Work - Am I Just A Wimp?

[deucykub]

Hi everyone. I was diagnosed with POTS a little over a month ago and am new to this forum. My main symptoms are extreme fatigue, exercise intolerance, shortness of breath with any exertion, tachycardia, blood pooling (legs, feet, and hands turn purple), and cyanosis of the nail beds and lips. I have no idea how long I have had POTS. I have been blacking out since I was 10 (now 32), which they tell me is actually pre-syncope, and also was diagnosed with asthma in 2005 and fibromyalgia in 1992.

Two years ago I switched from a private industry job to a federal position because the regular hours were better for dealing with fibromyalgia. That way I could work *just* a 40 hour week and still excel in my field. In July of this year, when I was getting really sick, I begged my boss for an accommodation of a very flexible schedule that would allow me to put in 80 hours each two-weeks without a strict requirement for x hours per day and to be allowed to telework when I wasn't well enough to come in to the office - all within normal office policy.

Based on a doctor's note, they let me telework all but one day, when I have to be in the office. With this schedule, I've lost thousands of dollars in unpaid leave. I rarely can get into the office, so that day is always shot, and the number of hours I can work (even from home) in a day always varies, so that's more hours lost. My accommodation request is now at the appeal level (after three denials from my boss), and if this is denied, the next step is an EEO complaint. All of this saps what little energy I had in the first place, which makes me less able to do my actual work.

To me, the request seemed reasonable and even beneficial for my employer since I would be available more often. It's been a very bitter battle with my boss - even fabricating stories about my performance and ethics to make me look bad. Am I being unreasonable, expecting too much? I really need a sanity check.

I'm drowning at work - falling so far behind. I love to work; it's my life. I had been the "golden child," always working over and above what was expected, recruited by my boss's boss for special projects. Now, I'm the "problem child," and everyone has turned their back on me. I just don't know what to do. I'm so grateful because at least I still have my job, but I'm resentful, too, because my boss has no empathy at all. I feel like I am fighting this battle all alone. I probably don't have the right to be resentful, but when you are barely making ends meet and someone has the power to help you but refuses, it's hard not to be upset.

Am I just a wimp? I've never considered myself a malingerer. I work through just about anything - colds, flu, pain, you name it - but this mind numbing fatigue is too much sometimes. Do any of you have any strategies for maintaining a normal, predictable schedule? Am I blowing this all out of proportion? I asked my neurologist about work, and she said that POTS doesn't preclude you from working, just some people will work through more than others (some people will stay home if they feel a little sick while others will work through feeling very sick). I've always been the latter, so why can't I get on top of this thing?

Any advice or personal experience you could share would be so very helpful. I'm feeling pretty lost right now. Also, I've read those that have POTS without a known trigger are less likely to recover than those that develop it after an viral or bacterial infection. Is that true? I don't even know which category I'm in! I guess I need some solid footing to be able to fight this effectively.

Thank you, thank you, thank you for helping.

[MomtoGiuliana]

Hello--glad you found us, but sorry you have POTS.

What treatments are you using? Are you seeing a specialist?

I left work for nearly a year. Fortunately my boss waited for me to come back and they kept me on all benefits until I could return. Now I work part-time, but am now well enough for full-time work.

Recovery is definitely possible and even likely--particularly with proper diagnosis and appropriate treatment.

I don't have any advice for your work situation unfortunately. I am sorry that they are not being accomodating, and even undermining you, especially considering the good work that you do.

Katherine

[deucykub]

Hi, Katherine:

Thank you so much for replying!

I am seeing a specialist who is one of the top four researchers in the country. Mainly, his fellow has worked with me. I saw the specialist for about 5 minutes. They started me on fluids and salt tablets, but the salt tablets didn't go over so well with my body, so I'm just eating lots of salty foods and drinking 64 oz of Gatorade a day. After a couple of weeks of that, they started me on 2.5 mg of Midodrine 1 x day, the next week 2 x a day, and starting today 3 x a day. That's about it besides all the meds I am on for fibro and asthma.

It's so good to hear a success story and how wonderful that your work has helped you out!

Thank you, again,

Deucy

[Aprilmarie52]

I have had to take a few leaves of abescence from my job. I just get so fatigued that my system goes into overdrive and then I get adrenaline surges. Its like having a constant panic attack. Luckily, my dr has filled out the paperwork both times so that I received FMLA benefits. (Not my whole paycheck, but better than nothing). I do not agree with your dr about some people just being able to work through it. Everyones symptoms are different and just because someone else can work, doesnt mean that you can. I hope that you start feeling better soon!

