Survey: How many hours do you work?

General
41

That is a huge workload for anyone, let alone a person with PsA. Obviously you do not have a lot of time on your hands, but if you can find time it'd be interesting to hear how you handle that, though I'd imagine sheer determination plays a big part. I'm full of admiration for you. Take good care and I hope those teenagers keep you laughing at least some of the time!

roni pam said:

I work 80 hours a week for two employers. 40 hours Monday through Friday at an office job which I drive two hours to and two hours home so 20 hours driving a week and I work 40 hours Friday through Monday at a residential treatment center for teenagers. That is local only a twenty minute commute, Both jobs were local for five years but the local office closed so I have been commuting for two years. It is very difficult especially with not feeling well and both jobs frown about taking off. I literally have no day off.

42

OMG IDK how you do it, roni pam!!!! Sometimes I think, though, we can forget at least some of our pain and problems if we keep busy....but you are ridiculously busy! I thought my sister worked a lot with a full and a part-time job!

One thing I do think is if you have jobs you love, it's really not hard to put in the time. I love my regular job, but it's only 20 hours a week. This morning, though, I was so frustrated, the tension actually started bringing on some PsA symptoms--just the throbbing fingers--but it definitely felt like the stress of things that were happening at work were causing them to throb! But, even though I was frustrated, I still enjoy the small challenge of my work--I know my job so well, eveything has become routine and easy. The challenge is when our student workers have such bad attitudes they make mega mistakes and can't seem to learn simple procedures, which puts a lot on me. And, I wouldn't mind the extra work, but I've been asking for my hours increased to 30 a week for the longest time and they keep teasing me with telling me that it's a possibility, but then it never happens. I only plan to work four more years (until my 66th birthday) and it would be nice to have the extra $ and some additional benefits--like cheaper health insurance, until I retire.

I swear, if I heard the expression "hard work never hurt anyone" once, I heard it a million times while I was growing up. My parents seemed to be healthy and strong for a lot of years, and they did work hard. Actually, sometimes I think that slowing down and doing more sitting around watching TV has been detrimental to my health these last few years, but it was a double-edged sword when I had PsA really bad and felt exhausted all of the time--I felt I needed to relax more--yet, that caused more stiffness--which, in turn, caused more fatigue--which, in turn, sent my health on a downward spiral--which, in turn, caused me to give up and go on Enbrel, which, in turn, made me feel so much better I hurt my back, which, in turn, gave me a permanent bad back, which in turn......ooops, I got carried away. :-D

43

Although I am a high school student, soon to be a college student, I felt I could let you in on the teenager side of work. I have a typical school day 7:30-2:30 everyday. Most have experienced it, but there's days that all that standing and sitting in 7 hours puts a hurting on you. So school = 7 hours. I currently have two jobs. A desk job that I do for 9 hours every Saturday and a stand up and move all around job that I work about every other day so about 15 hours a week. I have to mention the 2 hours a week I put into tutoring middle school children and how many times I have to get in and out of my car to drive to certain off campus classes and getting on and off a bus for our off campus college classes. To total this out, about 33 hours.

Now PsA has changed my ability to work in some ways over the past two years. At school i have to switch from standing to sitting in the middle of class. I have to watch how fast I walk so my chiropractor doesn't see that I throw my hip out again. Sitting at my desk job on Saturdays can be a little painful since I am not moving from my chair very often. I typically go home stiff. Tutoring is wonderful because I finally get the chance to move around however I feel. So all in all it can be a struggle, but somehow at 17 I manage.

44

Wow Fighter26 that's a demanding schedule...thanks for sharing. I hope your school is supportive of adjustments when you need it. What do you do that helps juggle everything....anything help in particular?

45

For school I typically bring a pillow to sit on, otherwise I just try and make it through the day. At work there isn't much I can do except deal with it. When I get home I take Ibprofen and lay down as soon as I can. mom becomes a wonderful masseuse.

