PSC at home and work ...
Work and Career : In my circumstance, PSC has been highly intrusive on my ability to maintain full-time employment. I can work, I am employable, but the nature of PSC dictates that I will inevitably take days off. At it's worst, I can be unwell for weeks at a time. Constantly tired, woken up by random attacks at all-hours, numbed by pain-medication, generally irritable.
Unfortunately, not every boss/employer/manager is sympathetic to our cause. Some can get downright frustrated by it. So it's in your best interests to figure out a way to explain to them what our disease is like ( .... and hey presto, here you are on the very website they can start educating themselves with !)
Generally, I find bosses like it if you're honest, up-front, organised about your duties and a no-fuss kind of worker when you're well.
To any employers reading now : I propose is that patients with PSC, when well, make better employees than most as we're less likely to have a day-off due to sniffles or headaches that would keep an otherwise healthy person away. Dealing with it instills a certain resolve and tenacity to endure hardship that could be effectively put to use in any workplace. Embrace their struggle by being flexible, and you'll have a loyal employee for a long time.
Back to us patients ... I'm not suggesting that blind ambition to climb the corporate ladder is a bad thing, nor do I think it's impossible to achieve with PSC. If you're well enough, confident enough, and disciplined enough, chances are you'll still achieve much. With that in mind, maybe starting a business from home is the way to go ? At least you can dictate your own hours, and answer only to yourself.
These days, with the addition of children into my life, I seek a better work/life balance and if that means sacrificing earning potential for greater happiness (ie: less negative stress), then so be it. It's purely a personal choice designed to minimise stress for me and avoid a lot of the white noise from the daily rat-race.
Stress : There's two types of stress in life. Positive (marriage, childbirth, buying a home, organising parties, etc) and Negative (bills, traffic, long queues, everything else from day to day life that gives you the shits).
Negative stress WILL exacerbate your "attacks" ... PERIOD ! You could be disciplined with your diet for 6 months, increase your exercise output and give up alcohol altogether ... but that isn't going to account for much if you lose your shit in traffic one day, or start a yelling match with someone, so avoid that at all costs.
These days, I have a little policy I call "zero tolerance for first world bullshit" ... Friend or Family, I don't discriminate. I keep drama-queens at arms distance for the sake of my own health. The LAST thing you need is some succubus draining the last vestiges of energy from you as you try to recover from hours of mind-numbing pain.
Trust me ... plenty of things will natural come along and fuck up your day eventually. From flat tyres in rain, to death of a loved one, there are loads of life hurdles to overcome in the future. So don't allow 'others' to bring you down, and don't stay in jobs/relationships that only serve to stress you out.
Carpe diem mofos !!!
Exercise : Do some. Then do some tomorrow, and the next day go do some more. In my opinion, regular physical activity is essential. I don't care what you do, and you certainly don't need to be an athlete to get started again, but it is very smart of you to start conditioning your body.
Regular periods of exertion is order of the week. Walk the dog, play a sport, ride bikes with your kids. A body that is used to the everyday rigors of moderate activity will be better prepared to endure any infection or surgery you may encounter in the future.
Having PSC usually goes hand in hand with Vitamin D deficiency, so there's an added benefit from getting outdoors and going for a walk for at least 20mins a day.
Mind and body strong, grasshopper !!!
Speaking of which ...
Mental Health and a Positive Outlook : Mental health is vital, and at the very core is 'acceptance'. Ergo, here's a quote that reminds me to keep my head screwed on straight .... "Asking life to be fair to you because you're a nice person is a bit like asking the bull not to charge at you because you're a vegetarian."
In the right circumstances the correct approach to battling this disease won't just change your outlook, it could even save your life. Depression will bog you down, and anxiety about the future will do horrors to your stress levels. If you're anything like me, you'll experience both over the years.
Take advantage of any psychologists hospital is willing to provide. Have a chat. Vent. Get it off your chest so the people who love you don't get the worst of you all the time. Get a network of people you can 'bitch & moan' to. By that I'm not talking about friends and family, I'm talking about clinical professionals like therapists and doctors.
You're in the endurance test of your life.
It is going to be hard at times.
Family, Relationships and Sex-Life : For singles, I imagine PSC presents some unique challenges. But nothing that can't be solved with healthy doses of confidence and a big ol' smile. :)
I'm happily married these days, and one of the worst things about this disease is the toll it takes on your nearest and dearest. They will see you at your absolute worst, and sometimes they become your unintended recipient of your mood swings. So when you are well, make extra efforts to show them you appreciate them hanging around. Especially your parents !!!
PSC will only be a barrier to successful relationships if the people involved aren't secure in themselves and confident in who they are as a person. There is absolutely no reason why you can't have an open and fulfilling sex-life once you find a partner. You'll find it'll all boil down to how well you feel when the mood strikes.
