Stress This House

For a few weeks last year I went to see a counsellor. It was at a particularly low point in my life when nothing seemed to be going to plan. I was also struggling with my deteriorating health and trying to come to some sort of mutual arrangement with my disease that would allow us both more of an equal share of my body. (Obviously the end goal was ideally 60 – 40 in my favour but keep that under your hat I don’t want to rock the boat).

During my time with the counsellor, (let’s call her Carol, as that was her name), she quickly established that I was suffering from severe anxiety. She taught me all about the ‘fight or flight’ response; that anxiety at its core is an ‘in built’ response our bodies have to perceived threats. It allows us to do whatever we deem necessary to protect ourselves when we encounter ‘danger’. She explained that the origins of this response date back to ancient times when our ancestors lived amongst natural predators; e.g. a lion approaches looking to eat you, your fight or flight responses kick in and you either punch the lion square in its furry face (inadvisable) or bolt in the opposite direction faster than the speed of light to find a hiding place (more advisable).

Well this hypothetical tale is all well and good, but as I live in Central Scotland where not many lions tend to roam free, it didn’t quite hit home, so Carol elaborated and explained how anxiety affects the body in a more day-to-day sense.

So not many of you may know this, but I have a PHD in science and stuff I received from my studies at the Laboratoire Garnier or whatever, so allow me to share my (and Carol’s) vast knowledge with you.

Here comes the science bit.

So anxiety is like the bodies alarm that alerts you to these perceived ‘dangers’. It then sends chemical messages through your body like adrenalin, which causes your heart to beat faster and stronger, increasing your blood pressure. This in turn moves blood into the larger muscles you use to ‘fight’; many of your muscle groups tense up when this happens. Blood flow is diverted away from your skins surface causing paleness, tingling and cold feet and hands. Your breathing will also change, from shallow slow breaths from your stomach to rapid breathing higher in your chest and this can lead to dizziness and hot flushes. You’ll sweat, your pupils will dilate and your whole digestive system will shut down causing everything from a dry mouth to constipation.   

‘But, Professor Nicholls, how does all of this relate to IBD?’ I hear you cry. Well let me explain. Anxiety and IBD go hand in colon like your consultant on scope day. Ever felt yourself panic and perspire when in a strange place with unfamiliar surroundings and a sudden urge for the toilet? – ANXIETY. Ever been wheeled into the hospital and left in a ward with no explanation of what’s in store for you and your rear end? – ANXIOUS MUCH? Ever been walking to the shops to pick up your prescription when the local lion walks towards you? – ANXIETY OVERLOAD I CANNAE TAKE IT CAPTAIN ETCETC.

Most of our days as sufferers from IBD are spent thinking about our conditions, and anyone with a chronic illness will have experienced anxiety at some point in their lives. If not EVERYDAY, like myself. I am far more inclined to assume the worst case scenario Post-Crohn’s. I’m far more likely to fret about every potential situation that may occur ‘P.C’, and I’m faaaaaaaar more likely to plan every outing with military precision than I did ‘P.C’

So what can we do to combat this invisible menace thwarting our daily lives at every turn?  Here are a few tips from Carol (and myself; let’s not get ideas above our station CAROL), to help swat away the anxiety like the pest it is.

-          - Learn what triggers your anxiety - Perhaps keep a diary of what situation you were in when you felt yourself panic. Establish if there is a pattern to these episodes and allow yourself to plan these encounters better, or avoid them if possible. Is it something you can handle in a different way next time?

-          - Count to 10 slowly - Speaks for itself really. Try 20 if you are Scottish and speak at 500mph like myself. Breathe in and out on each count to slow down your breathing.

-          - Limit alcohol and caffeine - Both can trigger panic attacks and aggravate anxiety. Unless your anxiety trigger is alcohol or caffeine, then we’ll need to try something else, wont we CAROL.

-          - Accept you can’t control everything – Try to put your worries into perspective where possible, is it really as bad as you think? Don’t patronise me, CAROL.

