How do you work through bad days?

[KymieG]

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]

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]

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]

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]

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]

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]

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]

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.]

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]

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]

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]

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]

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]

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]

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.

[holles]

i teach junior high, and it is so hard to work on bad days. fortunately, the teacher in the room next to mine has health issues too, so we cover for each other when one of us needs to take a potty break. i can just open her door and ask her to watch the kiddos from the doorway while i race down the hall. the stress is bad though. and this time of year is always awful.

as for nursing, i've always wanted to get my nursing degree. but my mom's ob/gyn once told her that teachers and nurses have stressed-out bladders because we don't always get to go to the bathroom when our bodies need it (mom was a teacher too). but it's still something to look into if you can be a nurse in a small office or something.

i agree with the temp agency idea. i temp during the summers, and it's not too bad.

[enk11]

wow, teaching must be rough. I work in a law firm. it is interesting work and I enjoy it. my bosses are very understanding. we are like a family here. I also go to school at night. my day is pretty busy, and sometimes I am in pain. I will take urocit k and pyridium and it helps.

[Sarojini]

Well, the answer for me is that I suffer through days when there's nothing I can do about my work load, OR, when I have less work and can rearrange things more easily, I go in late, go home early, or make up time on the weekend -- I'm a scientist, so I can schedule experiments so that I can do this. The only issue is that sometimes my boss gets antsy about data (most bosses in science LOVE micromanaging) and will get annoyed by doctor's appointments, etc... but most of the time he is a good guy, especially now that he has been educated about IC by yours truly.

The stress is pretty bad though -- when we've got deadlines, you can bet I'm flaring!!

I guess the best jobs for ICers are flexible ones, maybe where you can choose your own hours, or telecommute part of the time. Nursing in a small office, like Holles said, may be a good one; they might be more flexible with schedules....

[jmcraig]

I am a pharmacist for a chain drug store and it is extremely hard to work my shift. We work 12 hour shifts and do not have a bathroom in the pharmacy. It is so exhausting!! Then the pain can become unbearable because people are upset cause they have to wait longer for their prescriptions and doctors are onhold (and they do not like to hold for the pharmacist). So most days I just muddle throughtout the day with tons of prayers to make it through the day.
Janet

[mary124]

I work full time, in my division there are about 15 people, but my section there are only my boss and myself. My job is a piece of cake as well. I have to work 8-5, but I really don't have any stress, if my bladder starts to hurt, I'll take advil, use my heating pad. If my boss notices that I'm not feeling well, she'll tell me to take it easy and make it up when I can, (the work comes in from all over the STate, so there are days when I get alot and then there are days when I don't get as much.)

[GOFORTH]

I'm Newly Ic Member (i'm Beginning To Feel We're A Club) And I'm A District Manger With A Pizza Company. I Have 6 Parlors To Oversea And I'm In The Car Most Of The Day And The Other Part I'm Standindg . It's Very Hard On Me And I Know Every Bathroom Between Tracy Ca. And Merced Ca. It's Getting Harder And Harder To Make It Through A Day. Stress Of Not Doing My Job At 100% Is A Big Load On Me Alone. I Wanted To Make It Through To 66 For A Retirement, But It Don't Look So Good Anymore.
Goforth

[GOFORTH]

jennette, thanks for answering back, i find myself hiding in the house more and more anymore. just don't want to deal with people. this is hard to explain and sometimes when i'm talking , it just sounds dumb or weird even to me. some of the meds cause side effects that make it hard to stay away from a bathroom , and i drive long distants.
don't know !!!!!jackie

[akrose]

Hi - I am a nurse and had to give up the rigorous environment of the hospital to do home care, so i sort of know what you feel like working in the fast paced environment of the pharmacy.
Aileen

[GOFORTH]

amen to the pain meds. they send me for a loop. i in the middle of changing uro. , which is starting all over again. and like most of that chronic pain thing going too, because there is several going on with me.
i've really thought about quitting work , but can't afford that right now, stress , stress!! and i'm sure not doing my job like i should, and afraid that will all catch up with me. stress again!!! it's a curse i tell ya !!!!
jackie

[sarahjmiller]

does anyone else besides me think that IC is an auto-immune disease????? :confused:

because, if so, unfortunately there is no cure for auto-immune diseases - - - only treatments.

that's just my opinion, however, and i am only trying to be 'logical' due to my father having been a Professor of all the science courses in college. Sorry to offend anyone, but i think all we have are 'treatments'.

what do the rest of you think??? i'd be interested in knowing other opinions, as well.

[dminton]

I do housecleaning and make my own hours, and I have regular customers that I see every two weeks. If I am feeling too awful to work, and this could be due to my bladder or a migraine, it's not the end of the world for me to reschedule (usually), which is a big reason why I keep doing it!

