gjensen Posted November 29, 2013 Report Share Posted November 29, 2013 I cannot see getting back to work doing what I have done. It is too physically and mentally demanding. The problem is that it is all I know. I hate the idea of disability. I need to be making some kind of progress, and progress requires money. I do not know how I will adapt to this. Other than family concerns, I have the most trouble adapting to not being able to do. This is becoming a lesson in taking things day by day, and not looking too far ahead. Being a man, I am struggling with the humility that comes with being weak. I was considering going to school online, but for what? Who knows? It is hard to picture what I will be able to do a few years from now. Would hate to waste a lot of money that I do not have. Quote Link to comment Share on other sites More sharing options...
Bigskyfam Posted November 29, 2013 Author Report Share Posted November 29, 2013 Understand! I dropped my classes. One was online and I still hit snags. I wanted to be a teacher... I work in the medical field. Go figure, right? I want to give it a go...so many variables. I have kiddos and I feel if I give 100% to something I want it to be for them. Trying to think realistically. Quote Link to comment Share on other sites More sharing options...
lulusoccer Posted December 1, 2013 Report Share Posted December 1, 2013 I am working full time as a registered nurse. I work 8 hr evening shifts (I'm the most symptomatic in the AM). So it works out well for me. I actually find that the movement from working really helps me a lot. It keeps my BP up. If I work out, I do so after work as well - I feel almost normal in the evening. Of course there are days where I am more symptomatic. For instance today my HR was 147 rising this morning, and 120-130 almost all morning and even into the beginning of my shift it was 120's. Although I think I've just gotten used to the elevated HR because I have had it for ~ 8 years and it doesn't really bother me other than I am more tired and I had a headache earlier today. Honestly, my days off work are the days that I tend to feel the worst because I'm not always moving as much or I am moving too much (aka..cleaning!) and then I end up having to take multiple naps during the day..which is like a vicious cycle because I always feel worse after napping (initially until I'm up and moving again lol). I would say, if you can work, go for it! It makes me feel "almost" normal! However, I also don't have kids or any other responsibilities so this makes it very easy for me in the mornings if I need to take a nap or something before work I am able to. I think it would be harder to manage a family and work at the same time. Quote Link to comment Share on other sites More sharing options...
Bigskyfam Posted February 7, 2014 Author Report Share Posted February 7, 2014 Bump Quote Link to comment Share on other sites More sharing options...
gjensen Posted February 7, 2014 Report Share Posted February 7, 2014 Trying to get there. I have one point to get a grip on in order to work. Might not be able to do what I was before, but I could try to learn something new. Quote Link to comment Share on other sites More sharing options...
srb Posted February 7, 2014 Report Share Posted February 7, 2014 Hi, I'm coming to this conversation late after the bump. I work part time, 3 shifts a week normally. I also have two toddlers. We do need my income. Overall, I feel that it is a good thing, but some days are hard. I work as an adjunct reference instruction librarian at a college, so my work environment can be very different depending on the day. Sometimes I am sitting a desk a lot, sometimes I am teaching in a classroom, sometimes I am getting up and down repeatedly.Yesterday was one of my hardest days since my generic diagnosis. I have been sick for the past two weeks and I guess it messed up all the lifestyle things I had been doing to manage the dysautonomia. I ended up having to explain or partially explain my issue with several co-workers and it was kind of tough for me to do. I feel embarrassed. And one person interrupted me right away and asked if it was anxiety :-( Aargh, that was tough to swallow. But my boss has been quite supportive after just telling him recently and I tried to focus on how strong I was to work my whole shift - including teaching a class - yesterday while feeling nauseous and lightheaded and out of breath.Anyone have tips on what to say to people who are dismissive, like the anxiety comment? Afterward, I just wished I would have said something... hard to think fast when one's head is pounding! Quote Link to comment Share on other sites More sharing options...
