How do you work through bad days? - Interstitial Cystitis Network Support Forum

KymieG · 10-28-2000, 06:07 AM

I gave up my position last October when I was in severe pain with IC and after being on Elmiron for about 4 months I'm having more good days with about 1-2 bad days a week. I miss working so much, feeling like I'm productive and helping my husband with our income. I can't deal with trying for SSD...I just don't feel up to going through all of the red tape plus, I hate the thought of feeling "Disabled" But, how do you work through the really rough days? I know I can't take 1/2 days a week off of work...are there any ideas that help you get through when you are having a bad flare? Or, Are there careers that are easier on us IC'ers? I considered getting my nursing degree and working in a Uro office...that should work. LOL!

Down in the Dumps,
Kymie

***ICNDonna*** · 10-28-2000, 06:51 AM

You didn't mention your occupation/training, but I do have a few suggestions: If you have office skills, you might consider working out of a temp agency --- they have many calls for just one day's work and you can say no if you don't feel well. When I worked I used to call an agency if our receptionist was ill.

I was able to work full time (until I retired) in an office setting --- I had a restroom attached to my office and sat most of the day.

Anyone who is in a skilled patient care occupation (Nurse Aide, LPN, RN) can work "on call" for a hospital or nursing home.

Sending healing hugs,
Donna

KymieG · 11-04-2000, 02:12 AM

Thanks Donna! Maybe, that's what I will do.
I do have office skills and computer training. I was in Human Resources and did the hiring for a company. So, maybe that will help. I would love to find something I could do from home.
I get so tired and weak sometimes, I would like to work at my own pace. Anyway, Thanks for your help!

MelanieJ · 11-04-2000, 04:59 AM

Hi Kymie. I work an office job (I'm a training coordinator) and sit most of the day. That makes a big difference, I'm sure. I take my meds when I'm in flare, however, the ones that make me drowsy or loopy, I only take 1/2 of one until I get home.

A friend of mine who is disabled has taken home transcription jobs, you know, like transcribing medical tapes. If you can type and have a computer, you might want to check into this as a work at home option.

I think Donna's idea of temping is a good one too. Wouldn't it be wonderful to control your schedule?

Hope this helps some.
Melanie J.

Melanie · 11-04-2000, 07:58 AM

Kymie,
That's great that you are feeling well enough to try working again. All the others suggestions are very good. I also suggest looking for a part time job. Maybe you could work 1/2 days or 3 days per week.
take care,
Melanie

graceimnot · 07-29-2004, 06:20 PM

I am a certified mechanic, but I had to change my caree. I work at a dry cleaners. It is a easy job, and a lot of the time they need people that are willing to work only a few hours a week. That is how I started and now I manage a dry store. The work isn't very physically challenging. You might check into it. It is the kind of job that I can take light pian meds and still be able to work.

graceimnot · 07-29-2004, 06:24 PM

Quote:

Originally Posted by graceimnot

I am a certified mechanic, but I had to change my caree. I work at a dry cleaners. It is a easy job, and a lot of the time they need people that are willing to work only a few hours a week. That is how I started and now I manage a dry store. The work isn't very physically challenging. You might check into it. It is the kind of job that I can take light pian meds and still be able to work.

Lord teach us to laugh, but don't let us forget that we cried.

When I look at the stars from my backyard I always have to remeber that, just because I can't see all the stars doesn't mean they don't exist.

kelly McC · 08-07-2004, 04:26 AM

I currently am a hairstylist and work about 31 hours a week. It is getting harder for me and work can't depend on me. Right now I am on vacation and have given a great deal of thought to what I want and need to do @ this time. I am still undecided @ I love my job my clients and my co-workers. My boss is becoming very unhappy with me and I will have to see how it goes when I return. I miss more and more days of work and was on disability for 6 weeks this past year. I find myself getting very streesed and causing panic attacks before I have to go to work. I have 3 more procedures scheduled and a post appointment which all had to be scheduled during work days so I already know my boss will not be happy with me when I return. She's started rolling her eyes @ me and said things like I am trying to run a business @ as if I asked to be like this.She always says thigs like how can they make you work (my doctors) how weird is that they dont make me work I chose to work. It keeps me busy and from becoming depressed.I am considering lessening my hours. Which she has said my benefits will be lost. Dental and vacation pay which I really only need the dental. I can totally quit which I am not ready to do yet or stay and see how much more I do. I am hopeful once my doctors figure out everything thats going on with me I will feel better and want to continue to work.For now I deal with it and try to deal with the pain put a smile on my face and take one day @ a time. I am considering a office job.
kely

