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Living with Psoriatic Arthritis (PsA)

What about work?


#24

Access to Work is great, but the problem that I find is that adaptation doesn’t account for many of the things I find difficult or that would be a problem. Of course getting the right chair or desk is hugely important, but there are issues beyond that which it can’t help with - such as reliability.

There are periods where, if I go out for four or five hours, I’m then practically unable to move for the next four or five days! Doing research or an academic job in my case would help as I could do much of it from home. I don’t need to be in the office to mark, or to read, or even to write. So, in theory that would be a way forward - and hopefully the research grant we have put in for comes through and off we go. But, beyond that, getting that kind of job isn’t exactly straightforward - not least because we only have one uni in close proximity of where I live. Obviously most people would move around the country to where the work is when it comes to that type of job - but moving away from the support network I have would not be a sensible move.

Of course, none of that means I’m sitting at home doing nothing because I’m always working on something.

But I think my own issue comes with the fact that the success of biologics in making me walk easier and being in less pain results in PsA becoming more “invisible” to others. No doubt people seeing me in the city could easily wonder why I didn’t have a job. And I do go into the city a lot - because I literally live in a flat adjoined to the shopping mall. The main Marks and Sparks is my corner shop. HMV is about fifty metres away (for the time being!). The city library is across the road. I can smell Costa Coffee from my flat. I’m very lucky in being unable to do much and yet be able to get to these places.

But there is that thought of what others think of me not working.

“Well, I always see him in the city…”

But PsA effects us in other ways too, it’s not just the regular join pain. The tiredness, the anxiety, the messed up immune system, the depression, eye problems stomach issues. I have bipolar as well - for about twenty-five years now - and that hardly helps.

But sometimes even I on a good day might think to myself “you should be working if you can get around like this.” But we don’t know when the good days and the bad days are going to occur, and its the unpredictability of what we have which is much of the problem - and when you think you can start doing something more, PsA comes back and bites us on the backside or slaps around the face to tell us we shouldn’t have been so stupid and we’re now going to be punished by feeling crap for a week.

Ideally, I would go into uni and teach for three or four hours a week. And I get asked if I want some teaching on a regular basis. But even that isn’t straightforward. Uni teaching pays very well. Even two hours of teaching a week would take me over the £126 threshhold that you’re permitted to work on ESA (taking into account payment for office hours, marking, attending lectures etc). The benefits system is bonkers. Under £126, you’re allowed to keep all that money plus your ESA. Over £126, you have to sign off entirely! So, if I go and do that teaching for, say, four months, I have to sign off for that time, be no better off during the working period (which I don’t care about), and then have to go through the whole rigmarole of signing back on again after.

In the past that wouldn’t be a problem. But now we have the ogre of universal credit, and any change in circumstance means I would have to go on to after finishing the teaching - which, in turn, means that me doing some teaching for three or four months results in me ultimately ending up around £45 a week worse off than when I started!!! Obviously I wouldn’t be worrying about that if my contract was for a year or two, but it’s no incentive for anyone who is disabled or unwell and thinking of doing some temporary employment just to see how they would get on.

I did speak to someone about this at the job centre once. And they told me that if I worked under 16 hours a week, I wouldn’t get more than £126. I pointed out that this was only the case if I were on minimum wage.

But then, those of us who have filled in ESA capability for work forms will know that the govt seems to think that the only work we are capable of is very strange indeed. We are asked how many pints of milk we can carry, whether we can make a mark with a pen on a piece of paper, and whether we can lift an empty cardboard box above our heads. I have no idea what job that would qualify us for!!!


#25

Darin fan, is your moniker because you’re a fan of Bobby Darin? My husband does a mean karaoke of Mack the Knife.


#26

Yes. My book on him was published a couple of weeks ago too! (Note shameless plug)


#27

Totally agree :sunglasses:


#28

Important question, coming to grips with it at the moment, fractures, visits to hospital and sick leave so far in the last couple of ears may well cost me my job altogether, as company contract allows for a certain number of months sick leave every two years. Am about to grapple with documentation necessary to apply to Italian nhs for disability status, which if granted would allow me three days a month to use for tests, visits etc, as well as permission to retire earlier. It is not easy to be granted this status w psa, will have to see if poss by adding up cancer and a few other mishaps. Was living free lance for a long period as interpreter translator teacher for companies, universities et al, and returning to that life might not be a despicable idea if worse came to worse.


