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Anyone Getting Help From Others?


futurehope
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How many of you are coping with your autonomic problems with help from a family member and how many of you are going it alone? I was curious because my husband will be leaving for a 1 week trip this coming April and I'm feeling insecure about being alone. Of course, I do have a telephone, but I do not have anyone I could call in a pinch, except some acquaintances from church, but I would be very hard-pressed to use that avenue unless absolutely necessary.

When I'm having dizzines or weakness problems, or any other weird thing happen, or if I have to run errands during a short drive, I tend to feel more secure if I know that my husband is available to call.

How do you all do it?

Thanks.

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Yes, I am alone, all day and all of the time.

I have a neighbor who says she or her son would be available to take me to a hospital if necessary; however, they are away a lot and I'm not sure they understand how bad things can get.

Have gone to the ER by cab three times since I've been sick.

It isn't easy.

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For the last 2 years my husband travels 4 or 5 days every week for work and it is hard. Being your own caregiver is a challenge. ( I was single when I first became ill). I think the best suggestion I can offer is to play out the WHAT IF scenarios and develop a plan before your husband's trip. Just deciding on what you will do in advance can give you peace of mind. We also like to have preset "check in" times with each other.

We are new in our community and don't know anyone well enough to call but I find that when I am feeling bad a call to/from a long time friend helps me through (I keep a long distance phone card handy).

And the hardest thing for many of us to come to terms with is just ASKING for help, even people we don't know that well. Just keep telling yourself that if someone asked YOU for help you would probably gladly help. That's how most people feel.

Good luck!

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I do almost no cooking, and very little cleaning. I help where I can.

I was able to live alone when I had a very small apartment 15 years ago--but I know I didn't eat well--I couldn't stand long enough to cook anything more complicated than spaghetti, so I lived on cereal, pasta and pizza delivery. I was pretty much a vegetarian, mostly because meats just took too long and too much tending by the stove/oven. Food shopping was a BEAST of a chore. I haven't done full-fledged food shopping in years.

I suppose if I weren't working and going to school, I might be able to go it alone...hard to imagine though. I have a feeling I would end up moving closer to my family for the support, which is about 3 hours away.

Nina

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Nina, I assume you currently are living with someone?

Geneva, it was so good to hear from somebody who is/will be on their own for periods of time. It makes me feel that it's doable. I like your suggestion of preparing "what if" scenarios. I might talk to some of my friends, who don't live that far away, in advance and let them know the situation. It's such a blessing to be able to communicate with others in similar circumstances.

Nancy

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Nancy,

I do not live alone, but I am alone ALL day EVERY day with the baby while his father is working long hours, and goes to school in the evenings. I made friends with my neighbors, and they are aware of my condition- and even had to come over and take me to the ER once when I put my foot through a window and got stitches- not POTS related but it was good that she was there. I have no family around, but do have enough acquaintences to call if I need them, and would not hesitate to do so if need be.

David went to England on business for a week back in September, and that was tough- I was so scared something would happen to me and the baby would be helpless. But everything was just fine!! As soon as he gets old enough, I am going to teach him how to call 911 if mommy gets sick. I have a medic alert bracelet, which gives me a lot of security as well.

At any rate, don't worry too much, just take it easy and don't over-do things...and let us know how things go. I'm sure you'll be fine :)

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Yes, sorry I wasn't more explicit about that. Teri and I have been together for 11 years; we're not married, but heck, we're on our 3rd mortgage together, which I think is harder to get out of than a marriage :)

Nina

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Ethansmom stated that she wears a MedicAlert bracelet. I forgot to mention that I started wearing one at a time when I was still driving. It does provide a degree of security because access to information regarding medical conditions, medications, allergies, family and friends and doctors is available. So if you get into trouble and can't talk, the staff at MedicAlert can do it for you. Just have to keep your file up-to-date.

They also have necklaces if you want something less conspicuous. The bracelet is so light weight that I am usually not aware that I am wearing it.

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Get some help. Don't feel bad about asking. Each of us are different and indeed each of us go through different stages of this illness. For me, I don't stay alone if I am in a bad POTS adventure. If you don't have family around ... get some friends together and have a rotating "companion" plan. There are also temp agencies where you can hire a housekeeper for the week. Your insurance may even pick up some of the tab for a CNA (wishful thinking.)

Whatever makes you feel comfortable. Don't be afraid to ask for what you need.

I have the following pinned up on my bathroom mirror it was given to me by a wise woman I met who also had a chronic illness:

No Blame

No Guilt

No Fault

No Judgement

No Comparing Myself To Others

No Expectations

NO EXCEPTIONS!

Be good to yourself. And good luck getting your needs met.

EM

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