Anxious About Working Again

[iheartcats]

For those that can/do work on here...(no offense to those who cannot...we're all at different stages!)

How do you manage? Are there some tips you can share?

I am still dealing with POTS symptoms, but I am probably feeling 50-60% better from when I was diagnosed two years ago. That is better than nothing.

At this point I know that I will be giving up a lot of energy to do stuff I 'want,' weekends will be for recovery/home-related things/resting, and I'll have to deal with telling co-workers why I don't go for happy hour very much when the time comes for that conversation.

I am very anxious though. More than I've been about anything in a long while. I suppose that's normal. And I am afraid of 'failing.' I did talk to my doctor about this and was told I won't know until I try, we'll have to see. Fair enough, I suppose?

I tell myself it's not flu season right now, I have to try or I will never know, and I just need to do this right now. That isn't calming my emotions too much, but I'm trying to stay positive. I haven't work in almost a year now. So it is a big step.

Thanks for any help.

[ByteMe58]

I'm curious myself. Out of work for 6 months now at 51 years old.

I have progressed to where I can be out of bed for up to 15-20 minutes max. Sometimes only 2 minutes before major blood pooling knocks me down.

Still bedridden the rest of the day (or fully reclined laz-y-boy)

Reclining wheel chair for waiting in doctors office.

No shopping, running to the store, or trip to the park for me. And definitely no driving.

How do you work like this? Social Security starts next month for me.

Frank

[nforste]

Hi Cat lady,

I'm sorry I'm not sure I have any tips beyond what you would know already, but I am in a similar situation!! Gave up work about 12 months ago to focus on improving my health and am about to head back into full time. Luckily, it's a research position which will allow me a certain degree of flexibility in organising my day and time management and communicating with people.

My plan for coping is to take lots of 'walky' and stretch breaks, avoid fluorescent lights where I can, not look at the computer screen the whole time, the usual water and diet thing, moderate exercise etc.

I'm pretty worried about having a relapse and also not being able to cope with the work because of fatigue/brain fog. My boss said otherwise, but I know my work suffered because of this when I first got sick. The other thing is that I don't want people to identify me as being sick or think that I'm being unsocial because I can't go out for drinks and all that. Might just go and have juice or tea when it comes up. I'm pretty nervous about the whole thing (also moving town and back out of parents place) so there's a bit going on. I think the longer I wait though, the more I'll doubt myself when the time comes so just trying to do relaxation exercises to cope with the extra nerves. And I know that I managed to push on at work for 8 (??) months when I was feeling a lot worse, so I think if I'm careful I can do this without going backwards. So.... we'll never know if we don't try hey?

Let us know how you go!!

[lauralulu]

Good luck to you Cat Lady and Sunburnt Land!! I think that's great you feel in a position to at least give it a try! Don't see it as a failure if you can't, just as you finding out what you are and are not capable of. You never know, you might surprise yourself! And if not, well there's no shame in that, at least you gave it your best shot!

I've never worked full time myself so have no idea if I'd be able to, but when I am done with night school (getting a childcare qualification) I'd like to get a part time job for 3 days a week, and work from home at something else the other two.

Keep us posted how you get on- I'll be keeping my fingers crossed for you and praying for a positive result for you both (and anyone else in the same boat!) xx

[Simmy]

For the first three or four months of my illness I couldn?t get out of bed much so I didn?t work at all. For the last 18 months or so, I?ve managed to put in a total of about 200 hours (out of about 3,000 hours available). I?m lucky in that my boss has allowed me to come to work whenever I feel well enough to try. I install security systems and the work is very similar to that of a construction worker, but my boss was kind enough to assign the lightest work to only me, like sitting in one spot and hooking up wires to control panels, but even that wipes me out after only an hour or two and I become too dizzy to even sit. On most days, however, I don?t feel well enough to even attempt the drive.

I finally applied for Social Security Disability Insurance last week and am hoping to get an answer within a few months.

Cat Lady ? I imagine it would make things easier on you if your co-workers knew what you suffer from and were able to recognize your symptoms, but I don?t know if you want that information revealed. That?s a tough one. Good luck. I hope it goes well.

Frank ? When I do attempt to drive to work I always start out with a quick thought?

?It?s 103 miles to the job site, I got a full bottle of Gatorade, it?s dark, and I?m wearing compression hose.? Then I hit it

[iheartcats]

I really think I have to keep telling myself "I won't know unless I try."

Like Sunburnt - I pushed through a good six months worse than I am now! It wasn't pleasant, but I made it. So now I know more of what I am dealing with, signs to watch for, what helps, etc. I think I do not take enough stretches/things to try to get my blood circulating so I'll make a daily calendar to remind myself if I must! Sometimes you just don't feel like moving around, but nine times out of ten it does help in the long run for me while working.

I, of course like everyone, don't want a bad relapse whether I am working, not working, whatever. So I just keep hope I am going to get better rather than the other way around. You can't live life without hope, in my opinion, so I will go in with a positive outlook!

Thank you everyone. It's just nice to know there are others who at least UNDERSTAND what is going on. And if it gets to a situation at work (about not going out for drinks/evening 'outings' etc) I'll have to decide if I want to be up front or just say it's a family/personal obligation and I have to be home in the evenings if I am not working...I of course don't want to sound rude, but everyone has their personal situation to deal with, right?

