Crohn Age Pensioners

Its been a few days since my first infusion of Infliximab (Remicade). 

Pre-infusion the treatment itself had mainly been touted to me as a kind of one-fix-all wonder drug: from patients and doctors alike. I'm not a daftie though; when it comes to medication anyway. 

I research and study what I'm about to undergo. I learn about how it will affect me, for better or for worse, and weigh up the pros and cons against the alternatives. 

The alternative for me at the moment is Humira. Another biologic which is injected by the patient. Or nothing. NO THANKS.

I opted for the Infliximab as it's also used in treating Arthritis (which I also suffer from) and I hoped I'd benefit from that easing a little, alongside treating my Crohn's. It was a relatively easy decision for me to chose infusions over injecting myself as I'm not massively brave in opting to inflict pain on myself and lord knows my BF would rather eat his own eyeballs and/or balls with tomato sauce than do it for me. 

My first infusion went without a hitch, aside from the usual multiple games of hunt the vein, from which there are no winners. My arms and hands are so pathetically pale and my veins play hide and seek with more dedication than Julian Assange. Five attempts to cannualise me later, we were good to go. 

Man, that several hours nailed to a chair with a drip hanging from me were B O R I N G. 

I read half a novel, daydreamed about my cats and chatted about incontinence with 3 women aged approx 467886 between them. 

Thinking about it, Social Media is a bit of a godsend to me, it's a wonderful place to 'meet' patients of a similar age. In all my stays in hospitals I've never EVER met a woman in her 20's/30's. 

All pensioners. Not that there's anything wrong with pensioners. I love them! Some of my best friends are pensioners! Plus, I act and dress like one 99% of the time. It's just difficult to find someone to talk about the merits of Jon Hamm with when your fellow patients can't hear you or are focused on locating their missing teeth. 

Anyway, as always I digress. My treatment is underway and thus far I'm feeling like I'm in the grip of a four day long hangover, sweating like a pig, shivering like a Spaniard visiting Scotland, nauseous and my sea-legs are active and I HAVENT EVEN BEEN ON WATER. 

I'm hopeful though. I know it's very, very early days and I've a lot more ahead but I'm trying to maintain a good attitude about it. I had a wobble earlier and a woe is me moment so I find writing that down reminds me I'm being ridiculous. So in a week or so this ridiculous creature will know if my treatment is working and I can breathe a sigh of relief or go back to the diseased drawing board. Either way, I still know where my teeth are at all times so it's not all bad.

Bono-Syllabic

Today is the anniversary of the day I decided I didn't want to die.

I'm not sure if you've ever felt your life was over?
I have.

It was around 6 months into what became a year, of constant and consistent pain. Pain that was peppered alongside main courses of nausea, headaches, spells of passing out, aching bones, shitting blood, and subsequently pin-balling in and out of hospital. 

Don't get me wrong; if you think I’m implying I welcomed death, I didn't. 
Of course I didn't. 
I didn't feel suicidal. Not in the 'traditional' sense anyway. I didn't want to jump off a building, or tie a noose around my neck. I am an awful scardey-cat for starters and could never hurt myself. Plus, in films women always manage to look graceful in death, I can't even look graceful tying my laces so I know for a fact I couldn't pull it off.

Also I didn't actually WANT to die; I'd just accepted it was inevitably going to happen. (Much sooner than the obvious inevitability of it happening in old age anyway).

I'd just accepted it, and was (impatiently) waiting for it to happen. It would have been a blessed relief at that point. To just fall sleep and not wake up in gut-wrenching pain. Imagine it! A life without being shocked awake at 3 in the morning writhing in agony or fearing an accident, then attempting to see out the next 15 odd hours upright! It was an impossible dream.

I didn't think very far, if at all, about what comes next. After the 'you're dead' part. Now that I think about it, that's probably for the best; my warped mind would most likely have had me with Crohn's Disease in the afterlife too, chilling out [heating up?] with The Devil whilst he subjects me to and endless loop of Bono interviews.

I didn't vocalise my feelings on the subject of my demise because I didn't think it was necessary. 
I didn't think about it at all. 
I was just in a constant daze of pain. 
Now, with a clear head, i reaslise that discussing these feelings would only have served to worry everyone around me, and/or have me sectioned. I'm much more aware now of when I feel my disease and the misery it can bring is plummeting me into despair. I am strong enough now not to give into it, for the most part. That's something i'm very proud of; Knowing I can beat it mentally if not physically. I think that's often harder. 