-          - Get plenty of sleep – When it’s stressed your body needs additional rest, try to placate it where you can and get enough.

-          - Talk to someone – Tell friends and family you are feeling overwhelmed, let them know how they can help you. Talk to your doctor or a therapist for professional help. You can even call me, Carol, on 0300 20… WOAH, WOAH! BACK OFF CAROL!

Sorry about that. Carol gets ahead of herself sometimes. It makes me anxious, but I faced it head on and I feel better about that. Wait a gosh-darned minute... Reverse psychology? Carol you absolute genius!

Anyway, hope this little blog-therapy session has helped YOU understand how to beat YOUR anxiety. Hope it hasn’t made you anxious as my writing often does. Carol and I are off to drive off the edge of a cliff like Thelma and Louise; she says it’s therapeutic and not at all terrifying and deadly! She knows her stuff does Carol! 

S

Blue Monday

Ever get that feeling when you wake up and feel what I can only describe as ‘nothingy’? No enthusiasm for the day ahead, no happiness when you see the love of your life lying beside you, not a twinge of joy when you hear your two cats cuddle up to you blatantly toying with your affections for a slice of ham? No? Just me?
I wake up like this more often than I’d like. I’m working on it. I'm usually glad I wake up. I'm relieved I'm not sad, or angry, or depressed enough that I don't want to wake up. I've thankfully never felt that way. But knowing that you don't want your life to be over generally isn’t a massive confidence boost, and doesn't really make it any easier to motivate yourself for the day ahead.

Depression is a strange creature, it’s a ‘black dog’, it’s ‘a chip on your shoulder’, and it’s a motivational Facebook quote waiting to happen. But to me it’s strange, because regardless of how it’s portrayed, it's not always an overwhelming cloud of sadness hanging over you. Its ‘invisible’, like so many chronic illnesses, therefore lots of us can act ‘well’, and smile, and pretend everything is as it should be. When it generally isn’t. We often do that because it’s easier than having to explain how deeply unhappy you truly feel. That leads to several scenarios’ we don’t really have the energy or want to deal with. Here are my top 3.

1.       The sympathetic head tilt...

We all know the one. It’s both infuriating and disappointing in equal measure. It’s also expected and semi-understandable, which makes it even more exasperating when it happens. It makes people with mental illness and/or chronic illness feel ‘babied’ and that we need your sympathy and worse, pity.

2.       The patronising advice…

Please don’t tell people with chronic illness what they should be doing to fix themselves. Although you may think it’s helpful, it’s insulting and patronising in equal measure. Plus believe me, we’ve heard/tried/discounted it ALL before. See also; “cheer up” = worthy of the death penalty.

3.       The obvious boredom…

This refers to the attitude some people have when they become aware we haven’t miraculously ‘got better’ overnight. As we know, mental health issues and chronic illness doesn’t allow for a quick-fix. It requires long-term treatment and adaption, and a little understanding from those around us.

Continual health struggles (mental and physical) can feel like spending everyday wading through treacle. Simple tasks become mammoth feats of endurance and getting a handle on your emotions can be as intangible as me winning the love of Jon Hamm. It can be hard to find the joy in the things which on paper should be joy…full.  When you learn to accept your lot it becomes easier to deal with. To treat your conditions with the care and consideration they deserve, and to be a little kinder to yourself when you’re struggling.

But I suppose this post doesn't really have a nice neat ending like they usually do. That's because life with depression and chronic illness doesn't have a neat ending, or a logical conclusion. There is no ending, just adapting. And that's ok. Because that's the best we can do. 

Dear 'John' Letter

I recently re-read my old diaries (or ‘journals’ if you’re American), from just as I was getting sick, and was shocked to discover how lost and confused I was. I was utterly miserable, sad, raging at the world and my situation. There was also a noticeably marked increase in the use of capital letters and exclamation marks strewn across the pages…

I realised I can’t be alone in these feelings, and that there will be countless others feeling the feelings and overusing the Caps Lock just as I did all those years ago. I decided to write a letter to my pre-diagnosis self. I thought it might be cathartic somehow, like those rituals of ridding yourself of bad juju where you burn photographs of ex-boyfriends and set fire to their homes and cars, that kind of thing.

