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Husband just doesn't get it


Swankster
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I have had dysautonomia for 23 yrs. My profession as a dental office manager is very past-paced and stressful. I was doing the best I could working while my husband was laid off from work for 3+ yrs. I took a two month break, but, now, that he got a job, he wants me to go back to work to help catch-up financially, which I am willing to do, but not necessarily in that field anymore. Being the 'caregiver' for a very depressed man for all those yrs. as well as working and trying to keep my own life toghether has left me feeling more awful physically and psychologically. I guess it is some post-stress disorder that I am paying for "stuffing" it for those years. Some days I do very little, like laundry and empty the dishwasher and I need a nap..., I am so exhaused and want to sleep YET I feel like I have a constant supply of mega-adrenaline in my veins at the same time...it almost feels painful to sleep if that makes sense. Add PVC's and tachycardia to the nap 'sensations'. And I get menstrual migraines to boot!

PLEASE Would some of you very kind people explain in plain terms how dysautonomia affects you ( physical symptoms/limited working ability/psychological effects of long-term stress, effects on the menstrual cycle & PMS, etc), so that I can show him it's not all in my head. I think because he doesn't "see" symptoms, they don't exist. THANKS so much!!!

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Hi Swankster;

WELCOME!!

You said that you have had Dysautonomia for 23 years. Are you seeing a physician, who is very knowledgable with dysautonomia, on a regular basis? If so maybe you might want to insist that your husband go with you to your doctor appointments, or at least one, so he can hear what you go through from the doctor.

When my symptoms hit me hard, 6 months ago, my husband had to drive me to my doctor appointments. He learn what was going on through the doctor. But my husband has never doubted me when I have told him I wasn't feeling well in the past. I take care of him, he takes care of me.

About 9 years ago I had a very hard decision to quit a stressful full-time job and stay home. Since then I have worked at other jobs, part-time, that are not so stressful. Hang in there!! Life has a funny way of working itself out. Your health is most important!! You need to do want is best for you.

KathyP :)

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Plain terms for a bad day:

pain, nausea, headaches, dizziness, extreme sense of fatigue, trembling, legs buckling from under me, inability to focus my attention for more than a few seconds at a time, "brain fog"/unclear thinking (kind of like when you're startled awake at night and you're not quite sure what's going on), inability to stand for more than a minute, if warmer than about 70 degrees then passing out, or near passing out (can't do much work lying on the floor unless...well...I'll say no more on that one).

On a good day, I have most of these symptoms, but the passing out part isn't as much of a problem. The only visible signs of distress for me (as told my my family and friends) is that they can see the sweating, and occasionally, skin color changes from flushed to very pale as I go into shock from the low blood pressure. Maybe the best way to describe how it feels is to say that it's like having a bad flu but going to work anyway. You may have a look on your face like you don't feel well, but to the rest of the world, you pretty much look normal.

Such is the life with an invisible disability. I hope you're husbad can mentally walk in your shoes for a bit so he can better understand what you're going through. Certainly all of us here can relate.

While my spouse is really supportive, my family has taken years to come to grips with the fact that I've got limitation---and that I'm not a hypochondriac. My mother only started talking to me about my health in earnest this year--I'm 40! And I've been chronically ill since my early 20's...and had all the vestiges of EDSIII and POTS since birth, although I was much older when i got an accurage diagnosis (32)--before that I was diagnosed as having CFIDS/CFS. My mom and sisters go through periods where they are still not supportive...and my father...we'll he's certain I'm just a nutcase and making it all up--in fact, he's said as much to all my paternal relatives.

Too bad for my Dad I'm just faking because that means I really fooled the system and wasted his and my own tax dollars at National Institutes of Health. :) Poor NIH-- they wasted all sorts of spiffy expensive tests and a heart catheterization on me. I had the 2nd lowest flow pressure through my coronary sinus (measured from inside my heart--just for fun and attention of course) that they'd measured in their study of patients with dysautonomia. The patient with lower than me was completely bedridden.

Oh, and don't forget that my first EP Cardiologist told me I failed the TTT with flying colors, he stopped the test at less than 5 minutes into the hour-long ordeal after the they lost my blood pressure on the monitor, my heart rate was in the stratosphere and I was losing consciousness.

(The above two paragraphs were all in my twisted sarcasm--sorry, life without AC has drained my happy go lucky attitude and turned me into today's number-one GRUMP...who knew my attitude was charged with freon??? :) )

I hope you and your husband are able to come to a good understanding. :) Nina

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Hello!

I tried to continue working at the beginning of POTS (which I've had now for about 3 years). I was to the point where I'd show up to work (as an admin. assist.), turn my computer on, almost pass out, and then drive home crying. The stress alone of trying to work yet being unable made my symptoms much much worse.

It is so important for us to be and to feel validated in this illness. Our dr's need to do this but also our family members. If not we feel even more isolated, scared, stressed, and possibly depressed.

On my best days I can leave the house - for a few hours at the most. If I do more than that I will pay for it for about 3 days. Fatigue is my worst symptom followed by low BP which makes me feel spaced out, brain fogged, etc.

I truly hope that you and your husband will be united through this trial.

Lisa

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swankster -

welcome. i'm sorry you have need to be here but glad you found the forum. there is a lot of good info & great people to go along with it. and a lot of good info that you should be able to pass on to your husband in terms of how autonomic dysfunction affects one on a daily basis. there are lots of first-hand accounts on the forum throughout all variety of posts as well as under "stories" on the main DINET page, including a recent discussion on working that you may have already seen. if not, it's at http://dinet.ipbhost.com/index.php?showtopic=2881

there is also an article that may be of use in helping your husband understand. it is in regard to Quality of Life in POTS but i would still think could be helpful in regard to any type of dysautonomia. the link is http://www.mayoclinicproceedings.com/inside.asp?AID=112&UID=

good luck,

:-)melissa

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