[MomtoGiuliana]

You're welcome. Sounds like you are under excellent care. It can take a LONGGG time to get better and may require trying a variety of treatments to find what works best for you.

I didn't notice the comment your neurologist made about work until I saw April's reply. I agree with April--that was unfortunately an incredibly ignorant response to your question...the level of disability with POTS runs the gamut. Some people absolutely cannot work--as I said I could not for nearly a year. I could barely stand many days during that time, and was so absolutely fatigued and dizzy that I was essentially homebound.

I hope you find a treatment that makes you feel a lot better soon--and that things work out at work for you. Others on this site may have more advice for you on this...

Katherine

[deucykub]

Hi, April:

That's really helpful, thank you. I'm still trying to understand POTS and what symptoms go with it. I've never been particularly healthy, so I get confused thinking okay I'm out of breath (or some other symptom)... which illness is causing this, which doctor does this correspond with... ha!

My body has to pretty much hit me over the head before I'll listen, and boy did it ever do that. Has your treatment been helping you? I hope you are feeling better soon, too!

Hi, Katherine:

I am very fortunate to be near (within two hours of) a good care center, and my other doctor sent me straight there to someone who dealt with POTS every day. I couldn't figure out what the doctor was trying to communicate about work, but it certainly left me baffled. She was a very kind and attentive doctor, so maybe we just got our wires crossed.

I know I could work if my office could just give a little, but this constant fight can't be making my health any better. Unfortunately, my husband left his job last year to pursue a new career in academia, which is like starting from scratch. My salary is the key to our survival. Otherwise, I would just throw in the towel and take a year off. My boss has the future of me and my husband in her hands, and frankly, I think she likes it.

If I could just find a way to become more consistent, we'd be so much better off.

Thank you again for your replies. It's so thrilling to hear that you are ready to go back to work full time. Best of luck to you when you decide to do so!

Deucy

[Suzanne]

I wish it was a case of just pushing yourself and you could work! I worked for 3 years after diagnosis, but was spiralling downhill, totally exhausted to the point I had to stop in Feb this year. I have always pushed through, to the detriment of my health. I wonder if all that pushing contributes? Now I hope to return next year with a very light load, maybe 4 hours/week to start! I think your boss is unreasonable, can you give him some literature to read? I hope you can sort something out, I understand what it is like to love your work and not want to give it up.

[deucykub]

Hi, Suzanne:

I'm so sorry to hear that you had to stop working, but it sounds like you listened to your body and made a smart decision. Good for you!! I do the same thing - push, push, push, collapse. Even when I am in a good phase, by the end of a working day, I'm ready for bed and sleep. Working from home has been helpful because many days I'll nap during my lunch break, and I'm lying on my loveseat with a laptop all day (helps me keep my feet up). Even then my energy seems to peter out before the end of the working day.

It does seem like the more we push through this the worse we feel, almost a cumulative effect. Before this, I had worked a 4 day/10 hour schedule because then I was pushing through less often, and for a while that helped a bit (but I was reeeaaaally tired when I got home!).

I wish there was a way to help my boss understand, but she doesn't seem to care enough to try. Her focus is "how can you help my career," and if you're not helping, well tough luck!

What strategies did you find were helpful while you were still working?

Thank you so much for the encouraging words. I hope that you find a solution and are feeling ready to attack the world again soon!

[goldicedance]

First, welcome to this great group. You have a lot of friends here.

Have you been tested for LYME disease. Many of the POTS-like symptoms are actually caused by LYME. Given that you live in Connecticut, I strongly urge you to get tested if you have not already done so.

I gather that you are a Federal civil servant. I retired last year after 34 years of work. I finally retired because I was just worn out from POTS as well as GI problems.

I got sick in 1994 and had numerous absences, including several weeks at a time. My manager was very tolerant. By 1998, I just could not commute to work, deal with the heating/cooling problems, and deal with the need to put my feet up or sometimes even recline.

In 1998, I got approval for acccommodation of working at home. I worked at home 3 days a week and came into the office 2 days. I was given (loan) a government computer, giant printer, fax machine and two telephone lines. I felt very lucky. In spite of this accommodation, I was still on leave (sometimes LWOP) to go to doctors' appointments, to completely rest, etc.

I am glad to see that you are now beginning medical treatment. You can see from the numerous posts that we are all on a variety of medications to help control our symptoms. Medications need to be titrated to fit a person's situation.

