How many hours do you work weekly for an employer?
How has PsA changed your overall ability to work?
I have been able to keep up with working about 55-60 hours a week for my various employers over the years. I’ve had PsA for about 25 years. Now in my mid 40’s I have suddenly found that my ability to work is severely limited, both in physical strength/endurance and mental capacity/clarity.
Recently in discussing the issue with someone, they replied, "I’m guessing that most people with your condition don’t even work a full work week, let alone something over 40 hours."
So now my curiosity is piqued. Would any of you be willing to reply to the two questions above? Short or long answers … all would be appreciated.
I just came online today to ask a similar question. I was also diagnosed as a child, and have been working full time or more (also a Mom of 2) all along. However, the past couple of years I have been getting worse and worse. I have missed work the past 2 years, probably a total of 2 weeks a year, hospitalized for pain and spinal inflammation extreme once etc. I take lots of meds, try everything I can to help. I was just fired for missing too much work. Now, looking for a new job and facing the question - WHO WOULD HIRE ME? I cannot stand for more than 10 minutes without SI pain, cannot lift anything heavy, and now my neck and spine are at a point that I cannot do the desk work the way I could before. What job am I suited for?
For years now I have worked - come home and rested so that I can work again the next day. A few times a year, I get a flare that will take me out of business for a couple of weeks at a time. Quality of life has sucked for a couple of years. Work and rest.
When is it ok to say I can't do this anymore? I would rather go for a walk along the boardwalk with my daughter than sit in pain at a desk - and for me it is one or the other. Cannot do both. I have such a negative feeling about applying for disability - I don't know why I feel that my ability to work is a line I don't want to cross. Has anyone else gone on disability - do you mind sharing the circumstances and conditions to me? How do we know when to give up the premise of a normal life and just start taking care of ourselves?
1. 5 - 6 hours. But I don't earn from it, it's a voluntary job though quite a tough one albeit in a short burst of time.
2. I used to teach. I don't have the stamina to do that kind of work anymore. I taught full-time till I was 56, with what I now realise was fairly full-on PsA for at least the last 3 or 4 years and it was a killer.
I spend the bulk of my time at home painting & I guess I put in about 30 - 35 hours in a typical week. I also rent out a little house and sometimes have to work on it. So in actual fact I am able to work quite hard in my own way but I don't have to put on any kind of a public face most of the time. Brain fog and a lousy attitude don't interfere with painting on iota. Plus if I want to go for a walk or have a cup of tea I can. It's not that I'm incapable of dancing to anyone else's tune, but I find it easier with this unpredictable disease not too. And I am able to avoid stress and look after myself better than ever.
I am shocked by what PsA has done to my stamina though, at how unbelievably unreliable my staying power is. I've made my own life & I am so lucky to be able to do that. If circumstances changed & I had to go out to work I would, but I'm trying to make sure that doesn't happen. I'm also lucky in that I'm devoid of ambition in some ways .... the word 'promotion' brings me out in hives.
Officially, I’m a stay at home mom, though I do work. I do 5 hours a week (mornings) babysitting. I walk dogs and do home pet visits anywhere from 4-10 hours a week. And I teach online classes on my own schedule, probably about 10-15 hours a week when I have a class. So it adds up, but. . . I only walk dogs two days a week most weeks on Tuesday and Thirsday so that I get days off in between.
I have a lot of trouble with fatigue and need to have built in rest time. I guess my work time on a really busy week adds up to thirty hours, but it isn’t all of the time that I have weeks like that. This week is about to be one of those weeks. Ugh.
Nic.Pat … the pain you are describing sounds familiar, and dealing with that level of unrelenting pain is its own kind of exhaustion. I do feel for you. My current issue is a bit different. I have been on Remicade for about 8 years and so my current symptoms seem to be side-effects of the infusion therapy. Not worse than your situation. Just different. I wouldn’t have any good technical advice about disability, but i would say that no matter what steps you take, don’t give up in the inside. Despair is worse than physical pain. I say that, recognizing that I am on the edge of despair right now. I see the possibility of needing to change (or severly alter) my job because PsA is taking its toll, and it feels like failure.
Stoney, thanks for the response!