So here goes:

Dear Kath (aged 24),

This might seem a little bit weird, me writing to you (well, me) like this, but I’m you; from the future. I know, I know, it seems mad right? But I borrowed a TARDIS and blah blah blah whatever works.

Anyway I’m writing to tell you that I know you are having a really hard time right now and that you’re doing just fine. You are sick, angry, sad and everything in-between, but all you are feeling is part of the grieving process. On top of the constant nausea, vomiting, unbearable pain, running to the loo, and the inability to eat/sleep/work, you are also dealing with the loss of your old life. You are stressed about losing everything that is important to you; your relationship, your friends, your job, your dignity. Well I just want to tell you that you won’t. At least not the first 3, the last one is a longer and more trying process.

Stop being so hard on yourself. Stop blaming yourself for this; you didn’t give yourself this disease. Nothing you could have done would have stopped this happening to you. The same goes for your parents; they are not responsible for your illness. I know you don’t blame them, but they might be blaming themselves in some way, so try to reassure them.

You might be focused on the negative stuff right now and that’s understandable – it’s BAD. But you should try, when you’re able, to see beyond this initial horror. Focus when you can on what YOU can do to help yourself. Don’t rage and weep and wail about where you perceive the doctors to be failing, (OK well you can a little but let’s not bankrupt a tissue factory), try and begin to tentatively educate yourself. I promise you it’s not all as scary as it seems. You feel out of your depth and intimidated right now, but trust me, the more you know about your body and this condition the easier it will become. Understanding why you feel the way you do will help you adapt to it. But do be careful not to overload yourself; steer clear of horror-stories and don’t let anyone scare you. It will happen; there is a strange culture of ‘competitive suffering’ within the world of chronic illness so try not to get drawn into that. Focus on your recovery and don’t compare your ‘journey’ [I know you hate that phrase, I do too, this isn’t Pop Idol] with anyone else’s.

As future ‘you’, I really wish I could tell you that life is amazing now, and that you’re magically cured and that Jon Hamm is your husband, but I can’t. I will say that life is certainly better, doctors are still beavering away on that elusive ‘cure’, and Jon Hamm has only taken out 3 restraining orders against me so far.

Look after ourselves,

Love and kittens,

Kath (aged 31 and 11months) 

Cure The One That I Want

Following on from my post on how irritating I find “It could be worse…”; pet peeves of mine in living with chronic illness are positively abundant. A rich and plentiful vein of these daft phrases flowing through the arms of the sick-free and I'm not sure where I'm going with this analogy but what I'm saying is THERE'S LOTS OF THEM. 

One of the most infuriating for me personally, (and one I've found myself guilty of using once too often); is "You can do anything you want!" illness or not.

Be who you want to be despite your illness!

Reach for the stars!

Climb every mountain!

Baby you’re a firework! Etc. ETC.

This phrase of supposed empowerment, encouraging the patient they can live the life they did before their disease struck, simply isn't always true. 

Certainly not in my case; I can’t of course speak for all of you. Although I am Scottish so I can most definitely speak at least 500 times the speed of most of you.

It would be wonderful if we could all follow our dreams and dance the night away and eat endless amounts of cheese without fear of repercussions, but it’s just not doable. 

Sometimes, for example, I want to have some breakfast then get on the bus to work without fearing I'm going to explode from any available orifice at any given moment. 

I can't. 

I'm filled with dread and anxiety every time I know I'm not within spitting distance of a toilet. That fact alone stops me from doing lots of things I'd like to do. 

I'd like to be able to go to work without worrying about being fired if I need to go home sick. 

I’d like not to sit in the middle of the office and have to time my conversations in unison with my bowels so I can complete my work before I have to dart to the toilet and/or vomit. 

But I can’t. 

And all of that is OK, it really is. It’s my life now, and I've learnt to adapt. My body is constantly changing and my disease is a part of me I really can’t ignore. 

