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Is Anyone Working?


Bigskyfam
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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.

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  • 2 months later...
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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.

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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

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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.

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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 :)

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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.

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  • 7 months later...

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???

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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.

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  • 3 weeks later...

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.)

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H.P. That sounds just terrible. :wacko:

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.

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