Scared to go out or do anything!

[katcanny]

Hi all,

I have been diagnosed for nearly a year and I haven't been anywhere except for doctors, specialists or hospitals. I'm really scared to go out and have to leave or have a moment and feel really bad. I feel like I'm not living, I can't take my son anywhere or do anything with him. I'm scared all the time. I've had bad thumping in my chest last night and today it stops me in my tracks and feels like my heart is going to burst and it scares me to the point where I don't want to do anything. I don't want to go to hospital they won't do anything for me there anyway. I just hate being scared all the time to live.

any others stories much appreciated xx

[Jim67]

I'm scared to go out too. In case I overheat or faint or in case something happens which I'm not aware of.

All I can do is try to accept what's happening to me. 

 

[yogini]

I am better now. Looking back I was more scared than I needed to be. It is important to be cautious but also important to push yourself a little, Yes activities triggered my symptoms, sometimes a lot. I didn't wind up in the hospital. Sometimes I had to sleep or rest for a few days. No activity made me permanently worse. And It was always worth it. 

Also practice helps. Go to a neighbors house for 10 minutes or run quick errands to build your confidence.

[MomtoGiuliana]

I can relate to feeling this way.  When I had severe symptoms I was mainly homebound -- only leaving for dr appointments.  It is scary when you feel quite poorly and you could have disabling, severe symptoms at any time.  I agree w yogini about pushing yourself a little.  Unless driving or other activity would be unsafe of course.  I found I felt best in the evening and worst in the AM.  So if I was going to try to do anything I would try to plan for later in the day.  Also, it was helpful to keep hydrated and bring fluids with me.  I tried starting small, with just a short walk in my neighborhood each day.  For many of us, too much sitting or lying down doesn't help with recovery.  In retrospect for me too, I wish someone had encouraged me to push through symptoms a little more than I did.  These days when I am more symptomatic I do try to push through more than I used to when I was first diagnosed.  It's good to talk to your doctor too about your specific situation and what activities are safe or advised (eg if you are fainting, you want to protect yourself from injury).

[jknh9]

I can relate to this, too. It still comes and goes for me. I certainly push myself and have done so in the past. This helps immensely, because in the future you can look back and think, "Well, if I did ___, I can do this." I also wear a medical alert bracelet with my DX, med, and ICE information. I don't know how much it would help if something actually happened, but I feel much more confident when I'm wearing it. 

[Clb75]

I've had severe pots for about 4 years now, and have been housebound this whole time. Dizziness is my worst symptom, I don't have much upright time before it starts and I have to lay back down. It interrupts everything and I'm unable to drive because of it too. If I do leave the house I try to plan as much as possible. I'm the opposite of a lot of people in that I'm best in the mornings but fade and get worse as the day goes on. So I plan activities or doc appointments in the mornings. I have enough time in between to lay down and rest, conserve energy and not feel dizzy if I have to do something else after. If I'm going to a new place, like a doc's office, I call ahead and see how far is the walk from the lot to the office, where are the bathrooms and what is the seating like. I can't sit upright in a chair for very long because of the dizziness so knowing what type of seating they have is important. 

I've also found trying to find a new way of doing old things has been helpful.

I have a young child and like you said, I can't go anywhere or be very active with her. Instead I focus on the things I can do, which are passive things while laying on the couch such as reading, coloring, puzzles etc. Driving has been a huge challenge so I hired a caregiver who drives me to appointments, helps with errands etc. If she's not available I've even taken uber when in a bind.

as far as pushing through symptoms, for me it's a fine line between doing enough so you're not worse but not too much so that you're in bed the next day or two recuperating. Exercising on a recumbent bike helps me a lot, if I don't do it then I'm dizzy immediately when upright. I started doing some treadmill work. It's very slow, but I'm now up to 30 minutes one day a week. If I do it more, I end up in bed for the next day. But, the fact I'm able to do it at all is something I never thought would be possible so I'll take it. 

Hopefully you can find something to help manage your symptoms a little better.

[katcanny]

Thank you so much for your replies everyone!! It has made me feel a little more normal! I try not to be still for too long I manage to get to work most days but we have a nurse on staff so I know I am safe and they know about my condition. When I'm home I force myself to clean the house from top to bottom which can take up to 4 hours on and off resting here and there. But I feel that the outside world is so scary at the moment I might try and go for a little walk. My confidence in my body is at an all time low before I got sick I was walking 8 kms a night and loving life always out with my son, going for dinners,  working back just to help out now I feel it has all been ripped away from me. I struggle to get up and make a school lunch. I think it's a big worry of mine that I don't want to scare or embarrass my son if something happens while we are out and I have to leave or have to call an ambulance. I really just want to go back!! But I guess everyone would if they had the chance.. I can't be thankful enough though for the support from everyone here. Having others to talk and listen too who understand makes you feel human again.

[Mapo1964]

Wow.  This is happening to me as well.  I don't understand it.  Sometimes I wonder if I'm thinking too much.  Have I always had POTS?  Yes.  But the difference is, I didn't know.  I just accepted the symptoms and carried on.  Worked full time, raised my kids, traveled constantly, hiked, never afraid of anything.  

Now that there is a name?  I'm afraid to get out of bed.  Afraid to leave the house. Afraid of losing my job.  Afraid of never getting better.  Afraid that I'm afraid.  Afraid of the symptoms that I had all my life.  Afraid.  

Its awful.  I feel there is a block and I don't know how it got there or how to get rid of it.  I hope for all our sakes, the fear will leave.  

[Lemons2lemonade]

Having some fear is very normal, I just decided if I was going to die, there really is no good place to do it so I might as well be out doing something...just as long as it's not an activity that can hurt anyone else

[Lily]

Perhaps you should talk to your doctor about managing this fear.  

[Irunwithscissors]

On 10/10/2017 at 4:27 AM, Lemons2lemonade said:

Having some fear is very normal, I just decided if I was going to die, there really is no good place to do it so I might as well be out doing something...just as long as it's not an activity that can hurt anyone else

I read your post from I think maybe 2012? About just living your life regardless. I so needed your words today!! So today I shall make lemonade 🙏🏼 I think it could use a repost it really struck a chord with me.

[Margaret]

Reading Jim’s statement on anhidrosis was like i had written it myself. I’m miserable scared frustrated i don’t know what to do. My neurologist acts like she doesn’t know what I’m talking about. I can’t even wear long sleeves or jacket in the winter. I have to sleep with no heat on and a fan on. Someone please help me.

[HangingByAThread]

Margaret, have you seen any specialists besides the neurologist? (Like an endocrinologist or dysautonomia specialist?)

[yogini]

I think it is a very rational and normal fear, especially when you first get sick.  The way to conquer it is to become ore active.  Go out somewhere with a family member or friend for a short time.  You will come back home and notice your symptoms.  Keep doing this and it will get easier. and you can go out for longer periods  Soon you will be too busy enjoying yourself to notice your symptoms. You also learn to pick and choose which activities are worth having symptoms for.

[katcanny]

Thanks for the advice Yogini

i find that when i am on my own i am a little more confident but if I’m with my son I am really concerned because I don’t want to get symptomatic and scare him. I manage to get to work everyday lately but we have a nurse on staff so I’m safe there which is nice to know.