Giving up hope never solved anything. 
It's very hard when living with chronic illness not to fall into the trap of isolating yourself; and living solely inside your own head can be a major factor in speeding up that process. It's vital to always bear in mind that constant pain can give you a slightly skewed view on life. It's a unique and wholly unwelcome outlook, but one that I feel you can grow from.
I've learnt i'm not the weak and pathetic girl I once felt due to my illness. I don't have to lie down and take everything it throws at me (although sometimes I really do have to lie down, so forgive me that). 

Even if you feel alone and afraid, talk to someone you trust. Let them attempt to help ease your burden and don't assume there's nothing anyone can do for you. I've found that I'm much stronger that I'd ever thought I could be. I share my experiences with you in the hope that if you are ever feeling lost and hopeless you remember there is always light at the end of your colon. 
And face it, with Bono as the alternative, let's agree to try and stay alive eh? 

Pie Baby

Sometimes, more often than I’d like, I struggle to find the joy in things. It’s not something I can put down to my illness entirely, as it’s been there for as long as I can remember. It’s not a massively negative issue, and am I'm not a massively negative person, it’s just a feeling of general ‘malaise’ I've always felt since I was young.

I suppose, much like my strange bowels, I've always known something was slightly off, but it’s never been an ‘issue’ I've felt the need to act on. If you can even grant it a title as important as an ‘issue’. It’s just been a mild feeling of being emotionally stunted I suppose. Or maybe it’s just disdain overtaking any potential joy. I'm not sure.

Don’t get me wrong; I'm emotional, I cry at the drop of a hat. I mean I can really go for it when it comes to the old salty eyes. 

One of my friends/family is upset? SOB-FEST 2015. 

Romantic films where they lose the love of their lives? HERE I GO AGAIN WITH MY TEARS. 

Adverts about homeless kittens? MY EYES FEEL LIKE THE GRAND CANYON WITH THE WATER REMOVED. 

So you get my point. I don’t have any problem showing my emotion – when it’s negative. But I find it hard to get ‘excited’. I feel it, but I don’t feel it. I don’t know if this is making any sense, but you've read this far you might as well keep plodding on with me.

I think understanding the significance of these lacking feelings came to the fore after my diagnosis. The more I learnt about my disease the more heart-breaking and hopeless it all felt. Of course that’s not how I feel now; I’ve gained so much more in terms of love and understanding from people around me than my illness could ever hope to take away. I don’t feel hopeless; I feel hopeful (most of the time). I try to at least. I think that’s half the battle. Faking it till I feel it. I don’t have to do that in all areas of life of course, nudge nudge! wink wink! [Dad, if you’re reading I mean I don’t fake the joy of hand-holding of course].

When you have a chronic illness however it can be difficult to find the joy regardless of whether or not you are a Grade A weirdo like me. I've been wondering why this is; it’s not just the day to day with the disease. The difficulties we face physically and mentally. The endless symptoms, and pain. I think it’s also those fellow patients and/or hypochondriacs around us who are more negative than they are positive. If these people were a pie chart they would be 10% delicious filling and 90% burnt pastry because you left the pie in the oven too long again I told you to put it on at 180 but you knew best didn't you?

It’s obviously wholly understandable when talking on social media, or amongst real non-Catfish people in real-life, that you’ll describe your condition in a less than joyous light. It’s natural to talk about a negative part of your life in a negative way, but I would just ask you to consider how much of your pie is burnt? (I’m continuing the pie chart analogy take your mind out of the gutter). 

Negativity towards your illness is a part of life, but be careful of your audience when audibly bashing certain aspects of it. Doctors, treatments, medications and symptoms may all be complete alien to new patients. Don’t tell them how horrific your experience is when they are already terrified to their very colon. Don’t tell them you had a horrifying experience with (insert relevant medication here) when they are just about to take the plunge with it. Don’t try to outdo one another with competitive suffering. It’s honestly such school-yard behaviour it’s embarrassing. Bear in mind when your bad experience is at the forefront of your mind not to pummel theirs into insignificance and terror with it. 

It’s already scary enough coming to terms with not getting physically ‘better’; don’t make getting emotionally better, worse. 

And always put your pie in at 180.

There's an Ill in the Air

It’s World IBD Day!

Which, as we all know stands for ‘Irritable Bowel Disease’!

No?

Oh, sorry I meant ‘Invisible Bra-Straps Day’!

No? Really? That’s my favourite day as well…

Ok, so I’m joking OBVIOUSLY, we all know it stands for ‘I Banged Dave’. No, sorry you’re right, that’s an excerpt from my upcoming kiss and tell novella, 50 Shades of Dave.

