Good thread,
I am currently contracted to work 27 hours a week (originally 37.5hrs) luckily we have a strong sickness policy in the NHS and I’m able to request ‘reasonable adjustments’. We do long shifts, usually 13hrs, and doing 3 a week. My shifts are no longer on a flexible rota but now static to a day off between and only set days with set times.
I can do most of what I could before diagnosis, but cannot stand still for long nor sit for too long. Some days I am less confident about my clinical abilities but as my management are happy with my performance at work I’m guessing its more to do my confidence. My fatigue is, for me, the worst aspect of my conditions and I am often in tears on my way home as I’m so exhausted…currently I’ve been off sick since 21 August due more to fatigue than pain.
My ‘old job’ which had been my career for 20 odd years was a desk job but involved a lot of international travel. I guess I worked around the 40-50 hours a week with some very long days prior to an important meeting. I had some accommodations from my employer with regards to legroom on longer flights and I worked from home a lot which suited me better, as I hated the early morning commute as I would stiffen up totally and could barely shuffle across the car park.
Two years ago I was made redundant and retrained in Horticulture, taking a college course one day a week and volunteering at a local plant nursery 3 mornings a week. I found the change to more physical work benefitted me overall, although there were days when I struggled to push heavy barrows and lift and stretch because my flexibility had disappeared. I knew I was slower than the other staff and was told at one point that I was ‘not productive enough’. I didn’t want use PsA as a justification as it would have thrown up all sorts of questions in my mind about my career choice!
Undeterred, I looked for a permanent job and now do 2 full days paid nursery work and 4 half days private gardening. I still feel that the physical nature of the work has helped. I can generally regulate what I do, and can move about or do different tasks so I don’t get completely stuck! I also love what I do and that helps enormously. At the end of the day I am completely shattered and useless, whether that is PsA or age related or me being pathetic I don’t know… 
I am hoping that continuing Enbrel will give me the opportunity to build up my physical strength again as my mobility increases so that I can stop feeling that I have to ‘compensate’ for not being as fit or strong as the next person.
I've been having internet issues since Sunday and just got caught up enough to get on here and this was the first question I saw. How fitting that I'm currently working on a blog post about this very thing! We're in a precarious financial situation right now because of my inability to work for the past year or so. I was doing random in home child care jobs here and there before that - for up to six kids some days during the summer months! I've been asked by people I see socially several times in the past month why I don't just get a job. It's difficult to explain to people that just because I act healthy and energetic and bubbly when I see them, it doesn't mean that I am those things ... that it sometimes takes a day and a half of rest for me to manage a couple hours out.
I have the most aggressive case of PsA my rheumatologist has seen, and have been on and off meds due to other health issues and the testing they needed. I also have Celiac, autoimmune hepatitis, Hashimoto's thyroidosis, and ankylosing spondylitis, so I'm not your "typical" PsA patient, if there is a such a thing.
Enjoying reading all the replies and comments. Thanks!
Most of the comments regarding work and work load seem to be a matter of knowing when to “push” ourselves and when to "back off."
Seems like we have to be careful not to let PsA beat us either way … either through inactivity & shriveling up or through physical depletion & mental collapse.
My tendency is, “if in doubt, push harder & keep going.” But just recently, I have found that when I try to “push harder” I just end up sleeping for 12 hours afterward, trying to recover, or I find myself in tears over basically anything or everything. Both of which are telling me, "Paul, I think you’re pushing too hard."
Keep commenting. It’s helpful to hear your stories!
Learning how and when to push ourselves and when to let go is one of the most difficult things to learn about this disease. It changes so quickly.
Good example is this week--we went to the Vince Gill concert this past Saturday and had a great time. I spent Sunday watching football and doing very little else because my body told me it needed that down time. I realized yesterday that for some reason, I should have been taking it a bit easier this whole week because my body was giving me signs that it hadn't quite recovered from Saturday evening.
The same thing did NOT happen when we saw John Prine in June. Thinking about it just now, I realized that we saw Prine on a Friday night and I had two days to recover. I also was not still recovering my balance from an allergic reaction nor was I adjusting to a smaller dose of Methimazole (I now have Graves disease--my fifth auto-immune disorder) back in June.
I went from a 60 hr per week management position to a job where I'm on call 2x (24 hr shifts) week. I didn't think that starting a new job would be difficult but I seem to have developed a cognitive issue that mimics dyslexia which made learning new stuff quite challenging. I was on Gabapentin so my GP dc'd it and put me on Adderall which helped a little. Still have trouble with transposing and when writing I tend to start words with the second letter first... so weird.