MacMac said:

Wow Fighter26 that's a demanding schedule...thanks for sharing. I hope your school is supportive of adjustments when you need it. What do you do that helps juggle everything....anything help in particular?

46

Hey Paul, people are still responding on your thread but you seem to have disappeared! How are things with you?

47

Fighter26, you are one busy young lady! Tell us what the college plans are. What are you going to be studying?

48

I will be going to a four year university in Missouri. I will be majoring in biology secondary education and minoring in psychology secondary education.

49

Yaaaay, Fighter ā€¦ you go, girl!

50

I work 30 hours a week, sometimes longer. My typical workday is 6 hours, from 9 am to 3 pm. By the time 3 rolls around I am wiped out. Sometimes I work closer to a 40 hour week. When that happens I usually need a full day of relaxing on the weekend to recover. Occasionally I work a couple of weeks of much longer hours. I can push through when Iā€™m in it but usually end up calling in sick a day the week after because I canā€™t find the energy to get dressed.

51

I work 24-36 hours weekly. 12 hour night shifts as a hospital supervisor. I just returned following a medical leave and was diagnosed in March of this year following years of pain in neck back hips and now my hands. I am on remicade every 6 weeks in hopes of stopping this diseases progression as the affects on my spine and the changes to X-ray and MRI in short amount of time is ā€œsignificantā€.
That being said, besides pain which Iā€™ve learned to live with sleep is my enemyā€¦ Working in that and hoping to return to bikram yoga which is how Iā€™ve always felt my best until the last year in which I have not been able to get through a single class.

I have to work pretty much just to pay for insurance and the cost of my medications. Some days itā€™s hard to be positive, but I hope I will never have to go on disability. I just think it will leave me feeling like a failure. As far as the comments of others understanding our illness, my doctor told me people have a hard time grasping how sick we are because many of us donā€™t ā€œlook sickā€. Iā€™m glad to be on this site as I certainly feel more sane and less alone as itā€™s hard for my family and loved ones to understand that some days I wish I could curl up and sleep for 24 hours.

If you cannot work, there is no shame to be on disability. You have a real illness which has broad and serious effects both mentally and physically. Having a life is important to heal and be healthy. Being unable to work certainly does not decrease anyoneā€™s value in this world.

Thanks to all on this site for sharing. It helps to not feel alone, misunderstood, and isolated. I no longer feel like Iā€™m just complaining or nutsā€¦

52

Mcr said:

Thanks to all on this site for sharing. It helps to not feel alone, misunderstood, and isolated. I no longer feel like I'm just complaining or nuts....

This really has been a great thread, hasn't it, Mcr? When I see what people manage to do despite this wretched disease, I stand in awe. Or in my case, sit. But like you also say, there is no shame in being on disability, and being unable to work certainly does not decrease anyone's value in this world.

It's unfortunate that OP Paul hasn't been back to the thread that he started and to which everyone so kindly responded. He seemed to really want the information. I'm hoping that he will come 'round with some comments soon.

53

I hope that no one has mis-interpreted my silence as a lack of interest or appreciation for the feedback. I have been reading the comments as they come in ā€¦ and I do appreciate the replies.

Two observations from all the comments on this ā€œsurveyā€: 1) Work is apparently an ongoing point of concern and challenge for most people living with PsA, and 2) Good Conversation takes on a life of its own, and the conversation itself is greater than the input of the person who ā€œsparkedā€ it.

At this point I feel mostly like a spectator to the conversation ā€¦ and I donā€™t mind that at all. But I wouldnā€™t want my silence to communicate the wrong thing.

So one thing I will share is this ā€¦ for the last month (going back to the week right after I started this conversation) ā€¦ I have begun to limit myself to 5 days a week at work. No more six day work weeks as a regular pattern. My employer has been agreeable to the change, and (interestingly) so far my overall quality of work and total work accomplished has increased even though I am working less hours. I had no idea my complete exhaustion was hindering my productivity to that degree, but apparently it was.