Bigskyfam Posted February 8, 2014 Author Report Share Posted February 8, 2014 I went into work today. Trying to do 2 days a week modified... Sitting as much as I can for a docs ofc. My ofc mgr asked me today... How much longer will you need this schedule? When do you expect to be better? We need more reliabity. Quote Link to comment Share on other sites More sharing options...
lynnie22 Posted February 8, 2014 Report Share Posted February 8, 2014 Ugh that's a tough one. You can't help it. It sounds like you're doing the best you can. Is there a way you can explain this to her, your condition? I think there must be some sort of disability protection for people who are genuinely sick.I know I have to work, there's no one else. I work for myself, and I sit seeing clients. I cancel sometimes because my blood pressure changes, and sometimes I feel so dizzy. I take alittle propanalol in the AM which helps with the HR, and depending on my blood pressure later in the day, I take a little more. I don't work like I used to and I end my day early. In the evening my blood pressure usually sinks and I feel worse. Other people have it the opposite. I struggle with it each day. There are bad days and better days. I've been put on an exercise protocol -- and from what I've heard, I should be wearing compression stockings. I'm exhausted most of the time but try to get enough sleep. That's really important for me, but lately, with worry, I toss and turn and don't sleep well. Sometimes I would love to not work, to take a rest, but I don't feel I have a choice. Quote Link to comment Share on other sites More sharing options...
Bigskyfam Posted February 8, 2014 Author Report Share Posted February 8, 2014 I'm not on meds, but feel like you do. Changes daily/ hourly. I left early tues because I started going tachy and had flushing ,I left before tremors hit. I exercise 3 times a week 20 minutes. Wear compression stocking if I'm up continuously, fluids and elevated bed. I think if most folks went to dinet site and forum they'd be different Quote Link to comment Share on other sites More sharing options...
pink1975 Posted February 8, 2014 Report Share Posted February 8, 2014 I work full time and go to school full time. Before my diagnosis two years ago I called in sick or left early so many times I was close to losing my job. But I made it, lol. I was going to school full time then and managed to finish my bachelors degree. Now I am just 5 months from my masters. I have a super supportive company, my previous boss drove me to emergency four times in one year, called for care for my 3 kids and stayed with me until my husband arrived. I realize that is unusual and I am very lucky. I also have a desk job as a graphic designer and my own office so if I need to lie down, put my feet up, whatever it is not frowned upon. I also take classes online only. I know that I could not manage to take campus classes since after I get home from work I am so exhausted and need to lie down. One of my most major challenges with working is the morning commute. I am at my worst in the morning and struggle to drive the ten minutes needed to get to work. Once there, I am pretty much useless for an hour or even two and have to do simple stuff like checking email. Quote Link to comment Share on other sites More sharing options...
Alison Posted February 8, 2014 Report Share Posted February 8, 2014 I have been working part time up to now, and looking after my three kids. When I was diagnosed in December I decided to stop working for a while in the hope that it might help to make me better - my husband works long hours so I find that I am generally on the go all the time and don't usually stop to chill out until about 9.30pm. I'm stopping work next week. One reason I decided to stop is that each year I have been feeling slightly worse than the last, I was worried where it was going to lead if I didn't. If I don't feel any better I will go back to work.Pink - that sounds like a really full on life. Quote Link to comment Share on other sites More sharing options...
Bigskyfam Posted February 9, 2014 Author Report Share Posted February 9, 2014 Thanks pink and Allison! I think a desk job might be up my alley. Are either of you on meds? I have kids as well. Some are starting to drive but we don't have cars got them. I can't imagine going through this with little ones. My little guy is in first grade. I guess I will know when I know about work and school. I have a hard time following my gut nowadays. I've always been a go getter and organized and decision maker. I hope that'll return a bit in time Quote Link to comment Share on other sites More sharing options...
brethor9 Posted February 10, 2014 Report Share Posted February 10, 2014 I would love to go back to work. I miss the independence...had to finally stop in 2011 after struggling with severe symptoms for 5 years. I have other co-morbid illness ie mast cell and EDS so I fear my days of working a normal job may be over I think if I just had POTS to deal with I could have found a way to manage .... since I had worked in the medical field for many years I decided to take transcription to try and work from home ...... I am not letting this illness win Quote Link to comment Share on other sites More sharing options...
