Online Diary NO.4 -My Invisible Monster

Sometimes you need to give yourself a break.  And sometimes that is incredibly hard to do.

This post is going to be brutally honest about my illness.   Or, as I’m now calling it, my invisible monster.

I have crohns disease.  If you have journeyed to my blog before you will see I have touched upon it’s effects.

I’m not touching on it now, I’m waging full out war.

Before Christmas I had a flare, it was bad.  I won’t bore you with the details, paramedics were called and they decided to switch me to a dandy little medication called Humira.

Four injections and within three days I could eat again, within a month my horrific stomach pains had all but melted away and my joint pain was no more.  I thought it was a miracle and yet something was… off.

I was anxious, teary and emotional, at first I put it down to the stress of being made redundant and wedding planning.

Then while on holiday with a friend in Budapest, I noticed it.  I was in the shower, getting ready for a night out in the city when I ran a hand through my hair and watched as strands of it pulled away.

I shrugged it off.  It was cold in Budapest and I thought maybe it had something to do with the weather.  I proceeded to ignore it.

A few days later we arrived home, tired from our trip, I bade goodbye to my friend and went home to my flat where my fiancé greeted me.  That night I got into the shower and watched in horror as not just strands of my hair fell out onto the shower room floor but actual clumps.    The water around my feet wasn’t going down the drain and eventually I realised it was because my hair had clogged it.

I hopped out the shower as quick as I could, running to my other half.

“I’m not imagining  this am I?”  I asked, pointing to the shower floor.  “This isn’t normal?”

Shane said nothing – he didn’t have to.

I let out a bark of laughter.  “My hair is falling out.  I’m actually losing my fucking hair.” 

Suddenly all I wanted to do was clean the shower, never before had I been so keen to bleach the fuck out of it. “I’ve got to get rid of it.” But Shane hugged me, held me tight and whispered.  “Rach, go sit down, I’ll do it.”

I sat on our bed and I waited as he cleaned the shower.   That night I cried and then I hated myself for it.  I had never thought of myself as particularly vain but the prospect of going bald, of adding yet just one more symptom to the long list of unattractive things I had to deal with felt almost too much.

Over the next few days brushing my hair became a nightmare, and all across the flat you would find my hair in the oddest of places.  It clung to our bed sheets and pillows and big balls of it would come out of the washing machine.

Then, I came out in full body rashes, raised and red and hot and itchy, all over my stomach, back, arm and legs.

Crohns was horrible, the Humira was almost as bad.

And so the invisible monster had trumped me again, I was frog-marched down to the consultants where I was promptly told that I was allergic to the drug and that I was being put back onto Azathioprine.  Infliximab was too risky what with my reaction to the humira being so quick.

“However, if you do end up in hospital, as a last resort which would you rather be put on, infliximab or vedolizumab?”

I looked at the doctor, trying to determine whether or not he was joking.  Trying to decide whether or not now was an appropriate time to scream.

“Which one am I less likely to have a reaction to?”  I asked, calmly.

“You’re likely to have better luck with the vedolizumab.” He said.

Was this even a question?  “Then that one.” I said.

He typed something on his computer, presumably recording my choice.  Yet another colonoscopy was scheduled and we left.

My hair is still falling out two months later, though I think it might be slowing down.  I’m beginning to lose weight again, not rapidly but just enough that I’ve noticed.  I’m still itchy, though I’ve been reassured that when the Humira completely leaves my system that will most likely stop.

In the meantime I’m taking my Azathioprine (and trying to keep an eye on any potential side effects that may eventually give me.)  And I’m taking my iron supplements, and my b12 tablets and my biotin and I’m still going for my weekly blood tests to make sure that my liver levels are good because, apparently, Azathioprine can damage you there.

I’m writing this post because I have just cleaned my shower again and I have just brushed my hair and I’ve watched as clumps of it has landed in the sink and I feel…done.

I’m tired of being constantly tired.  I’m tired of feeling ill and when I’m not feeling ill wondering when I will be- because undoubtedly it will happen.

I’m tired of the stomach pain, the joint pain, the nausea, the constant trips to the loo, the skin rashes, the mouth ulcers, the weight loss, the constant never ending anxiety.

I’m tired of taking drugs that harm me as much as they heal me.

I’m twenty-three and I’m losing my hair.  On valentines day just past I was in hospital, with a camera in my colon watching in a drug fuelled haze as the doctor took biopsies from inside my stomach – breathing in the happy gas which, truth be told, didn’t make me all that frickin happy.

I’m tired of always talking about my illness.

But more than anything I am terrified.   Almost two years of this illness and the road to recovery is slow and painful.  I’m scared of being deadweight on the people I love.   I panic that my soon to be husband has bitten off more than he can chew.   I am no longer the happy-go-lucky, healthy girl that he fell in love with, but this weak, blithering thing that is always monitoring herself, and constantly on the phone with the doctors.

I’m scared for the future, and what the invisible monster will bring.

When you’re young and envisioning your future, you don’t picture this.  You don’t imagine hospital gowns and injections and the man you love sitting in the waiting room with the boxing magazines you bought him.

You don’t imagine a scenario where your mum calls you every day to check on your symptoms.

I am surrounded by people who love and support me, yet in my lowest moments I feel completely alone, utterly frustrated and angry.

I don’t feel in control.  And that is terrifying.  The invisible monster is waging a battle inside my body and the little bastard is winning.

Sometimes we need a break.  I need a break from the battle, a little respite so that I can win the war.  I have spent the entire day in bed, watching Mr Selfridge and feeling pretty darn sorry for myself.  I’m not going to lie, I’ve been wallowing.  I’ve been wallowing for a while now.

Because there are times where the world is this shining, glimmering place, and I am all too aware of just how darn lucky I am.

And then there are times where it feels as though some almighty being is deliberately pulling at my strings just to see how long it will take me to snap.

I want to say I’m done feeling sorry for myself.  That I’m done being pathetic.  But like everyone I have my ups and downs and I make no promises to not have days where I commit myself to curling up in a duvet and turning the bedroom into a batcave.

I have a lot to look forward too and being scared is natural.  All I can do is fight the good fight.

Because although there is no cure for crohns (not yet anyway – fingers crossed) I do still believe that all monsters can be defeated.  Even invisible ones.

So today I’m going to lay in bed a little longer and wait for my partner to come home.  I’m going to curl up in bed next to the man who has seen me at my worst and yet still cleaned up my hair from the drain.

And tomorrow, I’m going to get up and brandish my sword because this war is not yet over.

To all my fellow fighters out there, don’t feel guilty about not always being strong.  We all need to let ourselves be weak sometimes.  Smiling is not always the best armour and making jokes may not be the best defence.  Let yourself feel what you feel and don’t be afraid to admit that you’re not okay.

Because one day, maybe not today or tomorrow, you will be.



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