You are taking Midodrine, I see. Your dosages are pretty low. Many of us take 10 mg of midodrine 3 times a day (when upright). I sometimes upped my morning dosage to 12.5.

There are many other medications that can be added to your regimen--cocktails including beta blockers, mestinon, clonidine, fluorinef, SSRI's, Procrit, etc. Then there are some other things--V-8 juice which is loaded with salt--a good way to start the day; as well as compression stockings.

You are the beginning stages of coping with POTS. Don't give up...there are still many avenues to explore to help you maintain an optimum level of functioning.

Dr. Grubb--a real treasure--has written an article which may prove helpful to you, your doctors, and even your employer.

To Print: Click your browser's PRINT button.

NOTE: To view the article with Web enhancements, go to:

http://www.medscape.com/viewarticle/522421

________________________________________

The Postural Tachycardia Syndrome

A Concise Guide to Diagnosis and Management

Finally, if you would like a copy of my doctor's letter which served as the basis for accommodating my work at home schedule, please send me a message.

Good luck. Have strength and courage!!! Don't be impatient (easy for me to say, but difficult to do in practice)--treatment regimens are constantly evolving--both on an individual and research basis.

Lois

[pamyla]

Hi Deucy, welcome to the forum Sorry to hear you have been having issues with work - pots is hard enough I'm about the same age as you, but was diagnosed with pots 8 or 9 years ago (wow time flies!) When I was first diagnosed I fought really hard to keep my job, but only succeeded for a few months before I had to give it up. This was really tough at the time, as I felt like I was giving up my independence and wondered if I'd ever be able to come back. I was out of work completely for about a year and then I started back part-time, eventually going back to full time. During my break, I not only switched jobs, but switched careers - which was a good thing. I've luckily been able to work full-time for the last 5 or 6 years now.

For me, I needed to give it up for awhile and just rest. I'm not very good about that - I was your typical overachiever so I felt like I always had to be doing something. But the rest was exactly what I needed in order to get better. While I still have issues, I am a lot more functional than I was at the beginning - so don't give up hope - it definitely can get better!

That sounds like a big headache that your boss is not being supportive. And, as my husband just started back to school, I understand what it's like to be the breadwinner. That's a lot of pressure when you're not feeling well....

Don't know if this is possible in your situation, but have you looked into FMLA? I'm unsure of the specifics, but doesn't it allow you to take up to 3 months off, with your job being held for you? Another thought, have you spoken with an EAP counselor - maybe they would have some good advice.

I hope your health and work situation get better for you.

Pam

[deucykub]

Hi, everyone. I'm having a rougher day today, but I wanted you all to know how much I appreciate your responses and advice. Even moreso, I am so grateful for the support given on this forum. Wow, I am really almost in tears. When I am feeling a little better, I will respond directly to your posts.

Thank you so much!!!

[chocolategirl]

Hi Deucy! I've been reading this forum off and on for the last couple of years but am a newbie at posting and participating. Reading about the experiences and treatment of others has helped me over the last couple of years and I decided I needed to join in with the group.

I was diagnosed in Aug 2002 - clearly post-viral with very rapid onset of POTS. I experienced what many on this forum have experienced... being batted around to numerous specialists looking for a diagnosis. I was not able to work - not able to be on my feet for very long. Nobody knew what it was. Looking back I see that the signs were clearly there, even on the tests they were using. For example, I had a holter monitor for 24 hours and the doctors said that it showed nothing. ( I was frequently feeling palpitations - though perhaps not that day.) I look at the report now and see that my heart rate was 150 bpm for an hour or more and, if they had asked me, they would have known that I WASN'T exercising. That should have been a red flag...

