Tag Archives: employment

Apr 03 2021
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Blogging

My MS Story: Finding a Way Back to Me

This is guest blog post by Jen DeTracey. She runs the wonderful blog, Women Thriving with MS  – well worth checking out!

It’s been over 10 years since I was diagnosed with MS.

Ironically, on the anniversary, I didn’t think about it. I realized a few days later it had passed unnoticed. This was a huge celebration for me.

I realized MS is just a part of me, not who I am. I learned this many years ago while in therapy to deal head-on with my anger and grief. What showed up most for me was FEAR.

At age 44, I was at the peak of my career as a business consultant when MS showed up for a curtain call. After four days in the hospital, three days of steroid drip, I was sent home. Left hand, leg, and mouth were now in working order but I was slammed with fatigue.

I started asking myself painful questions. Who am I now? What is important to me now? Will I ever be able to work again? Truthfully, I felt like I was dying. Logically, I knew I wasn’t but the grief was all-consuming. Part of me wanted to die.

I knew I needed to shift my focus to something I’d always wanted to do but hadn’t. My heart-centered goal was to self-publish a book for small business owners.

This goal became my anchor. It took twice as long as I had projected due to a massive vertigo relapse, but I did it. It was a very special day when I hosted my book opening at a local café. Friends and colleagues joined me to celebrate. Doing this project saved me.

So many people with MS have to give up their careers. I thought that would be me, too. I decided to continue working just part-time. I also did a lot of soul-searching and attended silent retreats. This gave me clarity on how I could serve others.

Two years ago, I started a private Facebook group, Twitter account, and YouTube Channel — Women Thriving with MS. I had a vision at one of my silent retreats to create an online community for women with MS who no longer work. Since then, I’ve hosted virtual gatherings and met so many amazing women.

Figuring out what is most important, then making it happen while living with MS and fatigue has been healing.

Twitter
@WomenThrivingMS
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Sep 20 2016
16 Comments
Emotions

Future-Proof?

sleepI’m one of those smug people who’s asleep the minute their head hits the pillow.

I slumber straight through to my alarm (stupid, crashing waves on a seashore), which is why I triple-check that The Teenager has his front door key handy at all times.

Not so much recently though; I’ve even surprised him by being upright on the sofa, knocking back hot chocolate and watching Sky News wide-eyed at 1.30 am as he stumbles through the door.

Whether it’s the pesky thyroid or MS, I’m not sure. All I know is that it’s annoying, frustrating and ruining my diet (I munch on toast and pick at leftovers).

Being awake in the dead of night does strange things to my brain. I’m not motivated to add 100 words to my dissertation or go through my bank statements, things that would make me feel saintly in the morning.

Instead, my brain runs riot. Darkness creeps through my thoughts. During the day, I know I’m doing well – working, studying and most importantly, bringing up The Teenager.

However, in the wee small hours, I worry about working (how long can I do this?), studying (how long can I do this?) and The Teenager (how can I help him into adulthood, am I doing enough, am I failing?).

What will happen to me when I can no longer work? With the galling statistic of 80% of people with MS giving up work within 15 years of diagnosis, the future looks bleak and I’m 4.5 years down the line.

On the upside, perhaps I could live on a barge, cultivating pots of geraniums on the deck and gliding through canal-ways? Or move to India and live on a beach, spouting profound and inspiring words of wisdom to gauche back-packers? Or flat-share with a bunch of other mature students, labelling my milk in the fridge and avoiding the gunk in the shower?

On the downside, what happens if my MS progresses?

Without a significant other to look out for me, will I wither away? Be eaten by mice?

I’m trying to be an optimist. I’ve had great treatment. I’m determined to work as long as I possibly can. But in the back of my mind, it’s always there, the thought that one day, this may all change …

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Jan 10 2014
12 Comments
Work and Studying

Plots And Plans

world dominationWhen I was first diagnosed with MS, a trusted health professional asked me, ‘so when will you be giving up work then?’

An outdated concept perhaps, but it got worse.

By the end of the fateful day I disclosed my MS at work, plans were underway to get rid of me as quickly as possible.

Just over a year later, and after not taking the very obvious hints, I was unceremoniously sacked on a dreary Monday morning.

Work and MS. It hasn’t really been a great story for me so far. On the bright side though, my friend has been employing me for over a year now while I look for a new job. The downside is he doesn’t run a cool cafe or bijoux boutique, but a construction company.

I normally work from home doing boring thrilling admin (pyjamas, toast and cat – hope the boss isn’t reading), but sometimes, if I promise to behave, he allows me on site. This week, I was let out to drive a mini dumper truck. Basically sitting down all day, tootling up a lane and back. Not that different from sitting down all day tootling to the kitchen and back, except I had an emergency stop button and the coffee was lousy.

I was given a quick lesson first, ‘this is stop, this is go and this is a steering wheel.’ Yup, got it. Woolly hat on and I was ready to go. To cut a long story short, it’s not that exciting after the first couple of goes. The highlight of my day was waving to a toddler who was peering through the window shouting ‘Bob! It’s Bob the Builder! But mummy, it’s a girl!’

Anyway, as I was tootling along, I realised I really should get a proper job. I’ve tried, I really have. I’m signed up to all the job sites, I scroll through pages and pages of thrilling career opportunities but still there is nothing out there. I’ve moved seamlessly from being restricted by childcare commitments to being restricted by MS.

I know I’m lucky. I couldn’t ask for a better boss, I’ve learned a huge amount and can now read architectural plans like a pro. I even have my own pink drill (honestly). But plans are afoot. I can’t go far in the construction world when I can’t even go up a ladder.

But you know what? I’ll miss the bacon sarnies, the camaraderie and the filthy jokes. What other job can offer all that? Answers on a postcard….

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Oct 22 2013
6 Comments
Work and Studying

Grace Under Fire

everything will be ok in the endA year ago today, I was called into the boardroom at work and fired.

No warning, no procedures followed, this was simply the culmination of a terrible year of systematic bullying which began shortly after my disclosure of MS. According to my employers, MS had made me a liability in the office and I was told to leave.

Looking back over that horrific day, I can see just how far I have come. I am no longer that cowed, bullied, humiliated person who got in her car and drove home in a daze, stunned by what had just happened.

This all took place during my MS diagnostic process, itself a torturous time of relapses, waiting, scans and more relapses. So not only was I facing up to a new life with a degenerative illness and all that entails, I was also at my lowest ebb from the relentless bullying meted out by my colleagues.

At first I was too tired to fight back. Bullies are clever. They slowly dismantle your self-esteem bit by bit. Undermining you, they make you doubt yourself and your capabilities. They shift the goalposts so often you can’t keep track. When that doesn’t break you, they will ostracize you, spread lies about you, snigger as you walk past or suddenly stop talking when you enter the room. School yard tactics maybe, but incredibly effective in the workplace.

Fast forward another few months and my employers settled out of court after I launched tribunal proceedings. I’ve been asked many times why I have never named the company or sector I worked in. I’m under no legal obligation not to do so, but I am not a malicious person. To do that would mean sinking to their level, playing them at their own tactics. Why bother? I have walked away with grace, with my head held high.

Instead, I now campaign for MS and employment rights and I try to help others going through similar situations. Isn’t that a better use of my energy than holding on to bitterness and regret? The few times I think about my ex-employers, I feel saddened that these people felt it necessary to bolster their own fragile egos by deliberately inflicting pain on me when I was in such a vulnerable position. I needed support and help back then, not merciless bullying.

That which does not kill you can only make you stronger? A well-worn cliché maybe, but so very true.

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