Working with the Monster on your back

I know MS is on the public mind at the moment after Jack Osborne saying he’s just been diagnosed and as much as I wouldn’t wish this condition on anyone I can’t help feeling a little glad that it is being made public so that more people will understand what we go through each day.

I’ve been thinking about how different my life is after being diagnosed with Multiple Sclerosis and I think the biggest thing is it’s affect on my working life. Before I was diagnosed, I was a science teacher. I worked more hours than I probably should have for very little thanks, trying to instil into teenagers who didn’t really want to be there some sort of enthusiasm for their education as well as teaching them about science obviously. It was hard work, it was stressful and some of those children tried to make my life a misery! It was while I was doing this job that I was diagnosed, I knew too much too fast as I had studied this condition at University especially the worst parts and lost all hope ending up with what my psychiatrist dubbed an ‘Adjustment disorder’.

It took me years to overcome the anxiety and depression enough to start looking for work again, and though my Neurologist encouraged me saying that teaching should not be off the cards, I had been out of it too long and couldn’t find a part time position anywhere that would suit my new situation. I couldn’t believe how bad it felt and sometimes still does feel, to realise that the profession I had set my heart on, the role I enjoyed and got so much out of would no longer be a part of my life.

It took having to have a support worker come and help me get out into the community again to make me realise that this set back did not mean the end for me. She was brilliant, I can never thank her enough for the help she gave me. With all the talking in the world my anxiety was not getting any better until she came along, Jo, a bubbly forthright lady who told it like it was and didn’t mess me around. She got me out and about, pushed just hard enough to challenge the anxiety and listened when I needed to talk about the problems I had without any negativity. It’s bringing tears to my eyes remembering how good those times felt, to be understood so easily and the praise she gave for how well I did. The encouragement and positivity she radiated gave me the push I so desperately needed, built up my confidence and even helped me find a way back into employment. Jo was more than a Nurse, she was the kind of person I wanted to be and that’s why the idea struck me. I wanted to be a support worker like her.

Now I wasn’t going to go off and train as a psychiatric nurse, I don’t think I could have coped with the training. So I started looking into positions as a support worker that would allow me to train on the job. Thanks to a group who specialised in helping people with disabilities and had been off work ill for a long time I hunted through the job pages. They supported me to bolster my CV, built my confidence and made me realise I still had a lot to offer in the work place, I wasn’t worthless after all!

Through them I found the position that I’m in at the moment, I support adults with learning disabilities to live their lives as ‘normally’ as possible, to bring them into the community and allow them to take part in activities they enjoy. Don’t get me wrong it’s a hard job sometimes but the benefits! The fun we have and the feeling that I get when they manage to do something they have previously struggled with, with the look of pride on their face and in their voice makes me glad that I found this profession.

Ok so the impact of MS on work….well it’s hard I won’t lie. I have to work part time on short shifts so that I don’t exacerbate my condition and the fatigue is a constant struggle, but while I’m at work I make the best of what I can still do! It even allows me to understand their issues better, if they struggle with anxiety? Hey I’ve been there and still do sometimes so can see the signs and know some ways to help with it. Their legs don’t work properly? Me too! but if I can do it so can they and it seems to help them to know that I truly understand what they’re going through.

The major problem is the stress of working, making sure that my manager understands I’m not just being awkward when I say I can’t work that many hours in a week/day or that going for a long walk with one of them is not possible today as my legs are acting up. I’ve been lucky so far, my medication is working to control relapses and pain so I haven’t had any major problems and fingers crossed it will carry on this way. I have accepted that at some point I will have to leave this position, but I can only hope that it is not for years yet and when it happens…well by then I may be good enough to swap over to training others or maybe doing office work. I’m determined to be positive about it when it happens whenever that may be.

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2 thoughts on “Working with the Monster on your back

  1. Like you, my MS caused me to retire six months ago, from my 30 year career. The stress of being a legal executive assistant was becoming more than I could handle, and at last had to resign. I’m not working, I don’t know what I can do, only know what I can’t. It’s hard to give up what you do for a living, even if you didn’t choose a career so much as fall into one. I was upset today about what this disease has robbed me of–all of it invisible. It would be easier if I had some obvious sign of disease, but alas, I look completely healthy.

    I am glad you have found something equally as rewarding as teaching. As for me, I’m trying to re-write my great American novel from memory, as no printed copies exist and my back up disk went bad. I figure I’ve got about 30 years to finish it.

    1. It’s hard looking healthy but feeling terrible, people are becoming better informed about things though, slowly but surely people will learn to accept those who suffer invisible illnesses. I’m sure you’ll manage it, it might even turn out better than before!

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