Ari You Gonna Be My Girl?

In a few days my friend Ari is coming all the way from Argentina to holiday in Scotland (and see me). She’ll be staying with my partner and I for lots of the trip and we will even go away on a little mini holiday of our own in the middle. This will be the first time we’ve ‘met’ face to face after talking on the internet for maybe 3 or 4 years.

We chat EVERYDAY.

That’s rare in this day and age (and certainly for me) probably because I don’t feel that interesting or engaging most of the time. Yet this friendship is easy, fun and loving. It puts me at ease and there are no judgements on either side. She just makes me laugh and feel precious and our bond feels effortless. I can’t wait to meet my darling Ari in real life (and prove to everyone she isn’t a 45 year old man from Croydon).

Although I feel I know Ari very well and am not in any way nervous about meeting her, I’ve been thinking about how bold a move it is for her to fly halfway across the world for the sake of a friendship (and vegetarian haggis obvs). Friendships often get harder to make as we age so that’s one of many reasons why this one is so important to me. It came into my life at just the right time and now feels like it (she) has always been there.

I’m in my 30’s now.

So as these things do, many of my childhood and teenage friendships have dissipated over time; wrapped themselves up in quite a neat and healthy bow. Without meaning to sound harsh, some friendships just serve a purpose at a certain time and struggle to survive beyond their particular environment. 

Work relationships for example: once a close colleague leaves, or you move on it can be a tricky tightrope to walk in terms of whether or not you should maintain what may essentially have been kinship over a water-cooler and not much more. Thank-fully I’ve made a few AMAZING friends through work in my own life and I can’t see those relationships ever fading. I think the feeling is mutual on both sides and that’s comforting (and pressure free).

As most people with chronic illness will understand, maintaining relationships can be hard, and often disappointing. When people we love prove themselves to be flaky or uninterested in what is essentially a massive part of our lives it can be a bitter pill to swallow. And we already have enough of them to ingest.

Friends who love us will make an attempt to understand what we are going through, they will check in with us regularly and make us laugh, or simply give us a shoulder to cry on when we need it. With us returning the favour of course. Friendships when you are sick should still be a two-way street; we don’t become patients rather than people, but they may just need some adaption.

When anything changes in life we try our best to accept, adapt and move on, and the same goes for pals. We become adaptable. Adaptipals if you will. You won’t? No problem, I still love you, pals. xo

Ch-Ch-Ch-Ch-Changes

I’ve been thinking a lot lately about how much a chronic illness can change a person. Typically this phenomenon isn’t unique to a diagnosis of illness of course; a person can ‘change’ for countless reasons. But one of the most substantial is a sudden and drastic alteration to our life. An unexpected shock. A bombshell.

Of course not all diagnoses of illness follow this ‘bombshell’ route – many of us are eventually diagnosed with something after a long and protracted period of sickness. Symptoms build and we experience all the ups and downs and confusion that goes alongside being continually ill, rather than just waking up one morning and finding ourselves ‘diseased’.

It might not seem much of a revelation to talk about a person changing due to illness. It’s not. Being told you have an illness which is incurable and/or will be a continual struggle for the remainder of your life has a huge mental and physical impact on a person.

The bright side of this process of change is that said change doesn’t have to be negative. That’s something I certainly found difficult to grasp for a long time after my own diagnosis; I focused solely on what and whom I’d lost, what I could no longer do and what this illness had done to strip away from who I used to be. It made me sad, frustrated, despondent and so, so angry.

Anger is powerful.

It can be a cause for action, a good catalyst to spur us into productive fight – we use our anger at the injustices of the world to fight back against governments, against unfair laws, against sexism, racism, bigotry of any kind. So undoubtedly anger is not always a bad thing. For someone like myself who has routinely hated confrontation I’ve tried to appreciate that anger is something that cannot (and shouldn’t) be contained forever. It has to have an outlet, and that choice of outlet should be one of our choosing which doesn’t cause damage to you, others or your own heart.

What I mean by that is I’ve been on the receiving end of anger which hasn’t been funnelled in a safe way – where it comes out as spat-out obscenities you’ll regret later, where it comes out through hasty and stupid choices, or through a clenched fist. None of these scenarios end well, and they certainly don’t lend to us being well.

Anger for me is a part of life.

I’m angry a lot and I wish I weren’t. I have a lot not to be angry about – I have a job I enjoy, I get to write, I have a loving family and friends, and I have a partner who without whom I’d surely turn to dust.

But I am angry because I have a chronic illness that causes me to spend my life in pain. I have learned (as best as anyone can) to live and adapt to it, but my condition is ever changing and unpredictable. I’m angry because I am someone who now struggles massively with anxiety and suffers from depression. That may all have come to my door with or without Crohn’s, but nevertheless it’s here and it’s the ‘thing’ I’m angry at.

