A brief chat about that dark and twisty place

Picking up my phone to check the time – 7am – I resign myself to the fact as I’ve been up three times since 5am, I probably am not going to get any more sleep.

A deep sigh fills my lungs and roll myself out of bed. What to do? Stretching, I decide that instead of going for a swim in the afternoon, I am going to go for my first run since god knows when.

In Melbourne I used to cycle everywhere and run around the botanical gardens. Since coming back to the UK I managed to run until the early new year but became so exhausted that any exercise outside of work was just impossible.

Putting my gear on, I head out into the early day and smile as I slowly start to break into a gentle jog. It feels good to have my feet hitting the pavement once more. A few months ago I couldn’t even walk up the stairs without feeling sick, out of breath and having to rest at the top of the stairs. It’s crazy to think how far I’ve come and only looking back can I see how sick I was.

Unfortunately this is a cycle that I have grown quite accustomed to. Periods of health, periods of just getting through the days and periods of debilitating illness. It’s a horrid cycle.

This morning was the first for a long time where I felt alive. It has been a horrid, turbulent few months. Months so dark I was unsure that I would make it. Shit. I am aware of how dark and twisty that sounds, but I have to be honest because no one talks about how hard it can be. We all show the brave face, how much fight we have in us, no one tends to talk about the dark and twisty hole you can end up in.

It’s not fair, you’d hear me say to my step dad. I just don’t get how I can go through and get a grip on one chronic disease to only be dealt with another one. Why me?

There isn’t an answer for this. It’s just the way it is, but boy did I feel sorry for myself. 27, a bowel disease, no large intestine and now a liver disease? Come on universe. Stop taking the piss.

Do I wish things were different? Of course I do. But I can’t do anything about the way the cards have been dealt. I have to make the most of the situation. There were times that I would lie in bed having not had any food for 2 days because in my mind I just could not see the point. Why try? I’m just going to get sick again. Why go through the cycle of trying to get better when I’ll just end up here once more. What have I honestly got to get out of bed?

Well, for starters, my beautiful family and friends who have been an immense source of support and encouragement. But really truly? Me. I needed to get out of that funk for me. I could let this darkness consume me, I could let it engulf me or I could at least try to fight it. Slowly I started to do things. I’d get out and go for a walk around the park, no matter how exhausted I was, persuading myself that if I still felt awful I could sleep when I came home.

I went for coffee with friends, I started to go to exhibitions and I was finally able to concentrate long enough to read.

I told my doctor how low I was feeling and she put me onto a counsellor and I started taking Cognitive Behavioural Therapy sessions.

I started to swim – I say swim – attempts to not drown.

I brought things from Lush because they smelt good, I brought flowers because they made me happy. I made tea. Lots and lots of tea.

There is no formula to try and get yourself out from that dark, twisty hole. There is no guarantee that it will work. I’m still trying, there are days where my anxiety comes and smacks me in the face, a cruel reminder that I’m still fragile but I’ve come so far from where I was.

To anyone that is going through this at the moment I have this to say to you.

You have to believe in yourself, no matter how hard it is. Your life matters. You have to fight for it, it’s not fair and it’s not easy but the world would not be the same without you. Hang in there beautiful. It’s going to be okay. I promise.

Roid Rage

Steroids.

Tiny white pills sent from the devil. Necessary for my recovery – in fact life saving – but extremely debilitating.
When I had what I thought was to be my last dose of steroids back in July 2010 I could not have been happier. I’d been on steroids on and off for my Ulcerative Colitis for two years. Steroids controlled the inflammation but I’d always flare once I’d come off my course. Towards the end I’d start to have symptoms when I’d get to about 10mg, so when I had my Jpouch operation I remember being so excited and looking forward to being medication free.
Just before I left for Australia I had been having issues with chronic pouchitis, and my surgeon and I  were discussing the options of going back on because the copious amounts of antibiotics I had been taking weren’t helping – I flat out refused. I had experienced 3 years of being medication free, there was no way that I was going to back on them.
I managed 5 glorious years of no medication. September of 2015 saw steroids reintroduced into my life and my body has been through so much to compensate the dose that I am on.
I don’t even know where to start with the insane amount of side effects that I am experiencing, so let’s do some lists. Lists are good, comforting, they bring order. Yes, let’s start with a list.

♥ My face is a mess.

No seriously. A full on, HOTMESS. You experience this weird symptom called moon face where your face becomes puffy and fills out.