I did for a while feel a massive amount of anger at having this disease. I still do from time to time. I get frustrated at the fact that my illness DOES stop me doing things I want to. I then get doubly frustrated at the fact that by magazines, articles and fellow patients I often seem led to believe I allow this to happen. 

I don’t. The majority of us don't. 

I don’t ever lie down to my illness and let it rule my life. I do lie down to those moments in which I need to lie down. So that I can have more of the moments I want. A means to an end. I look after myself when I can instead of pushing myself at every opportunity to spite my illness.

This illness is INSIDE ME; I can't understand why fighting against your own body is perceived as productive. 

Adapting to your life with Crohn’s Disease or any other chronic illness, is very difficult, it’s a constant challenge and a constant source of frustration for the patient and everyone around us. Our illness affects every aspect of our lives and we don’t need to be berated if we choose to take it a little easier from time to time. If you have ever tried to squeeze sickness into your life you will understand how much precedence it can take. Allow it a little room and leave some for yourself to do what you want. 

Unless what you want is to run a marathon followed by a dance-a-thon followed by a cheese eating contest in a building without toilets. 

Remission Impossible

Yesterday I got a little bit of Crohn’s-related good news! Yippee! Long overdue, and the first time I've been able to report anything even approaching happy bowel s in…well EVER.

 The results from my latest Calprotectin sample, (my stool, or poo to the uninitiated) show that my Crohn’s Disease is currently inactive. INACTIVE. This perhaps doesn't sound like much to those of you without the disease, but let me tell you this: for me, it’s BRILLIANT. This is the first time since my diagnosis that my disease has been ‘inactive’. Up until now it’s over-active. It’s never stopped. It’s never been lazy a day in its life. It’s had ADHD. You get the general idea.

To some people they will call this period of inactivity, ‘remission’ or something similar. I'm not sure how I feel about that, mainly because I know I'm not cured. Temporarily or otherwise. I’m not ‘better’ and I'm not ever going to be. In no way is any of that intended to sound negative, because I'm honestly chuffed, but I also don’t want to get ahead of myself and assume the rest of the next few days/weeks/months will be a disease-free breeze. I also don’t want everyone around me to assume the same. I need to be honest with myself and avoid falling into the trap of setting myself up for a sickly fall. I've been there too many times and it’s more disheartening than learning Jon Hamm isn't single.

I also don’t want to be perceived to be unkind or insensitive to those of you who are really struggling at the minute, because I know how hard it can be to hear happy tales when you feel inches from vomiting/destroying the porcelain/death. I’d just like to share my happiness at being ‘OK’ for the first time in my life. That’s alright isn't it? It’s positive. 

It’s something not normally associated with chronic illness as positivity isn't a choice, it’s a trial. 

Living with Crohn’s has always been a day-to-day challenge, every day is uncertain and you generally live under a cloud of anxiety, from the banal of ‘OMG I might need the toilet in a hurry and I’ll be on this bus for an hour’ to the terrifying ‘I really don’t want to die’.

Without exaggeration, I've spent years wondering how to adapt my life to constant pain. I've accepted agony, nausea and everything else that goes along with this illness as part of my new existence and struggled to be normal around it. I've berated myself for wallowing, I've been racked with constant guilt at becoming a cause of worry or even a burden on my family and friends, I’ve had parts of my internal organs removed and I’ve come close to losing my job several times due to this disease. 

What I'm saying is, it’s been really hard, and I'm looking forward to wallowing in feeling OK for a wee while. I don’t really even care how long it lasts, as long as I get to remember what it feels like not to have the bowels of Satan grumbling within me.

So I hope you are all well enough to join me in raising a delicious glass of bowel prep at my little glimpse of happiness! I know I’ll be toasting to all of you! xox 

For Better or for Worse

The other day someone said those three immortal words to me. No, not THOSE words you old romantics, (although those ones are nicer); it was that three words that strike misery and resentment into the heart of every sick person;

“…Could be worse...”