Anyway, back to your question, after I was diagnosed and they prescribed TOPROL-XL, ProAmatine, Florinef, and Salt Tablets, I started feeling better. But I never regained the stamina to work long hours as I could before. With my job there was considerable travel and flights, particularly long ones, usually put me in bed for a day or two. Finally I found that the travel on top of work was doing me in. I often couldn't work at least one day of the week and always ended up coming home on Fridays only to lay in bed all weekend trying to recover. My body was steadily getting more and more worn out and symptoms were becoming more severe. Finally, last year, I resigned. It was scary since I am single and have no one to back me up financially. But, I had to get better and figure out what to do next. I ended up starting a business that I had dreamed of for years. I make chocolate. I just recently rented some retail space about four blocks from my home. I did this based on faith that I could work enough hours each day to sustain the business and I would have more control over my schedule. The shop won't open until February and I am somewhat concerned about my ability to succeed. My sister visited me from Colorado for 2 weeks this past month and helped me in fulfilling all of the Christmas orders. It was great to have the help but also sobering to see that she, at a youthful 65 years old, was able to work twice as much as I can, at a youthful 41 years old. On one of the days, we were trying to fulfill a big order and worked from 10AM to midnight. I felt pretty good during that time but awoke in the middle of the night with a screaming migraine. I ended up in bed for two days feeling like I had been hit by a train. I was hurting everywhere and incredibly fatigued. It took two more days for me to start feeling normal again. So, the reality that I recognize is that I MUST pace myself. I can't push through the long hours anymore. In fact, 8 hrs is the MOST I should attempt even on the days that I feel able to work. Lots of rest is critical as well as lots of ProAmatine. I agree with a former post that your dose of ProAmatine sounds low compared to mine. I take 10 mg three to four times each day if I'm upright. However, everyone is different and I know one person who only takes 5mg in the morning. So maybe your dose is perfect for you. Just know that if you are still having lots of symptoms, increasing the dose, after discussing it with your doctor, would be entirely reasonable. I'm also sad to hear what the neurologist said to you. I consider my condition moderate compared to some who are completely bedridden and others who can function quite well with a minor dose of drugs. So, I don't think it is ones ability to "push through" as much as it is just differences in the severity of the condition. Maybe you can use the article published by Dr. Grubb earlier this year to help educate the officials who are deciding on your appeal. He makes it quite clear that patients with POTS can have considerable difficulty with everyday tasks. Also, I was a manager several years ago within the State employee system, and the first thing that I thought of was talking to HR. Generally they are bound to a considerable level of confidentiality and they also are well-versed in the potential for lawsuits. Violating the ADA is quite serious and I think that your supervisor is treading on very thin ice. I would love to know if you've spoken with HR already or not. It usually IS very difficult to terminate someone within the government, so I would also be surprised if your appeal was not granted. If that happens, I wouldn't hesitate to contact a GOOD EEO and ADA attorney.

Well, that's plenty from me. I wish you GREAT luck in your effort to maintain your position. Keep us informed and don't hesitate to ask for more support.

[deucykub]

Hi, Lois:

Thank you for taking the time for such a detailed reply. My doctors in Boston did check for Lyme disease and the test came back negative. I really have no idea what is causing POTS. It could be a long term thing for me since I've been blacking out since I was very young, or it could be related to my health struggle the year before with asthma and bronchial infections. I'm not sure if it started quickly or crept up over time because the symptoms overlap so much with asthma and fibromyalgia.

I am indeed a Federal civil servant. Thank you for sharing your experiences with POTS in relation to working in a Federal job. Your story sounds so familiar. Even when I am feeling better, I'm still missing more work than I would like. It's so frustrating! Thank you for offering to share your accommodation information. If this next round is denied, I may take you up on your offer.

I think my doctor is taking the approach of easing me on to medications because I am on so many now to begin with that I've lost count. They started first with just fluids and salt, then added midodrine, and told me the dose of that may need to go up. I think I will contact them tomorrow and discuss upping the dosage since I am still struggling. It's good to know that there are other medicines that may help if my current ones aren't working. I am already on an SNRI - it may be that was already helping me when POTS developed. My rheumatologist put me on Cymbalta for neuropathic pain due to fibromyalgia.

Thank you so much for your message of hope and for Dr. Grubb's article. I think I will use that article in the reasonable accommodation process.

Congratulations on your retirement! You deserve healthy days after working so hard. Enjoy every moment!

Deucy

[deucykub]

Hi, Pam:

Thank you for sharing your experiences and congratulations on returning to work. It is really helping me to know that it's not just me who can't work through this illness. Although, I wouldn't wish POTS on anyone (well.... maaaaybe my boss just for a few days to encourage understanding? ).

You are so right about the pressure of being the breadwinner. I wouldn't change it for the world, though. My husband supported me through my graduate education, and now it's his turn to shine!

I haven't tried FMLA yet since I really do need the paycheck right now. Unfortunately, the government doesn't offer short-term disability pay either. We have EEO Counselors, but they tow the bureaucratic line and protect management - at least, so far. I hadn't thought of trying EAP. That's a good suggestion! I've already asked our Union for help (never thought I would do that). It's very odd to have a graduate education and be represented by a Union. I'm used to fighting my own battles, but the attitude in my agency is akin to a factory with management vs. represented.

