I’m a 30-something MSer juggling being a wife, NHS worker and mummy to two gorgeous kiddies. I was diagnosed with multiple sclerosis when I was 15 years old, so I have had it for more than half of my life. I have been following the OMS Recovery Program for the last three and a half years.
Learning to pace
I work three days a week as a speech and language therapist, helping kiddies with complex speech and language disorders. I used to group my working days together – Tuesday, Wednesday, Thursday – with the idea that I can ‘get it all over and done with’, and that I would have a long weekend, every weekend. I love my job – it gives me a sense of purpose, it makes me feel useful and important.
I continually assess, plan and revise what I am doing, reflecting on what worked and what didn’t. At the same time, I need to make it fun for the kids: bubbles, games like hide and seek and snakes and ladders.
But all this mental and physical stimulation takes its toll; on my drive home in the car, I yawn away, so much that my eyes water.
I mentally count down to when I can go to bed… first tea, then stories, then kids’ bed, then me. My days off work are spent sleeping; on a ‘good’ day, I might be able to do a bit of yoga and meditation, but to be honest, those days are getting fewer and fewer.
My new working week looks like this: Monday off, Tuesday work, Wednesday off, Thursday work, Friday work. We are lucky that the kids usually stay at their grandparents’ house on Tuesday night, so that affords me the luxury of a possible lie in when normally I would be up, sorting the kids out for school and getting ready to leave for 7:30 am on a work day. I slept until 10 am on Wednesday – 3 1/2 hours later than my work alarm would have woken me up! T
he purpose behind adjusting my days is that I am hoping that having a ‘midweek break’ and not working more than 2 days in a row might help me feel a bit more rested.
Hope for the best...
Will it make a difference? Who knows. If I am honest, my gut feeling says ‘no’- no amount of rest takes me back to that
blissful time when sleep would leave me feeling awake and refreshed – it feels like those days are long gone now.
But I can only try and hope for the best, I want to show that I am doing everything that I can to be able to keep working. The option of dropping responsibility/days is not an option to me, as it would have such a negative effect on my pension. If only I could win the lottery! (Maybe I should start playing it?!)
For those of you with chronic illnesses, have you had to adjust your work patterns? Did you find anything to help? Was there a time when you realized that you could no longer keep going due to your ill health?
From the blog Tripping through Treacle by Jenny Clarkson