Now,  much like that other ‘three words’; “I love you”, being bellowed at you by a man peering through your window wearing a wig made of your hair as he’s forcibly restrained by police, “could be worse” leaves the person on the receiving end of it feeling a bit dejected and perhaps borderline terrified.

It implies several things to those of us dealing with illness every day, none of which are particularly cheering. In the main these are what I generally hear when someone tells me it ‘could be worse’;   

1.       You could be DEAD so cheer up eh?

2.       There are SOOOOO many sicker people that you out there, so stop making a fuss.

3.       You aren’t sick enough in the grand scheme of things so it’s probably best for everyone if you shut your whining mouth.

4.       Stop being so dramatic!

5.       I’m jealous of you for reasons I can’t work out for myself and don’t fully understand so I’m going to be unkind to you in a backwards way.

6.       I don’t like you talking about your illness in my presence.

Fun eh?! Now I’d venture it’s quite clear to see why that phrase is not at all helpful or encouraging. If that is ever the intention when saying it anyway, (and I’m sure for some people it is!) It’s said as just one of those ‘things people say’ because they are raised hearing it and don’t know what else to risk in that environment. Much like casual racism and jokes about mother-in-laws before it, it’s tired and redundant and should have been exterminated before man learned to create fire. By the way I’m sure it was a woman who gave him the idea in the first place, a man can’t do anything by himself! Eh!  hah ah hha ahaa. You know, that sort of thing.

So, by now you might be saying to yourself, ‘Kath, CALM DOWN DEAR, it’s not the end of the world, it’s just a figure of speech, I mean it could be wors…’

WOAH THERE TIGER.

Just hold that thought before I am arrested for grievous bodily harm. I may be sensitive and somewhat defensive about my condition, and that’s wholly my right. It’s not my right to get all up in your grill about it and preach in a holier than thou fashion about what you should, and shouldn’t say. This is just a friendly offer of advice and guidance in how little phrases which may seem insignificant to you can cause a world of frustration to others. I just feel it’s my duty to remind those of you with and without an illness that words can be cruel and hurtful and minimising something that to someone is a cause of massive devastation, isn’t smart.

When you are being flippant and making off the cuff remarks about someone and their suffering, remember, it could always be worse!

In the boot of a car. At the bottom of a cliff. With no life boat. And no chance of survival.

OK, Love you, bye! xox

Crohn We Still be Friends?

It's impossible not to assume your relationships, romantic or otherwise, will change in living with a chronic illness. For starters, YOU have changed; whether you choose to accept it or not. You will find your tolerance for certain types of people and/or behaviour has changed, and often that means that the places in which there was previously room in your life for certain people/nonsense has been filled with other, more dramatic but decidedly less fun stuff.  

There will be friends, and other members of your intimate circle (and intimate circles will become a BIG DEAL henceforth), that will start to drift away. They won’t be able to cope with having a ‘sick’ friend. They won’t understand, or perhaps even try, and that’s ok.

It really is.

Or at least it will be. At first it will be pretty traumatic and it will feel as though it’s your fault. It’s you pushing them away with your illness, it’s you constantly complaining, it’s you cancelling plans, and it’s you who can’t talk about anything else but sickness.

IT’S NOT YOU.

What’s happening to your mind and body from the onset of illness is heart-breaking and out of your control. It’s a time of massive change in your life and it’s possibly a bridge too far in terms of lifestyle modifications for some people on the outside to deal with.

I’ve been told by ‘friends’ that I’m ‘playing the Crohn’s card’ when I’m too unwell to socialise or have to leave a party early. I’ve been left out of certain events because it’s been assumed I wouldn’t want to attend or would be too unwell. Let me say that this is not (always) done out of selfishness, it’s generally kindness or just a lack of ability to find the right words. There of course is a fine line when it comes to friendship with a chronically ill person – it’s not all on you as the friend; it’s about communication and showing you are open to adapting your own plans occasionally to allow us to feel a little more comfortable.