Having a schedule with optional times for rest (like you mentioned) sounds like a wise strategy. As I look to the future, I think I will need to intentionally build that kind of thing into my regular schedule. Somehow.
I had a physical job but thankfully was self employed so could factor in additional rest time during the day which was essential as my working day was 7:00am - 10:30pm seven days a week. That kept me going for a couple of years after diagnosis, the third year (2014) I worked at a much reduced capacity and finally accepted earlier this year that I couldn't carry on at all. But it was the physical nature of the job that stopped me although the brain fog made things like doing the financial accounts or scheduling really hard sometimes ... literally I have sat looking at spreadsheets completely unable to 'think straight' to the point that I've even had moments of wondering if I had some form of dementia. Stress makes this worse for me, even now.
At the moment I am concentrating on managing my health so that I have some kind of life - everything is either or for me, never both. I do spend quite a few hours each week on my volunteer work here on PsA and for other Ben's Friends communities.
If I had to go back to work it would have to be a part time sedentary job with minimal stress as I can't (nor want to!) cope with stress and pressure like I used to. After having my own business I'd not be keen on working for anyone else but never say never ... if an opportunity arose that really interested me I'd probably be tempted to give it a go but doubt I could work every day, it would maybe need to be alternate days or just a few hours once a week or something like that.
I'm currently on Humira & have just re-started Mtx. I think I used brain fog as a cover-all for various things such as fatigue-related slow thinking. My voluntary job is in an advice centre and I'm sharp up until I get very suddenly dog tired round about 5 pm then I struggle with the admin side in particular. The feedback I get is that I'm very good at what I do but shouldn't push it, they have noted the change that comes over me. That's the nice thing about being a volunteer - managers can keep it real rather than browbeat staff. Generally speaking though, brain fog is not an apt term for me since I started treatment, although I think it can be hard to accurately gauge the effects of PsA on our own cognition.
I think, reading between my own lines, I sounded angry in my reply. Possibly because so many people on this site, even more on RA sites, seem to be teachers and nurses. Of course that could simply be because these sectors employ so many people. However they are roles in which people typically put their heart and soul into doing the best for students / patients yet come up against so many obstacles including sheer over-work and initiatives etc. which get in the way of the actual job. That is very stressful and possibly bad for the health in quite a direct way. So, rather unhelpfully perhaps, I get distinctly antsy when I hear good people saying they feel like failures because their job is getting too much. Anyone who has fought their socks off to stay working while living with PsA is a huge success story in my book. And deciding to quit when you have to is also a kind of success - success in terms of having the guts and intelligence to make the right decision at the right time & move forward in a different way.
Paul said:
Sybil, thanks for the reply. You mentioned brain fog. Do you mind telling me what your current treatment is for PsA? Thanks!
1. How many hours do you work weekly for an employer?
Around 10 hours a week.
2. How has PsA changed your overall ability to work?
Not too much. I am a Verger at my church and while there are some things I can't do (generally heavy lifting), most of the work I do is not affected. Church do know and have been very supportive, as has my fellow Verger.
I work heavy industrial as a millwright. I do both mechanical and electrical work usually unable to predict my days tasks makes dealing with PSA very hard. I can’t is not in my or my bosses vocabulary so that adds stress and anxiety every morning. I work 40 hrs a week and am not allowed to work part time (I tried asking). Overtime is optional except random days that require unlimited work for specific emergencies ( if we loose power etc we are not allowed to leave until its on). We are also required a minimum 10 hr or day once a year. Less tgan two months ago I had to do a 17 hr day luckily it was a Thurs and only had to come in for Friday and recover on the weekend (unable to barely get out of bed for the two days). I have missed several days of work and am papered for FMLA leave but paperwork does not help the situation much because they have a strict 6 day a year policy after that your fired. I struggle daily with just washing my hair in the morning let alone the rest but I can do alot more after about 3 hrs after wakeup. I attribute the fact I can as much as I can even I can to this having been my normal for last 19 yrs. I also support my entire family of 5 and what would happen if I had no insurance? That’s my biggest motivator!!! I could not tell you how many times I have ran to the bathroom for a good cry from pain or frustration though my car on the way to work has also seen countless tears. I feel luck I have managed this far and am on my second bio waiting for something to finally help not just mask this disease. I am only 41 and have been toying with finding a new path but I love what I do, the money is awesome, and its all I know. I get how scared you feel about loosing options, oh how I get that!! If you can find a better balance do it and don’t look back your body will thank you but that is easier said than done depending on your situation. Good luck!
