Our day job is an important part of our identity, and being diagnosed with MS shouldn't mean giving up the things that make us who we are. But the unpredictability of MS may mean that you have to make some adjustments to how you approach work. In this guest blog, Carla, who was diagnosed with MS in 2008, suggests some simple changes you could make to help manage work life and MS.
Working has always been very important to me. It's more than just about the wages at the end of the month, or about the sweaty Summer commute. Working is another way for me to connect with others in a meaningful way. I find purpose and reward in what I do, even if those rewards may seem very small to others.
Working with MS can sometimes be difficult. Reasonable adjustments do help, but sometimes it's also about how you approach your symptoms at work.
1. Work out when you are at your best
Are you a morning person or a night owl? Does your current job suit this aspect of you? If the hours or working pattern aren't working for you, can these be adjusted? For example, I work best in the mornings, so my contract starts an hour earlier than everyone else. No cost involved, just a simple, win-win, reasonable adjustment.
2. What triggers symptoms at work?
This past year, I've experienced pain and fatigue at levels I have never experienced before. It's really made me think about my approach to work. It's a fine balance between being at my best for my team and looking after myself. I'm still learning but if, like me, fatigue is your Achilles heel, which tasks are energy-stealers? I work in an office and schedule most of my meetings in the morning, when I am generally at my most contributory, rather than the slurring, low-energy Duracell bunny people might encounter in the late afternoon.
3. Find resources and tools that help you
Beyond a workstation assessment or specialist equipment, what else might help you through your day? If your memory is as shocking as mine, you'll need to write things down ...often! I always have my phone handy to jot down reminders, and I can get into the company email too which gives me flexibility. I have a notebook that has lots of tabs, one for each area of work I look after. Fortunately, this makes me look like Miss Efficient, however the reality is it keeps me in check, as I can refer back more easily and the act of writing triggers my memory.
4. Put aside time to plan your day
The hour before everyone starts work is a God-send to me. It not only gives me a chance to catch up on emails, but it also allows me to plan my day. Most people don't need to plan the way we do. When you have MS, you have to be strategic in your planning, in part due to the cognitive challenges fatigue can bring. For example, there is little point me putting together a report at 4pm; it won't be nearly as effective as it would be if written at 9am.
I build breaks into my Outlook calendar, which to everyone else must seem like I'm being over-protective of my time, but I do this to remind myself to go to lunch. Yes, it's true, my tummy rumbling is not nearly enough to make me leave my seat. If I'm on a roll, I forget. Same thing with my medication, which I take during work hours.
5. Can you ask for help?
I know, this is so hard when you're an independent sort of person. I'm always worried that someone will think me incapable or that I'm passing along a burden. However, the opposite is actually true. We are very capable, otherwise we wouldn't have been hired or be kept on in the job. If you need reasonable adjustments to be made – remember, it’s not just about specialist equipment - then it's worth looking into. Think of how much more effective you'll be with the right support.
Whatever your work environment, you'll try things and sometimes they'll work, sometimes they won't. Find what MS work hacks work for you and keep adapting where you can.
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