my hospital visits, sick leave and treatments, to have as normal a life as possible in an abnormal situation. But the little things you will inevitably encounter when living with chronic illness are often those which leave a mark that’s far from invisible. Blood tests left my arms bruised and sore, cannulas left tiny life-long scars over my hands and arms and intense courses of drugs left me either bloated like an inflated hamster or painfully pale and thin. 

There was, there is, no happy medium.

When I had my surgery, I fretted my stomach would look repulsive when I came out the other side. I worried I’d have a stoma, and that I wouldn’t be able to adapt. That I’d have to dress in unflattering smocks for the rest of my life, and that the man I love wouldn’t dare consider engaging in intercourse with me for at least the next few millennia. Looking back now, I realise that the worry around my operation really was just the cherry on an already highly calorific anxiety cake. I became aware that my so called invisible illness was having a much bigger impact on how I viewed my body than I had realised.

Young women as a rule have difficulty with the way they view themselves, there’s always at least one part of the body we hate/wish we could change/find abhorrent. I don’t think that necessarily fades with time either, maybe we just learn to live with those bits a little more, or find solace in the fact that someone we care about finds something beautiful in them. (Not that we all require reassurance from another person to appreciate ourselves of course). I’ve got a big nose and a big chin for example; I hated them with a passion as I grew up, then I realised my Dad has the same features and I absolutely adore my Dad so it’s nice I have something of his. When people say I look like my Dad I take it as a compliment, as a teenage girl that wasn’t so easy, but now I accept he was a handsome devil in his heyday and is a wonderful person, so what could be wrong in his daughter carrying some of that on?

Trying to see the positive in what you perceive to be imperfections isn’t as easy as it should be, and can be made infinitely more difficult when your body, internally and externally, can change so much with a chronic illness. Like many illnesses of this type they are incurable, so viewing changes in your body positively is an ongoing and relentless struggle.

I try to focus now on what I can change; if I look pale I make up my face a little, if my skin and scalp are dry and sore I lather myself in sweet-smelling creams until I feel luxuriant. 

If all else fails I stand in front of the man I love in the nude and see if he runs out the door screaming and crying in horror, or grins from ear to ear.

Once I finally manage to beg him to come home and dry his tears, I feel I can achieve anything. 

Drown in my Crohn Tears

I’ve been particularly poorly in the last few weeks; my disease has been well and truly kicking my backside, in more ways than one. I’ve noticed in this period of relentless illness that the comments and helpful ‘suggestions’ from outsiders seem to have increased tenfold.

So in order to establish whether or not I am just particularly crabbit (=irritable for non-Scots), or if people really do weigh in on my IBD as much as it seems, I undertook a silent experiment. I noted, physically and mentally, everything someone said in relation to my illness that rubbed me up the wrong way. No, it didn’t serve to make me feel any better, but it did amaze me as to how regularly I tolerate this nonsense and still don’t have a criminal record.

Feb 2^nd

When advising I’ve lost weight in the past few days, a colleague;

“I’d love to lose weight that easily!” closely followed up with “It must be great to be so skinny..”

I don’t think I need to say too much about how unbelievably insulting that is to someone with a chronic illness. It may not appear rude to the untrained (or should that be un-diseased) eye, however if anyone has as much as an inkling of knowledge on Crohn’s Disease and IBD, you will know that losing weight ISN’T a positive. It’s yet another scary sign things are getting worse. At my worst I’d dropped 4 dress sizes and 5 bra sizes and was a horrifically skeletal version of my former self. I was doing everything in my power not to be photographed beside trees for fear or becoming invisible. Scrap that, I was doing everything in my power not to be photographed at all.

Feb 4th

Involved in an online discussion with a fellow IBD patient, who advised me that my blog is;

 “..misleading, as it implies we can’t get cured”

HELLO? I may have missed that almighty bombshell whist vomiting or on the toilet AGAIN, but Crohn’s is still currently INCUREABLE. Therefore I’m not actually implying anything; simply stating a fact. My blog is a diary of sorts of MY personal experience in living day to day with the disease, not a journalistic attempt at filling peoples’ already vulnerable heads with false hope and incoherent theories. To imply I don’t want to be cured is unbearably ridiculous, and if you had taken more than 5minutes to actually read my posts, you would know I don’t enjoy this disease. I despise it.

