Thursday, 15 December 2016

Unfounded guilt in chronic illness

"I am sorry!"

"I'm sorry, I'm not going to be able to make it tonight."

"I'm sorry the house is a mess."

"I'm sorry I haven't been in touch."

"I'm sorry, I can't come in today"

"I'm sorry I'm late."

"I'm sorry, I fell asleep."

"I'm sorry, I don't feel like talking today."

"I'm sorry that you think I don't care."

"I'm sorry I am sick."

Having a chronic illness means often living your life feeling guilty, but why, when it's completely out of your control?

Because as humans, we are programmed to feel guilty if we let someone down or make someone feel bad, especially those that we're fond of. 

Would we be there if we could? Of course we would! Would we have cleaned the house and been shopping and cooked dinner if we felt capable? Of course we would! It's never a case of choosing to be half a person. It's never because we don't respect someone's feelings and just can't be bothered to do something.

Healthy people still only have a certain amount of energy to use throughout the day, but people with chronic illness have less in storage. Sometimes it's a case of having to prioritise what you will use your energy for today, and sometimes that priority has to be yourself. Being quiet. Sitting down. Watching a movie. Colouring. Meditating. Reading a book. Anything to try and escape the reality that is wearing you down and frustrating the shit out of you. Just trying to find some time to relax and de-stress because illnesses such as Inflammatory Bowel Disease can be triggered by stress, so prioritising rest one day means having the strength to carry on for the next few.

It's not an easy concept to grasp for those that don't suffer so it's not uncommon to receive pretty pointless advice such as "get some sleep", when you're battling fatigue, when as a sufferer, you're fully aware that you will wake up just as exhausted anyway. It's not easy for people to understand how sick you are when they look at you and just see a person like every other.

Yes, I actually am sorry I am sick. I am not sorry for you, I am sorry for me, because every time I let people down and every time I don't do what I planned to and every time that guilt creeps in, it's me that cries about it. Whilst you're losing faith in me, and complaining to people about my moodiness lately and my distance, and that I let you down, I am suffering. I am scolding myself for being useless and not being stronger and not being a better person, but not a lot of people know that, because it's something I do alone, because my 'friends' are too busy discussing what a rubbish friend I am.

It's difficult. There's no escaping that, and there's also no escaping the guilt that comes with being half human, half sloth.

Please just know that we are trying. We are trying with every ounce of our being to live as normal a life as possible, but sometimes we will fail, and that's OK, because nobody's perfect and we must deal with the hand we've been dealt, even if that hand fucking sucks.

Sunday, 11 December 2016

I've always wanted to be Pocahontas

Since the release of Pocahontas in 1995, when I was just 7 years old, my wish has been to have blue streaks running through long, dark, straight flowing hair...

I'm sure most women will be aware that dying your hair dark and then trying to strip that colour enough to have blue streaks is difficult AND really damaging hair! Not only that, but you're lucky if the colour stays in more than a few weeks and with me needing to wash my hair even single day I'd have lucky to keep them for a week.

I had a brain wave! Extensions!

Well I've previously had micro ring extensions which just slid straight back out of my hair... twice! Last year I tried adding blue extensions with a micro ring that has silicon on the inside, which is supposed to grip the hair better. Again, a week later, they had all come out.
So, I've gone with having them glued in. So far so good. I haven't lost one 4 days later.

My hair is half permed (yet another thing that didnt't work). Two attempts left me with wavy and straight patches BUT I'm thinking when it's eventually straight again, I will Dye it black, have only blue extensions put in, and FINALLY BE Pocahontas!

Friday, 9 December 2016

Accident | Flash fiction

I lay there, unable to move, wondering what would become of me. Machines bleeping, feet scurrying across the ceramic floor, everything had such urgency about it.

The next thing I remember is waking up from surgery.

Everything had happened so fast, as though time sped up; the lights, the car, the screech of the tires on the tarmac. Then everything slowed right down as I lay on the ground for what seemed like eternity.

Months of recovery gave me a lot of time to think about what’s important: Love, time and those small moments in life that you don’t notice passing by but have the most meaning. Those moments replayed in my head each night when I couldn’t sleep because of the pain from physio earlier, along with all those things I never said, but should have.

127 days later I left the hospital.

That’s where my real story began.

Flash fiction competition
– The story has to be family friendly
– It has to be your own work
– It can be no longer than 150 words

A house that wasn't mine | Poem

This morning I woke up, in a house that wasn’t mine,
I don’t know how I got here, maybe too much wine?
I stand to look out the window, to see where I might be,
Nothing looks familiar, and I’ve never seen that tree.
I head for the door, but realise I’m not dressed,
Where did I put my clothes? This is not me at my best!
I head for the wardrobe, there’ll be something there,
But it’s full of frumpy old people clothes, nothing I can wear!
I really do not drink that much, how can this be?
I’ve never strayed from home before, I’m only twenty three!
I begin to panic; I’ve no memory of arriving here,
Maybe I’ve been kidnapped?! My brain floods with fear.
There’s a tap on the door, and a lady whispers “Pam?”
I don’t know who she is, but it’s certainly not my mam.
My eyes dart around the room, looking for a phone,
Where am I? Who is she? Please just get me home!
I grab the quilt, cover up and make my way across the floor,
Afraid of what may greet me on the other side of the door.
I stumble in front of the mirror, and land right on my knee,
I look up, who’s that old lady? Oh my god, she’s me.

- Carers UK creative writing competition

Whoever you are tomorrow | Poem

She’s not the same, as once she was, young and fun and free,
So much of my life I’ve know her, while she’s loved and cared for me.
Her personality has changed now, she worries so much more,
She doesn’t have steady footing, we have to watch the floor.
She creaks and groans doing just the smallest of tasks,
Her memories are fading, the same questions repeatedly asked.
Her skin is thin and her bones brittle, she’s often battered and bruised,
She can be angry and she can be bitter and really easily confused.
Most days I don’t recognise her for the woman she used to be,
But more often than that, and what hurts the most is that she doesn’t recognise me.
I’m getting to know her all over again, but the ‘her’ she is keeps changing,
So I have to adapt to be what she needs most while her needs are constantly ranging.
Every night when I tuck her into bed, and she’s got to know me through that day,
I pray to god she’ll remember tomorrow, so I don’t have to fight again to stay.
And I whisper the same thing, every single night, to the woman I once knew,
“Whoever you are tomorrow, I’ll love and look after you”

- Carers UK creative writing competition

Together, you’ll see | Poem

You’re different now, you’re old and frail,
Thinner skinned and always pale,
Your hair is shorter, your body weak,
Your voice is fainter as it’s harder to speak.
You’re not as happy and barely smile,
You wouldn’t be capable of walking a mile,
We don’t communicate like we used to,
When we’d just have a natter over a brew.
You don’t remember times that we’ve shared,
You don’t remember when you truly cared.
 Sometimes I mourn for what we have lost,
And many times, swords have been crossed,
I know It’s been difficult, for you and for me,
But we’ll always get through it, together, you’ll see.
I no longer know you, that much is true,
But I learn every day how to keep loving you.

- Carers UK creative writing competition