TCP Posted March 8, 2014 Report Share Posted March 8, 2014 I had EBV in 1984 and that resulted in ME/CFS. I struggled to work until I was diagnosed with that in 1992. I tried to become self-employed in 2006 but that didn't really take off and then in 2007 I got gradually more ill with nerve damage. I haven't worked since and I get worse each year. Quote Link to comment Share on other sites More sharing options...
Bigskyfam Posted May 28, 2014 Author Report Share Posted May 28, 2014 Up to two and a half days and struggling. Being on my feet constantly has me at a standstill. I do better on days off but when I get up on schedule and get my v8 in first Quote Link to comment Share on other sites More sharing options...
Bigskyfam Posted May 28, 2014 Author Report Share Posted May 28, 2014 Really thinking I need to find a sit down job Quote Link to comment Share on other sites More sharing options...
spinner Posted May 28, 2014 Report Share Posted May 28, 2014 I try to work but 8 hours of stress is too much. I can handle about 6 hours, or 8 hours of "easy" work with no real exertion.Sleep is a huge issue. Go to work tired, leave exhausted and barely able to function. Quote Link to comment Share on other sites More sharing options...
Wmtate Posted May 29, 2014 Report Share Posted May 29, 2014 In December I will be 75 years old and haven't missed a day work since my early 20's except a virus or so. I have both high b/p and L/ p. as low as 56/39 standing to 230/115 sitting. I have been DX over 30 yrs at Vanderbilt, but I have had it over 40 or 50 years. I do have a desk job. I have focused on my work rather than the disease. I figured I would waste a lot of life thinking about the disease rather than looking forward and it has worked for me. I have mostly tried to do without meds but I today have to take one Midodrine a day. I am waiting on Labor Day for the drug Droxidopa to be available . It is quite amazing how the body can compensate without meds but it is not an easy road. I do work out with weights, which is vary hard to do, due to short of energy . I have PAF and I do not believe it varies that much from POTS. Will Quote Link to comment Share on other sites More sharing options...
Bigskyfam Posted May 29, 2014 Author Report Share Posted May 29, 2014 Wow. Positive mental attitude says a lot. I'm happy to hear. I'm hoping to find my niche in the working world. Any other hints, tips are so helpful Quote Link to comment Share on other sites More sharing options...
Appleblossoms Posted May 30, 2014 Report Share Posted May 30, 2014 I was doing very bad while working as a floor RN and in January 2013 I had to drop to an as needed basis which was very, very part time. In August I took more of a "desk job" as a school nurse and I'm able to work full time and I'm doing very well. Quote Link to comment Share on other sites More sharing options...
gjensen Posted May 30, 2014 Report Share Posted May 30, 2014 I want to go back to work. There is no way I could do what I have done. It would be dangerous. Literally. I have applied for SSI, but at the same time, I keep trying to think to what I might be able to do. The truth is, right now, nothing. I would not even be able to get there. I can't drive. I would need to be able to lay down much of the day. The problem is that sitting is as much of a problem as standing. Half of the time even laying down is a problem. I am hopeful. I keep getting spells where I think, "I can do this". Then I descend into a flare where I cannot see straight again. It takes me two and three hours in the morning to level out. I always end up getting into trouble if I try to move around too much too soon. I would do better adapting, if I could level out. I am still ever changing. There is always something new. My hope is that by the end of the summer, I will be stable enough to figure something out. Quote Link to comment Share on other sites More sharing options...
TCP Posted May 30, 2014 Report Share Posted May 30, 2014 I think it goes to prove that any health problem can effect people differently. Some people may have a condition mild enough that they can still work, do housework and socialise and others at the extreme end of the scale are house or bed-bound and are having so many problems and complications that they can do very little. Over the past 30 years I have been to both extremes and in between. I think if you have the one health issue and it's not too bad you may be able to live a reasonably good life and work. Many of us may find that this is the case but for many others it's not. I don't dwell on the health issues I have and keep my mind occupied and I am very pro-active within the constraints of the UK health system to find the best things that I can do to improve my health. I practice mindfulness techniques and doing as much as I can to live a fulfilling life as possible. gjensen ~ I fully understand where you are coming from and I wish you well Quote Link to comment Share on other sites More sharing options...
gjensen Posted May 30, 2014 Report Share Posted May 30, 2014 TCP, I wish you well also. Thank You. Quote Link to comment Share on other sites More sharing options...
