Why Are You House Bound?

[ana_22]

Since I have got POTS I havent really been able to leave the house much, apart from dr's appt. Mainly because if Im walking for too long (5 mins) i get light headed and dizzy and feel as if though im going to faint (although i never have) and ussually get tachy.

Because of these bad experiences, i avoid going out. But sometimes i wonder whether i'm being to soft. Should i persist? should i go out even if its for a couple of minutes (ie. accompanying someone to the store)

Just wondering why other people don't go out?

thanks

hope everyone is doing as well as they can

[carinara]

Before i got diagnosed with POTS, i used to push myself going to places most of the time. I felt so sick, dizzy and lightheaded that it was a nightmare almost all the time i went somewhere. After i got diagnosed last year, all of a sudden i understood what was happening with my body. This knowledge and the experience of the past 10 years of suffering and learning how my body reacts in certain circumstances allowes me now to go out regularly. When i have a real bad POTS flare up and iam bedridden (which happened 3 times in the past 10 years). I of course cant go much places. But even then i try to do something outside of the house every day. Like somebody carying me to the car and driving around for a little while. Now my body got a little bit in balance again. I still cant stand longer than a few minutes without getting dizzy, and i do have to watch every little thing i do in order not to provoke my body to go crazy. When i go out now i make sure i dont have to walk for longer than a few minutes. Most of the time if i go somewhere, somebody is with me anyway. that means, that i can always get out of the car in front of where i have to go! I just try to sit as much as i can and make sure that i dont overdue the walking bit. Thats how i hold my job down as well. Sometimes i get so excited because for example i see something in a shop, that i just stand and walk to look at things, and most of the time this does provoke a big time flare up were i have to lay down in the car and wait for hours before i can get up again, but most of the time i just try to sit and walk for a few minutes and sit again. I sit everywhere if i have to like. on the street on the floor, i dont really care anymore about what other people say. As long as i know there is a place for me to sit down i go almost everywhere. I have my little fan with me i case i get to hot, i have an extra BB with me in case my heart goes mad and i always have my mobile phone with me.

all the best for you

carinara

[Ernie]

Hi,

I was homebound for 5 years because I would faint without notice at least 3 times a week, when I was at my best, and every time I stood up when I was at my worst.

When I got my powerchair it gave me wings. I started to go out every day and felt so good about it.

When I fainted in public I was immediately sent to the ER and I had such bad torture experience that I avoided most situation.

[Rachel]

I'm not able to leave the house on my own because of fatigue and weakness. I go out only when my husband or a friend is able to take me, and they push me in my wheelchair.

I think it is good to get out of the house when you can, even if it is only a quick trip to the store. There are ways to work around the difficulties. A seat cane or a walker with a seat could be a good help for you. If a line is too long, you've then got your chair with you. If you want to go to some place that would require more walking than you are able to do, a wheelchair is a huge help.

I usually get out of the house once a week. At times I even go out when I feel awful. Sometimes you just need some fresh air and a change of scenery! When I'm out I'm not always able to continue sitting up in my wheelchair, so I just lie down on the floor (or a bench if there is one nearby). I have used floors everywhere - while shopping, during church, while visiting friends, at restaurants, and even during a wedding reception. I have rested on the floor of a quiet aisle in Wal-Mart, and I have taken a nap under the reception table at my brother's wedding! I have no pride anymore! I used to be concerned about what other people would think, but I got over it. I'm living life and enjoying it.

I hope you can find whatever helps you need so that you can be out and about sometimes.

Rachel

[momofsara]

Sara is almost totally housebound because of her extreme fatigue and near syncope. She struggles sometimes just to get to the car for doctor appts. If she stands/walks much, it really takes a toll on her. Usually after a doctor appt. she is bedfast for at least one day afterwards, sometimes more. Sitting in the waiting room is awful; her PCP office has even worked out a plan with us where we just wait at home and they will call us when its almost time for her to be called back. Luckily, she lives close enough that it only takes us about 10 mins to get to the office. Usually when we get there, they just take her on back and let her lay down on the exam table. Shopping is a thing of the past for her. I'm giving serious thought to getting her a wheelchair just so I can get her out of the house sometimes. Anyways, thats our story...

Best to all and gentle hugs---

Susan

[tsampa]

at the begining i could not go out of my home.

and when their found that i had pots and they give me medication i try to.

first i take a well chair. I had training me every day to walk a little and day to day I could do more.

I was ill until 10 years but every day I training me to walk or run a little more. now i could run 15 minutes. for me it's a miracle to do this.

but these time i'm not so good i must surelly go to the hospital to take away my vesicul bilaire. I'm afraid to loos all the effort i do.

[MomtoGiuliana]

For several months I was unable to leave the house (except for dr appts) due to extreme fatigue and weakness. I was also often dizzy.

I found that going outdoors in my yard and getting fresh air helped emotionally even if it didn't help in other ways, even when I was too sick to go anywhere. I don't think it is a good idea to push yourself when you are so weak that sitting or walking from one end of the house to the other is an effort. However, exercise is important for recovery. It must be slowly stepped up however.

Hope you see improvement soon.