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Things You Do That Help?


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I'm curious to see what others do that doctors dont tell patients. This can be anything that helps with your daily crusade!

Here are a few of mine:

1. A natural cleaner. I've always been a clean person and hate my house to be dirty. When my symptoms started I had the worst time tolerating household cleaners. I was using a painting resperator mask but gave that up after my fiance found a natural cleaner. I cant stress enough if you have issues with smells or sensory overload I'd try these. Target sells them for a dollar less than the site and if you use a Target card you get 5% off:

http://methodhome.com/shop/antibacterial-kitchen-cleaner/

2. My upper chest and throat get tight. The slightest touch and I choke or gage, not sure why and the Neuro thinks its just anxiety. I found wearing a V Neck shirt helps a ton! I've never liked the look of V Necks on guys until I found these (ladies they have them for you as well):

http://www.target.com/c/men/-/N-5xu2r/Ntk-All/Ntt-mossimo%20v%20neck/Ntx-matchallany

3. White noise maker, helps a ton with my ears for sleeping!

4. A swissball and some small weights. I put this in my living room. When I'm feeling like crap and need to push myself I will do some exercises while watching tv.

5. Compression Stalkings, yes most of you have tried them due to Dr's orders but I found I dont like the normal ones the medical supply stores stock (thin dress looking sock style). My circulation gets cut off real easy especially when I'm on a 13 hr work day. These helped more than the standard dress style:

http://www.amazon.com/Jobst-ActiveWear-Athletic-30-40mmHg-CoolWhite/dp/B001O1QMN8/ref=sr_1_fkmr1_3?s=hpc&ie=UTF8&qid=1333289192&sr=1-3-fkmr1

These are a lot more comfy and also I'd encourage you to shop around for your stalkings. My local medical supply store isint what I consider local and their prices are almost double what you can find them online for...

6. Bearded Dragon pet! I've been searching for a Pet thread (might start one if I cant find one). But my Bearded Dragons are great for helping me occupy my mind when I'm extremely symptomatic. I'm not a snake fan nor do I care for most reptiles but the Dragon is great with kids and loves to be with people! They are easy to care for (just expensive) so unlike a dog that needs walked or a cat that can stir up allergies they arent hard on anything except your pocket book.

What do you do/use?

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1. I use a steam mop to clean my hard floors so there are no smelly chemicals involved.

2. I turn off the tv and read or get on the computer if the noise starts overstimulating me.

3. I monitor my activity very carefully. I have learned that 2-3 hours of activity is my limit and anything beyond that will have bad consequences. I may be ok to continue with the activity at that time, but, later or the next day I am often very sick. So I stick to my 2-3 hours each day, so that I can at least count on that block of time consistently from day to day.

4. I cut my hair really short so my daily maintenance is less than 5 minutes (less if it needs to be).

5. I sit to do many household things that I used to do standing like putting on make-up or cutting up veggies.

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1. I use a steam mop to clean my hard floors so there are no smelly chemicals involved.

2. I turn off the tv and read or get on the computer if the noise starts overstimulating me.

3. I monitor my activity very carefully. I have learned that 2-3 hours of activity is my limit and anything beyond that will have bad consequences. I may be ok to continue with the activity at that time, but, later or the next day I am often very sick. So I stick to my 2-3 hours each day, so that I can at least count on that block of time consistently from day to day.

4. I cut my hair really short so my daily maintenance is less than 5 minutes (less if it needs to be).

5. I sit to do many household things that I used to do standing like putting on make-up or cutting up veggies.

Yeah a Steam Mop is great as well! My mom bought me one for xmas this past year and its helped a ton!

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I live in the moment so that I'm not too troubled by other events in the past or future.

If I do any chores, I do them gently and purposefully.

If I find my nervous system getting overloaded, I calm down and breathe gently and meditate.

I let people know if I am having a bad day; that way no undue pressure.

I do things that I love doing and that is great therapy.

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I live in the moment so that I'm not too troubled by other events in the past or future.

I do this too, i really think it helps.

I also try to ignore my pots, sounds goofy, but it prevents me from overreacting and encouraging the whole shebang of symptoms.

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  • 2 weeks later...

Trying to exercise has been a real struggle for me, so I've had to accept the fact that I can't just push myself through it. I'm already housebound, but trying to push my body results in a nasty response from my heart (brady, skipping beats, SVT, more reactive tachy, etc) and overall feeling horrible. I would also get really dizzy from biking if I pushed my heart at all - I would end up on the floor or couch for at least an hour unable to lift my head.

What is working for me now is doing a little bit, more often.. {thanks to some tips from others on this forum :) } I can get on my recumbant bike and do very 'relaxed' biking for 3 minutes being careful to keep my heart rate low (80's). Obviously, I'm not getting a workout with this activity, but the increase in circulation (or maybe a chemical release ???) really seems to be making a difference. I've found that it helps to stabilize my heart rate for a period of time after and that helps when my heart rate is high and really reactive. It also helps with the brain fog. I've built up to doing that 5 times/day, so that stabilizing effect carries through.

Of course, feeling more stable makes me feel like I can push it...so I tried to go to 3 1/2 minutes yesterday...but my body is clearly telling me was too much of a leap. <_<

It definitely seems like we each have our own formula of what works.

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