I don’t think I’ll ever stop feeling some form of anger at being ‘sick’, but like every aspect of this illness what matters now is how I cope with it. How I choose to act and how I live despite it. I hope that that is without bitterness and resentment, because as much as I wish I wasn’t a permanent patient, I am grateful for whom I have ‘changed’ into throughout my sickly-life.

My heart is full of love and lust for life. I want to live life to the full and I get angry and frustrated when it feels like that life is being stunted or shortened. But as I can’t use my anger to paint banners and march to Parliament to rid myself (and all of you) of this illness, I can use it to remind myself that simply feeling it means I’m alive. If that isn’t something to fight for I don’t know what is.

Back On The Pain Gang

Like many, many people with an incurable illness I suffer from chronic pain. 

Pain is not often the crux of my writing because I tend to favour focusing on talking about things I feel I have some semblance of control over; like my relationships, my mental health and my attitude towards my illness. 

Pain is a whole other topic that I don't usually discuss in detail for many reasons; namely because I know a lot of people who are new to this disease read my ramblings and I don't want to terrify them, I don't like upsetting my loved ones, and I like to not think about pain when I can. Often it's none of those things and I simply can't deal with anything but my pain. 

Pain is often nigh on impossible to quantify. It's also incredibly difficult to explain to someone on the outside of your own car-crash carcass. 

My partner asked me earlier if I was OK when I truly wasn't and I said "Fine... actually no just in excruciating pain" which made him laugh - not because he finds my misfortune amusing, (he's not Christian Grey), but it was a hollow laugh where he acknowledged a bit of relief at me finally catching myself and being honest. 

The reason the "I'm fine" often comes into play is because it's easier. Not in the long term I grant you, but in the short omg-i-think-im-dying term. It's exhausting being in pain and the last thing we generally want to do is talk about it. 

My hair hurts today. My teeth hurt. How do you explain that to someone who doesn't experience pain on a regular if not daily basis? They think you are overreacting. They don't have anything to compare it to so they work backwards from their own experience and assume you must be exaggerating. We see you disbelieve us. We see you pity us. And we resent it. 

We are forced to talk about pain, namely describe it, a lot. We have to do it to help our doctors solve any medical mysteries, to get the pain relief we need, to express why we are unable to do something/someone.  

We have to tell if it's 'dull', 'stabbing', 'sharp', 'persistent' and various other words used to describe Law & Order. I don't really know what the majority of these words mean in relation to what I feel but I have to use something; it seems screaming incoherently and performing an elaborate death rattle gets you ejected from the ward and I can't risk that happening again. 

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 sentence 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. 

Pain is subjective and can be all encompassing. Tolerances of pain differ from person to person and can even change over time. When someone is chronically ill pain is a daily occurrence and something we don't always wish to wax lyrical about. That's why we try to adapt our lives around it. Sometimes that's not always possible but on good days, good moments, it is. 

We might not tell you we're in pain sometimes and that's OK. It's our choice and it might just be our way of distracting ourselves; so please be patient and don't expect miracles from us. 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' again once the worst is over 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.

A Little Bump and Kind

I don’t have daughters. I don’t have children at all for that matter. I have a huge dog, a cat and am soon to have another little kitten brought into our fur-filled household. All of this aside, I do have friends with beautiful babies who are blossoming into incredible little people before my eyes. I don’t doubt that perhaps one day I’ll desire a family of my own; I’m in a committed long term relationship and it’s the ‘done thing’ after all; but for now I’m happy as I am. We’re happy as we are. If that changes, then so be it, but for now; my womb my business.

It is odd the interest in your reproductive organs that grows as we age. I haven’t been ‘blessed’ with a child. I haven’t ‘realised’ it’s what I want yet. I’ll ‘never know until I do it’. It’s common to be left feeling patronised and like a borderline oddity when everyone around you seems to understand what you want and need better than you do.

Childless women are just that for a myriad of different reasons. Some of us are not in secure relationships, some of us are unable to conceive, some of our partners have issues with fertility, and some of us simply don’t want to have a child. I know that is an alien concept to so, so many women. I know that from 99% of the conversations I have with mothers. Thank-fully, my own close friends who have families are much more accepting of what I choose to do with my vagina, and that’s great. They understand that children are not for everyone and that many of us can still (incredibly) lead happy and fulfilled lives without disrupting our sleep patterns and tearing our genitals to shreds.

That said I do feel a strange kinship with my friends who have children. Although it’s not necessarily something I want for my own future, the love I feel for their spawn often takes me by surprise. It helps me understand the unconditional nature of a mothers love in a small way.