I’m just being hilarious and silly as always. (Sorry Dave).

Today is World ‘Inflammatory Bowel Disease’ Day. It’s a day where we aim to raise awareness of Crohn’s Disease and Ulcerative Colitis. Traditionally conditions that often go unspoken due to their ‘invisibility’ and complexity. It’s very easy to fall into the trap of keeping quiet about it.

We find people often don’t understand just what is involved in living with a chronic illness, so we just don’t open the dialogue. After all, it’s easier that way isn’t it?

No.

Not talking about IBD makes it shameful. It implies that as patients we have something to hide, something to be embarrassed about. It allows ignorance to run rampant, like me in a pub full of men called Dave. It causes insecurity, anxiety and confusion. When we remain mute on the subject of our illness we allow others the space to come to their own conclusions. (Conclusions, that are wrong; 99.9% of the time).

We have to talk to ensure we are consistently reaffirming the point that we have absolutely nothing to be ashamed of. We are living with illnesses that massively affect our lives and should remind ourselves often, that leading ‘normal’ lives around an abnormal illness, takes huge courage, humility and strength.  

So what to do to spread the word? And is all awareness ‘good’ awareness? Well it’s certainly vital we teach those outside of our illness what it entails, and how it affects our lives, but how?

I feel education is of the utmost importance. How can you expect strangers to comprehend your illness when you can’t really explain it yourself? I have Crohn’s Disease and I’M still learning about it. I experience something new every day. It’s never ending.

We need to help one another educate ourselves and others.

If you are knowledgeable about IBD then share! Don’t patronise other patients. When you do that you only make them retreat further into their diseased shells. When I was first diagnosed there was so much information to take in it was utterly overwhelming. It was almost impossible to distinguish the accurate from the hyperbole. Everyone has their own horror story to share and none of them help ease a worried mind.

Use days like today, (and every day) to share your knowledge and support those who maybe don’t have as much of it as you. Don’t just raise awareness; raise the bar. Give the gift of information. It’s the most useful gift you can give; it’s non-returnable, recyclable and never gets old. 

Dr Feelgood

I recently read a piece of writing from someone with IBD, in which they were discussing how happy they were that their recent surgery had ‘cured’ their condition. 

I was both overjoyed and dejected. 

Overjoyed; on the writers’ behalf, as it was a wonderful insight into how denial and misinformation can lead someone to feel immense happiness. Even if they are woefully idiotic. 

Dejected; as it reminded me that people with, and without IBD still believe they can be cured with surgery. I wondered where that misconception came from. Articles like the one I’d just read? Doctors? Surely not. Fellow patients? Possibly. 

Let me make that point clear before I continue; Surgery is NOT a cure for IBD. Having parts of your insides surgically removed forever, is not a cure for an incurable condition. It’s an unfortunate and often devastating necessity for many patients to endure in order for them to stand a chance of living as close to a ‘normal’ life as possible. Or just to continue living.

My own surgery for Crohn’s Disease was a little over 4 years ago now. It saved me from dying at the age of 26 and gave me a quality of life I’d waited for, for a very long time. I’m well aware of how dramatic and easily bandied about the words ‘life-saving’ can be, and sometimes I feel embarrassed to use them, but they are accurate in mine and most cases, for patients with IBD. None of us would put ourselves through invasive and major surgery, followed by months of recovery and rehab without good reason. I think staying alive is a pretty good reason. And one of my favourite Bee Gees hits.

Before my operation (in which I had the most badly diseased part of my bowel removed), I’d resigned myself to a life of pain and misery, so when the chance to feel better was granted I remembered what it felt like to feel hopeful again.

The problem arose, after my surgery, when I realised I was still in immense pain. Not so much Crohn’s pain now, but a whole new world of agony where I’d been sliced and diced hours earlier. Now much as you may disagree, I’m no imbecile; I’m well aware that having your stomach cut open and parts of your internal organs removed might nip a little afterwards. It’s just I’d made the mistake of assuming I’d be relatively Crohn’s-free. I hadn’t bargained on requiring barrel loads of morphine and two sturdy nurses to as much as stand upright. I’d realised I had a long road to recovery ahead of me, and that surgery wasn’t a ‘quick fix’ by any stretch of the imagination.

So, if you or a loved one is heading towards the operating table, here are some words of wisdom taken from my own experience with getting up close and personal with a scalpel. Allow them to wash over you like a vial of morphine or a vigorous bed bath depending on your preference.

