potsgirl

I can do very limited housework. I can do a load or two of laundry, but can't pull out the wet sheets or towels to put into the dryer - my boyfriend needs to do that for me, they're too heavy. I can 'Swiffer' the areas of the floor that are tile, and once in a while I can do short periods of dusting. If I have to bend over, I just sit on the floor and push myself around. I don't cook dinners, my boyfriend and I usually eat together, but usually I'm have things I won't cook, whereas he may cook things up like spaghetti for himself. A stool in the kitchen and bathroom are a great help!

Hope this helps,

Jana

I would love to sleep that long! I tend to be in bed for about 10 hours, but get very restless sleep and wake up too early. Pass some of that sleep on to me!

jana

Chrissy,

I also have low heart rates, and wouldn't change your meds until you get more answers. I have cardiomyopathy and a pacemaker, so I'm very careful about changing meds. Also, there are so many medications out there that can lower your BP and heart rate, that I think you should really wait until you see your doctor. Hope you feel better soon!

Cheers,

Jana

I really like what 'It's My Life' wrote. Sometimes it's the fear of being alone that clouds our judgment and causes us to stay in unhealthy relationships way past the time we should have ended them. I hope your boyfriend becomes more compassionate and can learn to compromise with your situation. If he can't, perhaps he's not the best choice for you...You didn't mention anything about your ages, but that could also have something to do with him not being willing to pitch in more. Sometimes more immature men (and that's definitely not just an age issue!) can't deal with putting in more than their 'fair share'. Just do what's right for YOU.

My best,

Jana

Dear Angela,

Isn't it amazing what we as mothers can do for our children? Christopher is truly blessed to have you as his mother. I just went through a loved one's battle with aggressive prostate cancer, and during the day of as surgery, I wouldn't leave the hospital until I knew he was ok and the surgery had gone well. Then is was home after his hospital stay, where I had worried so much that I wouldn't be able to care for him properly. It seems like somehow, we can summon the strength from within us to do what we have to do. He's still looking at radiation, so we're not done yet, but I know you'll find the strength to continue like I will.

God bless you, and give you the resources needed to care for Christopher. I'll be praying for you. Please update us as he turns this corner and continues to improve.

Hugs & peace,

Jana

I get a nastier headache than I usually have, and my legs and arms will get tremors. I have to go up stairs in my fitness club to get to the treadmills, and that alone can leave me breathless! If I'm working out on a particular day, I know I can't do much more than come back home and rest for an hour or more. Once in a while, though, I can work out and still feel fairly decent. Hope this happens to you, too!

Cheers,

Jana

Yes, I get the same kind of pain and I'm waiting to do a CT scan to see if there's something going on - can't do an MRI due to my pacer. My pain is right at the base of my skull, and down into my upper neck. The pain gets so severe that sometimes I have to take a pain killer (prescription) to get rid of it. It's frustrating, isn't it? Hope you figure out the best way to deal with it. If you do, let me know!

Jana

Hi Janey,

First of all, congratulations on going to work and doing as much as you can around the house. You are right not to push yourself too much, and you shouldn't be made to feel guilty when you can't do things such as 1/2 the housework. There's compromise in a good relationship, and though your boyfriend doesn't understand your illness very well, you should expect someone to be compassionate and caring, and believe you when you say you just can't do something. A rigid 50/50 split is just not workable with our condition. Does he ever go to a doctor's appointment with you? Have you tried counseling? I don't think you should feel guilty and pushed most of the time for things that you can't honestly do, and your boyfriend is just going to have to take your word for it.

I've heard about this problem for others on the Forum, but there certainly are many great men out there who can understand and emphasize, and don't mind pulling more of the weight here and there - or all of the time, for that matter. My boyfriend of 5 years has been terrific, and I consider myself very lucky. Please don't let this cause you too much stress and guilt...You sound like you're giving it your best!

Cheers,

Jana

Steph,

How low is your BP? Have you had a tilt table test yet?

Jana

I can hardly get myself out of bed in the morning (6-6:30), and have my peak energy from around 10 am to 5 pm. I go to bed and read for an hour, and usually turn off my light around 7:00 or 7:30. But like a lot of us, don't sleep well and always want to take a nap in the early afternoon. I don't usually sleep, but 'rest'. If I'm going for a walk or to run an errand - on a good day, both - I like to be back home before noon. But it's incredibly hot here, so I stay in during the hottest hours.

Cheers,

Jana

Nina,

Just curious...How much exercise and what type do you get in how often?

Jana

Great job on making it through the presentation and thinking ahead! I'm so happy that you can continue to work. I sure miss it.

