Starting A Bad Habit...

[Nikki]

For the past few months I've been really out of it. I have really bad dizziness. Some days are a little better than others, some days I can hardly walk around the house. Lately though, I'm trying to push myself to do more things on the days when the dizziness isn't terrible..but it's hard. I find that if I'm around the house, not feeling good, I get in the habit of just staying in. Even when I'm a little lightheaded, I'm afraid to go somewhere thinking what if it gets bad and I can't just lay down somewhere? My house has become my little..safe place, and I know that's a good thing, but I don't want to feel like I have to stay in all the time. Has anyone ever felt this way? What did you do to get yourself out of that cycle?

Today, I'm going to try and attempt to surprise my fiance. He's been living in the same state as me for awhile now (we were in a long distance relationship for 2 years) and I've never been to his apartment. He's fine with coming to my house and staying with me. Of course he'd like me to go see him but it's never been a real issue. He's very understanding. I'm just kind of nervous. It's an hour car ride (which can feel like a LOT longer when you're already dizzy to begin with). Plus, this might sound weird since it IS my fiance I'm going to see after all, but I'm just used to being at home and comfortable where I'm used to being.. and I can lay around in lounge clothes and just doing nothing if that's how I have to get through a bad day. So I just feel like what am I going to do if I have a terrible day and I'm not at home?

I know these are crazy thoughts..and you can't live your life saying 'what if' all the time. Especially over the small things..but I think I'm starting to worry about everything all because of how I feel. It's really stopped me from a lot and I don't want it to anymore.

Any advice?

[dakota]

I suppose the mom in me feels the need to comment here. I appreciate your desire to want to get out of the house, not to become too comfortable just staying home all the time. But I'm thinking that driving for an hour while you might be dizzy is just not a good idea. Maybe you could do something special for your fiance at your place. Make a special dinner, maybe. You could get out by going to a store and buying food, maybe a specialty food store that you don't normally go to, just to be getting out of the house and going somewhere different. I'm also thinking that you could be worn out by the long drive. I think possibly shorter trips might be a better way to get out of the house more. My daughter is very interested in photography, so she gets out just to take pictures. Maybe something like that would interest you.

You may have already headed off, and if so, let us know how it went!

[Jan]

Since you said car RIDE I will assume you are riding and not driving.

I vote, go for it. I find that when I get out, I feel better. And if you don't feel well, you can feel just as bad at his place as your own. He sounds like he will understand.

Yesterday, I had to run a short errand. I was a little dizzy walking around but I usually feel fine sitting when driving. I thought about the way I felt, and if I had felt that way when I first got sick, I would have stayed home. And I would have had terrible anxiety if I had gone out. And I would have been fearful, feeling that way walking around a store.

I started thinking that maybe I am not really getting better as much as adapting. I used to be afraid to leave the house and like you, felt really comfortable at home. Now walking around a store feeling dizzy and disoriented is normal for me.

One doctor at the Mayo Clinic asked me if I could walk very far. I said that it made me dizzy, so I usually only walk short distances and around my house. She told me that I needed to walk farther, and that I needed to retrain my body. That hit me like a ton of bricks, because I was limiting myself, and as a result, my world had gotten quite small.

The more things I did that I was afraid of, the more things I was willing to try. The body really is good at adapting.

[futurehope]

I hope you are not the driver for 1 hour, but the passenger? I would never drive for that long.

But, I have to agree with Jan. After having this condition since at least 2002, I've adapted. The more I "try" to do, the more I do. I've learned that it's okay not to feel perfect, even if I'm away from home. I've learned how long I can be vertical before problems set in, not to eat too much at one sitting, to add salt to everything, to forego the desserts at someone else's house so I don't get palpitations, to rent a scooter at an amusement park, to use a seat cane, etc.

You learn to cope and to expand your life despite this ailment. Once in a while it's good to forget your limitations and to take a risk.

I remember very well feeling like you in the beginning. I was scared and severely anxious much of the time because I didn't understand what was going on with me. But, I can tell you, after all these years, I can handle many more things without totally flipping out. If you have a loving fiance to accompany you somewhere, great.

You will still live your life within your "new normal" capabilities. We're here if you need to ask any questions.

