How have you coped with the uncertainty of what is going on in your body?

I gave up my job while in the diagnostic stage which has placed financial concerns on my family. Every morning I get up at 'work time' have breakfast, tidy up etc and on most mornings I think I wouldn't feel comfortable going to work today because I am symptomatic and feel unreliable. Some days I feel ok and would love to be able to go to work. I don't know what will make this situation change for me,because as I've said before my condition isn't life threatening and I am not sure if having a PM is the answer. Some of it saying 'I can feel these symptoms and be ok',but other times the symptoms are so physical this doesn't work.

What sought of lives do you have? I feel stuck,frustrated and powerless.

 

 

The key is to find an extremely understanding employer/coworkers. I am in a similar situation and if i'm having and "unstable" day, I let them know as soon as I get there. I will limit myself to desk duties and if at any point I feel weak or light headed, I go lie down immediately, no questions asked. I have been through a lot at work and they have always been extremely supportive and concerned.

 

Lovely...The Americans with Disabilities Act (ADA) prohibits discrimination of employees from superviors or co-workers for medical conditions. If the posibility of improved life comes with pacemaker implant, well as a 10 year PM patient on his second PM...I say go for it! Much better than the alternative...

 

I worked (past tense) for a government agency when I was diagnosed. I was rated "exceptional" and loved my job. I worked in an office. Unfortunately, accomodations mean having access for a handicapped worker, etc. It doesn't require the employer to work around the constant fatigue, napping during worktime, dizzy and bumping into things, SOB that can interfere with even taking a phone call. My story may be different from yours because I have DCM and the symptoms made even a desk job impossible for me. I even got to the point that one day I was afraid to try to drive myself home for fear I would cause an accident. Employers aren't required to accomodate an inability to do your duties. My employer was concerned, as were my doctors that my job was causing my condition to worsen and advised me to take Disability Retirement. It's caused a HUGE financial difficulty, as I've yet to hear from Social Security (applied in Feb 2010). You can only take so many sick days. I was covering sick days with vacation days too. It's also additional stress and pressure to know that you aren't doing your job and you're having to have so much help, whether they are accomodating or not. There are layoffs EVERYWHERE, including government jobs. You always have the fear they are going to "cut the sick one from the herd" when they have budget cuts. While my immediate boss was accomodating, the Agency Head doesn't care, and stictly by the attendance policies and the guidelines, I would have eventually lost the job without the ability to draw even the Disability Retirement and would be in an even worse situation. Also the constant worry when getting up and getting ready took all the steam out of you before getting to work was a constant reminder of what the day ahead held for you. It's a struggle to know what's the right thing to do for you and your family. Every case is not like mine because mine is indeed life threatening so that made my decision easier on that level but it was gut wrenching still. As I type this, I've gotten up, showered and gotten ready. It was a struggle but it's just one of the things that I try to do. Some days I can't and if I add the days I just can't get up and immediately get ready, I know I would have been done for on a job working 5 days a week, driving 25 miles (1 hour) commute each way to and from work. I just got to the point where I knew I couldn't do it. I had a good cry and I'm trying to make the most of it without the job. It's hard but I'm alive and this is giving me the best chance of being alive for longer.

 

I’ve had 3 operations/procedures in 3 years. I try to find something positive after each one.

Number 3 resulted in a pacemaker that I really didn’t want at the time. Number 2 left me with a left quadricep, hip and lower back that can get very painful when I ride a bicycle.

Some people would say “Just don’t ride a bike”. This is not an option for me. I have to warm up slowly but I cycled 102 miles last week. Not very fast but I did it.

The pacemaker is absolutely necessary. It’s taken care of my A-Fib and partial heart block. I can sleep at night now. I don’t know if the left hip pain will ever completely go away but I’m working on it. I’m only 72 so I’ve still got time.

One big factor in my recovery is a boss that is VERY understanding. I work at a bicycle shop 3-5 days a week. Need to go home early today to ride my bike……no problem. Early on I was spending a lot of time at the doctor’s office getting my PM properly set up….no problem.

Bottom line....Think positive.

 

When I see people that can cycle AT ALL, it seems unbelievable. I get very frustrated and I'm not afraid to admit, very jealous. I was healthy, active and could do anything physical that someone half my age was doing...That was before DCM. With my diagnosis, that's just not possible. I've said before that we all have a different diagnosis with different. One answer doesn't fit everyone's problems. I can't tolerate ANY exercise other than walking on flat surface. I thought that advice just wasn't acceptable. Pushing through the pain, tried ignoring the doctor's advice to not push my body and it got me in worse condition. Not riding a bike would be easy for me because it would be life threatening. Talk to the doctor about your diagnosis and what is safe for you. If they give you an okay to exercise and tell you what is safe, follow their orders. Sometimes you have to make changes in your lifestyle. Sometimes you can get back to doing what you did prior to the diagnosis. Sometimes it leads to lifestyle changes. In any of the circumstances, it means we have a chance to live longer and have a better quality of life than without the procedure. You have to be flexible and willing to follow the doctor's advice, take the medications religiously and give your body a chance to recover. The main thing is to find a medical team you trust and to do what the team and your body tell you to do.