I'm lucky I have a desk job 20 hours a week that I love--my coworkers are great--I work at a public university but in the parking/safety office and we have our own building set apart from all the other administrative offices and classroom buildings. I love being "alone" in our own little world on campus. I have a little side job of cleaning a small public library twice a week, which I abhor(sp), but it's a little extra cash in my pocket--if my "real" job would increase my hours to 30/week (which has been hinted at for years now) I'd quit the cleaning job immediately. It's really disgusting cleaning filthy toilets and urinals that don't get flushed after use and I come in on the weekend to walk into a restroom that smells so gross I can't even clean it! I finally left a note for the librarian to please flush the toilets at the end of each day....
We also watch grandkids a lot, but that is our fun job usually.
Oh, and I basically do all the housework here cuz my husband just won't--that's a sore spot between us, but it seems like it'll never change. I'm getting more and more relaxed in my old age (62) and just not worrying about the mess we have here. I clean when I feel like it!
I guess I'm lucky in a lot of ways--that I love my main job, love the grandkids, etc., these things keep me happy and the annoying things--too many and deep to mention here--stay suppressed enough not to get me down.
I'm so happy Enbrel is working for me-wish it did for everybody! Crossing my fingers in two days I'll find out if I can continue to stay on it!!!!
… Some with longer, more “regular” workloads, and others with fewer hours. The repeated theme I am seeing is the random need for rest that can “sneak up” on you. For myself, I can feel strong and ready for the day, and moving along fine … and then suddenly I am dog-tired and almost falling asleep at my desk. And then randomly I feel sleepy when I get home after work, go to bed without even eating dinner, and then sleep 12 hours straight. I think, “What was that all about?” But apparently my body was telling me I needed some extra rest.
Appreciate the responses!
Still eager to hear more!
Sybil, I asked about brain fog because I am trying to determine how much my own “brain fog” is caused by my medicine, or overwork, or whatever else it might be.
“Failure” talk is just my pride. I don’t want to be impaired. I want to be strong and capable and competent at the same level as everyone else, and not limited by my disease.
This may seem insensitive (and that’s certainly not my intent), but if I were an amputee, my disability would be evident and so I think the expectations of others (and perhaps my expectations if myself) would be more realistic. But because arthritis is hidden beneath the surface and I “look” like I am completely healthy on the outside, it is hard for people to see the reality of my disability. Perhaps that make it harder for me to properly evaluate what is a reasonable expectation when it comes to work and the number of hours I am able to handle.
Paul, you hit the nail right on the head--I do agree that our disease, if we're not noticeably crippled by it, is "invisible" and people--and maybe even ourselves--have a hard time seeing it. Even when I'm limping because my feet hurt so bad, I feel like nobody even notices or cares. I know my husband doesn't. If I say something to him about my feet hurting, he acts surprised, like it's something new and he hadn't even noticed how weird I walk-and they've been hurting since March!
But, I'm like you and a lot of other people here--I don't want PsA to defeat me, and I will do whatever it takes to keep going. I can't imagine being idle, and I think even if I was wheelchair bound I'd need to keep busy.
You and some of the other members put in so many work hours Idk how you do it!
It can be so difficult to identify causes. So much depends on the individual history. For me the fatigue, brain fog, general feeling of being on my own dismal little planet were extreme before the meds. And for the last 3+ years on treatment all my symptoms are just pale shadows of how things were before. So it is relatively easy for me to identify the disease as the cause. For others it's more complex and of course the meds can cause fogginess and the effects of over-work must be in there too.
I also completely understand pride, the sense of failure and so on. Partly my defiance is real but there's an element of wishful thinking because my pride has taken a bashing. Again, context is all really.
I really like what you say about the random need for rest, that is so true.