So I hope the continuing conversation is as helpful to others as it has been for me. Iā€™m still reading and enjoying the comments. I trust others are as well.

54

Hi Paul, you certainly started something here, this is a great discussion.

Something you've just said leaps out at me .... about working less hours but more productively. I wouldn't mind betting that the same can apply without a chronic illness in the mix. But I also think the same principle applies to many areas of life when living with PsA, not just work. I used to over-rely on the ability to keep going, going, going. It's a revelation to me that stepping back, applying thought, prioritising etc. etc. actually work and are cost-effective in terms of energy spent v. results achieved.

Sounds like I'm commencing a management forum but I'm referring to planning the food shopping as much as anything allegedly more important.

55

I'm so sorry we're not making our lunch today, Sybil, as I could use a lesson from you in planning the food shopping (and cooking).

Paul, I too think this is a great discussion that will be helping many people. I'm glad it has enabled you to reduce your own working week. May this continue to benefit your health.

56


1. How many hours do you work weekly for an employer?

40 hours scheduled, split shifts, so my day is 10 hours long but only get paid for 8 of it. Sometimes I work overtime, but for several years was working nearly 15 hour days, if you include the daily commute, when I was based 30 miles from home and had to go get my bus. Now I'm based from home and normally able to at least start from home and only work extra if I want to (or get begged enough). This isn't always the case, but still a lot better than before!


2. How has PsA changed your overall ability to work?

I had to apply for intermittent FMLA because of time being lost for infusion, dr visits, and pain days. Parking at home means I don't call in sick, unless the bus is over there to start with (such as vacation or scheduled day off). I try very hard not to let passengers on the bus know how much I hurt, and don't want to let my coworkers know, either.

I'm planning on working as many hour as long as I can, it's just a question of how long that'll end up being.

57

Hi Paul - It looks like I'm the only one that has reached a point that I cannot work anymore. I've worked all of my life and loved it. I worked for employers, but also was self employed for many years. I worked as a medical transcriber and it's a pretty sedentary job, but its had some changes in the last few years. Most work is now online and going overseas to be completed, so it has become an extremely difficult occupation with incredible cuts in income since becoming editing instead of typing and workloads going outside of the U.S. for cheaper rates. But working online also worked with my life as I took care of my 92-year-old mother for about 15 years. So it helped to be at home and work. I started having physical symptoms about 22 years ago, just a few things. But about 3 years ago I became very sick, very fast. My PSA came on very strong throughout all of my joints and has remained strong all along. I don't have flares - it's just there always. I also have ankylosing spondylitis, enteropathic polyarthropathy, and ulcerative colitis, along with rheumatoid arthritis, which are all linked together with symptoms. In 2013 I was horribly ill and in pain. Luckily I had a supervisor that allowed me to work any time I could in a 24 hour period to complete my 8 hours of work five days a week. It allowed me to lay down and rest whenever I needed to. I worked this way for about 8 months and the harder and harder I pushed the more impossible is became. In March of 2014 I just couldn't work anymore. I was so ill and in so much pain and that's kind of what my life has been since then. It was so hard for me to accept not being able to work anymore, but my body just couldn't take anymore. I went out on FMLA and then state disability. I also applied to Social Security. I had long term disability benefits, which picked up for a year after the state disability ran out. I've gone through two refusals on Social Security and I am waiting for a hearing date sometime next summer. But I've been living on no income since June 2015. Luckily I have family that are helping me, but it's a horrible place to be. Never in my life did I ever think I would be so ill or not working. Working and being healthy was my identity. And having family helping me just makes me feel so useless and such a burden. They get upset when I say that, but that is how I feel because I can't fix this or handle this on my own. I would love to have my life back, but it isn't working out that way. So I just pray and hope things get worked out soon. It's a hard existence. I'm not a candidate for biologics, so having medicine that might make things better for me isn't an option. But the medicine I am on has helped with keeping the joints preserved and some of the inflammation down in them. It just doesn't help with the horrendous fatigue and terrible flu like symptoms that I have 24/7. I'm just grateful that I am on medication that does help with some things and grateful that I have wonderful people who love me and are trying to help me hang on. So this is my story. Sorry it's kind of a sad one. I know I'm not the only one that has had to stop working and has had a hard time. It will get better. It's a tough road to stop working because of sickness, but your body will tell you if it can't manage anymore, like mine did. Then you have to listen. Good luck Paul. I hope this answered some of your questions.

