Working full time

[vickysmommy]

I want to know, for those of you who work full time, how are you dealing with that. Does it make life easier or harder? I just got my first full time job, I start Monday and am kind of nervous, cause Ive been on SSI for years and I know they are going to cut me off. Im worried about getting too tired at work, or even, work making me sicker. Right now I go into the hospital about once a year usually due to a staph infection, and my PFTs are in the 70s. But anyway I just need your perspective on how you all handle working.

 

[Dustin82]

I dont know if this will answer question but I am 23 year old male with cf. it all depends in my opionon is it going to be a phyical job where u are moving around alot like a factory job or is it like a 9 to 5 job where u are seting at a desk? I worked at to factories and u know I could do it but it would get me down and I normally go in to the hospital once a year well when I started working full time I started going in two times a year. My probelm was I was always on the go and did not have time to eat and take care of myself and have lost alot of weight but I could not tell myself that I need to slow down and put my health first it only toke me to 2 jobs and 4 years to just quit and now I am trying to apply for SSI and just do odd smalls jobs for people and try to enjoy life.

 

[abloedel]

Hi Sarah:

Being newly diagnosed, I guess I can't address all of your concerns; however, I have been sick with mulitple "mystery" illnesses for a long time. I have always worked full time.

I do find that in the last year (I work M-F) , I am REALLY tired by Thursday, so Fridays are unusally difficult, but I compensate by trying to schedule my harder work earlier in the week.

This has gotten worse since returning to work after my hospitalization in January. I am forturnate to work for a progressive company and have an understanding boss. When I get really tired or to feeling really badly, they do allow me to work from home - which over the last year has averaged out to about once every 3 weeks.

One thing that has helped was getting my own printer in my office at work so that I didn't have to get up everytime I print something....sounds like a little thing, but it does seem to help my energy levels last longer.

I do try to sit away from sick people at work during meetings and am constantly washing my hands or using hand sanitizer - but I'm not sure how much this has helped or not.

I do enjoy being around people and feeling like I'm contributing, so from a mental perspective, I think working is a good thing...plus the insurance benefits help!

Amy

36f w/CF

 

[anonymous]

Kind of off the subject, but DUSTIN82 you should really apply for SSDI at the same time as SSI because SSDI goes off of your work history. Being that you are only 23, you will probably only need 6-10 quarters of work-maybe not even that much. When my husband applied, he had only worked for a year but being so young he only needed a very small amount of quarters working to qualify. Then they base your SSDI amount off of how much you made in the year. And the nice thing about SSDI is it doesn't matter if anyone else you live with (parents, spouse, boyfriend/girlfriend) makes money, whereas SSI is based off of income.

Julie (wife of Mark 24 w/CF)

 

[LindseyRose]

I am a server in a restaurant and I tend to work a lot of hours, although it varies from week to week. The shifts are long, about 9 hours if I am there all night, and you can bet that by the end of the night I am ready to fall over. But I don't excercise regularly, so I think the fact that I am walking around all night really helps me. I wore one of those little meters that counted how far I walked one night and I walked almost 6 miles! My last pft's were at 88% (but that number seemed a little high compared to how I was feeling) and I go on IV meds about every 6 months. My employer is extremely understanding of my condition. If I have to call in sick or if I ask to leave early, they don't ask questions. I kind of wish I had a 9-5 job, however, so that my days would have more of a so-called schedule. I could wake up at the same time everyday and get my morning treatment out of the way, go to work, come home and do another treatment. I think it would be better for me. The way it works now I miss a lot of treatments because I am at work until 1,2, sometimes 3 in the morning so by the time I get home I just pass out without doing a treatment. Then I sleep until the afternoon, do 1 treatment, and do the same thing all over again.
I guess in answer to your question, the way that I handle it is I don't take sleep and rest time for granted. I try not to have too much on my plate all at one time. When I need time off, I take it. I am lucky that I have managers that understand and recognize when I am getting sick.