Now that I'm all trained and can go at my own pace, I love it - It takes my mind off of ME : )
Hi Paul...I used to work as much as 80 hours a week in my late 20's and up until about 6 months ago I had been working about 50-60 hours per week...unfortunately, I literally hit a wall in March and have recently changed jobs to one that is only 20-30 hours per week. I am 37 and had been struggling the past few years to maintain more than full time hours. I have found the change to less hours, although economically inconvenient, has made a tremendous difference in my ability to function in my day to day life outside of work. My fatigue, pain levels and mental fog make it difficult for me to work more than 5-6 hours in a day. I don't know anyone else locally with PsA, but my family doctor told me he was surprised I have been able to work so much, for so long without major difficulties. He mentioned that his other patients typically only work part time.
Ah work..... I love my job, I need it, I get tons of self esteem and reason for living from it and I have been a workaholic all my life. I am a nurse, but in the UK being a nurse is something different to other parts of world, and I am a specialist nurse for vulnerable people so I feed my 'soul' (ego) by knowing I have helped someone every day. I don't just go the extra mile, I'm the zealot nurse who saves lives, feeds people, gets them jobs, houses, and I get to know if karma is a thing I'm quids in.
It ain't a thing. I have very quickly lost a lot of strength and flexibility in my dominant hand, and as soon as I can't work anymore I will be a distant memory. Why didn't I put me first and my real life and relationships? Because I believed in a lot of bollocks Catholic rubbish about putting others first, rolled up with a protestant work ethic, and I am going to end up poor and alone! After saying all of that, I just applied for promotion and got it - (course they dont know about my inability to sleep, write, take bloods, remember why i am in the car or where i am going... Thats not the real me.... Im supernurse. I am becoming just a little bit mad I think. Thanks PsA. :(
Yes, PsA plays havoc with careers, relationships and retirement plans. Now, Celtica, just let that wonderful zealot loose on your PsA! You can do it!
Why haven't I seen this passionate outburst before? It's straight from the heart and no mistake. Change the context to suit and you'll be speaking for so many of us.
I don't personally believe that we have as many choices in life as we're told we have. If we do one thing .... like, say, commit ourselves body and soul to an incredibly important job, then other areas of our lives may well suffer. And same goes if we reign ourselves in and play safe - there's still the loss of what might have been.
But having PsA doesn't mean we can't mould our lives little by little to something more sustainable or, with luck (by which I mean the best treatment + luck), continue doing what we love doing. In other words: 'what Seenie said'.
Celtica said:
Ah work..... I love my job, I need it, I get tons of self esteem and reason for living from it and I have been a workaholic all my life. I am a nurse, but in the UK being a nurse is something different to other parts of world, and I am a specialist nurse for vulnerable people so I feed my 'soul' (ego) by knowing I have helped someone every day. I don't just go the extra mile, I'm the zealot nurse who saves lives, feeds people, gets them jobs, houses, and I get to know if karma is a thing I'm quids in.
It ain't a thing. I have very quickly lost a lot of strength and flexibility in my dominant hand, and as soon as I can't work anymore I will be a distant memory. Why didn't I put me first and my real life and relationships? Because I believed in a lot of bollocks Catholic rubbish about putting others first, rolled up with a protestant work ethic, and I am going to end up poor and alone! After saying all of that, I just applied for promotion and got it - (course they dont know about my inability to sleep, write, take bloods, remember why i am in the car or where i am going... Thats not the real me.... Im supernurse. I am becoming just a little bit mad I think. Thanks PsA. :(
Ah don't mind me, I was having a bad year ;)
I'm just struggling with the unpredictability. If I don't know what's happening to me how can I explain it to my employer, family, partner.... Its like the gopher machine at the amusements, I think I have knocked one down and another two pop up, and I am not winning at the moment. I am at war with my body, and my tactics are not honed yet.
And I am a bit of a control freak, so this is ridiculous to me :).
I just can't make it stop or persuade my rather patronising rheum nurse to stop ignoring all my symptoms... I go from furious to optimistic to defeated .to occasionally not thinking about it all..i am doing ok overall though, today apart from horrible DIP pain, and ?? Sciatica and ankle pain i have felt quitr well, just fed up feeling like i need to explain myself, then feeling i am talking about myself too much...and also fed up having to apologise to people for not being superhuman anymore.
" I’m faking being sick? You must be confused because what I am actually doing is faking being well. I don’t always talk about all my symptoms. I don’t always admit when I’m not feeling well and I often put on a happy face because it’s just easier that way.
Any idiot can fake being sick. It takes real talent to fake being just fine when you feel like hell"
At least here, we can share what is really going on and be understood and believed.
Basically, we get it. You don't have to apologise to us for voicing, so frankly and so well, the things that go through all our minds.
Celtica said:
Ah don't mind me, I was having a bad year ;)
I'm just struggling with the unpredictability. If I don't know what's happening to me how can I explain it to my employer, family, partner.... Its like the gopher machine at the amusements, I think I have knocked one down and another two pop up, and I am not winning at the moment. I am at war with my body, and my tactics are not honed yet.
