The Hidden Truths of My Chronic Illness

It is no secret to those that know me that I had a major operation in April 2015. If you don’t know that I had my rectum removed and my anus sewn shut, then it’s likely that you haven’t been my friend for very long, because one thing I am not is secretive about it. It is also no secret that I have been taking very strong prescription pain medications, which I am currently trying to wean myself off of. My life is an open book. I share stories and photos regularly online about what is happening in my life on a day-to-day basis.

Except it isn’t, and I don’t.

I share what I want people to know. I post the photos that I want people to see. I tell the story that I want people to hear. I am “open” and “honest” to a degree.

About a year ago, I shared a photograph entitled “Batch cooking.” It was of an array of dishes that I had spent the day preparing for my family and a friend who had had a premature baby. There was an obscene amount of food. This photo gained likes and comments galore. It told a story of a woman who has her shit together, so much so that she can cook two weeks worth of food in one day.

That picture also tells another story. The story that I don’t tell, don’t share: the story of a woman who cooks two weeks worth of food in one day because that is possibly the one day out of the month that she will be well enough to cook. So she fills her freezer.

In the past 21 days, I have cooked from scratch five times for my partner and I. Our main evening meals have consisted of pre-cooked meals from the freezer (some batches cooked by me, others by the supermarket), takeout, sandwiches, cereal and porridge, cheese on crackers, chips, biscuits, yogurt or nothing at all.

My children have a home-cooked meal most evenings; however, they mainly consist of things that I can take from the freezer and throw into the oven: pre-cooked lasagna, sausage rolls, chicken nuggets (homemade, batch-cooked and frozen) or pasta with bacon pieces and tomato sauce, always cooked in bulk so they can have it for more than one main meal. Convenience isn’t a luxury, it’s a necessity. And I have learned how to make healthy, child-friendly convenience foods in bulk. I’ve had to.

My partner is not so fortunate or well looked after.

It also hasn’t been a secret that I have started performing again. I appeared in Jesus Christ Superstar last April, Rent in December, I wrote and performed my play, Kat’s Bag of Crap, in February and I am appearing in Bad Girls the Musical next week.

What I haven’t shared is my partner’s reluctance in my committing to all of these shows. He was worried, and continues to worry, that I have taken on too much. That I wouldn’t be/am not well enough/am not strong enough to manage the rehearsals and performances.

Of course I fought him on it. Insisted that I was fine. That I was getting better. That I could cope.

He was right to be concerned. Because I am barely strong enough and managing. I am holding on by the skin of my teeth.

Although I am making it to and through rehearsals and am enjoying myself immensely, I am also in a considerable amount of pain during and after each and every one.

The thing is, I am used to being in pain. On any given day, my pain level ranges from two out of 10 to seven out of 10. Every. Single. Day. My baseline, my normal pain level, where zero is no pain, and 10 is unbearable, take-me-to-the-hospital-now-because-I-am-about-to-die kind of pain is three out of 10. This is with two different types of kickass opiate pain relief I am constantly on. I am almost never pain free. When I hit six out of 10 I take something to help me; otherwise, I just get on with it. Pain is normal for me.

I am currently in bed, doing nothing but typing, and my pain is at a five, but I’m happy because an hour ago I was at six. So yes, I am rehearsing three times a week. Yes, I am taking part in a show. I am also taking opiate pain relief before, often during and always after each and every rehearsal and performance.

I haven’t told anybody this truth. I am petrified that I won’t be able to make it through the eight performances I have to do next week (11 if you include dress and technical rehearsals). I know that once I am on the stage, adrenaline and excitement will get me through each show, but I have to make it out of my bed, into the shower, out of the house and to the theater before the adrenaline can do its job. Today, I have struggled to get out of bed to use the bathroom.

Another non-secret is that I am looking better than I have looked in decades. My exterior is banging right now. Curves in all the right places, hair behaving, tummy decreasing. I have a waist. My levels of narcissism are rising at an alarming rate. Constant selfies flooding your timelines of me in lovely dresses, off to church. What I don’t share is that I dress up, go to church, leave church, go to my Mum’s house, change back into my pajamas and sleep on her sofa while she cooks lunch. I wake up, eat, sleep some more, drive home, give my children a light dinner, put them to bed and go back to bed myself. Every single Sunday I spend 9:00 a.m. – 12:00 p.m. looking fantastic. Three hours. That’s it.

I have had to have a nap every single day this week. How my partner puts up with me is anybody’s guess.

With all that said, I maintain that I am getting better. I am happier than I have been in years. My good days may not have increased in quantity. I may still spend a third of the year in my pajamas, unable to function due to debilitating fatigue. I’m not able to shower, dress myself, cook for my family, leave the house or lift my head from my pillow. Even though I often still have to use a commode in my bedroom to urinate because the stairs are too much for me to manage… Even though my partner has to remind me to shower and eat on the days when all I can do is sleep… Even though my bedroom is often the only room I see for days at a time…my quality of life on my good days is the highest it has been in decades.

I am no longer simply surviving, I am living. Sadly though, it hurts to live.

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Thinkstock photo via tommaso79.