Thank you so much and I hope you continue to feel well!

Hi, Julie:

Wow, how exciting that you are starting your own business! I'm so glad you joined the discussion. Your experiences are going to benefit so many readers on this forum.

Isn't it always the case that the symptoms pop up when the doctors aren't watching? It's like bringing your car to a mechanic to check out that "clicking sound." They never hear it! I once told a doctor that apparently the solution to my illness was to be within a 100 foot radius of him because everytime I had an appointment I was feeling better. Argh. It's so amazing when you finally get through to that one doctor who figures it all out though. I'm glad to hear you were able to make it past the wall of lab coats to someone who was able to diagnose you!

What an great career change for you. I certainly couldn't be trusted around chocolate all day. Resigning must have been terrifying; I admire your courage! I truly hope you find success in your new venture. (If you start selling chocolate online, please let this chocoholic know!)

Your experience with travel and work are very relevant for me. I've been looking for a new position away from these awful managers. One job I've applied for is supporting an elite military command, and that would probably require travel. It looks like that's something I may need to think about.

Do take it easy on yourself. My Mom at 60 can out last me at 32 any day . I always say I'm 32 going on 70 but with a smile fixed on my face.

I haven't spoken with anyone in HR, yet, although I have worked with our EEO Manager. She has not been of much help so far, backing up the managers in our office. She did let me know I could file an EEO Complaint but not in a helpful kind of way, ha ha. Our Union (an organization I am completely NOT used to because I'm a professional level employee) has taken an interest in my case and is ready to go to bat for me. I really hope this doesn't go to court, though. I'm not sure I have the stamina for that.

Thank you for taking the time to post your reply. I look forward to seeing you more on the forum!

Best of luck!

Deucy

[ramakentesh]

When i first came down with POTS i couldnt get diagnosed because none of the GPs or specialists I went to had any idea what was wrong with me. So I couldnt get time off work. So basically at my worst i used to have to go to work - it was really quite hard feeling like your going to pass out all the time with no idea why., Main thing was I would spend half the day just struggling to remain conscious rather than concentrating on what i was supposed to be doing.

Still when I finally got diagnosed I had already begun to recover. I tried meds but didnt tolerate them well and in the end I just started taking licorice to give me on the spot HP boosts so i could get rid of the lightheaded feeling. It works ok most of the time but maybe once every year or so I get a bad episode where i have to take some time off work. Also since i got POTS i get migraines a fair bit - maybe once a month and im a right off then as well.

So in short i can function ok most of the time at work, but there are times when its a struggle and some sick leave is regularly taken,

[EarthMother]

I left my high-tech management career Aug. 2007 after 23 years. I no doubt had POTS the whole time, but was officially diagnosed around 2003. Like others have expressed, I find myself taking issue with the comments by your neurologist that some people "can work through". Each of us face an amazingly heroic and very private battle that is often invisible to even those closest to us.

Like you, I was the golden girl. I spearheaded impressive projects and developed a level of compassion and communication skill that was unprecedented in the computing field.

With my official diagnosis, I began to make adjustments ar work, with the full support of my work place. I got a reclining office chair with built in foot rest. A laptop computer. And permission to work some of the time at home.

I no doubt did not recognize the physical and emotional stress the job was taking on my health. Each year I worked a little more time from home, took more meetings by teleconference and more sick days.

By the time I left in August my body/mind were a wreck. And even after leaving they have continued to decline beyond any of my previous POTS crashes.

I know for me, at 45, that I will never be able to work again. But the harsh reality is that I can't even do simple things now like cook or other little tasks like garden that I would have so enjoyed in my 'retirement' had I not let my body completely burn out.

Perhaps if I heeded the signs when my body was whispering ... I would have more life in this body now.

Good luck on your own healing journey and finding balance that works for your unique circumstance.

~EM

[mkoven]

My symptoms have fluctuated so much. There have been periods when I couldn't work, but I can again for now. I try not to predict the future. I have a lot of control over my schedule, but I'd like to believe that no matter how bad it gets at times, I still have hope for improvement. Even if it's not work, I need to feel like I have tasks that I care about that I am able to enjoy. If my job required a lot of standing and was physical, that would be different. But I want to believe I can be creative. Not to say that there aren't times when I'm just too sick. But when I've thought nothing would ever settle down, it usually has. So I'd say one has to know one's limits in the short-term, and respect them, but it's important for me to be able to look ahead with some hope. Sometimes pushing is good for me, sometimes it's harmful--tricky to distinguish. And it's a day-to-day judgment call-- from whether I"m well enough to go out to a restaurant, to whether I can hold class, to whether I should try to exercise or rest.