Jeanne D. · 08-08-2004, 03:08 PM

Kelly:

Did you ever consider working out of your home as a hairstylist? You could make your own hours and work as needed. You could also go to other peoples homes to cut their hair. I have one friend who cuts hair for people in nursing homes. She works for herself and has many clients. She schedules her own appointments and works when she can. She is a breast cancer survivor and this fits nicely into her life and schedule.

Just a thought. Good luck.

Jeanne

**kadi** · 08-08-2004, 03:19 PM

Just to add to what Jeanne said. When my grandmother could no longer get out of bed, her hairstylist came & gave her a trim, and I can't tell you how much it lifted her spirits!

kelly McC · 08-08-2004, 04:00 PM

Yes I have considered going to my clients homes but with pain medicines driving is not a option right now. I live in a small apartment and dont have the room to do hair out of here or I would. I do some people right where I live it is a senior citizen housing and most cant get out so I know what you mean its means the world to them that I come over and do there hair for them.

Jocotter · 08-15-2004, 12:36 PM

I am a director of a large non-profit child care agency. I think my job is part of the problem in flares, because of the stress. Don't get me wrong, I love my job and my coworkers. We are family and all at our main office have worked together for at least 10 years, and some up to 20, like me. It's just that always dealing with personnel issues, parents, and looking for funding get to me.

Anyway, I sit most of the day, can go to the bathroom anytime I want and I don't get sleepy or loopy from pain pills. But it sure is hard without a heating pad.

Anyway, I think the temporary job market would be a great way to begin to get back in the swing of things.

pattig89 · 04-19-2006, 03:19 AM

I am a pre-school teacher's aide dealing with 44 kids a week...I feel that the stress
level like you is getting very hard...Between the parents, the teacher's and the
administratives it is getting very tiring.....I think what Donna said taking a temp
job or cutting back on your hours or just an office job might be the thing to do..After
almost 15 years with kids especially this age group I am thinking of going part-time
or just doing something different...I love all of your ideas they have been helpful
to me ...I am on vacation this week from school and feel so much more relaxed..
Thank god for all of you this message board truly does help...
Patti G.

sarahjean · 04-19-2006, 03:28 AM

i work as a recep/sec'y and it is only 29 hrs a week - one hour less from being considered 'full-time' so that i don't get ins. but, fortunately, my husband's ins. covers me.

i am lucky that my job is a real 'cake' job. i barely do anything. when my flare gets real bad, i take some Advil. if it is severe, i need to call off; especially if i didn't sleep the nite before.

good luck!!! i hope you can find a receptionist position that is as nice as mine!!

sarahjean

armslee · 04-19-2006, 03:40 AM

I work full time as an asst to an insurance broker. I do sit most of the day at my computer, but I think that causes alot of my abdominal and lower back pain. I feel sooooo much better on the weekends and take much less pain medication when I am not working.
During the work day, I do have the convenience of going to the restroom as needed. I cut my pain meds in half so that I am coherant and can function on my job. However it is getting harder and harder through high flare days. I recently started physical therapy and bladder instillations for which I am able to schedule early in the morning before work. But like the rest of you, I have to miss work for multiple doctor appts and am taking off 2 days in a couple weeks for a lap and cysto procedure.
I really wished that I was able to only work part time or work from home. However that is currently a financial option for my family.
So far my employer is working with me through my treatments. However there are many days that I come to work in complete agony and suffer through the day in utter misery. I don't know how long I can continue to keep up this facade. I pray that the instillations and medications begin to work for me soon.