Bigskyfam Posted February 10, 2014 Author Report Share Posted February 10, 2014 I work in the medical field also... But back office on my feet. New territory for me and my employer. Glad to hear you are Fighting Quote Link to comment Share on other sites More sharing options...
gjensen Posted February 11, 2014 Report Share Posted February 11, 2014 brethor9, I hope that works for you. I keep reading this thread because it is a big deal to me. I really want to get moving better. I do not think that I am so bad that this cannot be managed enough to get me functional. I am having a hard time picturing me returning back to what I was doing, but who knows. I would like to. I promise that I will never complain about work again. LOL. The president of the company came to see me. He was asking if I thought I could get back to work. I tld him that I was having a hard time picturing climbing 30'-40' on latters etc. Heck I have a hard time picturing a lot that we do. His response was that they did not need me to, that all I had to do was supervise. You know that is easy to say, but if you want to know what the mason is doing, you have to climb up the scaffolding to see. You can't wait till the scaffolding is coming down to see if you have a hundred thousand dollar problem lol. But . . what I took out of the talk was that they would support me. I could get an assistant. The hours are long. Everyone would feel sorry for me now, but let the project get behind schedule or budget. The commutes are far. Right now I cannot drive more than ten miles, and I cannot make it through Wal-Mart. I am going to have start pushing for the next experimental treatment. LOL. I get real bad off, but right now I am not. I can tolerate the high HRs etc. Quote Link to comment Share on other sites More sharing options...
Bigskyfam Posted February 11, 2014 Author Report Share Posted February 11, 2014 How long can you tolerate the high heart rates and at what cost? This has been asked of me and it's reply is.... Noone knows. But I hang on to the simple fact that we don't know, but it might not be bad. I empathize with you. My employer at this point has made exceptions for me with days worked and that I can sit when needed. I think I need to sit more... Most of my shift. I can't in my job description. I hope my employer can start to help me troubleshoot. We can only go up from here. Pun intended Quote Link to comment Share on other sites More sharing options...
leydengs Posted February 12, 2014 Report Share Posted February 12, 2014 I work as a computer programmer so there isn't much movement which I'm not sure if that really helps because my legs just ache all day long but my work is awesome and very understanding and they let me work from home on days I'm struggling. I'm not sure how people work jobs where they are on their feet all day with POTS!! Quote Link to comment Share on other sites More sharing options...
Bigskyfam Posted February 14, 2014 Author Report Share Posted February 14, 2014 That's awesome! I was at work day 2 this week. It's amazing the little things I've found that help and hurt at work!!!! Fluorescent lighting, not cool. A stool at my computer station... Just right. Quote Link to comment Share on other sites More sharing options...
Lethargic Smiles Posted February 14, 2014 Report Share Posted February 14, 2014 I just wanted to share my story with you which is, I pushed and pushed for a long time, but eventually my body collapsed and I still haven't gotten back to work.I became sick at 18, during my freshman year of college after a bout of mono. I didn't know it then, but I had EDS predisposing me to POTS. I never thought of the tachycardia as a symptom, so I never mentioned it since the doctors didn't mention it being abnormally high, even resting, so I wasn't diagnosed until I was nearly 23. Prior to that, the diagnosis was CFS and/or psychosomatic which lead me to just keep pushing myself. I remember feeling dizzy, I remember sneaking little blocks of 5 minutes, laying outside lecture halls. It was an actual campus, so I was walking/biking to class. I always had fevers (now they hold off until the evening usually). I relied on caffeine pills and pain medications. I took 18 hours of classes, was a teaching assistant, volunteered and trained others on a crisis hotline, worked 10-15 hours a week, and interned. That is so much, but I really felt nothing should hold me back since "nothing was wrong with me". One doctor always told me to do less, rest more, maybe take a semester off, but I refused.I graduated and got a dream job that was accommodating with my mysterious illness. I loved my job, and I worked so hard to not let my illness take it away from me. On my lunch breaks, I just laid on my office floor with the lights out. My employers were okay with it when I had to go down from 40 to 30 hours. They were okay with my doing several work hours from in the comfort in my bed. However, eventually I just collapsed and it was clear I had to quit. My body was forcing me to take care of myself. In the same week, a doctor finally asked about my tachycardia, I remembered by sister had POTS as a teenager, and we got me diagnosed. The lymph node swelling and fever are both still a mystery.A few months after my total collapse, I was hospitalized for a week and I've been working my way out of that whole for a year and a half now. I've come far and put the effort I put into work into figuring out answers for myself, but I always think, maybe if I had done a little less pushing, I wouldn't have driven myself into such a health crisis. Maybe I could have cruised along.My point: People act like "pushing" is always a good thing. I think sometimes it is, but you need to know yourself. Are you someone who is always pushing yourself and, if you push yourself harder, you'll wind up like me? Or are you someone who tends to err on the side of caution, and could use a shove? Everyone is different so just be sure not to be harsh on yourself.I finally have given in and applied for social security disability with the intent to go all the way to court if needed. I applied shortly after quitting my job, but when they denied me, decided I'd just get better instead of bothering with them. Now, a year later, I realize I need to get the ball rolling. I have a lawyer doing all the work for me. I didn't like the idea of a lawyer at first because they get such a large chunk of the back pay, but then I realized 75% of something is more than 100% of nothing. Quote Link to comment Share on other sites More sharing options...
