Monday, November 14, 2016


'I know this transition is painful,
but you're not falling apart; 
you're just falling into something different,
with a new capacity to be beautiful.'
William C Hannan

Do you remember the game Jenga you played as a child? The one with the wooden blocks that get stacked upon each other and the goal is to pull out a block without collapsing the entire tower. The tower starts out strong, solid and centered but as the game progresses the tower becomes unsteady, unstable and ultimately unable to stand on its own.

 I feel like my life currently resembles this game.

I have felt my tower collapse multiple times.   I have sat on the floor helplessly wondering how I am going to pick up the pieces yet again. I have been that little five year old who cries that its not fair that their tower collapsed. That I wasn't ready and that I want another turn! I have held my breath as a piece of me is removed and my whole equilibrium shakes.

Will I hold it together or will I break and crumble?

Pain has been stacked upon pain, fatigue built upon fatigue. Sleepless nights, painkillers, limitations, frustrations make for a very unsteady tower. I open my eyes and wonder will my tower hold today, can I handle another pain filled day? Please just hold a little longer.

My tower collapsed over the last months, I have stared at my broken blocks on the floor and know that now is the time that I must rebuild. I must move forward. I can do this, I have done this many times before.

One block at a time, one breath at a time, one step at a time.

Rebuilding is scary...and confusing. How do I make the pieces fit back together? Should they fit back together? Do I need a new plan to ensure my tower has steady ground?

This rebuilding stage took a turn I wasn't quite prepared for. It was a tower that I had dreamed of but wasn't quite sure on how to build. I was offered a job...! Twelve hours a week; Monday, Wednesday and Friday from 9am-1pm. A job as a care and protection social worker at a wonderful agency where I completed my third year placement. I was to start the next week! Just like that everything changed.


I began placing my blocks on a steady foundation of rest, early nights, self care, medication and ensuring I was surrounded by my solid support system. We all knew this would be a challenge and it still is every single day but I knew I needed to try. Prayers, good thoughts and positive vibes were sent out that I would be able to cope.

It has felt amazing having a purpose away from my illness again. To be able to use all my years of hard study and apply them to practice. On the flip side it has been challenging. I have struggled with the fact that my mind goes 100 miles an hour and is so able but my poor body functions probably well under 50% currently. I get frustrated with myself (which I know is not helpful) when I cannot do what I need to. I will admit that currently every last bit of my strength is going into work and then I am left with not much else. My days off are spent sleeping and recovering...or attempting to.

I am telling myself I am rebuilding. We all must start somewhere and I am confident my body will adjust to this new routine. There is such a fine line between gently pushing my body and completely overdoing it. I need to be aware of this and focus on what I CAN do as opposed to what I cannot.

I saw my rheumatologist here last week and we have decided that it was time to start Methotrexate injections with the aim of me being able to lower my Prednisone (next blog post will talk about this more).

On Thursday I had a dull throbbing headache which I put down to over doing it. I awoke on Friday with it still there but went into work as I had a meeting. I get into work and was checking my emails when all of a sudden my eyes went all blurry and fuzzy. Then my head started pounding like nothing I had experienced before. I'll spare you the details but a stomach upset was then added into the mix. Cue Migraine time!! I found a quiet retreat in the play room on the couch where I curled up to close my eyes and hope that I still might be okay. No such luck. I was driven home where I spent the remainder of the day in my dark room with a flannel on my forehead. Surely sleep would make it go the evening I was still feeling unwell but the pain had eased a bit. I woke up the next morning feeling a little better. I thought it was over....only for it to kick in again with full force. Light and sounds were excruciating and my brain felt like it was throbbing in time with my heart beat. Another alarm bell went of when I was unable to hold down my medications.

Dan called Mum who immediately came down and took me to the emergency doctors. Leaving my dark room was extremely distressing as every move my brain felt like it might explode. I turned up at the doctors in a far from glamorous state. Mum wrapped around my arm, cold flannel to my face and a bowl under my other arm. Thankfully I was taken to a dark quiet room after mum asked the receptionist to turn down the radio.Waiting rooms are not migraine friendly.

I quivered on the bed willing the doctor to hurry up to give me something to help with the pain. After about an hours wait I was seen by the nurse and then the doctor. I muttered a few words and thankfully mum did the rest. I was prescribed an injection which went into my hip (I have no idea what it was!). Mum was told she had half an hour to get me home and then I would probably sleep for four hours. I remember coming home then I was out cold. Sleep was a heavenly escape. Once I woke up I managed some dinner then was back in bed by 8.30pm and slept soundly until 9.30am.

Yesterday I was left feeling very washed out. I felt weak and achy and just generally not myself. I still needed heavy painkillers and because I wasn't able to keep my medication down the day before my body was very sore. There was lots of sleeping and resting and trying to get comfortable. I was still light and sound sensitive. Just to add to the mix I had to inject myself with Methotrexate which I think was the easiest thing I had done all weekend then it was another early night...

Today I reluctantly stayed home from work to begin to rebuild my tower with rest, sleep, warm showers, warm cups of tea and time to allow my body to heal. If I had pushed to go to work today I would have added pain, fatigue and frustration to my already unsteady tower. My head is feeling a lot better and the light sensitivity is now gone. I am just left feeling physically and mentally drained.

What it all essentially comes down to is balance. Will this move make me stronger or will it throw me off balance.

The game continues......but for now it is time to rest this weary head.

I will continues to rebuild one block at a time.

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