I feel the same pull from the young women who message me about their illness. Some to talk about a diagnosis or some just to let me know they appreciate having someone else speak up about IBD/mental health. I feel a responsibility to the girls and young women who follow my blog to be respectful of their choices. Their fears are universal and have been felt by all of us to some degree. I don’t have a ‘fear’ of starting a family I should clarify; I just don’t want to. That doesn’t mean I don’t deserve the same respect as a mother receives. My choices shouldn’t be dismissed or belittled for not conforming to some sort of perceived ideal, and this serves to remind me how important it is that we, as adult women; aunts, friends, mothers; listen and respect the choices of our ‘daughters’.

When we talk to one another we should try harder to listen, truly listen, to what is said (and often what is unsaid) before judging. We all do it, I’m not claiming to be as pure as the driven snow here, but I do think it’s now more important than ever we help young women to grow accepting of themselves and one another. Life is hard and growing up even harder, throw into the mix the possibility of a chronic/mental illness and it can be difficult to see past the next few hours within the day let alone make choices that will affect the rest of our lives. 

So my ‘motherly’ advice (from a certified non-mother) is to simply be kind to your kind.

Today is National Kindness Day (apparently), so what better day to start! xo

Fake That

Hello.

I’ve been thinking a lot lately about ‘faking it’. No, not in the bedroom; my years of shrieking in faux pleasure to please someone are long gone since I met a man who knows what goes where (and cares if I experience joy). What I refer to is more the daily ‘faking it’ we do in living with a chronic illness. We fake feeling ‘well’ everyday of our lives.

I personally haven’t been around 'online' for a wee while. You might have noticed; you might not have. That’s fine. People come and go out of our lives all the time and especially in this digital age it’s sometimes even harder to keep on top of all the people in our real lives and in our phones. So I pre-empt this blog with that wee nugget so the people I love don’t feel any guilt for maybe not having noticed the fact that I’ve been struggling for quite a while now.

The main reason people haven’t noticed is because I’m a good actress. I know how to act happy and well because I’ve been doing it for so long. So long in fact that I often don’t know how not to ‘act’ and just ‘be’. The reason this has been playing on my mind lately is because it’s something I worry has slowly but surely assimilated itself into all areas of my life without my being fully aware of it.  This is a long winded way of telling you all I've been feeling blue for a while now. I've been finding life and everything in it borderline impossible to bear and I’ve become tired of hiding that from everyone.

 I am the Queen of advocating that we should all be open and honest about our feelings, our illnesses, and speak without fear and without shame about our mental health. Advice I haven’t truly taken myself for quite a while now. The truth is I am feeling a bit crushed by constant and crippling anxiety. I've been unable to feel much of anything. I've been 'play-acting' my emotions. When the truth is that I am not sure what to feel and when. I perhaps portray what I *think* people want to see or what will help me navigate a situation. I paint on a smile when I need to and it fades as quickly as it comes. For a while there I couldn't remember when I last felt happy for more than a fleeting moment.

That, of course, has absolutely no bearing on the people around me. No one ‘makes’ someone depressed. There are aspects of behaviour that can of course exacerbate an already anxious persons' mood but none of that is applicable in my case. No one has done this to me. I haven’t even done it to myself; I’ve just maybe let it happen without interference.

 So what to do? Please, please, don’t pity me. I've just been taking a little break from everything to get myself well. It’s hard to stop and take stock of what is making you unhappy and I’m doing that. I’m on medication to help my muddled head and reduce my anxiety and I’ll get there. I'm happier now than I have been in a while just admitting it all. It's good to speak up when you're able, so please do if you're struggling. It's so much more of an achievement than you might think.

 So thank-you, and I love you, and I’ll see you soon xo

 

Nerve Agent

I’ve always been shy.

It took me a good few weeks to stop weeping for my Mum aged 5 starting school. I would go beetroot-faced when asked a question in front of the class aged 10, and I’d laugh nervously like a borderline lunatic when a boy so much as looked at me, aged 15.

 

Most of that has dissipated these days, thankfully. Although I do still cling onto my Mum’s foot every time she attempts to leave my house, but like the majority of us, I’m a work in progress.

 

Those childhood nerves and inhibitions may have subsided gradually as I’ve aged and been opened up to more experiences and seen a little more of the world, but they seem to have been replaced with something almost even more intrusive;

 

Anxiety.

 

This wasn’t something I was bothered by to a massive degree ‘pre-Crohn’s’. But it’s something I now often struggle to get a handle on. Unlike my Mothers’ ankle. It certainly wasn’t something I’d have considered to be an ‘issue’ either until I realised it was impacting my own life.

 

There is a big difference from saying you are an ‘anxious person’ to actually trying to make a dent in coping with it.

My anxiety manifests itself in many ways:

 

• I’ll overthink anything and everything.
• I’ll work myself up into a frenzy about the ‘what if’s’ of any given situation.
• I’ll put off doing things through nerves.
• I’ll stare at the phone until it stops ringing.
• I’ll talk and babble too much to fill what I’ve decided is an ‘awkward’ silence.