[ramakentesh]

When i read the title of this thread I was wondering what the bad habit was...

But I know where your coming from, but as you start to feel better hopefully not only your strength but also your confidence may improve

[tinkerbella]

do whatever you heart and body tells you is best.

I can't go beyond an 1/2 hour or I'm done in for days on end.

listen to your body, it will tell you the answer.

A long trips I have no control over as they are to doctors on buses and in

cabs all alone. I feel dead this morning from a day long trip into the city.

I've been up and in the shower trying to wake and renew my sore and sick

body this morning knowing I have so much to do for Christmas. Now I think

I have the flu and as soon as my tea is brewed it's back to bed for me and

the pooch.

Good luck, maybe you could go somewhere 1/2 way and see how that feels and

maybe go further next time.

You are blessed to have someone in your life to be there with you. Many of us are

alone and the holidays are the hardest times of all to get through.

Be well, be loved, be happy~

bellamia~

[Guest tearose]

I understand your dilemma and think you should bundle up, pack emergency POTS supplies and make the trip. Stop every time you feel fatigued and rest a little and then continue driving. Once you make a goal and break it into small parts and then go and achieve it, you feel very "whole" again. I think you will feel worse if you don't try. I know a basketball quote that is appropriate for this "You miss 100% of the shots you don't take".

Go for it!!!

I am streaming you strength as you go to see your sweetheart

tearose

[persephone]

I still find it really hard to understaand how you guys with POTS get insured to drive over in the US.

Over here, you have to go six months or a year without a single pre-syncopal episode before being allowed behind the wheel.

If you are at risk of fainting, you simply can't drive.

If you drive and something happens, your insurance will be null and void unless you can prove that fainting isn't an issue, and nor is a brain fog/cognitive impairment issue.

I've been learning to drive and was doing really well but had a relapse this month. I have now had to put my lessons on hold. I don't feel well enough. I couldn't live with myself either if I passed out hor went dizzy at the wheel and really hurt somebody.

[Tammy]

It is a bit different in the US, and you are right, we all need to use our own common sense/judgement in when we are able to drive and for how long of distance. However, I know of more people who are killed or injured in accidents by people who have no health issues, etc. Accidents are accidents. I don't think that a state/country can tell if a person who is healthy is going to accidentally cross the line and cause an accident any more so than someone who is aware of their illness and makes good judgement calls as when to drive. There was just an accident in our area that a 17 year old boy, who wasn't drinking, didn't have an illness, etc., drove the wrong way at night and killed a grandma, daughter, and grandchild. Very sad and again, accidents happen at times even when illness don't play a part in them. Just another way of shedding light on this view point.

[tinkerbella]

It's the same way here. you faint and hit the floor you lose your liscence for 6 months, You doctor should be making sure that you are not fainting during that time period. By law they have to report it to the registry of Motor Vechiels. Then it is up to a person to report medical conditions/ meds that would impair their driving. my arguement was If I had to stand like fread flintstone to drive I'd be in trouble.

I don't drive right now due to exhaustion from treatments, doctors appoints, night blindness, and I can only drive about 1/2 hour and I'm done for the day. I'm very sad that I have lost my independance. my cabs are shared rides, which drain me totally, bring on unnecessary stress that flares my pots even more. here it is Christmas and I have no ride to be with my loved ones, they are going to their dads who lives in my town. yet my family invites him to all our family events. tonight i'm so angry that i don't drive as i'm still young, but have no where to go. top it all off I now have the flu. SO, i'LL BE HOME FOR CHRISTMMAS

ALONE! Sorry I had to purge a bit there. I guess I'm feeling down about a lot of things.

bellamia~

[Nikki]

Thanks for all the comments guys! I was definitely just riding in the car, not driving. I don't have a permit or license because of the dizziness. I had my permit for awhile - but it didn't go so well. I did end up going this weekend and I'm glad I did. The ride there and back was difficult and I'm definitely paying for it now (I feel like I'm on a constant boat ride today lol) but it was definitely worth it..It was a good weekend aside from the occasional dizziness while I was there but I'm still really happy I went. I basically did the same thing I do at home..When I get a bad spell, just lay down till it passes. I do think on the days I feel better, I just have more confidence and feel comfortable doing more. I hope I continue to have more days like the past few.