Living with chronic illness can make life unpredictable – and unnerving. I’ve been at this for 30 years and I’m still surprised by how it can throw me.
We have season tickets to the Boston Lyric Opera. I love the idea of these things but the reality is that I’m physically challenged. A few months ago, after sitting in the tight seats for three hours, my back was in spasm for a few weeks.
The other day, it was 85 degrees in Boston and I dressed for a hot day. Living with multiple sclerosis, heat knocks me out- it can shut down all systems. (And menopausal hot flashes don’t help). A few years ago I bought an ice pack that I read about online. You wrap it around your body when you’re going to be in a hot place for long. It didn’t work. I never had it when I needed it.
Being it’s early May, I forgot about pitfalls of air conditioning. I was wearing open shoes and I became an icecube. My hands and feet turned purple and painful (raynaud’s). And this had nothing to do with multiple sclerosis – my “serious” disease! I didn’t have anything with me to warm my feet and hands. This completely distracted me and I couldn’t focus on the opera.
I know that I should have known better and been prepared. I talk about preparedness endlessly with clients. What do you need at work to make sure you’re ready for whatever might hit you?
I also know I can’t be prepared all the time. My intention is not to burden others with my moods. But sometimes I get miserable and really cranky and it bubbles up in spite of my efforts. I do my best to reserve this for where it’s safe and appropriate – my family and good friends. I keep it out of my professional/work life where it doesn’t belong.
I’ve trained myself to do this in my work life. But sometimes I let down my guard elsewhere. Having an intention is a good place to start.
What do you do? How is it going?
This Sunday is Mother’s Day. For all who are mothers, have mothers or know mothers, I’m making this special offer.
MOTHER’S DAY OFFER: Do you want to work with a coach who gets what it’s like to live with chronic illness and can help you achieve greater job satisfaction?
For the month of May 2010, I am offering a special deal to all blog readers (you don’t have to be a mother!)
When you make an investment in your career and sign up for 3 months of career coaching with me, you receive 50% off the standard fee for 3 months. (That’s a $450.00 savings!)
Note: You must have a chronic illness or chronic condition and you must be currently employed or actively looking for a new job or career.
Want to know more? Email me, Rosalind@cicoach.com, and put Mother’s Day Special in the subject line.
Toni Bernhard says
Unpredictability gets the better of me all the time. I try to handle it by working on forgiving myself — over and over…and over again.
I think you’re right though that the key is in our intentions. If our intentions are good (not to harm ourselves or others) then even when we slip up (e.g. overburden others with our troubles), it’s easier to forgive ourselves and move on because we know deep in our hearts that our intentions were good.
Rosalind says
Thanks for reminding me about the “forgiveness” piece here. That’s a great point and one I should have made.
Cindy Earl says
Nicely said – you’ve expressed what so many of us feel about expectations. The hardest part of the unpredictability for me is feeling like I let others down if I’m having a bad day and can’t participate in something. That part breaks my heart. Yet, we must listen to our bodies first and stand up for what we need, rather than pushing to exhaustion.
Michelle says
Unpredictable pretty much sums up life for anyone with chronic illness! I have a big pocketbook filled with so much stuff that it could classify as a medical kit, yet, inevitably I will be missing the one thing I end up needing. I try to remind myself that the most important piece for me is always my mind. If I feel in control and able to handle whatever happens (blue toes – that’s happened to me too) mentally, then I can generally get through anything. Deep breathing and trying to change my focus from whatever ailment I am feeling is often what works the best – and forgiving myself and my body – as hard as that is, is essential.
Rosalind says
Interesting about changing focus. I do a practice called “focusing” which allows me to bring my attention to the part that is in distress and open it up. It helps tremendously.
Pam says
Having migraines that are triggered by smells and foods has made my whole life one of unpredictability. I have to plan or I will get into trouble. And even when I do, being out in the public is always a risk for me, so there is nothing I can do but go ahead and live my life. I agree with Michelle, in that if I feel in control, it makes it so much easier to deal with the pain. I recently had to deal with something that I thought was out of my control, but was really giving me so much stress. When I took control of the situation and eliminated it, I felt so much better. It was like a weight was lifted off of me. So, sometimes taking charge of the unpredictability is the key.
Rosalind says
One thing I notice is the difference between thinking we can be in CONTROL versus taking charge. Can we really be in control of most things? Especially around illness? Can we even control our thoughts? Doubtful. But can we take charge of how we respond — not by controlling our feelings but by taking charge of our thoughts and then our behavior? It’s worth a try. I wrote a post about this – Are You Driving the Bus? — but I can’t find the link 🙂
Mary Wilson says
Very helpful post and comments. I live a with chronic illness that is not my own but my husband’s. I’ve found that the elements of preparation and attitude apply to the caregiver or spouse as well. I’m usually the one who needs to do the planning, make the lists, etc of everything needed before we go on a trip. Meds, medical equipment & supplies, food etc. Even then, unpredictability is a given, as medical emergencies have occurred on several vacations. I’ve found that I need to have an intention as well as my husband or things will quickly degenerate. Sometimes, a sense of humor has saved the day for both of us when the unpredictable occurs, and we have turned it into an adventure.
Rosalind says
So true about spouse role. Mine is always double checking me before we go anywhere. In the end, humor always saves the day.
Marsha says
Seems like regardless of how prepared you try to be it never works! I always make sure to have all my meds, but on our recent road trip it was the sun! One of my new medications must make me extremely sun sensitive because after three and a half hours of sun exposure I was ready to pass out – time to start wearing sun screen and drinking more water!
Benia Zouras says
I just wanted to thank you for this post. I’ve referenced it in my my last post about how my Fibromyalgia’s unpredictableness has recently affected me and my work life.
http://xsarenkax.blogspot.com/2010/05/unpredictable-nature-of-fibrobeast.html
Rosalind says
Thanks for letting me know this, Benia!
Ismael says
Excellent point Emily! Oh since you already have it I hope you’ll join along with me and see what gems you can pull out to add to your cnrreut marketing. I’m sure there’s something you could work on Thanks for adding your comment. I bought the book last year, read through it, applied some stuff and then moved on. This time I really want to dig through it and get every last drop of Rosalind’s wisdom out of it while sharing that with my readers at the same time.