gjensen Posted August 14, 2014 Report Share Posted August 14, 2014 But it was too much. Quote Link to comment Share on other sites More sharing options...
Bigskyfam Posted August 14, 2014 Report Share Posted August 14, 2014 Totally get this. Sometimes 2 extra minutes on the recumbent did it to me...or a tsp les of salt. Quote Link to comment Share on other sites More sharing options...
gjensen Posted August 14, 2014 Author Report Share Posted August 14, 2014 Mid way, I was wondering if I was going to get back. LOL. Every step was precious. Quote Link to comment Share on other sites More sharing options...
corina Posted August 14, 2014 Report Share Posted August 14, 2014 Good for you! Now all you need to learn is to find the right balance (which I'm trying to do for well over 10 years ) I feel that walking is what helps me most so I'm trying to go on small walks every day (that is if I can find someone in my family to join me!) Quote Link to comment Share on other sites More sharing options...
Goschi Posted August 14, 2014 Report Share Posted August 14, 2014 Wow, Gjensen, Congratulations!!!However - please don't get me wrong, I really don't want to make you feel insecure - just be careful not to overdo it!!I have made not so good experiences, when I tried to extend my walking range very quick from day to day this February/March.Listen to your body! - And everything will be fine!! Best wishes and good luck!! Quote Link to comment Share on other sites More sharing options...
AllAboutPeace Posted August 14, 2014 Report Share Posted August 14, 2014 Gjensen: Yikes! It sounds like you need to slow down a little You are in the right place for empathy about this though - we understand the need to push and want to do something normal. I had to abandon a short walk yesterday, too. I started out walking on the road, but had to come back on the grass. If I'm going down, I prefer the softer landing. Lol.Have you tried shorter walks, a few times a day to build up your endurance? When I first started 'retraining' my body for activity, I found I could do two minutes on the recumbent bike without having a setback, so I did that a few times a day, building up to five or six times. It sounds like nothing, but I always felt it was better if you could avoid putting your body in recovery mode. Then you can still function for the rest of the day while building up endurance at the same time. Also, I noticed that my tachy was lower for a period of time after biking, so more times per day meant less tachy overall.Corina, I find walking helps me the most, too - as long as I have the right speed, the right distance and none of the neighbours come out to chat. Lol. I love my neighbours, but I really don't like to see them coming when I'm walking. Lol.Goschi, trying to extend my walking time by even a few minutes results in a crash as soon as I stop moving. So I relate to what your saying. It's slow and steady for me. Quote Link to comment Share on other sites More sharing options...
looneymom Posted August 14, 2014 Report Share Posted August 14, 2014 I'm sorry you over did it but you have bragging rights. Way to Go! I was told by many pts that walking was the best exercise for Tyler to do. When he was able to walk, he was able to do it M-W-F. He rested on the weekend. He could only walk for about 10 minutes before his leg tremors would start. The tremors would just get worse the more he tried walk past that 10 minute mark. Quote Link to comment Share on other sites More sharing options...
corina Posted August 14, 2014 Report Share Posted August 14, 2014 Haha Peace, I am just like you and actually telling anyone who wants to chat that I can't do that and need to walk on but they are very welcome to come see me afterwards at home!When I can go out (not on a daily base atm) I have someone accompanying me as I can't be trusted on me own right now When I'm doing better, well enough to go on my own, I always carry my cell phone (and water and something to eat). I have an ICE number in my cell phone Quote Link to comment Share on other sites More sharing options...
gjensen Posted August 14, 2014 Author Report Share Posted August 14, 2014 Everyone that knows me knows, if you want to talk, you better get stepping. Corina, that is a concern of mine. Where I am walking is off the trail, and I have the "dad, look at this". If I needed help, it would take a bit for someone to find me. The boys would have to go get someone. The cell phone is not working well there. I will be careful. I guess. Yesterday was a reminder to back off. It is 1200' to walk back and forth across my yard, and I have been doing that for a while. Earlier, I could not walk the yard, or even out into the yard. I am going to back off a little, but keep plugging at it. My real problem is moderately heavy labor. it takes very little to push it way too far. That can trigger some spasms relatively easily. I do not know what the difference is. Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted August 20, 2014 Report Share Posted August 20, 2014 How's it all goin buddy? Quote Link to comment Share on other sites More sharing options...
