So, for those who remember I have been on a gradual return to work plan since mid feb. I was off for a year due to rapidly decline with PsA and thyroid cancer. I am an ICU RN and have worked hard doing many extra certifications as I LOVE my job. I have managed to be able to do 8 hrs up to four consecutive days or 8 hr evening shifts. I live in the article in Canada (north of sixty but below the treeline). Winter is rolling in and I am pooping out. I am so exhausted from working this week I passed out cold when I got home today. Thank goodness my two young kids were glued to the tv. ( a bonus for them as tv is not normally on at that time).
My boss is trying to help and thought that maybe a break from direct patient care in the unit might help. So, they moved me to hospital supervisor role. Granted we are only a three floor hospital but supervising lately has been very demanding and busy. Multiple code blues, crashing patients and huge staffing issues. Not sure this is helping much. On top of this I have been dx with fibromyalgia and ave recently lost 1/2-1/3 hand strength in both hands and am clumsily with my fine motor skills. I do not feel confident that in a stat situation my hands will work properly and, that scares me. I love patient care but do not want to risk someone’s life on my fingers working that day.
So, I have approached my boss to ‘plan for the future’ with the understanding the future may become all to present. I am really scared. I am the major breadwinner and really need the financial support of my job. I have two awesome kids who need me to be part of their lives, not a sleeping giant in their world. This disease has seemed to progress aggressively within me.
I know I have to change jobs. I can not continue to push at work and then not be there for my family. I mean lets not even discuss the laundry mountain that as not been done in a week!
I guess with all of this in your minds and your experiences; how have you had discussions with employers? Did you have success with approaching the subject in a certain why?
And how am I suppose to accept this loss of that part of me and be more positive forward? I keep feeling completely pissed off tt I can not do the job I love, be as active a Mom as I would like to be and certainly never entertained the thought of have a house in this state, ( let e be clear, no health hazard shut the laundry and litter are definitely winning).
I have joined a women’s group at my church and have tried to reach out for support. Because I look OK people have seemed very suspicious and pissy at work. " Why does she get to supervise? Or Why does she get to do only eight hours, it is a twelve hour shift!" I have tried to explain it is all I can do and I would rather not have this disease and be able to work my full shifts. But, frankly most do not care or see ’ cause you look fine’. These are healthcare professionals who are supposed to know and have empathy. Is there particular strategies you a e used with coworkers that has lifted some of the bad air? My employer as a duty to accommodate clause and I am worried whatever job move I make it is going to cause more issues with my coworkers. I really want to keep working and helping people. If it can not be bedside nursing there are other jobs I am very capable of doing mentally but physically not so sure.
Any suggestions or advice welcomed as most people I know would just’ pull up their boot straps and get on with it’. -actually had a friend say that. Right now I can not even get a ‘grip’ on the boot strap let alone pull it up.
Help?
Sorry if I am rambling it is 213am and I am sore sore I an not sleep so praying for the morphine to kick in so I can get a little rest. I hate having to take morphine- but amputating limbs is not a current nor feasible option.
Oh Kirsten, I know its so scary…I’m afraid of the future too working in a busy dialysis unit, unsure of how much more I can give to the job I love.
You would think that healthcare professionals would have empathy but it is sadly lacking! I’ve tried to soldier on but have reduced my shift by an hour and now do 3 x 12 hour shifts a week on alternative days so I have a break inbetween shifts but I’m sinking! The senior management do ‘accommodate’ to a point but I have to fight for each little step and have been branded a bit of a trouble maker, and they look at me as if I’m a malingerer. I’m exhausted anyway and fighting management doesn’t help.
Are there advisorary roles you could apply for? Like liasion teams which are so valuable in helping patients through the onset of illness and treatment. We have health visitors in UK, 2 of the nurses I work with have recently taken up jobs as Health visitors as there is a shortage of them over here, they both love it and say its worlds apart from the physical and mental strain of the unit.
I’m lucky in the fact that I can sort of juggle my workload and paperwork to a certain extent to suit how my body is on any given day, I mentor a lot of students and junior staff and have recently fought for permission to use a needling stool when commencing or disconnecting patients treatment ( the other 2 units we run already have stools and have had for some years?!) So feel abit subconscious perching on my stool whilst giving treatment or supervising students but I grit my teeth and ignore the looks…I know this is the best way to be able to focus on my patients needs rather than my pain. My line manager says he is quite happy with my performance at work, but still doesn’t realise the implications of this disease and the possible future for me especially as he loads me with more work because 'he knows it will get done’
I know I am going to have to sit down and discuss the issue with him, but I pretend I’m ok and am just having a bad week. I’m one of those who’s not very good at taking my own advice! Lol
I wish you luck and send mybest wishes to you…maybe we both have to start looking at different strategies for work x
Lots of love to you - what a difficult situation to be in! It sounds like your heart is breaking for your kids - and yourself- as they need their mom and you need to mother them. It sounds like your priorities are in the right place. :) I wish you well on your journey to find a vocation that works well with your psoriatic arthritis.
I am not sure you have much of a friend in someone who tells you to pull up your boots straps and get on with it. Hopefully they did not mean it as it sounded.
It is really hard to think straight when you are ill. It is pretty sad that your co-workers are not more supportive but I think that no matter where you work that would be the attitude. People have a hard time seeing past there own situations.
I can tell you with certainty that the laundry and the litter will still there so don't push yourself. Your job sounds extremely demanding but if your employer will work with you then go for it. I would not give the co-workers a second thought though I know that sounds hard. If they were in your shoes they would most certainly be doing what helped them.
