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Work and IC

Posted on: Fri, 07/18/2008 - 06:43
Work and IC

Hi all!
I thought this would be a good subject to get some feedback on.  I have been a patient for several years--I was very sick, too sick to work even part time, basically lived in after hour care clinics and the er before I started treatment.  I have majorly improved but it has been a slow process for me with many setbacks and sickness from die off.  In any case, the past few years I have done little things (work related) as my health (and restlessness!) increased and lately I've acquired even more stamina and have been testing my physical mettle.  I started cleaning a laundromat three mornings a week--unfortunately, I can't handle the heavy mop on my own pelvis wise so my husband has to do that part, but the fact that I can do most of it is a big step forward.  So I've stepped out some more and volunteered to help clean a church (it's not huge) for a friend who really needs help.  Well, I ended up with a bad flare from the vacuuming that kept me up most of the night.  This is so tough--I'm well enough to do something, but not everything.  I still can not tolerate sitting, standing or walking for lengthy periods but I get so bored at home sometimes.  I am always looking in the paper for something to do that is only a few hours a week, but you would not believe how hard that is to find.  I do craft shows, but I am losing interest in that because they are not money makers for all the work I put in, even though I've really enjoyed doing it the past three years.  I guess I feel ashamed for not bringing in a real paycheck, and I often wonder what my inlaws and other people think who don't understand ic.  It's the same way I feel about the food thing, abnormal and strange, when people talk about their jobs.  Have any of you been criticized or misunderstood for not beiing able to worK?


In any case, which of you work and what do you do?  How do you handle ic on the job? 
And my most difficult struggle:  Should I just take a job and let the flares happen, or could that impede the healing process and all the ground I've gained??


Thanks for any thoughts
icnot4me


Posted on: Thu, 07/24/2008 - 09:18 #1
Thanks
Thanks for the responses. I know I am the only one who can make this decision. I think what scares me is that I'm precisely where I was several years ago--able to handle things, but with underlying physical problems. In the past they got ignored, I didn't take care of myself, and things ended up extremely bad. I have worked so hard to get well, this has been a very long process for me, I don't want to go back to a stressful schedule that makes it hard to do right by myself physically. I also know what it's like to not be 100% while on the job because of physical problems, and to experience the growing animosity of co workers and bosses because of it. I want to be able to go on an interview and guarantee a potential employer that I can handle things, despite the fact that I haven't worked several years due to chronic illness. I am hesitant to make that promise, but I know many people do work with physical pain and end up ok. I still hit some bad days though, where my husband has to do all the cleaning at the laundromat. But the good days outnumber the bad. I need a job where I would change position -- sitting, standing, moving around. I am praying for a situation like this with an understanding employer, a few hours a couple days a week, to get me started. Like Kriste, I need a job that is every other day so that I can rest in between and allow bladder and bowels to recover until they get stronger. I don't know if such a dream job exists, but I'll keep looking and praying! the laundromat cleaning fell in my lap, so maybe God will bring something else my way too
Posted on: Thu, 07/24/2008 - 10:44 #2
To ICNOT4Me
ICNOT4Me is it possible to maybe try volunteering at something consistently for a little while to see if you can handle the schedule. I know you would want to do a good job as a volunteer as well but there is I think a little less pressure I think. Also maybe it is possible to try different things this way to see what aggrivates you and if you can work through it. Just some suggestions I am by no way an expert. You will figure out what works for you and I glad that you are being cautious to take care of yourself. Kriste

Kriste

Posted on: Wed, 07/23/2008 - 20:43 #3
To ICNOT4Me
Hi: I have been looking at this topic since you posted it and wanting to respond. It is difficult for me to address. I do work as a Child Support Officer. I help divorced and separated parents negotiate their financial obligations for their children. It can be a very stressful job. My position is full time but I have had to go to part time since I was diagnosed in January this year. My short term disability benefits that allow me to work part time run out next month and so I had to apply for long term benefits that will also allow me to work part time. I am awaiting the insurance company's response. I am fortunate that my medical Doctors and also my employer are supportive of me continuing part time until I am more well. My rationale for working part time is that it gives me some normallcy in my life while working every second day allows me to rest the next day. I feel that if I have had a bad night of sleep, I can at least get through the day and know I can rest the next day. I worked so hard to get this position a couple of years ago so this upsets me that I can not give it my all like I always try to. I do at times have to take a day off that I am scheduled to work. I am fortunate that my boss is super supportive. This is important if you do seek employment you will want to investigate how the employer treats their employees. You may want to do some informational interviews to get a feel for prospective employers. In terms of my symptoms I have frequency day and night, back pain from tons of inflammation, eye problems. Sitting was a big aggrivation for my back. It seems that since I have been working with Matia (since May only) my back pain has been decreasing. So working did not impede my getting better. I am fortunate that I am able to get to the bathroom when I need to. As far as whether you should work or feel guilty if you can't just remember your priority is to get better and only you know what is best for yourself and your road to wellness. I have had to learn this the hard way. I knew last year that I was not well but I kept plugging along big mistake. Now I have made my mind up that my getting well is my priority and part time is all that I can handle at this time. All the best to you.

Kriste

Posted on: Wed, 07/23/2008 - 13:14 #4
bump
Need to push this up. biggest concern here as far as work: can engaging in activities that cause flares-ie--sitting, standing, walking for too long or doing something strenuous--deter the healing process and push one backward?
Posted on: Wed, 07/23/2008 - 16:24 #5
Bump
Sometimes I recommend that people work through their difficulties, and I often think that is better. However, sometimes someone is struggling so much that I recommend not wies can make a person worse. Sometimes sitting makes one person worse, whereas, walking makes another person worse. I dont' think though that the activity that makes them worse will deter them from getting well. It will only make them feel poorly. Because as they are getting better in balance, the thing that was activating the symptoms should bother them less and less. Does that make sense?
Posted on: Thu, 07/24/2008 - 12:51 #6
response to Matia
Ok, so you are saying that for most people, it is better to work through the pain and go back to work, while for others, they may end up feeling so poorly it is better not to push it. It is hard for me to tell which category I fall into. I am headed toward it being better to push through. Not sure how to tell when I get there. A bad flare can keep me awake half the night, or only be relieved through laying down. yet overall I have more strength and energy. My bladder still easily flares, it just doesn't make me want to die like it used to. Hard to know what to think. I think the depression that comes from not working could make things worse physically too. Just some confused thoughts, lol!!