 

[anonymous]

I have been working full time for almost 3 years. I work in the media industry, which is pretty full on! I often work long days, and sometimes on weekends, but I don't mind I am just enjoying life to the full.

I haven't been in hospital for almost 3 years and I think that having to work full time has made me more determined to stay well. When I was at school/university I went to hospital about twice a year.

My employer doesn't know I have CF. I look normal, and can blame my coughing on Asthma. I often think it would be much easier if I just told them, but I don't want special treatment, or worse, to be discriminated against.

I am tired towards the end of the week, but I think I am unfit generally, not just because of CF.

 

[cfgirl38]

You really should, in my opinion, tellyour boss of your CF. If something happens to you at work or if you happen to get really bad and need a leave you will have needed them to have this information. I beclieve you may be in denial to think your exausted is only because of your being unfit. It could be because of your CF and if you ignore it and continue to push yourself to exaustion your CF symptoms may get worse. As my CF dr told me. I was the same way. I pushed myself, I worked 10-12hrs day. Always blamed the way I felt on everything else untill it all caught up with me. My lungs went from 60 to 48% in approx 6 mo. Then from 48% to 38% in approx 3mo. Now I have been 40% for 6mo. So I'm starting to stabilize and hopefully increase after steady decline. Take care of yourself. Don't allow yourself to get tooo exausted. Get your rests.

 

[anonymous]

Hi Sarah,

I'm a 35 year old male with CF and still work full-time. I went to college for accounting and also have my CPA and went back for an MBA. I've been in school or working full time since I was 18. I am usually hospitalized about twice a year for PA infections. My PFTs are still in the high 70s. I've been lucky with my employers so far, they have all given me the time off needed for my hospital stays. Since a few of my jobs were salary, one employer let me take uncompensated time off and another one actually paid my normal salary even though I was in the hospital. For the last three years I've had my own consulting company. Since I'm my own boss, I have no problems with hospital stays. I've never collected SSI, but I'm sure you're right, it will either be reduced or discontinued based on your level of compensation. I personally enjoy working, I could not imagine sitting at home all day with nothing to do. If you have any more questions, feel free to e-mail me at rwconsulting@worldnet.att.net. I hope your first day of work well.

Roger

 

[HollyCatheryn]

Hey Sarah. The first thing that comes to mind for me is weighing the benefits versus the sacrifices. I know you are a mommy of a young baby. Who is taking care of her while you work? Are you paying for child care? After paying for child care and replacing the money that you would have recieved on SSI, how much do you still have left? How much of that money is going to be spent on dinners if you are too tired to cook them or on extra gas and car maintenance for getting to and from work? Are you going to have to purchase other things to make working possible? So first, weigh how much money you are actually bringing home over what you would save by staying home. Then think about your boyfriend and Vicky. How do you feel when you get home? Are you going to have enough energy to be a good mommy and partner? How consistent or fragile is your health right now? In general? Are you like me in that when you feel good you feel great, but when you feel bad, you collapse? How likely is it that you will be able to do your job long term? If you are needing to have some autonomy from your daughter and home, could you do some volunteer work or work part-time so that you would pay little or no child care, but could still have the satisfaction of earning money? Think about WHY you want to work full time. Is there no other option for income? Is your boyfriend between jobs? Is this a long or short-term thing?Being on assistance of any kind isn't fun. I'd venture to say that all of us on SSI/SSDI or other assistance programs would rather earn a living. But, sometimes assistance is the BEST option. It is difficult to remember that your family limits your choices. Their needs and what is best for them must also be weighed with your needs. I have found that working for myself in part-time jobs has been my best option. We've needed the income that it provides, but working for myself allows me to still care for my daughter so that she isn't without her mama and I'm not paying for child care. It also allows me to take a day here and there or tailor my hours to what will allow me to be healthy and good for my family. You might find out what the maximum amount is that you can earn without losing SSI and find a way to tailor work to that amount so that it is pure income.Remember that Vicky has only one mommy and one infant/childhood. There will be lots of time to work if she goes to school in a few years. This time goes by so very quickly and it would be a shame to miss it if you don't HAVE to.