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I don't know why I can't get over this, but I hate being left alone during the day. I am mostly stuck in the house these days unless I want to hike 3 blocks to the bus or be brave and ride my bike, but lets be honest, im not going anywhere far on my bike.. so, I just try to keep myself busy while I'm home alone and I try not to think about it. It is so ridiculous though, that I am so afraid of being alone. I feel like I need someone with me in case something happens and I can't help myself. Not fainting as much as something life threatening. I try to stay calm but in the back of my mind I am panicked. I live with my boyfriend who has been a godsend through all of this, and there are days where he works doubles and is gone all day. All of.my friends work during the day too. So, when I start to feel bad, I just lay on the couch with the phone in my hand, but its not like I am ever going to call 911 on it. Instead, I just lay there becoming more and more symptomatic until I finally get to the point where I accept my death and the lack of control I have over my life, until I fall asleep. It's terrible.

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Sorry Lemons - I can so relate. This is a scary illness and so unpredictable. At least we can vent our fears to others here that understand. Hopefully, those here will stick by us no matter what - it's nice to have those here who can truly relate to what we're going through. It means so much more to have EMPATHY rather than SYMPATHY!

Hang In there - it may be a long haul - but, you can do it - you're a strong person!

Issie

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yep lemons! totally been there with those feelings...still get the panic from time to time but the more research and knowledge I am able to obtain that sense of unpredictability and impending doom have lessened because I know more of what to expect. It has taken almost 4 years to get there though. I think with this illness that it is completely normal. At the worst of my illness I had to have a niece come live with us because I refused to be alone. When you have these episodes is there someone you can call and at least talk to as a distraction until it passes? I found that helpful...used to drive everyone nuts but it made me feel better :)

Bren

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I know exactly how you feel with being scared to be alone. I didn't like being alone before having OH. I have friends, family and my kids periodically text or call me to check on me when I know I am going to be alone. Even my co-workers/colleagues call or text me everyday. We do checks every couple of hours until I give them the signal that I am going to be busy doing something, want to go to bed or someone is home. It really helps to reduce my stress level of being alone. I also keep the laptop close by me and pick my favorite sites like this and fb to connect with others. I know you shared that your boyfriend works doubles. Could he use his lunch and breaks to give you a call or text? You knowing that he is checking on you could help lesson the fear. Just pm me and I will call or text you if you like. :)

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I read a lot, play with my dog, make jewelry, and spend time on the computer during the day. I am fortunate that my husband works at home most of the time, though he is working away today. This is a scary illness, sometimes, but the more knowledge you have about it, the more at ease you will become, and when you realize that someone is just a phone call away, and any of us would certainly understand what you are going through on this site, as well, just know we are here for you; you are not alone. I'll pray for you, because that is how I handle everything in life! Hang in there; we all have scary times...

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I used to be scared too. Counseling helped tremendously. Not because I was crazy or even had trouble with anxiety, I just needed some extra support. It was the most important thing I did to help myself. Churches offer counseling for free :) And insurance will pay for some counselors too.

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I generally don't have an issue with this but occasionally I will have a bad period or episode that will really freak me out (fainting and then not regaining consciousness, loosing time) which usually happens only a couple of times a year. Unfortunately I don't have anyone that can be with me, so I just have had to deal with it. It can frustrate me when people in my life try to impose limits on what I do because of my health, since I often end up in situations where I could be in serious trouble on a regular basis at home, but the people I live with and other people that care about me can't be bothered to come home on time, keep in touch, or stop in to check on me.

It does keep me from moving away from my family though. I've passed on jobs because I would be a few hours too far away from family with no support system with this illness. I was particularly devastated when I got passed over for a contract renewal at my last job because the living situation was very unique (essentially living on company property nearby work, with a support staff that was responsible for taking care of regular services like snow removal and "emergencies" like transportation breakdowns, lockouts, and tracking down people not showing up at work, and a caring boss). Having that well-developed support system and people that care and are guaranteed to come check up on you would be essential for me to be able to move away from my family again. I had a horrible episode where I fell in the shower and laid there for a very long time and then wasn't ok to drive when I last lived alone, and another time when I had a dead battery in my vehicle and no one to call to help me (I couldn't walk to a place nearby, definitely couldn't carry the battery, didn't have access to public transportation, and didn't have a friend with a car to call).