#29

I know it varies by country, (but can be done in most in one form or another) If one does free lance work (even uni teaching as an adjunct) you can set it up as an independent company (not an individual) that is supplying the services. In the USA payment comes to the company as a 1099 not earned income so that you can control your income (drawing low salary) You then can expense many things such as internet, cars, utilities office space etc. In the USA I operate as an S-Corp so am not even subject to self employment tax. My "employer is a great guy who even pays my Health insurance premium and pays 2:1 for may HSA to cover deductible, co-pays vision, OTC things, non-covered adaptive aids and dental. A good accountant/tax attorney is a good investment…


#30

What TNTlamb said - I do almost exactly the same in Australia, and it works very well for me so far.


#31

@tntlamb and at @Jen75 in the UK they’ve just closed that loophole from an income tax point of view which has hit a lot of contractors to companies hard. My employers love to use contractors as such people get no employee benefits and notice periods for firing them is only a couple of weeks instead of at least 3 months and they’re not entitled to any redundancy etc so a huge benefit to the employer. They lost a lot of really excellent people doing this due the closing of that income tax loophole. It basically means such contractors can’t control their income for tax purposes anymore through such a shelf company.


#32

Be more shameless and let us know the name of the book as I’d love to read it and I still remember your video of you singing one of his songs which was sublime.


#33

You’re so right the present benefit system is such a nightmare, it’s totally bonkers. Did you see a group of 3 or 4 people have just won the right to judicially review the new system?


#34

The only reason I’m working full time is because I have a medical accommodation to telework up to 5 days/week.


#36

Shameless indeed! Amazon???


#37

Yes, I saw that about the court case. And it’s right that they should have won. I believe they were complaining about the way in which people who are paid four-weekly by their employer are penalised by the benefits system because on the occasions where they are paid twice in a month, they are deemed to be earning too much money for any benefit at all.

It’s ridiculous. It shouldn’t be WHEN you are paid, it should be down to how much you earn on a weekly basis. The same would be true if I did some ad-hoc research work at the uni, for which I would get paid once I had finished the job. If I got a payment for, say, £600, it wouldn’t be viewed as earnings of £60 a week for the ten weeks it had taken me to do the work (and, as permitted work, I wouldn’t lose any benefits) - it would be £600 for the month in which I get paid (in which case I would lose most of my benefit for that month).


#38

Yes, it sucks doesn’t it. They do that here too for direct employment contracts, but then attempt to even it out at the end of the tax year (though there are lots of little benefits - like cheaper pharmaceuticals which are through our government- that never get addressed).

A thought - many employers will be flexible within their own parameters. To use the example you’ve given above, the thing they need is not to pay you anything till you’ve completed the job, and the thing that you need is to be paid in small weekly instalments. So could you ask them about getting paid in ten weekly instalments of £60, only commencing once you’ve completed the job?


#39

That would be ideal, but the bigger the employer, the more difficult it would be to get them to do something like that - and get it right. It could be “fiddled” at department level in all likelihood, but it shouldn’t need to be simply because the benefits system “sucks” as you so aptly describe!


#40

Mentioned above is the comment:

… repealed Obamacare and we are back to no coverage for pre-existing conditions.

I have worked in health insurance in America for 25 years and the above is a largely incorrect statement. If you have had health insurance without a gap in coverage of greater than 63 consective days you have full coverage should you change plans, by law there is no pre-exisiting condition clause.

If you’ve been without health insurance for more than 63 consective days and you’re not signing onto a group/employer-sponsored plans, you may have issues for the first year, after the first year on the plan your premiums would revert to the standard amount without pre-exisiting clause.

Please feel free to PM me with questions about this or any other insurance or prescription insurance topic.

azurelle


#41

They’ve only won the right to have the judicial review, they haven’t yet won the review. But the judicial review court case will get media attention so watch that space.


#42

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.


#43

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.


#44

@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.