There's even logic in the idea that sex releases all sorts of feel-good chemicals in your body and has beneficial impact on your other body functions (ie: blood pressure, endorphins, serotonins, etc) so it's bound to do wonders mentally while you battle your liver.
Unfortunately, not every boss/employer/manager is sympathetic to our cause. Some can get downright frustrated by it. So it's in your best interests to figure out a way to explain to them what our disease is like ( .... and hey presto, here you are on the very website they can start educating themselves with !)
Generally, I find bosses like it if you're honest, up-front, organised about your duties and a no-fuss kind of worker when you're well.
To any employers reading now : I propose is that patients with PSC, when well, make better employees than most as we're less likely to have a day-off due to sniffles or headaches that would keep an otherwise healthy person away. Dealing with it instills a certain resolve and tenacity to endure hardship that could be effectively put to use in any workplace. Embrace their struggle by being flexible, and you'll have a loyal employee for a long time.
Back to us patients ... I'm not suggesting that blind ambition to climb the corporate ladder is a bad thing, nor do I think it's impossible to achieve with PSC. If you're well enough, confident enough, and disciplined enough, chances are you'll still achieve much. With that in mind, maybe starting a business from home is the way to go ? At least you can dictate your own hours, and answer only to yourself.
These days, with the addition of children into my life, I seek a better work/life balance and if that means sacrificing earning potential for greater happiness (ie: less negative stress), then so be it. It's purely a personal choice designed to minimise stress for me and avoid a lot of the white noise from the daily rat-race.
Stress : There's two types of stress in life. Positive (marriage, childbirth, buying a home, organising parties, etc) and Negative (bills, traffic, long queues, everything else from day to day life that gives you the shits).
Negative stress WILL exacerbate your "attacks" ... PERIOD ! You could be disciplined with your diet for 6 months, increase your exercise output and give up alcohol altogether ... but that isn't going to account for much if you lose your shit in traffic one day, or start a yelling match with someone, so avoid that at all costs.
These days, I have a little policy I call "zero tolerance for first world bullshit" ... Friend or Family, I don't discriminate. I keep drama-queens at arms distance for the sake of my own health. The LAST thing you need is some succubus draining the last vestiges of energy from you as you try to recover from hours of mind-numbing pain.
Trust me ... plenty of things will natural come along and fuck up your day eventually. From flat tyres in rain, to death of a loved one, there are loads of life hurdles to overcome in the future. So don't allow 'others' to bring you down, and don't stay in jobs/relationships that only serve to stress you out.
Carpe diem mofos !!!
Exercise : Do some. Then do some tomorrow, and the next day go do some more. In my opinion, regular physical activity is essential. I don't care what you do, and you certainly don't need to be an athlete to get started again, but it is very smart of you to start conditioning your body.
Regular periods of exertion is order of the week. Walk the dog, play a sport, ride bikes with your kids. A body that is used to the everyday rigors of moderate activity will be better prepared to endure any infection or surgery you may encounter in the future.
Having PSC usually goes hand in hand with Vitamin D deficiency, so there's an added benefit from getting outdoors and going for a walk for at least 20mins a day.
Mind and body strong, grasshopper !!!
Speaking of which ...
Mental Health and a Positive Outlook : Mental health is vital, and at the very core is 'acceptance'. Ergo, here's a quote that reminds me to keep my head screwed on straight .... "Asking life to be fair to you because you're a nice person is a bit like asking the bull not to charge at you because you're a vegetarian."
In the right circumstances the correct approach to battling this disease won't just change your outlook, it could even save your life. Depression will bog you down, and anxiety about the future will do horrors to your stress levels. If you're anything like me, you'll experience both over the years.
Take advantage of any psychologists hospital is willing to provide. Have a chat. Vent. Get it off your chest so the people who love you don't get the worst of you all the time. Get a network of people you can 'bitch & moan' to. By that I'm not talking about friends and family, I'm talking about clinical professionals like therapists and doctors.
You're in the endurance test of your life.
It is going to be hard at times.
Family, Relationships and Sex-Life : For singles, I imagine PSC presents some unique challenges. But nothing that can't be solved with healthy doses of confidence and a big ol' smile. :)
I'm happily married these days, and one of the worst things about this disease is the toll it takes on your nearest and dearest. They will see you at your absolute worst, and sometimes they become your unintended recipient of your mood swings. So when you are well, make extra efforts to show them you appreciate them hanging around. Especially your parents !!!
PSC will only be a barrier to successful relationships if the people involved aren't secure in themselves and confident in who they are as a person. There is absolutely no reason why you can't have an open and fulfilling sex-life once you find a partner. You'll find it'll all boil down to how well you feel when the mood strikes.
There's even logic in the idea that sex releases all sorts of feel-good chemicals in your body and has beneficial impact on your other body functions (ie: blood pressure, endorphins, serotonins, etc) so it's bound to do wonders mentally while you battle your liver.