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I'm So Bummed!


Tammy
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Hi! Ever since seeing the post about how most people with POTS can walk and walk, I've been feeling so bummed. I had always thought that most of us where unable to do much and walking was included in that. Now I'm not sure where I fit in and who really understand what it's like to live being homebound and confined to a recliner/bed most of the day.

Sorry, just feeling really alone in this.

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Don't feel bad, we all have our limitations. I was home bound for the last 10 months, without being able to make it out my doors w/o fainting. Though now I am able to be out more, walking for long distances or shopping w/o my wheelchair is out of the question... I just think our bodies may be on their own time tables and we can do what we can when we are able ... dont try to push yourself or feel bad... just do what your able to, remember stress holds us all back too, so the best thing that worked for me was to be creative in entertaining myself while I wasn't able to leave my home. :)

Happy thoughts!

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Tammy,

While I am not totally housebound, I have been losing more and more mobility and independence in the last six months or so. I can't walk very far at all, and need a cane if going more than just a few steps. Some days it seems like just getting the mail is a major victory. I try to stay focused on what I can do, and forgive myself for what I can't. Hang in there!

Sandy

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Hi Tammy,

I can walk around now, as I wrote in the topic on walking (just not standing), but for 4 years starting 7 years ago I could barely walk at all. Used the furniture a lot to get around the house. sometimes crawled (gee things are looking up, haven't had to do that in quite a while) and whenever I had to leave the house (usually for a doctor's appointment) I was leaning on my husband or big son.

I still am not completely trouble free in my walking but am much improved. It used to seem to me if I was in the small percentage of people who get POTS why wouldn't I be in the small percentage that never get well/or well enough? But I'm finding I am getting better in some ways which encourages me to think I will be better in all ways -- eventually.

smiles to you,

blue

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Tammy,

Don't feel alone. Since January, my wife has not been able to leave the house for anything more than a doctor visit. In that time, she has varied from being able to walk around the house and take the dogs out in the yard unassisted to needing a cane to get around and needing me to come home in the middle of the day to walk the dogs.

True, her mobility problems are not as bad as yours currently are, but we got very close there for a while and I've seen others on here who are in a similar boat. Everyone's on a spectrum of symptoms and sometimes it can feel like you're the only one feeling bad right now because people come here to share their victories as well as their problems. If nothing else, this forum as reassured me that my wife and I aren't alone in this and that the adjective "typical' really can't be applied to this sort of disorder. Hopefully you can take that same reassurance.

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Tammy -

Boy, you are not alone. I can't walk and walk..some days I can walk some but some days I am really bad off. I am always pretty well sick by 2:00 pm...sometimes earlier. can't really do a thing but recline. I don't really ever feel "well" and if I feel ok it is a miracle!! I get so happy. I have rested all afternoon so I can try to go to my daughter's cheerleading this evening. I may not make it...but for me it is activity based. It is like I have an energy jar...it doesn't matter how I use it, I only have so much. Then I will have my sick spell and my body will have to lay down...can't even talk.

I was thinking of you describing your feeling so weak and ill in one of your last posts and I thought how perfectly that describes my life. I think that I have been sick a year now and feel so frustrated. But you are not alone.

Erika

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Hi Tammy,

You definitely shouldn't feel alone - I think we all have major limitations, but they're just in different areas at different times. While I can walk around most of the time, I lose energy after about two minutes and need to lie down again. it doesn't mean I'm incapable of walking, but I would say that means I'm incapable of "going for a walk." We all have limits on different things; some days/weeks I can't even eat. And like Erika said in the post before - I go through periods where I can't walk, move, eat talk. Obviously if there was emergency and I needed to get up and use a phone I could, but at great and long lasting expense to my body.

Janey

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I use to have a great deal of difficulty walking anywhere. I barely left the house. Stores were a nightmare for me.

When I went to the Mayo, they told me I had to retrain my body to be upright. That instead of avoiding walking, I needed to do it more.

That was a huge wake up call for me. I realized I was avoiding walking.

The idea of retraining my body was actually a positive thing for me. It felt like I could actually DO SOMETHING to help myself. My body was no longer the enemy, but my partner in getting well.

It took years of baby steps, but don't give up and think you will for ever be home bound. If there is anyway possible, go swimming, or get an exercise bike or do leg lifts etc.

Don't give up and think that you will not get any better. Many of who were in your shoes are now able to have a sort of normal life.

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