And I am a bit of a control freak, so this is ridiculous to me :).
I just can't make it stop or persuade my rather patronising rheum nurse to stop ignoring all my symptoms... I go from furious to optimistic to defeated .to occasionally not thinking about it all..i am doing ok overall though, today apart from horrible DIP pain, and ?? Sciatica and ankle pain i have felt quitr well, just fed up feeling like i need to explain myself, then feeling i am talking about myself too much...and also fed up having to apologise to people for not being superhuman anymore.
I’m too late to the party with the answer. I work 34 hours a week, I’ve dropped down from 48 ( lost a night shift) but that was due to the pressures of having a toddler!
I’m a paramedic, I work long hours and it’s incredibly heavy work. My poor wrists, hands and feet hate me at 3am, but I love my job. My PsA was only diagnosed this year, but I’ve probably had it for a long time… I’m always tired, 20 years of shift work and a dodgy back have hidden some of my long term symptoms. I guess I’m going to take my body as it comes, if it gets worse, I’m also a nurse, and I’ll hopefully find something not so labour intensive. But for now, I’ll stick with this job. I have had to modify lifting and some clinical techniques, and my team knows I’m a bit special, so they help me too.
Keryn my hat is off to you! First, for soldiering on with PsA. Second, for your love of being a paramedic: during several years of eldercare crises, I had the opportunity (or should I say privilege) of watching paramedics in action many times. My conclusion: paramedics are the angels of the health care system. They swoop down into blood, panic, suffering and chaos to give people the best chance of making it out of the morass in one piece. This is not to diminish my appreciation of doctors, nurses and all the rest of the health care team, but paramedics are just plain special.
And this is a party that is never over – it’s never too late to join in here!
I have learnt that “fighting” our condition is futile. I know that sound pessimistic, but its not. In healthcare, when we help those who have had a traumatic change to their lives, do we not help them adjust to a life that is hopefully just as fulfilling? In our best outcomes we see patients who now see themselves as people first, not patients. We strive to enable them to make adjustments to everyday living so they can live with their chronic conditions, pain, loss of limbs etc. and still be the people they are. I’ve been shouting long and loud as an advocate for patients in my care.
But its strange how we won’t do that for ourselves, (cant you just tell I’m on a pain management course!) we kick and shout and try to cling onto the life we had before PsA. I love my life, I’m happy and getting happier with this course. Yes, I’ve made massive changes in my life and work, Yes, I’m suffering financially, but I have a roof over my head, food in my tummy, a car that is ancient but working (fingers crossed) I take time to “smell the roses” I have time for my loved ones and time for myself to rest and recuperate.
I’ve been off work with crippling fatigue since 22nd August but am going back on a phased return tomorrow. I’m excited to see my work colleagues and patients.
We are a work in progress, there are no quick fixes, no getting back to life before PsA…but there’s the you who can be happy, productive and accepting, the silly or mad, crazy, lovable, fascinating, compassionate, empathetic, joyful (or miserable) person you’ve always been. That’s the fight I willing to take up, the fight to be me despite the PsA and Fibro.
Forget 'like', I love this.
Louise Hoy said:
I have learnt that "fighting" our condition is futile. I know that sound pessimistic, but its not. In healthcare, when we help those who have had a traumatic change to their lives, do we not help them adjust to a life that is hopefully just as fulfilling? In our best outcomes we see patients who now see themselves as people first, not patients. We strive to enable them to make adjustments to everyday living so they can live with their chronic conditions, pain, loss of limbs etc. and still be the people they are. I've been shouting long and loud as an advocate for patients in my care.
But its strange how we won't do that for ourselves, (cant you just tell I'm on a pain management course!) we kick and shout and try to cling onto the life we had before PsA. I love my life, I'm happy and getting happier with this course. Yes, I've made massive changes in my life and work, Yes, I'm suffering financially, but I have a roof over my head, food in my tummy, a car that is ancient but working (fingers crossed) I take time to "smell the roses" I have time for my loved ones and time for myself to rest and recuperate.
I've been off work with crippling fatigue since 22nd August but am going back on a phased return tomorrow. I'm excited to see my work colleagues and patients.
We are a work in progress, there are no quick fixes, no getting back to life before PsA........but there's the you who can be happy, productive and accepting, the silly or mad, crazy, lovable, fascinating, compassionate, empathetic, joyful (or miserable) person you've always been. That's the fight I willing to take up, the fight to be me despite the PsA and Fibro.
Louise, love this too. I have been following your pain management thread and you explained similar ideology there. Can you tag this response and put it with the your other discussion? I think now and in the future this would hit alot of points some of us look for when we think of pain management. Acceptance always leads to peace thank you for the well said reminder!!
Lol thanks Rachael and Sybil, sorry I sound a preachy (just re read it!)
I would tag it if I could but just on the mobile app at the moment and can’t find how to x
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.