58

I work about 20 hours a week as a teacher. The combination of the PsA and my father passing made me decide to go part-time this year. I am a teacher of high school math at a private school. My PsA has gotten so bad that had I not gone part-time, I would never have made it through the year. The fatigue is overwhelming, and the pain is unbearable some days.

59

1. I work 40 hours a week, unless I'm having a bad day.

2. I'm only working because I'm taking a narcolepsy medicine, Provigil that helps with my debilitating fatigue. Before being prescribed Provigil I thought I would have to retire on disability.

60

Hi Basset Momma,

I'm so sorry to read that you had to retire on disability. I'm suffering with flu-like symptoms today - my worse PsA symptom. Do you take anything for the fatigue? I take Provigil, a narcolepsy med, and I am looking for other options. I see a neurologist for narcolepsy medicine.

basset momma said:

Hi Paul - It looks like I'm the only one that has reached a point that I cannot work anymore. I've worked all of my life and loved it. I worked for employers, but also was self employed for many years. I worked as a medical transcriber and it's a pretty sedentary job, but its had some changes in the last few years. Most work is now online and going overseas to be completed, so it has become an extremely difficult occupation with incredible cuts in income since becoming editing instead of typing and workloads going outside of the U.S. for cheaper rates. But working online also worked with my life as I took care of my 92-year-old mother for about 15 years. So it helped to be at home and work. I started having physical symptoms about 22 years ago, just a few things. But about 3 years ago I became very sick, very fast. My PSA came on very strong throughout all of my joints and has remained strong all along. I don't have flares - it's just there always. I also have ankylosing spondylitis, enteropathic polyarthropathy, and ulcerative colitis, along with rheumatoid arthritis, which are all linked together with symptoms. In 2013 I was horribly ill and in pain. Luckily I had a supervisor that allowed me to work any time I could in a 24 hour period to complete my 8 hours of work five days a week. It allowed me to lay down and rest whenever I needed to. I worked this way for about 8 months and the harder and harder I pushed the more impossible is became. In March of 2014 I just couldn't work anymore. I was so ill and in so much pain and that's kind of what my life has been since then. It was so hard for me to accept not being able to work anymore, but my body just couldn't take anymore. I went out on FMLA and then state disability. I also applied to Social Security. I had long term disability benefits, which picked up for a year after the state disability ran out. I've gone through two refusals on Social Security and I am waiting for a hearing date sometime next summer. But I've been living on no income since June 2015. Luckily I have family that are helping me, but it's a horrible place to be. Never in my life did I ever think I would be so ill or not working. Working and being healthy was my identity. And having family helping me just makes me feel so useless and such a burden. They get upset when I say that, but that is how I feel because I can't fix this or handle this on my own. I would love to have my life back, but it isn't working out that way. So I just pray and hope things get worked out soon. It's a hard existence. I'm not a candidate for biologics, so having medicine that might make things better for me isn't an option. But the medicine I am on has helped with keeping the joints preserved and some of the inflammation down in them. It just doesn't help with the horrendous fatigue and terrible flu like symptoms that I have 24/7. I'm just grateful that I am on medication that does help with some things and grateful that I have wonderful people who love me and are trying to help me hang on. So this is my story. Sorry it's kind of a sad one. I know I'm not the only one that has had to stop working and has had a hard time. It will get better. It's a tough road to stop working because of sickness, but your body will tell you if it can't manage anymore, like mine did. Then you have to listen. Good luck Paul. I hope this answered some of your questions.