You know that moment when the lightbulb goes on ? I know, too often it feels like it’s getting darker, not lighter (LOL).
But reading Laurie Edwards, achronicdose, describe a recent bout with illness (On Work and Chronic Illness), was such an “ah hah!” moment.
In my zeal to encourage people to keep working while living with chronic illness, I forget to talk about how hard it is. And that working takes a toll on the rest of your life – there’s only so much to go around. Don’t you think so?
Like Laurie, I’ve recently gone through a period where CI has been worse than “normal”. Since early fall, I’ve had severe sinus headaches which also bring fatigue. Like so many chronic illnesses, it’s periodic and unpredictable and there’s range between “I can keep going even though it’s there” to ” This is intolerable!”
When it’s bad, I can’t think clearly, my production decreases and I’m running on empty – nothing left in my system to spare. And these disabling symptoms cause the ongoing disabilities I live with to get worse, e.g., poor balance, incontinence, numbness (need I go on?) .
Over the past few months, my life became that balancing act again. Energy for work = energy for family, friends, myself. I’d wonder: How risky is it to accept the invitation to speak to a group? Am I crazy to start that new marketing project, install a new online system? Should I plan a trip to see our daughters in NYC – or get tickets to a show?
Don’t you hate that? It’s like you’re always second guessing yourself, looking over your shoulder instead of ahead.
When I noticed the spinning wheels, I got back to basics and strategic thinking. Top priority? Keep my body as healthy as possible, my business going and the rest of my life in balance.
On bad pain days, I hit a wall after 6 hours when I stop being productive (or coherent). I didn’t like it but it was the reality. I put it in my appointment calendar so I’d stick to it.
I exercised less but still daily because I need it both to wake up my body and for the routine.
Being there for my family is crucial to me. But I have had to let others cook and clean up — neither easy for me! I’ve minimized contact with friends and that’s big loss but I just don’t have the juice! Especially when talking hurts!
If I wasn’t spending 6-8 hours /day working , I’d probably have “enough” energy to keep up with the rest of my life. But I would have been much consumed with how badly I felt and I would have felt much more sorry for myself. And, undoubtedly, I;d be in worse financial shape. And when these headaches improve, as they finally are, I have work to return to.
What is it like for you when it’s bad? Go ahead – “complain” . If you don’t do it here or somewhere, it just simmers — and the wheels spin.
Rosalind aka cicoach.com
Pam Fitzgibbon says
I agree completely! I could focus on getting well and enjoying my life and family if I didn’t have to work. Or work so much. My biggest complaint is that others don’t understand. They just think you look ok so you should feel ok. Or how come you aren’t getting any better? They don’t understand the word “chronic” means everyday. These blogs are a first for me and so they have really helped me to vent and learn. Thanks.
Rosalind says
Hi Pam — SO glad this is helpful. The thing I always tell myself is that CI is just like – but even more so. If you didn’t work and were healthy, you’d have time for other things. So too, others don’t get it. Most people are capable of really understanding anything they haven’t experienced themselves. And even then, they only see how they did it. We are alone — but talking to people who do get it really does help !
Anne says
I have been experiencing the same. I put on a “happy face” to others yet my insides cry out that enough is enough. The hard thing is that the times call for pushing and being stoic. Hey, others can do it why can’t I?
I have yet to get used to the wild fluctuations in energy that go with managing multiple chronic issues. As Pam pointed out, no one understands.
maria says
I get caught up in a panic mode between wanting to remain self-employed doing what I can and thinking that getting a full-time job like everone else would make things ‘better’. Unfortunately (and fortunately), chronic illness isn’t as black and white as we (and those around us) might want it to be. That constant state of flux is draining in terms of both the physical and emotional challenges, yet the days when illness rears its head forces me stop and review what’s REALLY important. The pressure to climb mountains because they are there is simply too much sometimes for me to take on.
Like you both point out, knowing that there’s a place to connect without having to explain takes some of the weight off when trying to find the answers we’re looking for…or at least help us in keeping those mole hills just mole hills.
Thanks for the post~ glad you’re doing better
Rosalind says
Anne
It’s so hard to put on that”happy face”. And to wonder, why can’t I do it? It is lonely — some understand. We do.
Rosalind says
Maria – It’s easy to think that whatever you’re not doing would be better than this. Remember what your mother used to say (my mom didn’t but someone’s must have). “The grass is always greener”. F-T jobs aren’t what they used to be -Higher expectations than ever and NO guarantees you’ll have employment tomorrow. And often the insurance benefit isn’t what you need. That said — I completely understand what you’re saying and have been there often myself! Thanks. I’m glad to be feeling better, at least today, too!
Sandra says
Coming from a teacher, Rosalind is absolutely right in saying that fulltime jobs aren’t what they used to be. I was encouraged by my family to get into teaching because the pay is ok, the benefits are great, and it’s secure right? Tell that to my shining pink slip warning I got last month.
The worst part is that even though teaching may be secure compared to other industries, the amount of energy one needs is tremendous! Now couple that with CI and it’s a VERY tall mountain to climb on most days. I almost think that any job that is less demanding physically and emotionally would be better for me,
Rosalind Joffe aka cicoach.com says
I was a teacher in the mid 1970’s in MA and I lost my first job after 1 year due to what was called RIF (reduction in force). That taught me that no job is secure. It’s an illusion of the 1950’s AMerica that no longer exists. But with CI, we do long for a job that we CAN DO. That doesn’t seem like a lot to ask but unfortunately it is. I am convinced that those jobs exist it just takes strategic thinking and energy to look for them, especially in this economy.
Sandra says
” I am convinced that those jobs exist it just takes strategic thinking and energy to look for them, especially in this economy.”
I think your next book should be completely dedicated to this topic Rosalind ; ) I’ve been looking for a decade!
Rosalind Joffe aka cicoach.com says
Not sure that’s a book I want to write. But you might try The Right Job Right Now Susan Strayer.