Mermaid Posted May 31, 2014 Report Share Posted May 31, 2014 I am lucky to be able to work from home, no standing involved just sitting at a computer. As long as I take breaks to move about and am able to keep myself and the room at the right temperature, I can do 5-7 hours a day, but I don't do it every day. It's freelance and so I need to take the work when it's there and there are deadlines. I get blood pooling sitting feet down and so have them up under the desk. So far I haven't noticed any brain fog, other than general forgetfulness, where I've put things etc which I think I had anyway. I would struggle to do an outside job, unless desk -based and in a temperature controlled, by me, environment. Working also helps to keep my mind occupied, which as TCP says is important, otherwise I'm not so good at focusing on the positive (something I need to work on). I've always worked and so I'm really glad I can continue as we need the income to pay mortgage and so on... I realise I am fortunate in being able to do a job that can be done from home. Quote Link to comment Share on other sites More sharing options...
Bigskyfam Posted January 25, 2015 Author Report Share Posted January 25, 2015 So after much thought... I switched to a desk job 4 days a week in August. Overall it's been good. I feel more awake and productive at work. On the flip side... I've experience more flares overall and my coworkers are getting frustrated, family too yet they understand. I've missed a handful of days since Aug which I felt was fantastic given the fact that last year I was bedbound and that I'm not on meds. With the exception of iv fluids if needed, multivitamin and vit d for deficiency. I do need this job for income and healthcare benefits. Looking to doc for recommendations for work. Have any of your docs written recommendations for work in regards to accommodations??? Quote Link to comment Share on other sites More sharing options...
Goschi Posted January 25, 2015 Report Share Posted January 25, 2015 I will start to work part time (25 hours/week) again on March 1st. I am very optimistic that I can handle it - I try to "simulate" the process right now. Every day I leave my home and travel by public Transport for 20 min. (that will be the travel time to my office) then I get back home and "work" for 5 hours on my computer. Finally I leave home again and go again for 20 min. by underground, just to go home again finally.Up to now, this artifical rhythm works quite well. I am not totally symptom-free all the time, but things are manageable. I am looking forward to the 1st of March - hopefully the start of my new life! If things turn out well, I will go on full time work as soon as possible. Quote Link to comment Share on other sites More sharing options...
Bigskyfam Posted January 26, 2015 Author Report Share Posted January 26, 2015 Good luck to you!!! Keep us posted. What kind of work do you do? Quote Link to comment Share on other sites More sharing options...
Goschi Posted January 26, 2015 Report Share Posted January 26, 2015 Thanks, Bigskyfam! ;-))I worked as a managing director in a local adult education center from 2002-2013 in one of my cities districts. Now I will change to the central administration of the whole organisation. Quote Link to comment Share on other sites More sharing options...
Bigskyfam Posted January 28, 2015 Author Report Share Posted January 28, 2015 Go get em!!! That's exciting! I lasted my shift at work today...by lasted I mean that I made it to the bathroom to get sick and didn't pipe off to my coworker when she said you shouldn't have nausea with your tachycardic illness. Ding ding. Ready for round three tomorrow I hope Quote Link to comment Share on other sites More sharing options...
HawaiianPunchz Posted February 15, 2015 Report Share Posted February 15, 2015 I worked at a place called pump it up, where I had to basically host a party of around 20-40 kids, and play with them in those blowup jump houses. To put it simple, it was terrible. When I over exerted myself, I had these massive headaches, and pain in my temples. I was always out of breath, sweating, and dizzy. I took it easy on some days, and just leaned against one of the houses instead of engaging with the kids (which I was supposed to do.) Quote Link to comment Share on other sites More sharing options...
Bigskyfam Posted February 15, 2015 Author Report Share Posted February 15, 2015 I've been to one of those before. Kids had a blast. I can imagine the effect on your autonomic system. Are you working now? Quote Link to comment Share on other sites More sharing options...
jesse1919 Posted February 16, 2015 Report Share Posted February 16, 2015 H.P. That sounds just terrible. I've had POTS 10 years. I'm an engineer. Mostly desk job with some travel. At first I was out of work 3 months on SDI and 3 months more part time. It was so hard to go back full time until I started Midodrine. Unfortunately it doesn't help as much anymore. I spend all my energy working. Usually 45+ hours. It's often stressful. Never enough people to meet the schedule they want. I don't do much on the weekend except sleep 12 hours a day and sit in front of the computer. But at least I can keep my career and finances on track. I wish I could a better work/ life balance though. Quote Link to comment Share on other sites More sharing options...
shelby_725 Posted February 16, 2015 Report Share Posted February 16, 2015 I work part time, tried many times to do something full time and my body can't take it. Quote Link to comment Share on other sites More sharing options...
Bigskyfam Posted February 16, 2015 Author Report Share Posted February 16, 2015 I understand! I can usually do a solid 3 days a week. While I get my work done in 3/5 days... My absences are frowned upon... Even with a doctors note. Quote Link to comment Share on other sites More sharing options...
Bambamjr2013 Posted February 16, 2015 Report Share Posted February 16, 2015 Thank God my job asked for Voluntary layoff for 3 months. It's so hard dealing with this Syndrome and trying to keep up at work at the same time. God bless all that have to do it full time. Quote Link to comment Share on other sites More sharing options...
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