Admitting the fight.

Tuesday 3rd of June I had my first doses of AMG181.

Was it placebo? Was it a dose? I don't know. This post isn't about that, as there's not much to report yet. I wont know if I have the drug for a few weeks yet.

I'm going to be brutally honest in this post. I'm sorry if this hurts anyone, I'm doing all this to hopefully offload some thoughts that keep me up at night.

The other day, I sent the trial nurses (whom might I add, are absolutely amazing) an email. It was asking for help. Which I don't like to do usually.

I started the email with a simple, 'I feel worse than I have in ages'

I went to the doctor Friday, and had a complete melt down. I didn't realise how much the results of the colonoscopy had effected me.

I cried, and sobbed. Letting everything I'd been holding in, out. Right there, in front of this stranger.

My joints hurt, my bones hurt, I hurt. Please make it stop? At 23 I don't want to lie in bed at night with throbbing legs and burning hips. I don't want to find it a struggle to get out of bed to go to the loo, and to pull on my dressing gown.

I'm struggling with exhaustion. Why am I so tired? I've always been tired with the crohns but never like this. Never to the point where its unsafe for me to drive. never to the point where I walk into things and drop stuff. Let alone forgetting simple things.

My work are so supportive and understanding of my illness, I'm very lucky to have that support.
But there's a niggle at the back of my mind that, there's only so much any one person can take from an ill person. I know that better than anyone.

I'm behind on my College work. Its my last assignment and I have 10 flower identities to remember. But due to my terrible memory at the moment, I literally cannot remember them. I've had these for at least 4/5 weeks and I just cant get it

I'm not gonna lie. I am worried.

We've had to get a cleaner. Because I just don't have the energy or level of care to complete the tasks that make life easier for myself and my boyfriend.

When did I stop caring about myself?

When Crohns returned.

When I started to fear eating again.

When every time I go to the toilet there's blood.

So much blood. All the time.

(Just a side note, as I write this, my back is hurting me, it feels like elastic bands pinging all over my back.. WHYJGRIOVNIVNDCMK!!!)

Things were easier before when I was ill. I didn't have bills to pay. I could afford to sit at home and be ill in peace with my Mum caring for me.

There's a line in my email that brings a lump to my throat every time I think about it, say it or type it.

I'm really struggling, I don't know what to do. Please help me.

It then reads

I feel really alone in this... even though I'm not.

My family are amazing, as is my boyfriend who cares for me daily.
Katie, is a friend who I know if I needed her, she'd bend over backwards to help. Shout out for you Katie!

I wish I could say the same about other 'friends'

My internet 'friends', are always caring, messaging and helping

I've not received a single text or call, or visit from any one who lives within a 10 mile radius and classes themselves as a friend.

At the time in my life when again I need all the people in the world.

I couldn't feel more alone.

The last line in my email says,

The thought it could be weeks until I feel better scares me. I don't know how I'm going to keep up the act that I'm doing ok, and that even though I feel bad Ill say I'm ok.
When I'm not. I cant do this.

My consultant is calling me Wednesday to discuss how they can help me. I've never asked the hospital for help before.

Found out today my calprotein is still very high. It should be 50 or less but mines currently chilling at 335. Does that give a picture of how rotten I'm feeling?

I keep having melt downs, where I start crying and fear I wont stop.
They've even started happening in public places.
In front of people I don't know, and whom don't understand.

But then again. None of you understand.
We may be united in illness, some of us.
But at 3am, when I'm doubled over the toilet, feeling sick and bleeding, who's there to hold my hand and tell me it will be ok? No one.

I've cried my way through typing this, and you probably all think this posts silly but this is the way I choose to lay my feelings down.

I'm not gonna lie.
I'm really struggling. I don't know what to do.