1.       Bear in mind surgery is being used to help you feel better and help you manage your condition more effectively. To give you back some semblance of a ‘life’; NOT to cure you. You will still have IBD when you come out the other side of the operating theatre.

2.      You will desperately need a cushion when you sneeze, when you cough, or when you laugh. Hold onto that cushion with any energy you have and cradle it to your chest like Baby carried that watermelon.

3.      Don’t try to shower too soon – or alone. Yes it’s important not to smell like your local sewage works, however its dangerous to attempt standing upright and under hot water alone and unaided shortly after major surgery. Don’t be ashamed to ask for help – from nurses in the ward or loved ones if you are at home. Cleaning as soon as you can is vital to avoid infection, just don’t risk your life doing it.

4.       Don’t resist the pain relief. You are not special. You are not superhuman. You might feel ok now but wait till the morphine wears off then decide if you still want to be ‘brave’. And don’t.

5    Don’t propose to your surgeon under the influence of a cocktail of drugs. They will only break your heart and have you moved to the psychiatric unit.

Can't Bowel Me Love

Let me begin by saying I do not, by any stretch of the imagination, profess to be an expert in matters of the heart. In fact I've made some questionable choices in the romance stakes over the years and even more mistakes in relationships. But who hasn't? It’s how we learn. But bearing that evidence in mind, please feel free to take any of the following advice with a bargain-bucket-load of salt. 

In my defence however , I would mention, that I do have over 30 years experience in liking boys, over a decade’s worth of long term romances under my belt, and 6 years’ experience (diagnosed anyway) in being in a relationship with a chronic illness (and a man obvs).  

I'm currently in an almost decade-long relationship with a man who has known me pre, and post, Crohn’s Disease. I’m not going to spend this post getting all soppy about him of course, so put your sick bags down. Suffice to say I could read every dictionary in existence from cover to cover and I'd still never find the words to describe the feeling of his hand on mine. I’m quite partial to him is all I’m saying.

Anyway. The point of this blog was to share with you what I’ve learnt in living with a chronic illness, and how it affects your relationships, romantic or otherwise. As with the diagnosis of any form of illness, there will inevitably be a shake up within your intimate circle. Whether you want there to or not. And I’m not just talking about colonoscopies here, you feel me?

When you are ill it can seem all consuming, and it usually is, but it’s important to remember its also hurting those around you. Everyone who loves you must also learn to adapt to your condition, and that can often be harder on them it is for you. It always crucial to remember the person 'loving' the sick one: the care givers, who play a vital role in helping us to lead as normal and happy lives as possible. They may not be experiencing your pain and suffering, but they may be battling their own demons in acclimatising to your changing body and mind.

That’s why there are a few important things to remember in walking the tricky, sickly tightrope with your loved ones.

1.  Don't stop talking.

The minute you begin to shy away from openly discussing your thoughts and worries is when things start to crumble. In any relationship. Curiosity at what the other is thinking breeds resentment, paranoia, and worry that it's them causing you to feel in a certain way. When most likely they are just struggling to adapt or understand what is happening to you. Inevitably it just causes general unhappiness and an overall sadness that someone you love can't bring themselves to share their fears with you. Of course this isn’t necessarily the case; there a million and one reasons why patients don’t communicate their worries with their partners, friends and/or families. Primarily not wanting to cause them what we would deem to be unnecessary pain or worry. But don’t forget it’s vital we let them make up their own minds. We can’t change or predict someone’s reaction, and we shouldn’t impound our misery but keeping it in.  

2.  Don’t lose sight of your self-worth.

Please bear in mind that to you as the patient, your life may feel as though it has changed beyond all recognition; that you have changed; but to your loved ones you are still the person they care for, only now 99% more diseased. You have a condition, and although it will undoubtedly have an impact on your life, it doesn’t have to consume you and everything in its path. It’s not me just before my period. Don’t forget who you were before you became ill, who you still are and can be, despite your condition. It’s devastating to watch someone you care for give up, so don’t be that person.

3.  Life is still going on around you.

Yes, you are unwell, and yes, it’s just awful, and yes, ME ME ME, but hold on a minute Miss Self-Pity 2015, what’s the craic with your partner? Your family? Your friends? Do they still have lives or are theirs on pause until you decide it’s time to move on from relentless discussions about your bowels? Often when patients are ill for protracted periods of time, conversation goes stale and a bit too ‘medical-ly’. Appointments, procedures, surgery, blood tests, collecting prescriptions etc, can all often feel like a full time job, but don’t forget there are people around you who have their own difficulties and maybe want to discuss them with you. Don’t obsess over your illness and don’t expect others to do the same. You’re only making it you and not merely a part of you, if you start down that road.

