I woke up sobbing.
With a loud cry forced out between twisted lips; and tears pushing themselves past closed lids, I came fully awake.
4.00am. Thursday, March 31st, 2011.
The day I was finally broken.
My cries woke my wife and she held me as I wept and repeated “I can’t do this. I can’t do this anymore”.
At 5.00am, she drove me to my sister Zelda’s house. We all crawled into her bed and snuggled under the duvet.
Sat between the person who is always the first to hold me and the person who changed what I thought I knew about myself, I was finally able to say: “Something is wrong”.
And so began my journey into Functional Movement Disorder and chronic illness. And with it came a series of experiences that tested the resolve and endurance of me and my family. Including:
Eight months being housebound apart from attending medical appointments and being rushed to hospital in ambulances.
Becoming dependent on people to wash me and dress me; and to clean me up after I soiled myself.
Having to use a wheelchair because I couldn’t stand or walk for more than a couple of minutes at a time.
The pain that raged through my entire body; leaving me struggling to breath and forcing me to sleep sitting upright on the sofa for ten months.
But somehow, the way the illness affected my voice, seemed to have the most impact.
My youngest sister was living in Barcelona when I first got sick. We set up the call and had Zelda speak to her first.
I got on the phone and said “Don’t be scared, Tsarina. The way I sound makes it seem worse than it is”.
I remember the silence. Then her breath catching. And then she screamed.
The sound ripped across the miles and tore at my heart
I remember the sound of the phone hitting the floor after she dropped it. And her flatmate asking her what the matter was.
Later, my sister would tell me “I thought you were gonna die”.
In time, I became like this:
Today is March 31st.
An anniversary that I seem unable to ignore.
Because it has now been three years.
And something about this fact leaves me alternately pissed off and then mournful.
The thing is that I am at a good point in my illness.
I am still sick, but now we have a name for what I have.
We can laugh about my symptoms (the family have nicknamed me ‘The Crip’) and are practiced at what to do to make me comfortable when they happen.
We have finally found medications that work rather than aggravating my symptoms or leaving me as a drooling zombie.
And three days ago, I was discharged from hospital following a four-week rehabilitation programme.
And yet today, I still can’t shake the sense of loss and mourning.
I am struggling to put the feeling into words, but feel pressed to attempt to anyway.
There is no cure for my illness.
But for the first time in three years, I can do more than endure my body’s suffering: I have tools I can use to start the healing process.
Following on from the hospital admission, I have drafted a ‘Daily Routine’ that is designed to help my body get stronger. In addition, I will be having further physiotherapy and Occupational Therapy input.
There is so much to be thankful for; and yet, I know that when I’ve finished writing this post, I will curl up beneath a duvet and weep.
Why? Because it’s taken three years to get to this point. All I have been through and it’s only now that I can start doing something proactive about it.
But it’s going to be a long, slow and hard fight.
It’s going to take a year of effort before my body relearns “normal” movement.
I will have to be strict with myself.
I will have to repeat actions over and over until my body remembers how to function properly.
Each day will be timetabled so that I can monitor my body from moment to moment to ensure that I don’t push myself too far and relapse.
In addition, the hospital admission highlighted two important points.
The first was discovering that I no longer trust my body.
I cannot begin to tell you the sorrow that this raises in me. My physical self and I have been close since childhood; so discovering that this illness has not only separated us, but has made me doubt her, makes my hands tremble as I write this.
The other was learning that I will be dependent on medication for at least another year. Without them, my body is in too much pain to even start the healing process.
So yes, when I’ve finished writing this, I will curl up beneath a duvet and weep.
The fight to regain myself will begin again tomorrow.
For now, it is enough to give myself the space to say:
I am still here.
I am still fighting.
But God help me, I am weary.
To see how other bloggers are exploring the concept of time, check out Time Machine.
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AUTHOR: I am might war. I have a love of music, the written word, travel, Anime, polar bears, people and “sticking and colouring”.