Getting Over Bad Days

[Dizzy Dame]

Hi all,

On friday I was home alone. I developed bowel problems early in the day that left me dehydrated. About the time I realized I was in a bad way, I passed out in my living room. When I woke up, I crawled to a phone and called 911. I spent the evening in the hospital getting fluids, and was finally sent home. It's taken me the whole weekend to recover physically from the incident.

Now tomorrow, my boyfriend is going back to work and I'm going to be left home alone again. Even though I'm feeling better, I'm terrified of being alone. The same thing happened last month when I fell and couldn't get up. Every time I get really sick alone, I'm traumatized by it.

I know there are others here who are sick and get left alone alot. How do you cope with the fear? I hope I'll be okay, but I always worry that next time I faint, I'll crack my skull and bleed to death, or I'll fall on my face and smother. I could be on the floor for hours before anyone found me. I try to carry my cell phone around with me, but it's difficult to remember all the time.

Any advice or kind words would really be appreciated.

Hugs,

Lauren

[dizzygirl]

Lauren--- dear I am so very sorry that you are having a rough time. and having to call 911.. tha just bites!!

I understand you fears about being alone.. it is scary.. could you by chance get a life alert installed into your home or apartment? where you would wear a pendant type thing around your neck.. and if you needed help you push the button.. and they send help..

I know that I looked into it for myself.. but moved into a place that has emergency pull cords..

I'm thinking that life alert or life line.. runs about $100 to install.. and a monthly amount which i'm not sure of.. but its a thought..

I wish there where something more that I could do for you.. or more words of advice.. I think its time for a card dizz!!! lol

you hang in there dear.. and take it easy k!!

love and hugs

linda (a fellow dizz)

[Jacquie802]

Hey there,

I can understand your fear. I usually walk around with the cordless phone when I am home alone or drive with my cell phone with I am out alone. I was also thinking that you could look into the life line thing that linda mentioned. I am usually not home alone alot thank goodness, but I can understand your fears.

If I can think of anything else I'll get back to you.

Jacquie

[Be Still]

Being sick and all alone is just about the worst thing.

Back in the days before miracle drugs, so much of what was done for a patient was just 'attend' them. Some one sat up with you at night if you were sick, doctors came to the house. We've lost so much by just drugging people and pushing them through ERs. You used to be able to get a back massage to get to sleep in a hospital! But, no, now you get a nasty pill and a cup of cold water (along with the lights, noise and bustle.) Hospitals used to have signs that said "Quiet, Please"!

I want to live at the time where someone with my sx (given that they had the money to do it) was sent to the Mediterranean for a year to loll on the beach. I think that would help. (Especially, with a nice big umbrella to shade from the sun. Then again, I wouldn?t mind some attention from a nice, virile life guard. I think that would help a whole lot.)

I?m sorry you have to be alone a lot. Fainting is a rare issue with me (and last time I did I fell off the bed into a basket of shoes, which was actually quite a nice way to break my fall, and I wasn?t sore afterwards at all), I mostly feel like a worm drying up in the sun lying on a hot sidewalk. I don?t like being alone like that either.

Hey, it?s either laugh or cry! I prefer laughing. Sometimes, I laugh ?til I cry.

Anyway, sending love your way.

[taylortotmom]

Lauren, I know you are scared. Sometimes the best way to deal with fear is to prepare for any situation. Get everyhting you might need close to you to cut down on having to get up and down. Keep the phone with you and a trash can. Believe me, I've done this enough I know to always have a trash can with me when I feel symptomatic! Load up on your fluids and salt. Keep socks on your feet, stay on the couch (with your head and chest elevated) with a comfy blanket, and get up only to go to the bathroom until you feel better. The more you are alone without any major "events" the less anxiety you will feel about bein alone. Another thing I did, was I had a sheet a paper taped to the inside of my door with my med info on it should the paramedics come they could tell at a glance how to get up with my cardio, etc. I found that preparing gave me control which then made me a lot less anxious about being alone- good luck!

Carmen

[Laura]

Hi Lauren,

Something that helps me feel a little more secure is to have someone (for me it's my mom) call me a few times a day at the same time every day. I expect the call and always answer and if she doesn't call for some reason, I phone there just to check in. While it doesn't help much if something goes wrong, I do feel alot of reassurance from it. My husband also gives quick calls through the day to see how things are.

It is very scary to be alone and deal with this. I hope you can use some of these ideas to help yourself feel a little more secure. Take care Laura!