gjensen Posted August 20, 2014 Author Report Share Posted August 20, 2014 I pulled a couple more off, but tempered my expectations. We will be here in the high 90s for a few days, so I will keep it to my yard walks. Mayo is saying that I need to temper my expectations. I do not get the encouragement to exercise and the advice to limit the exercise. The vasospasms have been giving me fits. We upped the dosage of CCB, but I quit it pretty quick. Anymore, and I could not crawl anywhere. Mayo is adding a Statin, Lipitor. The idea is that it improves endothelial (sp?) function. I have not started it yet. Maybe tonight. I never look forward to a new medication, and the potential reactions. If I could get a grip on this, I could possibly be much improved. So much of what was giving me the most grief is not as bad. Right now the spasms, and associated arrhythmias is the big problem. I tried to cut a couple stumps (very 3"/4" small stumps) with a chain saw. It only took a couple minutes. It had my HR soaring at 200 and whatever else was going on (spasms?) was not good. I do not understand the reaction to minor exertion. Is that normal for POTS? That is a complete update, I think. LOL. I appreciate that you asked. How are things for you? Quote Link to comment Share on other sites More sharing options...
blueskies Posted August 21, 2014 Report Share Posted August 21, 2014 Hi gjensen,and I agree, you do have bragging rights. Distance is great but I think you are right to back off a little, especially in the heat. And walking where you have good cell reception is also a good idea. I would take my mobile phone in the water with me if I could, lol. I sometimes feel like ET in my determination to be able to 'Phone home' should I need it.blue Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted August 21, 2014 Report Share Posted August 21, 2014 Gjenson,I don't know about all pots patients, but your HR increase would be typical, or normal, for me. What is your resting HR when upright usually? When do you go back Mayo and which location? Just curious because I might have an idea for you. I'll send you a PM if it's in Rochester.I think it's great that you are continuing to make progress. "Tempering expectations" is something I've heard a lot with doctors in about 100 different ways. It's not easy to do and it's such a difficult balance with fighting your own expectations and those of which a physician has given you. It's a constant internal struggle for me and I really am very much harder on myself than anyone else is.Anyway, I'm getting ready for 2 big appointments today with the Epilepsy Specialists. It's a mini road trip so there's a lot weighing on my mind right now. I'm following up from my inpatient long term monitoring that I completed at the end of July. I'll post something when I have some concrete answers. I am no longer seeing my doctor who was 1 of the 2 handling my pots. It's been really difficult around here this past month but things will hopefully settle down in the next few weeks. Thanks for asking. Take care!!Sarah Quote Link to comment Share on other sites More sharing options...
gjensen Posted August 21, 2014 Author Report Share Posted August 21, 2014 Sarah, I would like to know how your appointments went. I do not know that I will go back to Mayo, and it was Jacksonville. I have a cardiologist there that is helping me try to manage the vasospasms. My resting HR is excellent, and if I am relaxed it is 58-62. Sleeping 45-50. Upright is from 95 - 140. Some 170s, but the CCB has it tempered and I am not seeing it above 125 often. The highest orthostatic tachycardia recorded was 220, but that was early on. I do not know if I have expectations anymore. I guess I do what this lets me do. I am trying to figure out what it will let me do. Obviously it will let me go for walks in spells. It does not seam to let me exert myself much at all. Quote Link to comment Share on other sites More sharing options...
gjensen Posted August 21, 2014 Author Report Share Posted August 21, 2014 Hi gjensen, and I agree, you do have bragging rights. Distance is great but I think you are right to back off a little, especially in the heat. And walking where you have good cell reception is also a good idea. I would take my mobile phone in the water with me if I could, lol. I sometimes feel like ET in my determination to be able to 'Phone home' should I need it. blue I will keep trying. Fall will be here soon. It is good for me to get outdoors, and good for my sons to do that with me. I hope that as the years go buy, I will be able to do more. Like all of us. Quote Link to comment Share on other sites More sharing options...
blueskies Posted August 21, 2014 Report Share Posted August 21, 2014 Hey Sarah,I hope your appointment goes well.blue Quote Link to comment Share on other sites More sharing options...
gjensen Posted August 24, 2014 Author Report Share Posted August 24, 2014 I did 2 1/2 miles yesterday. but it was a bad night for spasms. Today, I have been semi active outside most of the day (with breaks). Other than first thing this morning, no spasms today. We will see what tonight brings. Quote Link to comment Share on other sites More sharing options...
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