Motivation For A Healthy Lifestyle With Dysautonomia

[fighting4health]

I've had symptoms all my life, but was recently diagnosed with dysautonomia with migraine. I was told to do a lot of lifestyle changes: low sugar, low fat, high salt, high fluid diet; small meals; lots of rest breaks; naps every day; yoga; strengthen abs and legs; and to avoid cardio and extreme temperatures. When I stick to the plan I still have bad days, but they are mild and infrequent compared to before. I still do dance which makes me feel better even though it's a cardio activity. I just deal with brain fog on the choreography, but do fine with everything else involved. I oftentimes have trouble sticking to the plan, especially on the bad days when I'm just like "what's the point", but that makes one bad day turn into several. Has anyone else been prescribed similar lifestyle modifications and how do you deal with staying motivated to follow them?

I also have trouble with it drawing attention to my condition when I turn down cake at a party or take extra breaks. I always get questions with those kind of things and I don't want to explain it all the time. People are always surprised and confused about the high salt diet and it's frustrating that the low sugar and fat seems to make perfect sense to them because that's "just eating healthy". I get comments that indicate me being vane and trying to stay thin when I turn down pastries when I'm just trying to avoid being sick. It seems like a lot of people on the forum also try to stay low key about their symptoms. Anything you do to keep the questions away?

[Janey]

It may sound crazy to some, but I don't tell other people that I have "POTS" or "Gastrointestinal Motility" or "Dysautonomia." Because I find when you explain them outloud to people, they just sound ridiculous. Having problems standing up sounds like you've made it all up, I find. SO, I just say "I have a neurological problem which means parts of my nervous system don't function properly and all sorts of things affect it like diet, exertion etc" and then they just nod, give me a brief sympathetic look, and get on with what they're doing.

In terms of being motivated for a healthy lifestyle, I am the worst person to ask about this. I often comfort eat because I feel miserable about being ill and this then makes me feel much worse and it's a vicious circle. In fact I'd say most of my time with dysautonomia has been spent punishing myself through eating too much and all the bad stuff, and then suffering for it.

Janey

[potsgirl]

I try to eat as healthy of a diet as I can: low fat, low sugar, high salt and tons of water/NUUN hydration tablets with electrolytes. The main variant from my doctor's advice to yours is with the cardio workouts. My doctor wants me to try to move as much as possible, concentrating on the lower body, like yours. So I do both aerobics (I also have osteoporosis of the spine so I try to walk a lot) and some weights. I try not to nap every day, but when I'm really fatigued, I do. I also try to get as much sleep as possible at night, between the tossing/turning some of us suffer from.

Like Janey, I tell people (only if they ask) I have a central nervous system issue, keeping it generic, so people usually just gloss over it and don't ask many questions. This isn't a big problem for me, though, as I rarely get to many social events.

Cheers,

Jana

[Csmith3]

This is probably just an excuse, but I find it very difficult to keep up the "healthy" lifestyle. To me, to do the list of things that would be helpful to our health looks like a full time job. I know that when I'm fit, I am generally in better health but for some reason, it is difficult to motivate myself and, as you say, it's even harder when you are feeling low or hitting a bad patch. I suppose I would try to do one or two things at a time rather than worry about following all the recommendations. You sound like you are doing very well with the lifestyle changes and I wouldn't worry about any minor slips.

Over the last 2 or 3 years I feel I've come out and been more open about dysautonomia. I don't go for a long or medical explanation unless requested, but just occasionally drop into normal conversation (when relevant!) "Standing makes me ill", "I can't drink alcohol as it makes me ill". My most used phrase is "I have run out of standing time [and need to sit/lie down/go home]". I am now open about hospital appointments and say "Tomorrow, I'll be in late because I'm seeing the cardiologist." People know I see a variety of specialists and generally don't pry which suits me as I don't want to explain my medical situation all the time either.

By dropping in these small comments into the conversation, over time the people I see a lot start to realise that many things make me ill and this is all a bigger deal than they originally thought. They also learn useful things like not to stop and chat to me in the street if there is no seat available. I've been pleased even with the small acknowledgements and understanding I have received.

[fighting4health]

Thanks for your input everyone. It's so difficult to stay on track when I don't feel well even though that's the time I probably need it the most. I feel a lot better to know that I'm not alone on that one.

[juliegee]

I LOVE everyone's responses, especially Cathy's. I think by dropping small bits on a regular basis, people accept your illness as your normal. (I'm very intrigued by this topic & want to do an article for the newsletter eventually!) It seems simple to explain, but it's very difficult to live with an invisible chronic illness in an open and honest manner. I think avoiding big technical terms is a great idea UNLESS someone seems genuinely interested & they ask for more.

Fighting- like you, I feels so much better if I follow a healthy lifestyle. As far as people questioning your diet (esp. sweets) just smile brightly and say "Oh, I wish I could- my doctor won't let me." Don't share too much. It seems as though that makes you feel vulnerable (open to criticism) and this illness makes us all vulnerable enough. Hold your head up high & live in your truth. You owe NO explanation to anyone

Hugs-

Julie

[maggie]

Since I can't take meds to keep my heart rate lower I wear a heart monitor all the time while I'm up and around. I have been very focal about my condition, it's hard not to. The other day while I was out my heart monitor went off telling me I was too high and the little girl standing by me asked, where is that noise coming from? I gladly explained to her my condition and showed her my montior showing my heart rate. The little girl's mom was a little embarrassed at first, but when I took the time to explain to her daughter what was happening she became involved in the conversation as well. I told the little girl her mom might want to get her one of these special watches so she will always know where she is at. Here was a golden opportunity to tell someone about this condition and I took it. Only when people can see actually proof of how high my heart rate is going just standing there can they even begin to understand my condition. I feel it's my calling to educate as many people as I can of this rare condition. If we on this forum aren't focal and stand up for our cause who will? One day I hope I will run into someone who will have enough influence, such as a newpaper, magazine, or whatever to get this condition more exposure. Do I like having this condition? NO, but will I let it stop me from trying to improve my life, NEVER. I keep praying that someday, someone, somewhere, will care enough for a small group of people who need help with their health issues to see me and inspire and motivate them in the medical field to do more research for us and come up with some answers to our needs. I carry the banner of being a person with POTS proudly and will never be ashamed to disclose why my body doesn't work like normal humans.

Maggie

[Tachy Phlegming]

Honestly, I think there is a need for a publication (maybe more than one), we can hand out to friends and strangers with a popular health twist. Something with pretty pink, green, and blue titles such as:

Raising your blood pressure.

The new high salt diet.

Stand up for lying down.

Keeping your heart rate under 100.

Strenuous exercise can put YOU over the edge.

Making sure you are never in temperatures above 70 degrees. What it does for your autonomic nervous system.

Does flying make you crash? Taking your vacation in your own bed.

How to explain away your exquisite body when it's just because you can't eat.

When you can't breathe and it's not asthma.

When 10 bathroom breaks aren't enough.

Should you really go to the ER when you have the symptoms of a heart attack?

Shaking awake your numb fingers in the morning.

Then we need to tell our buddies that the regimens and advice in the magazine will cure whatever ails them -- after all, it works for you.

Tell them your doctor has recommended high salt for you -- to keep your autonomic system "strong and healthy" (the vaguer the better) and why hasn't their doctor? ...