Regaining Strength?

[roxie]

it seems like theres a wide variety of severity here. some are bedridden and some can go to tne store without a wheelchair. has anyone gone from being bedridden to to walking when you go somewhere? how did you achieve that?

[houswoea]

I would love to know this answer too! Many of my friends really push me to do things to "regain stregnth" or whatever all the time! But I don't think it works like that... doesn't it take a bit to get back up and going?

[lieze]

Well I was only bedridden for a day or two after my ablation. I could not get up and walk across the room without feeling like I was going down. I'm not sure why it hit me so hard was it the 24 hours I spent fasting? Or the procedure itself? I improved a bit in the next couple weeks but knew I didn't have the strength to go back to work yet. I went out in my robe on the front porch and kind of crumpled right there wondering what was wrong. I was so bummed because I thought the ablation would solve all of my problems. Thank goodness no more SVT's but the weakness was very obvious. So I thought it was our house. I had buried a pet mouse that just turned over one day and died and our cat all within a 3 month period and it dawned on me that my suspicion of mold was probably correct. I had my parents come and pick me and the kids up. I had trouble there too eating normally. I would have episodes after I ate and was losing weight. And just the endurance thing the ability to get up and walk around. Well for me I would just feel horrible. Never fainted thank God but this horrible wave would go through me that felt very bad, like I was going to collapse. This would also happen after showers. I would do our laundry, have to go down the basement steps and back up. My heart would be pounding and then I would carry it out to the line to hang it. Those first couple times I felt like I just had tunnel vision. My breathing was very difficult but once again, nothing bad happened. I just had to keep doing it until it got easier. Looking back I don't know that I would have pushed myself quite that hard. Because even just sitting there in the backyard in a lounger a wave would just go through me where my breathing got difficult everything would tighten up and it's as if time would stop. And then in time it would pass. Short trips in the car were difficult but they had a pharmacy right down their street turn the corner and down the road so those were my first trips. I actually had to break even that up a couple times and pull into a parking lot and break half way through. Collect myself then do the rest. I don't think anyone had a clue as to how much I was pushing it. But by doing this I have slowly worked up to being able to shop. I still get symptomatic when I go. Less difficulty with my head feeling weird these past two weeks, I get a gassy feeling in my stomach that feels horrible, I mean I just get weird feeling in my torso and up to my head just from simple gas. As that passes I'm okay. If I start feeling weird I stop and stand still a moment or just go very slow. If needed I would just sit right down on the floor. Also I've been carrying a water. I don't know if it's the swallowing itself or the cold water in my stomach but it helps relieve my symptoms it seems.

The daily exercise some activity is important even though you feel crappy.

Just laying in bed I would struggle with my breaths. My lungs would feel heavy. Once I got up and started moving thank goodness I was able, that got better for me.

I feel the drop in blood pressure like right now I've checked it and I'm only running 90/50 and dipping down into the high 80's. I don't feel so good with that. I feel much better when I get it up around 100 systolic and activity does that for me.

I would encourage you to go for it and just either try to post your success and get feedback or concerns if you are able, I'm not sure what your condition allows right now so be careful.

I just know for me it's been presyncope for me if even that. I get creepy sensations in my body like I almost feel things running or trickling like I've blown an aneurysm and I am okay.

I do not have an official POTS diagnosis and am not on any meds besides vitamins and iron.

[bellajulz]

I was bedridden for about 8 or so months and on and off since I was diagnosed in Dec. 08'. I can now on a good day walk around a store w/o a wheelchair for about 45 mins to an hour and sit up for 3-4 hours at a time. I have improved greatly, I believe it was beause even on my worse days I would push myself to walk around the house for a few minutes at a time, and increase it as much as I could. Keep in mind I am a fainter so at times this could mean just to the bathroom and back. My will to not give up and allow pots overtake me compltelly has given me the fight to keep pushing. I can now drive around town and do the simple things I once missed. I make sure to take my meds, stretch when I have the stamina and eat properly and drink lots of water. I still have days that I can't do very much, but when I have even a pea drop of energy I use it to be up and movin . This has worked for me, not sure your exact circumstance or health condition but for me it's been half mental battle. My faith in God has kept me going! Hope this helps.

[futurehope]

"push" is my middle name. Pushing has been what I've been doing for years. I noticed, at the beginning, before I knew what was wrong with me, I pretty much stopped doing a lot of things. I found that I got worse.

Anyhow, I have to use my judgment as to how much to push. I also disagree with my doctor who said "do not push to the point of fatigue." I've always needed a nap after exercise, even before my diagnosis, and for me, exercising, then napping is the way to go.

[potsgirl]

I also have to nap after exercise, which I manage about 3-4 days a week, either at the gym or at home on my less energetic days when I can't get out...I haven't been bed-bound yet, and I'm hoping to stay away from it!

[janiedelite]

I was in bed mostly and using a wheelchair when out of the house from the summer of 2008 until I went to Mayo in 2/09. My chest pain, skin pain, migraines, flushing, etc. just made it too hard to be sitting up for long. At that time, I didn't know what was wrong with me. Once I found out it was POTS, I started implementing all of the non-pharmaceutical helps (compression daily, 3-5 L/day fluids, 6-8 gms/day sodium, mild exercise, etc). I started by just walking to the end of the block and back. Now, I can walk more than a mile, I just can't stand still or sit for long.

Still, most days feel like I'm pushing a boulder uphill. And I never feel "normal." I still can't work. But my quality of life has drastically improved. I really don't think that my underlying POTS/neuropathy has improved at all. I just know how to cope with my illness better than before.

[futurehope]

I concur, Thankful. Very well said.