Feb 5^th

Above said daftie, then posts a passive aggressive tweet aimed clearly at me for having a difference of opinion and promptly deletes it through cowardice when I have the gall to reply. YAWN. It’s incredibly depressing when people who profess to suffer from the same illness as you then backbite simply because we don’t have the same attitude. Chronic illness can already be an incredibly isolating situation to find yourself in, so adding to those feelings through what can only be vanity or insecurity at how you truly feel, is distinctly unhelpful. I talk openly about how Crohn’s affects my mental health, relationships, bowels; I’m not ashamed of being sad or angry or afraid, I’m not frightened of being realistic about how IBD affects my life – it’s empowering for me to be open about it. I won’t ever be made to feel that is wrong, by anyone’s standards.

Feb 8^th

Stranger tells me to “eat something hen, what’s wrong with you?!” when I’m sitting alone in a café nibbling on a slice of lemon loaf.           

Feb 10^th

Colleague tells me to “try eating less bread”

Feb 11^th

Colleague tells me to “try eating more nuts, I read it in Glamour magazine”

Feb 12^th

Colleague says “you’re still ill..?”

I lose the w(ill) to live.

Feb 15^th

Friend texts to tell me they read about “aloe-vera being a cure” adding “it’s probably bullshit though…”

Feb 16^th

Stranger at hospital tells me that “Coconut Water will sort you out, I read that, there are loads of supplements you can take as well” and that “Crohn’s is the same as IBS, you’d disagree but I have IBS I know what you’re going through”

I internally scream until my lungs fail.

When looking back over this few days it’s disappointing to see that this is pretty much an accurate example of everyday; nothing out of the ordinary here. Everyone and their wife/ husband/ lover/ cats have an opinion on my disease and there’s little to nothing I can do about it. Grin and bear it? Or grimace and gently correct everyone without IBD? I’ll be sticking to the latter, when I have the energy to do so. And if I want to eat half a piece of lemon loaf because that all my dodgy insides will tolerate, then I’ll do it. And generously choke you to death with the other half. 

Flare All

Currently in the midst of one of those flare-ups where so much as breathing is completely and utterly exhausting. All I think about is Crohn's. All day everyday. I feel sick, I feel the overwhelming urge/ panic/ hyperventilation to get to a toilet, can't eat without pain, sweat and shiver and everything aches. Even my hair. How is that even physically possible? I certainly don’t know the science bit like Jennifer Aniston, I just know through trial and mainly error, that copious amounts of Loreal don't even help.

Because my Crohn's is flaring, I'm much more susceptible to germs, therefore all the other non-disease ailments that I can normally handle one at a time, are all paying a visit at once and my house (body) is completely overcrowed.

I can't concentrate on work, can't focus on anything for more than 10 minutes at a time and don't have the energy to carry out a conversation that involves me talking for any longer than about 2 minutes.

This morning on my way to work I said to myself, 'I can't do this anymore' - then internally mock-laughed at myself for how ridiculous and pathetic I sounded. In my head.

What alternative do you have, idiot?

Kill yourself? You couldn’t do that; who would feed the cats and remember to put the toilet seat down?

Hibernate?; pfft you'd lose your job and have to get up anyway to change the bedsheets so you might as well GET ON WITH IT.

This internal monologue plays over and over in my head like one of those excruitiating songs some DJ heard in Ibiza and decided to turn into a hit. All I hear is Radio Poo Poo.

So where to find some comfort and reassurance it'll all be OK when you feel this sick and hopeless? The doctor's office? From your loved ones? Motivational Quotes by Marilyn Monroe which may or may not be historicallly accurate?