[yogini]

Hi Lauren,

I agree with Laura - it totally helps to have people checking in on you during the day. That way, if you don't answer the phone in time, they can call for help. I remember that I used to be really scared taking the bus by myself to work, so I would call up friends or my mom and talk to them the whole time. That really helped -- both to ease my fears and to take my mind off of my POTS. Maybe you could use the same idea if you are getting up to go to the kitchen or bathroom - just have somone on the phone with you, so if you do faint, they will know right away. In time, I got to know my limits better and hopefully the same will happen for you.

-Rita

[dawn]

Lauren,

I know exactly how you feel. I made my husband quit his job last July. Now he has to go back to work

and I panic at the thought of it.

I see a neuropsychologist who is trying to train me to go to a safe, comforting place in my mind when I

am panicky. I try. She said to visualize a time that I felt safe and peaceful and go there, ignore the

symptoms I am having.

What seems to help me the most is to talk on the phone, I call a friend, lay on the floor, put my feet up on the couch and belly breathe. I always tell who I am talking to that I am panicky.

My husband is leaving me daily now for 1-3 hours and it is going pretty good. I don't know how it will be when he is gone 10 hours again. I try to stay positive and say affirmations over and over in my head.

This is a big hurdle. I have been over it once before though and actually liked to be alone so I know it can be done.

I haven't fainted for several months, the last time was in a grocery store.

Try to stay ahead on your fluid intake. The minute I wake up I drink a glass of water before getting up, then I go right to the gatorade. Some days I am so nauseated it comes back up but I just keep trying.

I feel for you girl, I know what you are going through. Don't let the fear "rule you." Dig in your heels!!!

Good luck to you.

Dawn

[MNsue]

Lauren,

So sorry that you had such a bad weekend. It is so fightning to be alone and so sick. My grandmother wears a medical alert necklace. If she is in trouble, she just needs to press the button, and it calls 911 for her. I think it is less than $25 per month, and gives her great peace of mind.

Take care,

Rhonda

[Dizzy Dame]

Thanks for the advice guys, and the reassurance. It IS terrifying being alone and so sick. Normally, I'm okay with being alone, but as soon as I start descending into that POTS hole, all bets are off. I just feel so violated when the EMT's have to come. And hospitals are my LEAST favorite places in the world...they're dirty and loud and I almost never get kind treatment, more often I get doctors who only half belive I'm sick to begin with (until they check my vitals and take a look at my ECG ).

I'm ordering a medical alert system as soon as I can. That way, even if I'm too sick to talk, I can still get help.

I love you all so much

- Lauren

[laila]

If you don't mind me asking, where do you live? I live in Bowie, MD. I was thinkging it would be nice to try to get together for a "fun support group" with people. But then maybe nobody would be able to make it! At least we would understand why. Yes this forum is a godsend. I don't feel all alone with the freaky problems anymore. I don't seem to have many friends anymore, and it's hard for people to understand. Good luck!

[Dizzy Dame]

If you don't mind me asking, where do you live? I live in Bowie, MD. I was thinkging it would be nice to try to get together for a "fun support group" with people. But then maybe nobody would be able to make it! At least we would understand why. Yes this forum is a godsend. I don't feel all alone with the freaky problems anymore. I don't seem to have many friends anymore, and it's hard for people to understand. Good luck!

I live in college park, and I'd love to get together with some other POTSies!!! Send me an email or PM.

[Ernie]

Hi,

I always carry a phone.

There is a service here also. You wear sor of a necklace with a button and if you need 911 you press on the button and they go to your house.

[morgan617]

Sorry, I have not been on the ball here lately and am chiming in late.

I am alone all day, every day except Sunday. The above mentioned ideas are great.

I have everything I need next to me by the couch. Phone, tissues, books, crosswords, remotes, etc. And a trash can, LOL. Plus bottles of water.

I get up to go to the bathroom and fix a quick something to eat. I will prepare things the night before when I am not alone at home, and then I don't have to stand around fixing something when I am alone. I also exercise my legs and things when reclined on the couch. If I was any more deconditioned I would melt I think!

When I am having a lot of arrythmias or something disconcerting, I will call hubs or a friend to talk a few minutes and take my mind off it. My hubs also calls several times a day to check on me.

So I'm not saying anything that hasn't been said. I just want you to know, I have grown used to this solitude and actually like it a little, because there's no stimulation of other people and loud things to set off my symptoms. I am glad when my hubs is home, but I no longer mind being alone. Good luck! morgan