I hear you and I am still awake. I LOVED my job. The day I left, my boss cried (with me) because she did not want to let me go, nor I wanted to leave. My last year I taught in a wheelchair because I did not have the strength to do a full day on my feet. I see that you are in Canada. When people leave the hospital here in the States, many times they send a nurse (RN) to check-up on patients at home. These nurses manage their own hours. Just a thought.
How old are your kids? Maybe they can help with the house and laundry. Less than 6 years old--they LOVE to help. Over 6, they can be taught to take responsibilities at home. It is very good for them.
My heart goes out to both of you ! Last year I had to retire from my 20 year career as a birth doula, a a career I dearly loved. It was very physically demanding, never knowing when you would be called to a birth or whether it would be 3 hours or 33 hours until my "shift" would be over. I am still able to teach Lamaze classes, do lactation counseling and some postpartum work on a very limited basis. The postpartum work is much easier on me physically, as snuggling a baby while mom sleeps is something I can do while sitting down, but I also used to love to offer light housekeeping, such as tidying the kitchen, folding laundry if needed and starting a simple meal for supper for the family at the end of my shift. These days I am doing well if I can get my own family's laundry done or get their supper cooked ! I was self employed as a perinatal professional, so it all depended on me. I would have been smart, in the early days, to have started an agency that I could be managing now, it hindsight is 20-20 and that's about it.
My PsA mainly affects my hips, pelvis, knees, ankles, feet, toes and neck. Some days it is a major challenge to walk.
My hands are about the only body parts that have been unaffected by the PsA, so fortunately I have been able to turn another lifetime love into a new career. I am a musician and artist. My art mediums involve mostly beads, fibers and mixed media, but I have branched out into some painting and drawing. I have opened a shop on Artfire :
artfire.com/users/blueridgediva
and I host an open house gallery every month with some of my other artist friends. I hope to do some teaching of my craft, and eventually open a studio/ art center / gallery where I, and other local artists can benefit and the community will have opportunity to grow artistically. Who knows, maybe I can raise $$ for PsA research or something.
All this to say that when life brings you something like PsA it can be devastating, but I am trying to look at it as an opportunity to parlay into a new adventure and make the best of the hand that I have been dealt. No doubt, it will prove challenging, but all of this has given me hope and a reason to look forward to the future.
Have you ever heard of Joni Eareckson Tada ? She s a woman who became a quadriplegic after a diving accident. I saw this video recently and it really inspired me. Joni is a master artist, who paints with her mouth ! http://www.joniandfriends.org/television/painting-gods-pleasure/
My faith tells me that nothing shall be impossible with God. That keeps me going ! I pray that somehow we all find a way to make the best of our situation. Life as we have know it may be over because of PsA, but I pray that we can all find some kind of hope in knowing that we can still have a beautiful life in spite of our disability.
Have you thought of going back to school and getting your Nurse Practitioner License? They tend to have more of a diagnostic role and a less physical job. Here (New Brunswick) they run a lot of the clinics so the setting is more like a doctors office, writing scripts and ordering tests. My daughter is a newly graduated RN and is planning on getting her masters to be a nurse practitioner after the required time has past (5 years i think). The pay is more (also a bonus!). Might be a good option for you.
Hi everyone. I am so sorry for the work problems and can relate so well. After 22 years of working as an RN at a boarding prep school, I was terminated this August. My PsA has getting the best of me, I my schedule was working two 15 hour days and 48 hours working/ on call every other weekends, exhausting to say the least. Long story short, my employer would not work with me on redistributing my hours to have less hours per day, instead I lost a job I loved. And in doing so they violated numerous laws, including the ADA. I now have an attorney and he attempting to get me STD under my former employer, and hopefully lead into LTD.
I miss my life as a nurse, I miss my high school kids, I miss the adreneline of the emergencies on the sports field. I even miss not leaving the ICU for two days when a foreign student was critically ill and we were waiting for parents to arrive from China. My supervisor was a school administrator, he was a great friend, a support when I needed him and just a fun friend who could turn a stress filled day to a good one. When I turned to him for help, the friendship ended because he had to side with HR to protect his own job. I lost my career, my friends and an important part of my life all because of this damn illness…I HATE ALL I HAVE LOST.
I also have a host of other illnesses that can be related to autoimmune disorders, have six specialists and take 15 separate prescription meds every day, too many but all needed. I can and will live with all the medical procedures,surgeries and pain I am dealt, but the loss of my career is the most devestating of all. A nurse is who I was, it defined me, I loved it all. I am mourning the loss but am trying to move on. At 59 years old, finding a new position is slim to say the least. I need to accept my new life, it will be difficult. I will find a volunteer position, maybe a new hobby , schedule the foot and shoulder surgery I have put off and who knows what else. But deep inside I will always be a nurse who unfortunately is now on the other side of the stethescope. No matter what our career or calling, we also have to accept that our bodies may not cooperate. WE CAN’T GIVE IN…that will be my new mantra. BUT…I miss my old life. Memories will have to do…On to a new me? Guess so :0}
I even taught a lesson in my dreams and review at the next day's dream. Every new school year was very stressful to me, reminding me of my loss. I cried for months, for a couple of years. But then I learned to accept it, and I am in the adapting stage. I am trying to fight the battles I can win, and adapt to the ones I cannot; accepting my today helps me to project myself to a tomorrow. It also keeps me sane while dealing with an insane deal.
Oh, I volunteer to teach a Sunday School class at church, and even that exhausts me, but I emotionally need it. Inside, I secretly refuse to give up teaching, love it too much.