 

Anxiety is a common issue with those of us with chronic illness because we spend a lot of our time thinking about ‘it’. We have a lot of factors to… factor in to our life alongside the normal day to day activities that we all undertake. Whether the issue is with mobility, pain, bathroom worries or mental health issues; we all have our own fears and apprehensions surrounding our illness.

 

Of course getting stuck in our own heads is often dangerous and isolating, so step one in overcoming the worst of this is really in talking about our worries. When we do this we often find they are sorely unfounded and based on nothing more than our overactive imaginations. Not always, but often. When we decide how someone is feeling/thinking about us, we also insult them, and eliminate the chance of them proving us wrong. We push people away through using our own fears as a barrier. Look, I don’t have the answers on how to cope with this, I just want to share with you that you’re not alone in feeling like an insane person from time to time!

 

What works for me may not work for you, but talking is really important. Don’t be afraid to admit you are scared and nervous and that its overwhelming you. It so much more common than you think. People who love you and/or doctors can help to give you clarity on your feelings. Stop beating yourself up for something that is simply a factor of an ongoing illness. It’s not shameful to admit you are mentally struggling; quite the opposite in fact.

 

So the next time someone from Accounts doesn’t say ‘hi’ back to you in the morning at work, maybe don’t spend all day wondering what horrific atrocity you’ve committed against them and accept that maybe they just didn’t hear you.

 

That is the case isn’t it Linda? You just didn’t hear me? LINDA…?!?

Diseasey Peasy

I receive quite a lot of messages and emails from young people who have recently been diagnosed with IBD. It makes me happy and sad in equal measure; happy that they reaching out to talk to someone about their worries (albeit a decidedly unqualified person like me), and sad because they are struggling with something incredibly distressing on top of all the usual, more common yet challenging aspects of ‘growing up’. Some of them are just looking for reassurance and advice on how best to live with a chronic illness; some of them don’t want to live at all. 

 

I do of course reply to these messages, as quickly as I can and with as much information as I can, but I often feel at a loss as to what to say to soothe a young man or woman who’s experiences perhaps mirror my own fears from several years earlier. I try to think about what I wanted to hear when I was diagnosed: what might have made the whole thing a little less scary, and I hit a frustrating brick wall.

 

I was lucky myself in the sense that I was (officially) diagnosed when I was in my mid-twenties. I certainly didn’t feel lucky of course; I was heartbroken, confused and devastated. I imagine it feels that way irrespective of your age mind you, we all have different tolerances and being told you are never getting better stings regardless of what stage in your life you are at.

 

So I suppose what I’m clumsily trying to express is that I feel at a loss at times to help those who are experiencing what I have. What I am.

 

Then I try to take a breath and remember that all I wanted to hear when I was first sick was that life would go on. I still do. Don’t get me wrong – I undoubtedly would not have thanked anyone for spouting that at me at the time of my diagnosis; I didn’t want life to go on if I’d have to carry this disease with me for the remainder of it. I didn’t believe it and I couldn’t accept it. But as I’ve grown alongside my illness (I’m now in my mid-thirties), I’ve found my outlook has changed along with my priorities. All I care about now is my own happiness and that of those around me. My illness is still a huge part of my life and always will be, one that can consume me from time to time, but those moments pass. Chronic illness is a slippery path whereby sometimes we wobble a little, sometimes we can’t get on an even keel, but nevertheless we never lie down to it; we don’t have that luxury.

 

But the truth is, our life does go on. We are incredibly lucky in that sense. We will have to make adaptions to those lives to make room for this illness, we don’t like that but it’s easier than trying to bat it away like a pesky wasp at a jam sandwich. We have to accept it and stop fighting its basic existence. Denial is fruitless and prolongs the period of time it takes to come to terms with having an incurable illness.

 

Don’t get me wrong here though, I’m not implying ANY of this is easy; sometimes I even have a little cry myself when I feel low – I often feel I’m back to square one with this and the frustration of that can be overwhelming. But if I’ve learnt anything since I was diagnosed it’s the importance of talking. Talk to your parents, your friends, your nurse, talk to me! Don’t push yourself into it – there’s no shame in that either; the last thing I wanted to do at first was talk about this with anyone, but eventually that changed and it became more of a comfort and camaraderie than a fear.

 

So please remember that you are not alone.

 

Things will get easier and you will learn to live with this. Like every challenge in life it feels monumental at first, but the more steps you take towards dealing with it the easier it becomes. I’m not in any way saying I love having a bowel disease – I hate it – but it has also taught me boundless things about my own body, its shown me a strength I never thought I could find and its brought me closer to the people I love. It’s made me value my own life, and allowed me an opportunity to help me help you to value yours.

 

So if you take anything from my ramblings let it be this: disease is hard and scary and intimidating, but your life is worth the challenge.