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.

I’m sorry, I don’t have any glitter

When I wrote my previous blog I was really inspired to write again. I had high aspirations for myself; had made lists. I had loads of ideas on what to write and with the time off I currently have, I was ready to throw myself in and get cracking.
Except the last few weeks have been really hard and I have found myself in quite a dark place. Steroids do not help my mental state, it seems that every course I go on, the side effects are worse. I’ve been on 40mg for the past 8 weeks and I really can’t wait to taper off them. Battling with low moods (and that’s a nice way of putting it) in general is hard enough without medication sticking its unwanted nose in too.

“Heeeeey you” depression eyes me up with a hint of a smirk, “I brought friends”

Anxiety gently shakes in the corner, whilst Medication takes his jacket off and climbs into bed with me.

I protest

“But I have to get up, I need to make breakfast, shower, go for a walk, I’ve got things to do. I don’t need, no, I don’t want you here”

Medication strokes my hair and Depression sits at the end of my bed.

“Why would you do that? You don’t need to do any of that.” He looks at me whilst lighting up a cigarette.

“You can’t smoke in my room, get out, go away” I try to sit up.

Medication puts his arms around me, nuzzles in closer. Depression chuckles, whilst Anxiety decides she wants a piece of the action and gets into bed too.

“Seriously, get the fuck out of here”

“Temper, Stephanie. That’s not very nice is it?” He spills ash on my bed. I sigh and close my eyes, realising he’s not going anywhere.

I would regard myself as a positive person, a fighter. I don’t want to be here talking about all the things that are wrong with me or the things that I can’t do but it seems as though that would be an unfair representation of the illness/struggle.
It is not all motivational pep talks in my head about how I can fight this and how I will get better. The last few weeks have more been on the side of “what’s the point?”
That’s awful! I don’t want to feel like that. I don’t want to wake up and just listlessly go through my day with Depression holding my hand, Medication on my back and Anxiety running in cirlces around me. I’m tired of friends asking me how I am and my response isn’t a positive one because I really want it to be positive, I really want to say “I’m not 100% but I’m getting there”

I’m afraid I don’t have any sparkles of good news for you.

But this is the reality of it and I thought I’d share with you what’s going on so that if any of you are in this position right now, you don’t feel so alone.
How am I coping? Well I’m trying to cut myself a little slack. There is a lot going on, mentally and physically, and beating myself up about not feeling particularly chipper is not going to help me.

It’s all about those baby steps. Small things that help me to feel a little better. That could be anything from reading, a cup of tea or a chat with a friend.
Keeping busy. Or at least trying to. I’m a little limited in what I can do without my body saying “nope, had enough buddy, you’re taking a time out” and sitting me down. Having said that I don’t want to mope around in my pjs all day so I go for walks, take really rubbish pictures on my iPhone, meet friends for tea. We’re always coming back to tea. I research things about Ayurveda medicine and the immune system.

I read lots of blogs and soon I will be getting involved in all things Christmas. Side note. I love Christmas. I used to hide and grumble about not really giving a fuck but truth be told I really love the festive season. Glitter, mince pies and festive cheer. Love. It.

It’s not much, and compared to what I used to do (hold down a full time job and an active social life) it’s pretty meagre in comparison.
However, that’s just the way things are right now. Its better that I accept it than try to fight it and make myself feel even worse. It’s just a temporary state and I’m sure that in a few months I’ll look back and all this will just be something that I went through and came out on the other side.

I’ve rambled enough so I will bid you goodbye but for any of you who are struggling out there know that this too shall pass. Nothing is permanent and hopefully soon we’ll all be back to throwing out sparkles and glitter. Till then here are some things that made me smile recently.

♥  Filter coffee from Federation at Brixton.

♥ Flowers. I went to a flower market recently and brought some beautiful peonies. The day was lovely and I got to catch up with a good friend, drink tea and have lovely chats.

♥ Today some random dude in Brixton looked over at some pigeons, then at me and said “ooo, pigeons” as though I had never seen them before. I smiled polietly, willing the lights to change so I could run away.

“Very spiritual, that.”

A massive flock of them flew into the sky and he goes “oh look, some sparrows.”

No dude, still pigeons. Change, lights. For the love of God, change.