I was in a&e on a Saturday night a few weeks back – yes friends, Saturday night in a&e is as horrific as it sounds, there are a lot of drunk people shouting “I’m going to be sick” whilst they are trying to escape from the bed, whilst also trying to dance. It was a weird time and everywhere smells like vomit – and I managed to come across a doctor who had seen me before. We were having a chat about my chest pains and he said “I remember you, you’re a bit chubbier than when I saw you in May” and gestured too my face.
You’d think that I’d be able to brush it off considering that was the least of my worries at the time, in was in my PJs in a&e for chest pains at 3 in the morning on a Saturday night. But it stung. I’m hyper aware of the fact I look like a hamster hoarding food for a bleak winter, I’m also very aware of my next point.

♥ Unwanted facial hair

What the hell. I am half Greek and so have dark hair, for the past few months I have been sporting a rather fetching female moustache. Its not as prominent as a male one, she’s sneaky, she quite fine, but nonetheless, she is there in her proud glory. It comes accompanied with some light peach fuzz on my jaw/cheeks and bizarrely a patch of it above my right eyebrow.Why are you there? You are neither my hairline or my eyebrow, and why only on one side? I have burning questions that have no answers.

♥ Acne

Lots and lots of acne, over my face, my arms and my back.

♥ Weight gain

I’m just turning into a ball. A round, spotty, furry ball. In truth a hamster. I’ll keep you posted on the claws.

♥ Mood swings

I am cranky as hell. Something very tiny can set me off at any point. Take for example a lady on the coach who was talking quite loudly on her pohone with her dad. Sure it was annoying, but I had worked myself up so much that I was shaking. The rage was insane, I wanted to turn around and scream “NOONEGIVESAFUCKABOUTWHEREYOUVEPLACEDTHEDRESSERINTHEHALLWAY” tearing her phone away from and throwing it off the coach.
I didn’t, because that’s the kind of shit that gets you hospitalised or in trouble with the police.

♥ Panic attacks and anxiety

I used to suffer from panic attacks when I was about 14 and would have the occasional bout of anxiety but it wasn’t, I was about to type ‘ wasn’t an issue’. I know now of course that it was, but the attacks didn’t happen regularly enough for me to feel like I could talk about them. Also, at that age I didn’t know how to raise that subject. It was never so bad that it stopped me from being able to live my life and so I just continued as I was.

♥ Exhaustion

Hey old buddy, old friend, old pal, you are not new to me. I’ve battled you for years but this had me holed up in bed for quite some time.

♥ Shakey hands

So much so that I can’t put eye liner on for fear of poking out my eye. Lame example, I know, but my eye liner is my ‘trademark look’. I put on make up in attempt to make myself feel better about looking like a hamster, but when you can’t because your hands shake too much, it then becomes a battle, which is exhausting. You want to feel some sort of normality, but when your hands are shaking so much that you worry you’ll end up looking like this Make up

You sort of just accept that make up isn’t happening and resign yourself to avoiding all mirrors and reflective surfaces.

These days I’m on 20mg so luckily the shakes have stopped and have recently been able to put on proper make up once more. Which is great, because the moon face, acne and facial hair I’m told will stay until I’m off them completely. Great. Someone teach me how to contour please.

I also nearly cut my finger off trying to make dinner. Lesson learnt. a) When shakes are bad, soup is your friend. B) why did I think it was okay to use a knife when my hands were so shakey? Once again you strive to attempt some kind of normality. No one wants to admit that they can’t do things. Its easier for us to focus on what we can do, so of course it seemed perfectly okay to try and cut vegetables.

♥ Depression

You’re a Douche and to be quite honest, I’m not ready to talk about it on here just yet. Just know that steroids don’t help it and I’m currently in therapy in an attempt to kick its ass.

♥ Insomnia

Which doesn’t help the above point. Or my face.

There are more side effects, but these are the ones that hit me the hardest. As I said above, I’m currently on 20mg and I’m slowly tapering off them which means that some of the side effects ease, but also means that where I have been on steroids for so long I have to be careful for things like joint pain because your body gets used to the dose that is supplied. So far I’m lucky and have not experienced anything too out of the ordinary.

I have another appointment on the 14th to discuss coming down further. The aim is to not be on steroids but if my liver levels start to creep up again, which is possible, I want to discuss going on Budesonide which is metabolised in the liver, hopefully bypassing a lot of the above symptoms. That, however, is something that future Steph can deal with, because right now I’m taking it each day as it comes.

What are your experiences with Steroids?

Stay well

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