Flexibility is the key with this disease. If I could do something that is this flexible but less physically taxing, believe me, I would; but I don't know what that would be. Each job is 3 hours, so it's not like I have to survive an 8 hour day in an office or something. An added bonus is that I am on friendly terms with all my customers; they were extremely supportive through my recent surgery, and brought food, flowers, and books during recovery.

I found all nursing jobs to be too stressful for me, even office jobs. There are no "laid back" offices that I know of; that term is not in the vocabulary of the medical world, at least not the world I have seen. It's extremely busy. But that's just me; maybe a more Type A person wouldn't feel that way!

[topcop229]

I posted this in another thread as well, so forgive me if it's a repeat for some of you. Something to consider for work at home is something like Mary Kay, Party lights, that sort of thing. You can set your own schedule and do quite a bit of work from home, making phone calls, setting up parties, etc. There is also a newer cosmetic/ skin care company that I am getting ready to start with, they have great commission plans and the products look fantastic. Their incentive program includes a mercedes, and there are three people in an area near mine that have them, so that shows there is definite potential! So, if you are a seller, this could be the answer for you. I am hoping it will be for me, as I just don't think I can continue this Monday through Friday 8-5 much longer.
If you want to know more about this company, feel free to pm me or email me at topcop229@triad.rr.com. Good luck to all!

Claudia

[kimberlyJB]

I have struggled with this very thing for so long. At my last job, things went sour after I applied for "intermittent" FMLA.

For those of you who work for a company and have benefits (and have been there for more than a year) you are eligible to apply for FMLA leave. This leave does NOT have to be taken in consecutive days. This is the little word that saved me there "intermittent". It's a clause in the FMLA law. You have to go through a process of application, which requires a statement/questionnaire from your doctor. After that you are awarded a certain number of days/month - and you should not be penalized.

Unfortunately for me, I found and applied for this late inthe game and my boss was already too frustrated with me. Our whole relationship was too tenuous for me to continue there and I needed a job that was less stressful - project management is just too tough when you're dealing with this condition.

NOW, however, I have found the most ideal situation - except for the carpal tunnel that flares - even it it's not my personal dream job - for my bladder. My boss is sweetheart. I can do all of my work by computer and now have my system set up so that I can log in from home on bad days. I wish that I could work only enough hours to get benefits and no more - because there are so many bad days that even working from home can be hard. But sometimes, we have to take what we can get. And I have opted to stay hourly so that if I work less than full time, it's fair to the organization and I am under no obligation to work more than I can.

This is a positive in a long saga of pain and confusion. The only problem - I don't think I can EVER EVER leave ! I won't find this just anywhere. And even with all these perks, sometimes I think that working part time is the only option. It's hard to bond with coworkers when you are constantly coming in late or working from home or just fighting your own personal battle that never ends.

Nonetheless, I should be greatful. I hope that this helps someone. I should tell you what I do! I work for a social service agency that provides information and referral for health and human services (no NOT Medicaid or benefits) just social services for basic needs. I ensure that the information in our database is up to date and accurate and perform some basic outreach / administrative functions. This is a daunting task in a large metropolitan area so my job is never done. The only pressure I have is that our department is growing and my boss wants to - and I want to - do more outreach. But as we know this can be a challenge - the idea of driving/presenting/being off site...scary.

We'll see how things go - right now my biggest complaint is that we moved to a building where the bathroom is communal and is a bit of a walk to get to - well so it seems to me!:rolleyes:

[armslee]

Kimberly-
I am glad that you have found a job that is working out for you, that is really wonderful news!
Regarding FMLA, the law states that the company that employs you must have 50 or more employees. This is a real bummer for must of us that work for small businesses. In fact the ADA only covers 15 or more employees. Anything that is 14 has pretty much no legislation. I recently wrote to the Equal Opportunity Trade Commission and they said the only laws governing small business are local or state laws.

[Olivia]

I work full time as a paralegal while raising my two boys (10 and 16) and taking classes at the local community college. I have plans to finish my degree and go on to law school, but there are days when I just dont know if I can drag myself out of bed. I cant afford to quit my job as I am the sole provider, but there are times when I think that if I could just slow down I would feel better. I bring ice and heat to work and alternate to help some of the "cramping". I feel like I have more bad days than good lately. :confused:

I am currently taking wellbutrin, elmiron, pyridium, zyrtec, and ditropan among all the asthma meds.

