I’m a Big Boy Now

I’m a Big Boy Now

Many of us live with a reality that we’re too embarrassed to talk about, even with medical professionals. Multiple sclerosis (MS) prevents us from pooing properly — no matter how much fiber we consume or how much water we drink. I wrote about this in a recent column.

As our biological machines break down under the ravages of MS, those of us who are lucky enough live in the affluent West at a time when machines can replace our missing abilities. I went to work for the first time in my powered wheelchair last night; it’s a long story (I work in a comedy club), but due to fire regulations, that had been impossible until now.

When the taxi dropped me off at home afterward, I made my way to the front door and let myself in. My wife was asleep on the couch. I made a sandwich well past midnight and put myself to bed. (Sort of, as I didn’t have the strength to get my right leg into bed properly; it’s been a trying few months.)

I’m a big boy now.

On Saturday, one of my machines suddenly failed, and I was thrust into the netherworld that I’d previously left behind. That latter word is apt, as the failed machine was my anal catheter. I’ve only been using it for about six weeks, but it’s now as important to me as my powered chair.

I can’t believe that I’d lived like this for years, but you find a way of coping. You endure.

The details are sordid. My only option was to take vast quantities of laxatives and spend the day sitting on the commode.

It gets painful. There is no control and little notice.

Finally, I gave up and went to bed.

At 5:30 a.m. on Sunday, I was forced awake and scrambled to get back on the commode. It was no easy task — even at full pelt, it takes five minutes to lower the hospital bed and then arrange my legs so that I can stand for the few seconds needed.

I made it.

And then, Vesuvius.

I was worried that the commode couldn’t handle it all.

For the next 36 hours, this was my life. And yes, once I didn’t make it.

I’d lived like this for the last few years and, stoically, just got on with it.

In the last six weeks, I’d forgotten everything!

The company that supplies me the Peristeen system shipped me a new device yesterday.

I’m relieved!

***

Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.

‘In 1982 John Connor was a stand up, sketch writer & journalist – crap at all three he decided whilst watching a man performing with a paper bag on his head that as nobody else was going to write about stand up he would’. ‘Comics’ Papermac 1990. In 2009 John Connor was diagnosed with MS. In 2017 John Connor still produces/directs his own live 27 year old resident topical comedy show at London’s Comedy Store – ‘The Cutting Edge’. He was also a leading UK Casting Director specialising in comedy – including one of the hippest shows ‘Black Books’ [double BAFTA winning Situation Comedy Award] & for at least a decade the biggest sitcom on British TV ‘My Family’. TV & MS was a step too far – and we know how hard any step can be. Luckily his satirical show was a built in part time job & with the election of Trump is now in the zeitgeist. John now writes “Fall Down Get Up Again” – an irreverent journey with MS.
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‘In 1982 John Connor was a stand up, sketch writer & journalist – crap at all three he decided whilst watching a man performing with a paper bag on his head that as nobody else was going to write about stand up he would’. ‘Comics’ Papermac 1990. In 2009 John Connor was diagnosed with MS. In 2017 John Connor still produces/directs his own live 27 year old resident topical comedy show at London’s Comedy Store – ‘The Cutting Edge’. He was also a leading UK Casting Director specialising in comedy – including one of the hippest shows ‘Black Books’ [double BAFTA winning Situation Comedy Award] & for at least a decade the biggest sitcom on British TV ‘My Family’. TV & MS was a step too far – and we know how hard any step can be. Luckily his satirical show was a built in part time job & with the election of Trump is now in the zeitgeist. John now writes “Fall Down Get Up Again” – an irreverent journey with MS.
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5 comments

  1. Kathleen Fulghum says:

    Well done, John! You bring relief to others on delicate subjects, and do it with humor. Thank you so very much. Your brain erupts with brilliant teaching.

  2. Caroline Borduin says:

    I’m just entering this world of fecal issues. Knowing others have it too and deal with it is a bizarre comfort. Thanks.

  3. Suzanne says:

    In the midst of cavorting with a challenge MS has repeatedly thrown at me or afterwards as I’m dealing with the battle fatigue or frustration, I might throw something like the time I threw my computer mouse across the room where it hit the wall and irreparably disassembled. I might curl up somewhere and talk myself out of the dark. Or I might leave my body and somehow find something laughable about my situation. I wish I always chose the third option but there are moments or even entire days when I forget I have that option. You remind me.

  4. ERIK OXY says:

    Anymore I do make my MS,a joke now. It seems easier with humor I suppose. I am in the public alot. If I’m in a store and I lose my balance I tell a wry little joke like ,” whoops, I shouldn’t have drank the vodka for breakfast” or ” I guess I need more to drink” or better yet “I just felt an earthquake” , I mean really , I don’t take the world that seriuosly, I never have and I never will. I have had M.S. for what 30 years I think and it is taking it’s toll, but in general time always wins. I am close to 60, and mentally I feel like I can do everything I did in my 20’s. I suppose i still think young thoughts. Christ I even think about sex all the time !!! So…. I just wish it didn’t hurt, and nothing they will give me really works. (Were doctor Kevorkian when you need him ).

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