Of course, 99% of us don’t actually WANT to be ill, and want to enjoy life to the full like we did pre-disease, but it’s just not always possible. (The 1% there is left open for hypochondriacs and/or those who revel in misery for reasons unknown to me). There are things you can no longer do, despite your best efforts, and activities you can no longer be a part of. That’s frustrating and upsetting in most cases, but in the main it’s a long and arduous process of acceptance in learning what you can do. Let me make it clear – if you think it’s hard on you when we can’t meet you for drinks/ dancing/ intercourse/ breaking into banks, it’s even harder for us.

It’s depressing and emotionally debilitating when our bodies stop us from being around the people we love. But in my years of living with sickness, I’ve come to realise the importance of self-care. That doesn’t mean we don’t care about you as our loved ones, and your needs, because we really do. We just learn to prioritise. And knowing if you have two shots one night that you’ll then be incapacitated for the next 48hrs, isn’t fun. (Anymore). 

Believe me, if you know how it feels to be hungover, imagine that but with diseased intestines thrown into the mix; the worst internal-cocktail known to man. And I’ve eaten a deep fried Mars Bar. 

Stall That Jazz

I remember vividly the first time I knew (and accepted), that I was seriously ill. 

I was at a gig with my partner, we'd gone to see Gil Scott Heron; my bf was a huge fan and it might have been (and subsequently was) the last time we could see him in Scotland/alive. I felt relatively OK on the way there, I was looking forward to it, but as we stood in the hall and the crowd began to build around us I started to feel a sense of foreboding. It's something I feel a lot of the time in crowds, anxious and an increasing sense of panic; what if I can't get out of here? What if I'm sick? Or faint? What if I ruin the night for him? 

I was feeling claustrophobic and unsteady on my feet, and wondering why in the name of all things holy I hadn't booked us seats instead of standing. I usually can't stand without sitting down for more than about 15 minutes so gigs are often a huge challenge. I usually dance away the fear/nausea but at this type of gig it was more about quietly 'appreciating' the jazz. 

I hate jazz. Don’t get me wrong, I don’t mean hate in the sense of hating brown sauce on chips or when hating it when someone eats with their mouth open; I mean full on, unadulterated hatred. 

I went to this gig with my beloved because he doesn't hate it, quite the opposite in fact, and what is a relationship if not putting yourself through your own version of hell to please someone you love? 

I appreciated I needed to SIT DOWN. About half an hour in and I was feeling awful, major nausea and dizziness. I tried to focus on the man on stage talking/jazzing. I tried to hold onto my bf, feel my feet solidly on the ground and breathe in and out but it was hopeless, before I knew it I was a slurring mess, mumbling to my bf I was about to pass out. 

And I did. 

In the most dignified way possible; in a room full of thousands of people and after having thrown up all over myself. My bf and some lovely stranger apparently helped me out of the crowd and to a First Aider. I came round and was totally disoriented and FREAKED OUT. Where was I? Why did my bf look ashen? Why did I STINK? 

I was at a gig and had passed out and thrown up – naturally the first aid staff assumed I was a drunk/high on drugs/both of the above. They knew I wasn't high on JAZZ that's for sure! hahaha :( 

They checked I was alive and sent me on my way. (Which was back into a sweaty room surrounded by thousands of sweaty jazz loving people wearing berets and flat caps and drinking speciality beers). Because I didn't want to have completely ruined my partners evening, I insisted we stay to watch the end of the gig. We stood out from the crowd so I could get some air and I waited patiently for my jazz-infested ordeal to be over. I stunk of vomit. I had sacrificed both my favourite cardigan and scarf to the bin as they were beyond help. I needed to be anywhere but here. But I stayed. 

We left and walked out into the night, I felt like the Worlds Most Disgusting Creature 2010 and my bf handled me like a china doll, albeit a foul smelling one. 

A few months later I was having life-saving surgery. I am a lot more sensible now; I know my limitations and without sounding negative, I know when to admit defeat. There are things I’d love to be able to do – but there are more days alive I’d like to have than nights out, so one outweighs pushing myself for the other. 

I have also gone cold turkey on jazz since that fateful night, and my ears have never been happier.