Organizing My Illness

August 2018

I try very hard to compartmentalize my life.  My social life is my social life, my work is my work and my illness is my illness.   And never the three shall meet!  I try very hard to make sure that my illness doesn’t encroach or interrupt the other areas of my life. 

Of course there are times when that is not possible, and for a long while it felt as though my life was my illness.  Though since I’ve had my surgery it has been far easier to separate the Crohns from, well, everything else. 

Easier but not full-proof.

Take this weekend for example, we went camping with my husband’s friends and family but we had to leave a day early because I had an MRI appointment.  

And then I turn 25 next week, and I have the entire week off work.  Not because of my birthday but because I have a colonoscopy appointment three days after. 

I work part time at the moment, because I have to fit my various appointments in.  And I try to organize my friends and family and husband-time for when I’m feeling my best. Oh, and then I write, wherever and whenever I can. 

I always feel like I’m on a tight schedule.  It’s as if any minute spent relaxing is a minute wasted, because who knows how long the reprieve from my illness will last?  So I have to take advantage of the wellness that I am feeling while I can. 

Of course that’s silly,  as Spoonies we have to make time to relax and recharge, else we run the danger of overexerting ourselves and crashing. 

But it’s not just my weekly/monthly planner that I am now oh-so aware of.

It’s my… *looks around and whispers*… biological clock.

For I am a woman! A woman that wants children, and I feel as though my illness has put an added pressure on the clock.   I have to be as healthy as possible when I fall pregnant, and I’ve been advised to have a baby while I have my stoma.  But then at some point I will need to have another surgery to either make my stoma permanent or reverse it.   And realistically I can’t have a young baby when I undergo a surgery that puts me on my back for potentially three months.  Then there’s also the question about what my illness has done to my fertility, which only time will tell.

My life is all about timing.  

So I keep on top of my appointments and procedures, I try and do as much as I can, and I’ve found myself making notes on top of notes about what I want.  As though seeing it all written down on paper makes it more real and more like a possibility. 

I guess I’ll just keep trying organize and plan and with any luck, that pesky crohns won’t get in my way!

All the best sweet things, 

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