[jamies]

I can really relate to the teacher here. I am a preschool teacher and it is very stressful for me when I have to use the bathroom. I have an assistant in my classroom when I have over 12 children but I still am not allowed to leave her alone to go pee, I am supposed to find someone to fill in for me. The problem is there is not always someone there. And the days that I am alone in the classroom, I feel like I just stress about the next time I will have to go. Will there be someone there, how long will I have to wait. I have been at this place for over a year and everyone is starting to understand more and more about my situation. But just this past week we got all new managment and they just dont seem to understand as well. I gave the new assistant director a booklet that I got from the IC Network so that she could read. But still every time I ask her to come in for me she is like can you give me a min or hold on. It is very irritating I am sure you all know why. Cause its like I DONT HAVE A MIN LADY I HAVE GOT TO GO NOW. I am getting to the point its like yeah I will give you a min if you let me go home cause now I will be in pain for the rest of the day cause I have to hold it for your min to do well im sure nothing.

I am trying to find something new cause working in a classroom is very very stressful and just the environment is awful. I love children so it is so hard for me to leave any that I become close with. I did cut my hours down to four days a week and have been talking to my boyfriend (we live together) about doing another day. I feel stress has a major factor in my flares. Its just hard cause medical bills living you know it all. But I know that my health comes first and what I do can be done years from now and there will always be children that need a teacher.

[E.C.]

I understand completely about the teaching. I am a 5th grade teacher and am currently on summer vacation. My health has improved noticeably. Not standing all day and chasing after kids makes a difference!

I am struggling with similar issues - I am thinking I need to leave teaching, but am not sure where to go. All of my professional experience is working with kids, and I don't think I have it in me to continue doing so. I've been looking at jobs where I can do more sitting and have more access to the bathroom. I am really concerned that if I leave, I MUST have insurance! :bonk:

[jamies]

I have poor insurance were I work. I got my insurance plan and in two months exceded my annual max's with scrips and office visits. I was only on Elmiron for two months and now I cant afford it. I dont know if it was helping me or hurting me though at this point. My stomach problems I think got worse after I started taking it. I am supposed to go see a gastro tomarrow but there is no way that I can afford it. And even if I did make payments for the visit and the procerdures that they are going to want to do, there is no way that I can pay for scrips.

Yes it is very stressful being on your feet all day long being pulled this way and that way. And never once during the day thinking about your feelings and what you feel like. I love children and that is why I started but it is scary to think about doing something else. Even just getting out there to look cause everyone looks at you like, why do you want to do this? You work with children. And then I think being away from them I will miss it so much. I have done other jobs in the past but I feel like I always come back to working with children cause that is were I belong.

[tiketahema]

I don't know how most of you are surviving in the work field :woohoo: ....I have not worked in the past 8 months or so and don't know if I will be able to return at all ..most days between all of the symptoms for the FMS, IC, SVT, IBS I can barely make it through the day at all...Most days I am in tears and agony..I loved my career and was in the HR field and worked very had on my career for the last 20 years or so and raised three girls on my own...Currently remarried. Now I am humbled to just being able to get a shower ...No frillies like making myself up, hopfully I can maybe do a load of laundry..Heating up microwave food..I use to cook alot for my family and friends. Whining about all of my aches and pains..Doctor appointments and trying to find what will make me better..I am now going to hae to start on meds to help? me feel better but are they going to make it worse by making me loopy through the day? .Needless to say our bills are pilling up and i'm not sure how we will make it..I had been the main bread winner in the past but my husband is a very dedicated worker and does the best that he can...

So i admire any of you that can still manage through the day at work.

[jamies]

I am sooooooooooooo drained out from working right now. It is not making it easier that my job is all changing, new managment so the whole place is changing. So I am not happy about everything there and I feel like I am back at square one dealing with people that dont understand how I feel throughout the day. The last meeting we had they brought up about keeping bathroom breaks to when it is your lunch. I have talked about my IC with the bosses but whenever I call someone in the room so that I can pee I still get hurry up or I will be there in a min. First you cant tell me to hurry cause then it just doesnt want to come. I have PFD so if I am nervous at all everything just locks up down there and second dont tell me to hold on I have to go NOW. I never get out on time and when you are dealing with IC and working full time and get hardley no sleep at night you are watching the clock and the more it gets to 530 you are ready to go. And then I see 540 then 545 then 550 and I am still not out. I am starting to freak out at this point. So my days are getting more stressful. I am looking elsewhere for a job but they are very limited here right now. I feel as though I could fall over and sleep for 10 months. I am going on vacation next week and I hope this will help me get some good energy back and be ready to get back to getting in work mode.

If there is any one thought that has something that explains IC and other things related to be able to hand to my boss to read I would love something something that says look you cant tell me to wait you cant give me a hard time about how many times I go in a day or hour. I say things but at the same time am reserved yet still with these new people. So anything will help.

Thanks