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I can say, I know how you feel and am sorry we go through this. DH travels sometimes and when he's not out of state, he's working all day. I suppose at my age (middle age) and health issues with osteomyelitis around my pituitary (incurable) and my immunocompromised state (hypogammaglobulinemia) and life long history of mirgraines, being hit by a car with my glutteal muscles and tendon ripped off my hip bone/pain 24-7 (took them 7 years to find the 'reason' for my constant pain), and having no close immediately available family close by that I can rely on, if I'm having a bad day, I don't push things. I put my energy into cleaning the house or doing laundry at the 'better part of the better days' (my BP is usually lowest in the morning and night). The meds make me a bit drowsy which I don't need on top of my hypersomnia, but I consider it listening to my body. I read, play solitaire on the computer, watch a good show, nap, always must push myself to get in the fluids and extra calories.

My DH and I often 'joke' when we are both ailing at the same time (he has health issues too and doesn't want to hear me complain) that some day somebody will just walk in and find us. He works close to home, but if I call him that I was doing something and about went down--tell him the low BP, he just tells me to 'just sit down and leave it alone (meaning whatever task I was doing). I did once have to call my 78 year old mother from another town to come to stay with me for awhile (but she has family living with her that controls her every move). I had gotten up with a migraine and my systolic was only 63 and DH was out of state. Not knowing if I'd need to get up to puke or getting up to bathroom or puke to the point of needing ER, she came. But when I had surgery on both feet (in casts) and only allowed to bear weight on my heels, using a walker DH scheduled himself a trip out of state and DM never showed up (as she'd planned). I had anticipated as much and bought a big cooler with lots of ice packs, had bread, crackers, snacks, peanut butter, dry cereal, drinks all at my fingertips since I couldn't carry hot food that would spill using a walker and only walking on my heels. I recently had a stomach flu so bad that I was calling out to the dear Lord to help me (DH had been sleeping all the while I couldn't even make it to the bathroom, puking my guts out--filling 3 trash bags. He heard me and first thing he asked was 'did you take your imitrex?' (assumed I had migraine). Then he asked if I wanted him to take me to ER (no way I could get dressed and sit in waiting room long time--any movement in bed triggered more vomiting. He brought some 7-up and more bags by the bedside and left for work. I did call him later that afternoon--still scared to move lest things start again. I asked him to bring me some immodium and pedialyte. I couldn't keep 7-up down so I asked him to pick up ginger ale too. He dropped those things off. When the immodium stayed down, I took a bentyl to help with the tummy cramps. But as soon as he'd dropped the stuff off, he was right back to work.

I take spells being afraid when alone, but I know my Father is always with me. And I pray to thank Him for his love and mercy and protection--all His blessings. If a tornado hits whether DH's here or he's gone--he couldn't stop whatever would happen. I think about him being out there on the road in that stuff. Sometimes I'll take my cell phone and put it under my pillow in case of an intruder--giving me time to hide and call 911. Whether I'd have time to do that, I don't know. I rather doubt it (but I'm sure it'd get my BP up).

I was in the health care profession for over 25 years and I think the good Lord has blessed me. I could always look around and see people far worse than myself. And I keep that same attitude. If I go to whining (by e-mail) to my DS who lives states away, she will always remind me that which does not break us makes us stronger.

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I know how you feel. Two things that make me feel a little better when i'm home alone are my pets (not like they could really do anything but they are comforting to have around me :)) and my mom let's one of our neighbors know if I'm really bad off that day and she needs to go out. Do you have anyone near by that could check on you sometimes or that you could call if you needed someone quickly?

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I know exactly how you feel. I went through the exact same stage. Mine was triggered when my POTS got worse and I was having all these abnormal bizzare symptoms unlike anything documented in POTS. I was developing hyperthermia suddenly during the day and my heart would become irregular and I haveing episodes of SVT (Supraventricular Tachycardia) severe nauseau and it would randomly hit me at anytime. I was finding myself suddenly having these severe symptoms whilst driving my car and I would have to pull off to the side of the road and just wait there for it to settle so I could recover eneough to drive to the hospital ER. Few times I called the ambulance and eventually these episodes started to take its toll on me and I got the point where I could no longer be by myself.

I had to ask my parents to take me wherever they went or vice versa. I could no longer be at home bymyself but at some point I decided to substitute my parent's company for the safety of having a mobile phone on me at all times.

Edited by corina
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