People are in the business of busy-ness. No time to stop, no time to think, too busy, there will be time another day, if time permits, time goes too fast, where does the time go, I don’t have time, time is precious, time flies, wasting time, making time, good time, bad time, anxious times, happy times, sad times, sign of the times, timing, timeless, limited time….

Time is a constant and it is what you make of it. You decide how YOU spend your time. Well, most people do, I don’t (for the time being).

They tell me be patient, all in due time, take your time, you’ll know when it’s the right time… Time. Time for me is a ’4-letter word’.

For everyone enjoying their time out there in the ‘real’ world, time flies and there never seems to be enough in one day to do all you want to do. For me, time is precious. What if I don’t have much of it?

“Be patient” they tell me. Yes, be patient, as if I have all the time in the world. Be patient…. I’ve been patient for months and now I am losing patience. I’m tired of being a patient, I just want to be myself. I want to be ‘me’ in my space, not an institution, at the mercy of everyone and everything with not much say or control of anything.

Try being in bed for almost 4 months, feeling like a caged animal, no freedom, completely at the mercy of others, a prisoner of circumstances, trapped by the current limitations of my own body caused by being here too long.

Too much time hospitalized has changed my entire body, inside and out. My body shape is different as I used to have an hour-glass figure and now I’m a pretzel (or so that’s how I feel). I’ve been in bed so long that my shoulders are hunched and my middle is fat – ugh!

My lungs still have some infection in each lower sections which show signs of tissue damage caused by having pneumonia for such a long period of time.

As for my liver? Well, although the Bilirubin is finally in its acceptable range and therefore no longer life-threatening (which is a good thing), the liver is nonetheless still struggling and may never get back to normal, even over time.

My skin is paper thin, see-through, glow-in-the-dark white for lack of sunshine, except for the remnant dark splotches from the skin GVHD. That should change over time.

I also have multiple bruises all over my limbs from knocking myself ever so slightly on any hard surface such as my bed (due to low platelet counts). My belly is also bruised from injecting insulin, sometimes up to 5 times a day, for months. My limbs and belly look like a battered pin cushion. There are bruises that are taking a long time to disappear. Time.

Time and circumstances has also changed the shape of my lips due to mouth GVHD and again, too much time on steroids. My eyes are still slightly yellow but I understand not as much as they used to be. I know, let time do its thing and all should be back to a relative normal.
Thank goodness there are no mirrors in my room as I’m not sure I want to know the state of my appearance. My face is still moon-faced since I can feel it but I’m not sure I want to know how frightful and different I look. Not only am I wasting time but I also wasted muscle mass, body mass and now, I feel like I’m losing my mind over time.

Not only am I white, my bed linen is white and my walls are beige. That my friend is the epitome of lack of visual stimulation. Not only am I eating bland food but I live in a bland world. Even my current view is that of the side of a beige building. Boring much? I would say so. Time is long in a beige world.

My social interaction is the endless progression of hospital staff that all blend together, just like time. I’ve gone through a few monthly staff rotations over time. They recognize me but I’ve stopped bothering learning their names as there are too many and I stopped caring.

I’ve been here so long that my hospitalization medical file is now 4 jumbo ring binders. Every time they transfer me to another room, they almost need a carry cart just for my file. Time has made my medical file heavy and cumbersome.

My constant companion throughout this entire time has been my IV pole. How sad is that? Tethered for months and months to a whirring, buzzing, beeping, chugging machine.

The more time I spend here, the more stir-crazy I get. I now get upset and cry at anything and everything. I am at my wits’ end. So close to being discharged and yet it feels like an eternity. Time has stopped.

Be patient. Yeah right! It’s only a question of time. Well that’s the issue, isn’t it? Too much time here. What you consider fleeting time, only a little time longer, for me, it’s ‘doing’ time.

Yes, it takes time to build muscles and physically, I see the progression and improvement daily. Emotionally and psychologically however my needs are not met and I am losing it. I am at the end of my rope and it is so time to go.

I’m physically, emotionally and psychologically exhausted, drained, spent and yet, I still need to find the strength, energy, determination to keep on pushing. It feels like I’m surrounded by quick sand where I try to move but everything around me pushes me back down. Over time, it gets to be too much.

Today, someone came to change my calendar to the month of June. I cried. (Again, I pretty much cry at anything and everything now). I’ve had a calendar sheet in front of me reminding me of all the months slipping by. There goes February, there goes March, April, May, and now we are in the month of June? Think about it….these are not just words on a piece of paper, these are months, this is the passing of time. In fact, as of today, I have been here 111 days. That’s 1/3 of a year!

One third of a year in a hospital bed. Yes, be patient, it’s all a question of time…

It takes time to build muscles, time to heal, but time is what put me in this physical and emotional state. Time is driving me stir crazy, literally.

Till next time…. ?

Marie-Chantal