Cheers,

Jana

I get the worst reactions and am at my lowest when it's really hot here - I'm in Tucson, AZ. Right now we're having weeks of high temps (103-109) and I can't be out for more than a few minutes before I'm absolutely exhausted. We rarely get rain, except during the 'rainy season', but that's been very light here this year, and last. I'm looking forward to moving to a more balanced climate!

Cheers,

Jana

I do get the 'flu' feeling at least once or twice a week. Sometimes I'm in bed, sometimes it's during the day when I get up. There are many mornings that it takes everything I have to muster the strength to just get out of bed. If I do spend most of the day in bed, though, the next day I seem to have more energy...Does that happen to anyone else?

Cheers,

Jana

Sometimes my meds will make me nauseous, and I'll take a Benadryl or two to help control it. Meclizine, Dramamine, both seem to help with dizziness/nausea if you're looking for over-the-counter.

Cheers,

Jana

Hi Tilly,

Yes, I know that many of us suffer from the hot flashes and night sweats. I can never seem to get to a comfortable temp for very long. I live in Tucson, and right now the temps are around 106, but I have to wear jeans and a sweater if I'm going to be going into any air conditioned place. So...being really hot outdoors to being extremely cold indoors. One of the many joys of POTS.

Cheers,

jana

I also have osteoporosis of the spine, and osteopenia in my thigh bones. I drink a lot of orange juice with added calcium and vitamin D, eat low-fat cheese, and take a calcium supplement once daily. Unfortunately, I can't stand milk or yogurt. I've just started with the calcium, but haven't experienced more sleepiness with them yet. I could sure use it at night to get a decent night's sleep! How much calcium do you take? Also, EarthMother's idea with the magnesium is good - I need to implement that, too.

Cheers,

Jana

Kat,

1. My doctor told me that I might never recover from POTS, but it was possible for some of us, especially those who got ill when they were children/young adults.

2. 0 (I can't tolerate them)

3. 150 minutes

4. 21 grams

Hope this helps, and good luck!

Cheers,

Jana

Just a side note on the insurance....many insurance companies have different regulations/policies. For instance, BellaMia had to go through a 'line' of products to get her wheelchair paid for. I went straight to the wheelchair, and my insurance paid for it all. It never hurts to check and know exactly how and what your insurance will cover!

Cheers,

Jana

I know that most of us here on the Forum can relate! I went back to college to get my master's degree in anthropology/archaeology, and then landed a job I really loved working as an archaeologist with a Native American tribe up in Northern Arizona by the Grand Canyon. I then moved down to Tucson to live with my fiance, and got the dream job of my life with the county, also doing arch work. I was there 9 months when I got hit with dysautonomia. I struggled through another 2 months, then had to leave. I was heart-broken, and had to grieve for quite some time for the life I had to put behind me. This doesn't mean your life is over, of course, but you have to learn new ways to cope and get your quality of life in other ways.

I really hope that you can make it back to skating - I sure loved it at one time. But if you can't, we're all here to support you and cheer you on.

Hugs,

Jana

I think the walker with a seat is a great idea. If you also want one that's not so big and you can carry with one hand, I bought one of those shoulder wrap-arounds that are cushiony and soft. If you do just want to plop down, it'll keep you from the dirty floor and still give you comfort. I have the cushion (which is great for movies and more fluid activities) and a wheelchair. The walker/seat would be great for grocery stores, etc.

I was at the Mayo Clinic in MN for 10 days. I remember having to go off my SSRI (Paxil) for a couple of nights before one of the tests, but that's it. Why don't you call your doctor there and express your concerns? They may be able to work something out with you, or at least give you peace of mind for the reason they want you to stop it, and that it won't harm you. Let us know what happens.

Cheers,

Jana

Hi Alicia,

There are very, very few days that I feel symptom-free and 'normal'. I feel the same way you do sometimes...Am I just lazy and not pushing myself enough? But I do try to push myself on most days, and then I usually overdo it and end up with a very bad day that I have to spend most of it in bed with flu-like symptoms and extreme fatigue, dizziness, syncope. I, too, used to be very active, and would love to be able to hike and work again. Here's hoping that we all have more 'good' days than 'bad'.

Cheers,

Jana

I try to avoid garlic and onions when I can. They do havoc with my stomach. Have you read much about the low-oxylate diet? What are your thoughts on that?

Jana

Suzy,

My appointment is at 1 pm! They gave me Amoxicillin to take...I just have to make sure to take it with food, and I can't take all 4, I usually try 2 1/2 - 3. Well, I'll sure be thinking about you when I go now. Let me know how you do!

Cheers,

Jana