Paul said:
Sybil, I asked about brain fog because I am trying to determine how much my own "brain fog" is caused by my medicine, or overwork, or whatever else it might be. "Failure" talk is just my pride. I don't want to be impaired. I want to be strong and capable and competent at the same level as everyone else, and not limited by my disease. This may seem insensitive (and that's certainly not my intent), but if I were an amputee, my disability would be evident and so I think the expectations of others (and perhaps my expectations if myself) would be more realistic. But because arthritis is hidden beneath the surface and I "look" like I am completely healthy on the outside, it is hard for people to see the reality of my disability. Perhaps that make it harder for me to properly evaluate what is a reasonable expectation when it comes to work and the number of hours I am able to handle.
Hi, this is a timely survey. Just this week I have decided to reduce my workload for 3 months. I work 21 hrs per week, study part time and have three children (20, 17,14). My condition is not severe but does affect multiple joints. The tipping point for me has been managing the side effects of arava combined with a flare up over the last 4 months. I need to stay on arava if I can till the end of the year but brain fog, meds hang over, dizziness and nausea tend to add to the fatigue and the stress.
From next week I will be working 16 hours. Very much seeing this as temporary. I have a supportive boss, team and my university is also supportive. I am very lucky compared to other members experiences.
For me I suspect that it is a combo of factors that have lead to the decision.....earlier this year I reacted to sulfasalazine, now arava is misbehaving and meanwhile life keeps happening....
Brain fog.....I see this as a big bowl of soup with the ingredients including but not limited to...meds, a necessary shift of focus and attention toward managing the physical impact of PsA, fatigue , and perhaps the condition itself....but I have to say my experience of Arava brain fog is very distinct. Someone mentioned to me recently that brain fog is also experienced by some people who have celiac disease....interesting...i wonder how similar the description might be?
Anyway I have really appreciated all the comments in this thread. Thanks.
I'm a criminal defense lawyer doing criminal appeals. I work 40-45 hours a week. My employer (not particularly graciously) allowed me to use a comfortable chair and no desk so I can bang on the computer. In Kentucky, trials are not transcribed; they're recorded on videodisks. I'm my own transcriptionist. If I'm not watching court tv (a trial), I'm writing a brief or a reply brief or a motion or reading cases, etc.
PsA has hit both of my shoulders; I also have cervical spine issues (nothing between C5-C6 and C6-C7) and a pinched nerve. I can tell when I've been banging on the computer too long.
I also visit clients and drive an hour or more to do that (I've received NO accommodation for that), so I try to schedule those on Friday or Saturday so I can rest the next day because my body demands that I do it. The prisons and county jails have been very accommodating of me being in a wheelchair. The Kentucky Supreme Court allowed me to sit while presenting an oral argument; I haven't had one since 2013 (they're not granting as many for some reason any more).
My employer was none too happy with me when I continued to suffer gi side effects the entire year I was on MTX. My boss thinks I could "be off all that medicine" if I would just eat paleo. WRONG. I've seen the progression on x-rays, even though I inject Humira every 10 days.
So unfair for you sixcatlawyer....no justice in justice system hey :-( sounds like you fight on through the discrimination...how we would all love if the paleo diet did fix everything oh if the solution was that simple... sixcatlawyer said:
I'm a criminal defense lawyer doing criminal appeals. I work 40-45 hours a week. My employer (not particularly graciously) allowed me to use a comfortable chair and no desk so I can bang on the computer. In Kentucky, trials are not transcribed; they're recorded on videodisks. I'm my own transcriptionist. If I'm not watching court tv (a trial), I'm writing a brief or a reply brief or a motion or reading cases, etc.
PsA has hit both of my shoulders; I also have cervical spine issues (nothing between C5-C6 and C6-C7) and a pinched nerve. I can tell when I've been banging on the computer too long.
I also visit clients and drive an hour or more to do that (I've received NO accommodation for that), so I try to schedule those on Friday or Saturday so I can rest the next day because my body demands that I do it. The prisons and county jails have been very accommodating of me being in a wheelchair. The Kentucky Supreme Court allowed me to sit while presenting an oral argument; I haven't had one since 2013 (they're not granting as many for some reason any more).
My employer was none too happy with me when I continued to suffer gi side effects the entire year I was on MTX. My boss thinks I could "be off all that medicine" if I would just eat paleo. WRONG. I've seen the progression on x-rays, even though I inject Humira every 10 days.