Lethargic Smiles Posted February 14, 2014 Report Share Posted February 14, 2014 That's awesome! I was at work day 2 this week. It's amazing the little things I've found that help and hurt at work!!!! Fluorescent lighting, not cool. A stool at my computer station... Just right.Yay for a stool at your computer station! Maybe eventually you can even get a chair with a back -- you'll think you're in heaven. I always had my feet propped up on a garbage can under my desk (or crossed in my chair). Quote Link to comment Share on other sites More sharing options...
LastUnicornLady Posted February 14, 2014 Report Share Posted February 14, 2014 I used to work as a nanny for a child one day a week. Every Thursday I would watch a three year-old from about 9:30 am until sometime after 6 or 7 pm.Once I started dealing with this POTS thing, I started having to slowly let go of the job, in spite of the fact that it was my main source of income. I only go over every-other week, and can't really do the full workday anymore. I typically go over now at about 11 am, and leave at about the same time I was before. Even at that, I often can't go over, simply because I'm too sick and know that I wouldn't have been much use. It's frustrating not being able to control my own body, and I really do push myself, but when you can hardly support your own weight, you know you're not really ready to deal with a pre-school age boy... Quote Link to comment Share on other sites More sharing options...
Bigskyfam Posted February 14, 2014 Author Report Share Posted February 14, 2014 Jackie... Thank you! I read every word and felt in your shoes. Why is it that we are overachievers who put ourselves last? I'm pacing myself. Staying at 2 days a week. During my cycle I can't work at all. I'm 35 and have two girls 18,16. Scary to think my oldest may develop pots while in college a state away. I wish you well with disability. I can't imagine the process while not feeling well. My docs/ employers haven't even uttered the thought of it. Still a fairly new diagnosis for me. I crashed in October. But feel like you it had been building slowly for years. I Appreciate your thoughts Quote Link to comment Share on other sites More sharing options...
Bigskyfam Posted February 14, 2014 Author Report Share Posted February 14, 2014 Last unicorn... Boys will take every last drop of energy from you! My 6 year old is good at that My friend across the country has pots. She's always thinking what can I do to make money from home. I think even jobs at home are just as difficult.. Even though they save a drive. Thanks for sharing. Hoping better days Quote Link to comment Share on other sites More sharing options...
TCP Posted February 14, 2014 Report Share Posted February 14, 2014 I had ME/CFS from 1984 and struggled to work until 1991 (off and and on). I haven't worked outside the home since then. I have been self-employed off and on for 7-8 years. The nerve damage became more pronounced in 2007 and I have gradually worsened since then. I would love to work but I have nerve damage all over my body. I can't walk far without the use of a stick and holding onto someone. I have a full-time carer. Quote Link to comment Share on other sites More sharing options...
Bigskyfam Posted March 6, 2014 Author Report Share Posted March 6, 2014 Thanks guys for sharing. It seems adaptation is the key here. The new norm. I've had a better time figuring that out personally as opposed to professionally as my family has seen my bad flares and fog. Up to 2 days a week on good weeks Quote Link to comment Share on other sites More sharing options...
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