[lieze]

I am still struggling with how much I can work. If all I did was work and come home I'd be okay but my parents then have expectations of what my house should look like and I was already making myself sick trying to keep up with it all prepots.

My kids scatter things everywhere. I did get one of those grippers so I don't have to bend down every 5 minutes but even being home my housecleaning leaves a bit to be desired it's just a lot to keep up with.

Right now it's just every other weekend and I do okay with that 6 hour shifts. I am ready to leave after the 6 hours because I am on my feet and running a lot of that time.

I usually get very nervous the day before wondering how I'll do.

I think a lot of our problem is confidence. It's just not there. We have hopes. Our minds still work like they used to most of the times our bodies just don't. So it's difficult to find the balance in that.

I am going to stick with the every other weekend for now and just the call in-if I want to feel up to going when they call I will. Thinking about being on a schedule makes me a nervous wreck. I can't believe how stressed I get just thinking about activity yet when I did it all the time it was a no brainer.

I also worked into my symptoms for the first 9 months. Took a little time off in there for the ablation but most days even if I felt crappy I made it through. Just be sure to pace yourself and get plenty of sleep and give us updates we can't wait to hear how you do.

lieze

[Chaos]

Cat Lady,

You're not alone, that's for sure. I just started back to work but on a very limited basis. Only working 4-5 hours a day with a modified duty schedule, 2-3 days per week, and on a basis where they call me in the morning to see if I can help that day. I'm pretty tired when I get done and don't have a lot of energy to do much else but it's nice to be able to work at least that much. Some days, as you know, have been better than others. On the not so good days, my co-workers were the ones saying "you don't look like you should be here today." It was really nice to have their support in that way. Since they knew I'd been gone for so long, they knew a bit about what had been going on.

I certainly understand your fear of failing! I was so torn with wanting to go back, but trying to listen to my body. It's hard to balance the ego with the reality of what your body can do. When I was feeling 50% better, I thought I was ready to go back, but when I was honest with myself, I knew there was NO way I could do a good job and not throw myself right back into a flare. And more than anything, I didn't want to go back and then have to stop again! I started back when I felt about 80% better several days a week. Only worked a total of 6 days since then because my daughter had surgery and has had complications so haven't had the energy to do anything but take care of her the past 2 weeks.

Not sure what kind of job you have. Mine requires me to be walking a lot (which for me is a lot better than standing.) Hope you are successful in getting back into it. Hopefully you have supportive co-workers and can do something that accomodates your limitations. It's funny that I've always said having a desk job would be "my nightmare" job but for the past many months, I was thinking it sounded like heaven! Good Luck and do be kind to yourself!!!

[summer]

I really think I have to keep telling myself "I won't know unless I try."

I went through all this about a year ago. I had been away from work for almost 2 years and felt that I had improved but not sure if I had improved enough to work again. I was also feeling a lot of guilt about not working and not contributing financially to our family. I also decided "I won't know unless I try". So I did try.

I arranged to have a modified schedule and modified duties and began working. I was not able to do it. I tried for 4 months and by the end of that, I knew that I really was not ready. I am not at all sorry that I tried even though I was not able to do it. At least then I knew I could not. I'm sure I will try again at some point, but I know now that just because I'm doing better at home, where I can totally control what I am doing, pace myself, put things off until I have more energy, etc. does not mean that I can handle the demands of my job where I can not do any of those things.

You're right. You probably won't know until you try, and even if it turns out that you can't, at least you'll know!

Good luck!

Summer

[potsgirl]

Love that last line!

[ArmyMom46]

I've been fortunate in that, except with the first crash that brought on the diagnosis, I am able to work full-time. I work for DHS doing Food Assistance and Medicaid. At my last visit, my electrophysiologist prescribed a mobility scooter for when I want to go out - but not a work yet, changed my meds, and suggested that I no longer use a desk chair. I also have a wheelchair for those times my husband and I don't want to mess with the scooter. Instead of a desk chair, I use a large exercise ball as my chair. This way I have more movement and not as much blood pooling. Fortunately, I don't have to walk much for work. And I've told my teammates about my POTS. They wanted to know if they would need to call 9-1-1, so I told them "If I'm face down, call 9-1-1-. If I'm on my back, don't worry about it -- I put myself there." My teammates are good at noticing when I am in brain fog, lightheaded, etc., and taking care of me when I try to do too much. I miss work occasionly, or have to go home early, because of a POTS episode, but I miss less work than most of my co-workers who are "normal." Of course, the weekend is "crash" time. I rarely do any of the work around the house, because I conserve my strength so I can continue to work.

[janiedelite]

I worked full-time as an RN for 8 months after I came down with POTS. Interestingly, I left my job because of a hip injury from a car accident (had 2 surgeries). But I'm now disabled solely because of POTS. Still, I always have wanted to go back to work simply because I really enjoyed my job, and because there are a certain amount of hours I'm required to work every 5 years in order to keep my license.

I've been volunteering at my husband's school and now am able to go two afternoons a week. I feel like I am making some progress in managing my symptoms through medications and lifestyle. So I called my long-term disability insurer and asked about trying to work again in small increments (4 hour shifts just a few days a week). My insurance rep was encouraging and said she'd have their vocational dept call me. Well, that was over 3 weeks ago now. Maybe I scared them off when I said I needed a low-stress job in a cool environment, I need to be pretty sedentary and need to elevate my feet often...

It's fine that they didn't call me back... just the thought of working again put me into a mild flare! Still, what does it hurt to try?