What about work?

[tamac]

I’m still working. I am an analyst for the most part, but occasionally I have to travel and that is hard on me. I work 40 hours a week… I find driving to and from work, which is about an hour each way, more taxing than anything. I recently did have a boss that made the HR people let me work from home on bad days. I get more work done at home than I do the office.

My PSA is pretty bad. My feet. legs, and back hurt constantly. I have to take 5 mg oxycodone most days when I get to work at 6:30 so I can get started.

I have recently been in terrible pain, my feet and legs are really a problem. I was thinking yesterday if I am doing more harm pushing through the daily pain than good. I could take disability if I needed, but I am afraid sitting around the house would make me worse.

I have several new bosses now, if they increase my travel much I will probably go for disability, traveling is just so hard on me. When I travel it is usually for a week at a time, local in state, but I have to drive.

If I take disability I can make no income and keep the disability, so that limits being able to work any.

My doctor and I are going to have to have a long talk in a few weeks, I am just not doing as well as I feel I could be. I am on my second biologic, Enbrel, then Cosentyx, and neither have made my life better. If I could find a med that would give me just 50% relief things would be great.

Last night I was obsessing about the fact that no one I know seems to give a flying F$#K that I am in terrible pain 24/7. Not even the wife. I essentially have no support system, just me. It would be nice if the wife would just ask occasionally how I feel. She has to have a knee replaced soon, I hope she is not expecting much sympathy from me, but she will get it…

Sorry, just having one of those days.

[Woodworm]

Hey, currently in my situation I am not working. On good days and can get around but productivity starting taking a hit a year ago. I need to get back or least as close to normal as possible for work to happen. Unfortunately I do not believe this is in the cards for me at this time. To put it another way just awaking and getting a shower is an accomplishment. On good days after taking medication I might have a couple of hours but none of the stuff I do is intensive. The other part of the disease where not many talk about is the mental aspects of psa. Sometimes my brain will not work. Mental fog and bad focus is a symptom that is hard to get past. I find it best if you do not fight it and learn to work with it and adjust personal expectations. For others like a significant other this can be hard to understand and it does take its toll on relationships. Finances on top of the disease and those around you makes for hard times.

[Laura108]

@darinfan Your reaction to not working reminded me of mine when I quit work. I am so grateful to be able to be retired and not working. It is much easier than going into work every day. But, it was a struggle to accept a new position in society. While I can’t say that I felt guilty, for the first two years I felt like I didn’t have a place in the world and that I was useless.

While I don’t want to return to work, I’ve continued to look for ways to be of service. I used to love to facilitate groups and I’ve done some of that. Now, I can’t do that. Too difficult, given other illnesses I have: Spasmodic Dysphonia that affects the voice and hearing loss from a nasty virus that destroyed cilia in both inner ears. (Botox injections and hearings aid, respectively, help with these problems.)

Most recently I’ve been brushing up my piano playing. In about two years I hope to pass an audition in order to play the grand piano in the lobby of the hospital for an hour a week. I love making music and soothing others (and myself), though I don’t know in the long term that this will work for me, as my hands hurt from playing. For now it feels like a worthwhile goal.

[Sybil]

@Laura108

I hope to pass an audition in order to play the grand piano in the lobby of the hospital for an hour a week.

I like the sound of that Laura, I hope it happens for you.

I’d like to see wandering minstrels in hospitals, they could adjust the volume depending on where they are in the building. And dancers too, snaking around the corridors. I guess there are times when that could be massively inappropriate … maybe just outpatients(?). There again, maybe my imaginings just show how pathologically bored I get at hospital appointments. You tinkling the ivories would cheer me up!

[tntlamb]

They (wandering minstrels). are common here. There is another group called the Chalice of Repose that are all harp players. They only play in private and there sole purpose is to relax the dying to make passing easier.

Funny story sort of. The night I had my stroke and finally was cleared to be moved to the ICU, there was a slight mix-up in the transport elevators. The door opened and who was there but “Digger Burgess” and his gurney Digger is the contract first call man for every mortuary in town… anyway after a good laugh the finally got me to my bed wired up etc the chaplain showed up to make sure I was at peace with my DNR orders. ( I was and still am) he no sooner left than the second mix up of the night. Who should show up but the Chalice of Repose team and their damn harps. They didn’t stay long.

But I love the piano music in the atrium. We have one of gal ( she is old - 88) who when she thinks she can get away with it plays a mean boogie woogie.

Good luck to you Laura hope it happens. It’s an incredible ministry.