[iheartcats]

I'm bumping this up as I need a vent.

I've been diagnosed with POTS for one year now (fun anniversary!) and am somehow still hanging on. I dread going to work on days I feel unwell, and have intermittent FMLA but only take for appointments/as needed/flare-ups/etc. as I don't get paid for the days I miss.

There are just some days I don't think I am going to make it through, but I somehow manage. Not the best of scenarios, and I do fear what happens if I just can't do it anymore. I try to block that thought off until I have to deal with it.

Mornings are the worst and getting ready and the first hour or two of work seem to be the most difficult. If I could teleport, that would be easier! The walk from the garage to the office is a pain - most people think nothing of a couple blocks, but to us? That's a daily trial. One 'positive' I have is a morning latte helps, and it's my daily treat because you have to have something to push you through the bad times.

The next couple of months will be difficult because of the frigid weather and I just cannot wait until March. I'm taking it one day at a time.

Working with POTS is so hard...especially when no one knows how ill you really are.

[shadesofgrey49]

Working with POTS is so hard...especially when no one knows how ill you really are.

No one knows, and it's also hard for you to predict when you're going to feel like crap and how long it will take to pass, or if it will pass at all.

I'm two credits away from my bachelor's degree. I took a medical leave last semester and I'm planning on trying once again to go back in a week (in August, when moving day came I was in a bad flare so I kept pushing it up a day, ended up in the ER one day, and on the fourth day somehow made it to school six hours away in one piece, only to turn around and come back home because I felt like death and didn't think I could take care of myself and the only diagnosis I had was IBS). I'm still having days where it takes four or five hours after waking up to feel physically capable of showering, so I'm clearly really worried about getting to classes, my 15-hour/week internship, etc. I also have two work-study jobs, but I think my bosses will cut me some slack.

Why the **** are mornings so difficult?

[firewatcher]

"Why the **** are mornings so difficult?"

Its a circadian thing...that's why so many heart attacks happen in the morning.

I am sitting here trying to wake up, feeling like an utter zombie with my heart going thumpa-thumpa-thumpa.... because on top of all this @#$% I have a circadian phase delay! My body thinks it's still 3 or 4 in the morning and I should be asleep!

If you are on a beta blocker, take it first thing. Otherwise, drink a lot of something and squeeze into those compression stockings. I was surprised at how much they helped me get through the day. I thought I would feel like a balloon animal, with someone squeezing my feet but I LOVE my compression garments. If you can't stand the hose, get a "thigh slimmer" shapewear girdle (like spanx, just make sure its firm control or higher) it helps too. Good luck, I feel your pain...zzzzzzzzzz

[carinara]

In my experience, me feeling the worst in the morning has nothing to do with circadian.

More so with my system being relaxed and therefore trying to stabalize again. I experienced so many times, that as long as i am on the go and stick to my daily routine i feel the best. I'am on a weeks holiday from work at the moment. Whenever i fall asleep in during the day whilest trying to meditate, or reading a book and wake up again (even if i just sleep for 10 minutes). I feel as bad as i do in the mornings and it takes a long time for my body to adjust again. Thats why i try not to ever fall asleep whenever i still have an appointment later on, because i never know how long it will take before i feel stable again. When my christmas holiday is over and i return to work. I will stick 100% to my routine ( getting out of bed 2 hours before i have to leave the house, doing all the morning chores sitting down). Otherwise i wont make it. And i make sure that i never take a nap.

carinara

[ramakentesh]

ANother big reason the mornings are so bad is the blood pressure cycle. Blood pressure is generally lowest in the morning and gradually increases during the day. that is why people with frank orthostatic hypotension feel worse in the mornings apparently.

Even if you have hyperad. POTS NE will have more of a vasoconstricting affect on your carotids when your BP is lower and less when it increases.

WORK is a nightmare for me at the moment. I had two weeks off holidays and I actually felt pretty well but one day at work and in meetings and i was struggling to even remain conscious yet again. I mean its always hard even when im relatively well with POTS but at the moment its almost not worth me even trying. Im getting nothing done until 2pm every day as the mornings in kjust a mess...

if only i could win tatts and then never have to worry again about finances..