Musings of a Carer [1]

MUSINGS OF A CARER

Today I had to google what a ‘Tall Boy’ was. No it is not a vivid sexual fantasy of a never married-little-old lady (and if that was the case, why on earth was she handing me 2 towels… *shiver*). Thanks to google, I discovered that a Tall Boy is in fact a chest of drawers. And so the generational knowledge gap between me and my clients once again becomes glaringly apparent.

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‘I was quiet, but I was not blind’ – Jane Austen

Who really knows.

I’m not one of those people who likes conflict. I hate it. It drives me mad. It stresses me out. If anything, conflict is one of the biggest triggers to me tumbling into a downwards spiral. I’ve always been one of those people who would rather sit down, talk, and find a compromise, than get into a full blown argument with someone. To me, that’s always been the better option.

I’m not going to say it’s healthy. In the long run, it’s probably quite the opposite. I’d rather not show anyone just exactly how they’ve hurt me, or how angry I am, so it just ends up bottled. It grows and grows, and eventually explodes, or at least, implodes, into something not good at all. I’m an internal combustor, a nuclear bomb that only collapses inwards rather than shatters outwards. Continue reading

Back down the rabbit hole

Depression sucks. Like really sucks. And when you hit a low spot it can feel like the whole world is crashing in around you, flying unerringly towards the void that is opening up in your chest. I was pretty good for a while. Probably a little while too long. And as the old saying goes ‘what goes up must come down’. No, I don’t go through my okay periods constantly thinking ‘when is this going to end’ (not every time anyway), but I can’t help but always feel like there is some sort of inevitability whenever I do end up crashing head first down the rabbit hole. It reaches a point when you start to become aware of every tiny little thing, every little flux in thought and feeling, and you begin to wonder if this is the one that finally pushes you over that edge. Sometimes I describe it as a cartoon cliff, where you run out and you don’t realise you’re over that cliff until you look down, and it’s too late by then. Other times you can see it getting closer and you’re doing everything in your power to stop the impending edge but there’s always something that sidelines you and you almost willingly take that final step off the precipice. I don’t know which one is worse to be honest. Continue reading

An invisible illness: how other people react

I have flare ups reasonably regularly, but from the outside you can’t really tell. Unless you’re privy to my bathroom routine, have super hearing for the grumblings of my stomach, and document how much I have eaten that day, then from the outside I don’t look ill. And that’s why my illness is invisible. There are many invisible illnesses out there, and it basically means you cannot tell someone has a disease or disorder just by looking at them; they could look entirely ‘normal’ and healthy externally, but internally, their body and/or mind is waging war on itself. Internally, they may be very sick indeed. My illnesses are not obvious to those around me, and so it can make certain situations sometimes difficult to deal with.

Food can sometimes make me feel awkward.

Like a normal person, I have to eat things. Unlike a normal person, I have IBD. Continue reading

Let’s talk Indeterminate Colitis: Now [Part 3]

Welcome to part 3. Sorry for the wait, I’ve been training for my new job and thus not been around enough, or awake enough, to do another post. But in these 5 minutes of quiet, let’s carry on this story. So in this one, I’m going to talk about where I am now with my illness, and from then you’re up to speed!

Also, this is quite an apt time as we are slap bang in the middle of Crohns and Colitis Awareness Week here in the UK (1st-7th December), so here is me raising awareness of what it’s been like living with Greg!

Since my diagnosis and NG tube 11 years ago, Greg has never been that serious since. Thankfully Pentasa seemed to do the job, and helped to keep him in check. Don’t get me wrong, I had my ups and downs and it took a while Continue reading

Let’s talk Indeterminate Colitis: Diagnosis [Part 2]

Welcome to part 2. Like I said before, this second bit is going to be a bit more personal. This part is about when I was first diagnosed, and my initial experience (again, this ended up being split up as it got too long for any sensible person to want to read). I’ll try to give you an idea of what that’s like. This is my personal experience, and it is infinitely different for everyone suffering with the disease, just like for anything else. Sometimes things will be similar, but just like in every day life, let’s not paint everyone with the same brush.

Right then, to get super personal with me about this, I’ll tell you his name. My indeterminate colitis is called Greg. That’s how I’ll refer to him from now on. I call him that, my family call him that, and even my partner has always referred to him as Greg. The story behind it is that I watched a documentary of a little girl with cancer who named her tumours as that made them less scary. I latched onto this idea and the first name that popped into my head was Greg, and so from that moment on, he was Greg. Continue reading

Let’s talk Indeterminate Colitis: What is it? [Part 1]

Originally, this blog was going to be solely based on raising awareness about crohns and indeterminate colitis, through blunt stories, a little bit of swearing, and some cynical insights. It was an idea suggested by my counsellor at the time, to create a place for me to get my thoughts out about something I would be living with for the rest of my life, raise awareness of a somewhat less sexy disease, and perhaps create a space for others out there to come together, either with the disease, or those wanting to know more.

I decided to split this up into two sections as it started to get very long. ‘Part 1’ is the biology bit, and ‘Part 2’ will be more of a personal account of my experience. Let the biology lesson begin, are you sitting comfortably?

As I have previously mentioned, I am part of the ‘indeterminate colitis’ label, edging towards ‘crohns’. Simply, I am the owner of a gastrointestinal system that literally hates itself. Unintentionally. Continue reading