[darinfan]

This discussion/issue hit again this week. I had a lengthy rehearsal on Sunday (three to four hours), where I was singing, but mostly sitting down (albeit not exactly in armchairs). I have yet to properly leave the house since. I’ve not been in “agony” as such, but bad given how I have generally been over the last fifteen months or so. 48 hours on, I am starting to feel human again.

Once again it’s a reminder of, no matter how good you feel beforehand, you’re never aware of what you’re going to feel like AFTER. If I was to class the rehearsal as equal to half a day at work (as in an office etc), which it probably was, the idea of doing that four or five times a week to even work half time is almost impossible. And it’s not just a one-off - it happened when I did similar things last year, too, and the my short break away had me considerably worse for three weeks after.

So, I guess in my own mind, I am coming to the realisation that doing a job that can’t be done from home in the main is just not going to happen unless a miracle happens. Benapali has been a miracle - on a day to day basis I can be relatively pain free and able to do what I need to do to exist, and I am SO grateful for that. If someone had offered me this state of affairs eighteeen months ago, I would have bit their hand off. BUT, coming to the realisation that your regular, traditional working life of going out to work regularly may be over by the time I’m 45 is really quite a blow.

And, of course, there is also the issue of persuading the powers that be of my situation. PIP assessment in May is looming!

[Poo_therapy]

I don’t envy you the PIP assessment or reassessment. From what I hear it’s a system in total chaos. However as regards hacking a working life, there is such a thing as a ‘graded return to work’ where you build up stamina to it over time often in the hands of an occupational therapist. Say for example instead of PsA you had been badly injured in an accident was off work for let’s say a year. There’s no way at all, once all your bones had healed, you’d be able to jump back into full time working after that year. If you were employed, you’d probably start back on say two or three mornings a week and build up your stamina over 2 or 3 months. Same would apply if you were off sick for that length of time for a something like a total mental collapse. The reason why you weren’t at work isn’t that important it’s the reconditioning of all of you back into the work place that needs to be done. It’s never instant.

In my previous life I acted for insurers who provided income protection cover. So that benefit kicks in after you’ve used up all your employer’s contractual sick leave entitlement. And invariably the human being doesn’t stay permanently ill (our type of illness aside for now) but often the person would have been off work a year and the insurer would provide the help to do a graded return to work, often with excellent results. I’ll find a link to some of that stuff later as I’m off into the office in London shortly.

So expecting youself to just be able to work full time now Benepali is helping quite so much isn’t that rational. I was off work for most of November and all of December. I found January hard despite working at home 4 days out of 5. But I’m finding February less hard. I still have stamina issues but I’m working on them and slowly they’re easing, but it is a slow climb back up - that I can certainly tell you and I was off work a mere say 7 weeks.

Of course these types of things are easier if you were ‘employed’ initially and remain ‘employed’ throughout. But the physical capacity to recondition yourself remains, one can with a certain level of capacity build stamina but it takes building. And of course not many new to you employers want to get involved with that, sadly. But as I think someone else said above the government here does though pay some lip service to this.

Whilst I so understand your despair I also think you’re being so hard on yourself with your expectations of your capacity, as it needs to be built up, brick by brick, one at a time.

I even do this walking the dog at lunchtime. I usually do the same route but try and do it faster than last time, or add in a loop but try and do all it in the same time it would take without the loop, slowly building up stamina and capacity. 5 months of bilateral hip bursitis truly messed up my leg strength and indeed endurance. I couldn’t climb steps initially, I’m doing much better with them now but still struggle but slowly I’m seeing improvement. It just takes time. I’ll know I’ve succeeded when I can get up off the floor all on my own. I’m not there yet.

[kwtawalker]

That is way too bad… sometimes it is just a lack of knowledge. I live in a USA, and I work full-time. I work in Court all day, and I commute. Until recently, I commuted 140 miles round trip. I have now cut it down to 84. My family depends on my medical benefits. I have suffered from plantar fasciitis and SI Joint Dysfunction for many years, and the last two has been unbearable neck/shoulder pain. Now deciding whether fusion surgery or epidurals with nerve burning in neck. People don’t have empathy without knowledge. 98% of people I run into have no knowledge of PsA, including many MDs. It is also difficult for people to discuss what they can’t fix…no words of wisdom will fix your issues. Maybe you should show your wife some of these posts? The problem with PsA is not enough information is shared. We all know cancer sucks, we all know MS sucks, and because of years of information, we all know RA sucks…,people hear arthritis, and they think ok…old people have aches and pains.