4. Let someone lighten the load.

Don’t play the martyr and try to do it all yourself. Don’t struggle with things to try and prove some point to yourself or others. Especially not when you’re going to use your difficulties as a stick to beat someone with later. I’ve personally found day-to-day things a lot more testing since I became ill; what with the fatigue, pain, general blue moods and other array of symptoms, it’s often hard to muster the enthusiasm to get out of bed let alone carry out all the chores ‘normal’ people do. So if you live with someone, explain how you are feeling. Make it clear you are struggling and let them take some of the burden. Discuss what you can do if it makes you feel more ‘useful’, and don’t beat yourself up over what you can’t. If you don’t have a significant other, ask for a helping hand from your family and friends when you need it, or attach tiny mops to your cat’s paws.

5.  Teach rather than preach.

Overall, talk and don’t stop talking. Communicate and trust in those you love to help. Yes, they may not understand, and that may be incredibly frustrating, but don’t expect miracles overnight. Did it take you two minutes to come to terms with having an incurable illness? Educate them where need be. If that love you they will be more than willing to learn. Don’t berate someone you love for not properly grasping the extent of your symptoms/feelings/pain when it has been explained through nothing more than a complex system of irritated sighs.

After all, it takes two baby, to make a dream come true.

Two cats that is. 

Dont Judge a Book by its Colon

It’s become something of a hobby of mine lately to share with many of you here, on Twitter, Facebook and in real life, the more insensitive and ignorant comments about my disease I encounter on a daily basis. It’s intensely infuriating and disheartening to hear from people who have an already formed opinion on me, and of how I should live my life, and/or whether my disease is even genuine. It’s staggering to me that people consistently make such inane assumptions on how I feel. On how I should behave. How I should manage my illness.

However the more I consider my predicament, and that of I’d imagine, hundreds of thousands of chronically ill people all over the globe; I have been forced (by my own pesky conscience) to stop and take a look at myself. To try to walk in their non-sickly shoes for a moment. I want to believe people are inherently good. I want to try and understand these assumptions. But I’ve come to realise maybe I don’t necessarily need to. I’ve already made enough of my own at some time or other.

SO I suppose I’m a reformed character when it comes to judging people without taking the time to know all the facts. A rather shameful admission I grant you, but an important one to make before I spiral out of control in my rage at others.

When someone tells me “You don’t look sick” that’s an observation they are making a choice to verbalise. But also perhaps a more malicious step further to allow these words to slip from their mouths when I’ve just explained the complexities and invisibility of my illness. Are you looking to embarrass me? Shame me for my condition? Remind me that I’m not playing the part of the sickly person I profess to be?

Maybe all of the above.

When I hear those four immortal words I feel frustration, but it’s also a stark reminder of how I used to view the world. I myself have looked at someone at many times throughout my life and thought ‘you look fine I don’t know what all the fuss is about…’ – then felt ashamed when I’ve discovered the true extent of the person/s situation.

When I was younger I was naive to the concept of ‘invisible illnesses’. I thought you got ill, and looked white, ghostly, lost weight and maybe your hair if you were really sick, then got better or died. (Please bear in mind I grew up when AIDS was the most terrifying thing on the planet since I woke up without having removed my make up from the night before).

Illness, and the ‘look’ of it, seemed as distant to me as the Moon. It meant nothing. No impact. Then, as I got a little older, I watched my beloved Grandmother slowly fade to a tiny husk of a woman and pass away. This happened gradually, as she wasn’t especially ill beforehand, just old and ready. But when she died she didn’t look peaceful as all those films in black and white we’d watched lead me to believe. She looked almost afraid, and not like ‘her’.

It terrified me. It still does.

But it also allowed me a glimpse into the mind of a woman I’d loved deeply, come to terms with her life having come to the end of its term.

From that moment, my outlook changed overnight. I no longer judged. I no longer assumed the worst of everyone around me, and I tried to learn about those conditions and emotions surrounding them when, and if they came into my life through others. This of course bubbled away as just another trait until I became ill myself. Then I had the experience first-hand. I feel what it’s like to be judged. Not believed. To be made to feel ashamed of something you have no control over, and like death, its ugly.

I am ashamed of ever judging another person for how they look. And you should be too. But it’s not too late to redeem yourself; just stop it. Immediately. Look, listen and learn. Its child’s-play.