Recently I experienced, yet again, how hard it is to work and live with waxing/waning chronic illness.
And this just reinforces why I think that that working is the smartest thing I can do for myself.
When we traveled to California to visit friends, I knew it would tire me. The time change and long flight are always hard for me.
But I know I need fun, even if it costs. We had a great time and I came back very tired.
I had a business trip to NYC two days later. The project involved being interviewed about the challenges of working with a chronic illness. And it would be videotaped.
I knew this wouldn’t be an easy trip either. There was pain in my back and feet (typical MS stuff) and my husband, Jake, wouldn’t be there to pull the suitcase/laptop. And a chalazia in my eye (like a stye) wasn’t improving.
Wouldn’t you know? The day before the taping my eye became infected. When throbbing pain in my eye woke me during the night, I gasped when I looked in the mirror. My eye was angry red, only partially opened and that side of my face was swollen.
I was up a lot that night, feeling really sorry for myself and … feeling sorry for myself.
The good news is I didn’t panic in the light of day. I realized I would get through this somehow. Make up hid it well enough so it wasn’t noticeable. I laughed when I was on the set about how I looked and acted like it was no big deal. Others laughed with me– and acted like it was no big deal either. I enjoyed myself that day immensely. Luckily the work was really interesting. I completely forgot about how painful my eye actually was!
Here’s the kicker. When my husband met me at the train that night, I did something I’ve never done before I told him I needed him to tell me how badly he felt for me. And that he was proud of me for getting through it.
And he did just that.That felt good.
What do you do when you think you can’t go on but you also think you have to? What do you do for yourself when you’ve used everything you’ve got just to get the job done?
I’d like to hear it – -and so would others.
Do you want to talk with others about this? I’ve created a cicoach.com facebook (click here) discussion page for just these topics. You don’t have to friend me — or even be “on facebook” to join. Or paste this into your browser: http://www.snipurl.com/cicoachfbwelcome
Sue Morgan says
I really related to this story. I am the Administrator for a 125 bed Skilled and Rehabilitation facility. I was diagnosed with MS 7 years ago and have been on Rebiff therapy almost that long. Many days I look out my window at my car and think “how am I ever going to be able to drive home?” My job is 24/7 and has its rewards but also has its share of down side. You can’t put off a family who needs to see you or staffing problems because you are having a bad day. No one cares how tired you are. They are caught up in their own medical dramas. I virtually vegetate on the wekends trying to store up enough energy to go at it another week. Week day evenings it’s a light supper and in bed with the TV by 8:pm. It really is a matter of survival. I am my sole support. But I have often thought that if I did not have a job that fortunatly I can do from a wheelchair if necessary, just what would I do? I am still far more active than other people I know who had had MS as long as I have and I think I owe that to my job and the the Rebif. So I will continue on even when I myself don’t know how I am going to do it because to pull out of a 30 year carreer would, I am afraid, leave me hopelessly adrift. You just get through the day the best way you can for as long as you can. It works for me so far.
Rosalind says
Thanks for sharing this, Sue. It can be lonely some days knowing that you’re alone dealing with this – no matter how many people you’re surrounded by. You’re right to appreciate what you’ve got and to keep doing it. The alternative can look better but rarely is!
Mary says
I put an applause ringtone on my cell phone. When I have really done a great job & it took a lot of my energy I give myself a standing ovation. Sometimes you just have to throw your own party!