[darinfan]

I think much of the problem is the unpredictability of what we have. And, as Poo says, it’s easier if you have a job to go back to - I had temporary contracts and, of course, they expired long ago.

We are also in this ridiculous situation in the UK where there is a switch from one benefits system to another. That could mean, theoretically, that if I try a semester (three or four months) of teaching at uni (an easyish option given marking etc can be done at home) and found I couldn’t keep it up, the switch to the new benefit when I ended those few months could make me literally hundreds of pounds worse off a month than before I started! Where’s the motivation in that? Of course, on the old benefits, we do get allowed to earn £120 a week without it affecting benefit - but even a couple of hours of teaching at uni would come to more than that when you take into account office hours, marking, prep, etc. Certainly that kind of work is useful for PsA in that is relatively straightforward to do much of the work at home, and is therefore flexible.

I feel a little like a spider in the bath trying to crawl out of my current position!

[Poo_therapy]

And someone needs to put a string of loo roll in the bath to help you climb out. I do so understand your predicament benefits wise, it’s a soul destroying ridiculous mess presently. However please do continue to build your stamina though, if for nothing else than the sheer joy of it when further things are then manageable. I managed walking the dog in the woods yesterday for an hour and a half which I truly haven’t been able to do for at least a year if not longer. I certainly couldn’t do it at Christmas.

[sha]

I’m late to this thread. It’s a good one. Thanks everyone for sharing your stories. It’s helpful to know how other folks deal with this. After I was diagnosed I was on temporary disability for about 6 months. My disability checks didn’t cover all of my expenses so I had to use savings to pay some bills. I began working again when Enbrel began to work. The job I found was in a smaller company, in a much less stressful role (individual contributor vs manager). It allows me to telecommute from home most of the time, and I am only required to go into the office 1x a week at most. In the past two years I’ve been able to work during my latest flares and rx gaps, because my workload at this job happens to be manageable, and at home I can lie down to rest, or use heat or ice as needed. I use the computer all day long, so joint pain in my hands are my biggest challenge these days. I have many splints, ergonomic tools, and rubs. Also I have just switched from Humira to Taltz and am hoping to get some rx relief soon. I’m anticipating at some point I’ll end up on short term disability again so I’m looking at ways to reduce my overall cost of living so I don’t have to use my savings again. And even though I have full medical insurance now, whenever the doc prescribes a new drug I look to see how much the drug costs on lesser plans so I can anticipate if it might be available to me, and affordable, if ever I’m not working in the future. Hang in there everyone

[kwtawalker]

I have been on Dmards, Enbrel, Humira and my Rheumatologist recently said we may have to look at Remicade. I work full-time plus. There are days where it is very difficult and I would love to stay home, but I am usually the first one to work. Work is not an option as Biologics are $5,000 a month without insurance. I also know if not busy, my mind is focused on pain rather than elsewhere, I find that the more busy I am, the less I dwell…there are certainly days where I am in complete agony, but persevere.

[sstjohn]

I am a little late to this thread, but I enjoyed reading everyone’s stories so I decided to share mine.
I work 15-20 hours a week in retail, a (usually) quiet drug store. It requires a LOT of walking, standing, etc. but my store manager is awesome with me and allows me to take a couple breaks if I need to and he and my coworkers help me with lifting things and wherever else I may need. I work short shifts only, so anywhere from 3 - 5.75 hours per shift in a range from 745 am to 915 pm. It is extremely difficult for me to get through any length shift I work and I am always DRAINED when I get home. I usually have to take a nap. It is easier for me to work the mornings and even easier for the later morning/early afternoon shifts but the nights are very hard. No matter what I am exhausted after my shift ends. I wish I could make my own schedule or work from home, but it is not that easy for me to do at 20 years old with only a 2 year degree from college. I am living on my own with my boyfriend, so it is important for me to be making money. He takes care of a lot of the finances but I still need to be making money so he can continue to pay off his school loans, we can eventually buy our own house and start a family, etc. My doctor refuses to send people out on disability. I tried in August when I was in a bad flare up with my neck. All my doctor allowed was to continue to write me “notes” out of it like a doctor with school, but she only allowed that for a little bit. I thought it was a bit absurd but that is when I talked to my store manager and they agreed to work with my since I had been such a great employee for them. I plan on finding a more relaxed job when I am “healthy” enough to be more reliable and make a better impression. I love making my own money, I just hate having to push myself so much to do so. I think it is better for me to be working in some way, shape, or form. It stresses me out that my boyfriend pays for a majority of things now, I can’t imagine if I wasn’t working at all. Eventually I will find a better way to make my money, but for now I continue to push myself.