Work, DIY and fatigue - Robin's story
Fatigue is a strong, persistent feeling of exhaustion which is common in Parkinson's. Robin tells us how a change in mindset helped him make the most of his energy at work and with his family.
Reading time: 3 minutes
I was 60 and working full time when I was diagnosed with Parkinson’s. I worked implementing clinical trial management systems with major pharmaceutical companies. This meant a busy schedule with frequent international travel.
Long hours take their toll. I began feeling fatigued even on shorter European work trips. Working from home was a winner for me. It meant that I could pace my work out and axe my commute.
The downside was that I often worked long hours to accommodate client calls in different time zones.
Adjustments at work
I discussed moving to 3 days a week with my employer. It was good to hear my boss say she’d rather I worked fewer hours than lose me. If you’re struggling with fatigue, it’s definitely worth speaking to your employer to see what might help. Another option could be annualised hours. Your employer agrees that you work a set number of hours per year and then you agree between you when these hours are worked.
But even working reduced hours, fatigue made things difficult for me. Fatigue in Parkinson’s isn’t feeling a bit tired. It’s like a fog that sneaks up and suddenly engulfs you. Sometimes, I feel like I could just close my eyes and drop.
Adapting my attitude
Now retired, I still feel fatigue. Fatigue used to make me feel guilty and I tried to fight it at first. I often felt like I should be doing something.
But since then, I’ve changed my mindset. Sometimes I do something to take my mind off it. A good hobby can help. Even a short walk outside can make you feel better. I still keep up with my main hobby, my model railway. Even though it’s more difficult now as I’ve lost some of the fine movement skills in my left hand.
Sometimes that works. More often, I’ll sleep for half an hour and I do feel much better afterwards.
Family life
My family is very supportive about my fatigue. My daughter says she would have a nap in the afternoon if she could! I used to be an avid DIYer. I even fitted our kitchens and bathrooms.
I wouldn’t attempt to try anything as major as that now, although my son and I did recently replace an old shower enclosure. I took great delight in wielding a large lump hammer to the dated shower tray! I think keeping a sense of humour is vital.
It’s frustrating not being able to do everything I used to, but I try to remember something my mother-in-law used to say. When asked the secret to her longevity, she replied: ‘I think of all the things I can do, not the things I can’t do’. I try to follow her example, particularly when dealing with fatigue.
You just have to remember to pick yourself up and get back on the roundabout. It’s about keeping positive and not blaming yourself.
Support from people close to you is key. Our son and daughter are a great help. Both have their own families, but always volunteer to do things for us.
Except loading the dishwasher, as everyone admits I can get more in it!
Together we get through it.