Well any of the above, if they help you. Personally, 'motivational quotes' only 'motivate' me to punch things, and I generally find it really difficult talking to my loved ones about the mental side of Crohn's Disease. Possibly because it's often much harder to describe than the physical symptoms, and also more difficult to express without causing widespread panic amongst those who care for you. To quote 'Genie in A Bottle' by Christina Aguilera; 'my head is saying yes but my bowels are saying no'. (At least I'm pretty sure that's how it goes).  

When symptoms pummel you into the ground all day everyday, it's difficult to see past it. Mainly because as much as we want to get up and go, mentally; our bodies are literally betraying us. The main thing to hang onto, if you can, is that it will pass. It will get better. I know I can deal with this particular flare because I have before and will again. I don’t want to, and certainly wouldn’t choose to go through all this, but I sadly have to.

Having a positive attitude when everything around you (and inside you) feels so negative is very hard. It has nothing to do with bravery or with Marilyn Monroe words of inaccurate wisdom;  just acceptance and endurance. I accept I am sick and will be for life, and I will endure this flare-up and the next, and the next, because my cats will always need fed and my loo seat always need put down. Believe me on that one. 

Red, Red Whine

A major bug-bear of mine, is whining. Whining from well-seasoned whiners. Those infuriating people who spend the majority of their days waxing lyrical on how AWFUL everything and everyone is. Brutal.

I face these whiners every, single, day in life. At work, on the bus, at the bus stop, in queues (the aforementioned are both whiner HOTSPOTS). These people are everywhere; they may be complete strangers, colleagues, family, friends, maybe even YOU are one? Are you? YUK EWW YOU SMELL AND I DON’T LIKE YOU.  

They burrow into your happiness until there is nothing left for you to do but nod away in agreement as they air their gripes, silently wanting to end your own life in increasingly elaborate ways. Or maybe that's just me. They seem to take a perverse pleasure in complaining about anything and everything, and generally these 'things' are the most utterly mundane issues imaginable. 

Now, imagine if you will, one of these seasoned whiners becomes ill. They are actually diagnosed by a proper real-life doctor with degrees and a white coat and everything. (yes I know doctors don’t wear white coats anymore because they are too cool for school but just go with it). Imagine for a horrifying moment at what break-neck speed these individuals whining would reach the dizziest of heights never before experienced. A terrifying thought I'm sure you'd agree.

Well I hate to RUIN YOUR LIFE, but these people are real. They are walking amongst us. And much like the musical stylings of Mumford And Sons and zombies, they must be exterminated. Or at the very least their attitudes must be eliminated. For starters anyway. So how to do this? How to change the habits of a lifetime?

You don’t actually have to. Why should YOU be held accountable for their misery? You shouldn’t. You just have to make it clear that you, personally; wont tolerate it. If these particular whiners in your life are people for whom you actually care; then certain allowances can be made. For a period. If they are recently diagnosed with an illness for example, going through a traumatic break-up, grieving for someone or attending a Mumford and Sons gig. 

However it’s important you don’t allow them to wallow in misery. Constant negativity serves only to bring yourself and everyone around you down. Its tiring to be forced to endure someone's complaining everyday. it's also incredibly selfish to inflict it on those around you. What makes you think your problems are more important than anyone else's? Perhaps the person you are badgering with your incessant whining is actually in immeasurable pain, having the worst time imaginable at home, or has Mumford and Sons stuck on a loop on their iPod (last two are interchangeable there).

All I suggest, as someone who has been both the whiner and the whine-e , is to take stock of your daily conversations. Did you find yourself angry and frustrated at the end of the day? Do you feel you aren't being listened to as intently as you'd like? Maybe that’s because what you are talking about is continuously YOU. Think about how much you learnt about your friends, partner and colleagues in the past 24hrs. If your findings are minimal that’s probably because you were hogging the converstaion with your whining AGAIN. Then, slowly but surely CUT IT OUT.

 

BTW just a side note, but can you actually believe the number 27 was late again?! 20 minutes this time! 20 MINUTES! I could have been writing a blog post about whining in that time, or listening to Mumford and Sons entire back catalouge, or staving in the heads of unruly zombies or burning my haters online, or..