Deconditioning is not an option.

[WinterSown]

PT asked for a script renewal. No problem--half hour later it was on its way; I called the neuro and her office is mailing it right over, and I don't even have to come in for a visit. Everything in dysautonomic life should be this simple.Sigh. I've now been in PT continuously for over a year. I don't trip or collapse as I did because I am strong enough to hold myself up and I am beginning to experience more energy, but it didn't knock out my symptoms. I can withstand them much better and so I don't have to go lay down as much or for as long, most times I can get up faster. I love going to PT, I come away feeling better perfused and, of course, much better toned--it's a win there. After a year I'm still chasing remission but I know it's long distance and not a sprint. I don't want a cane, I don't want a rollator or anything with wheels and a seat; I just want to be flare free. I can walk a little wonky at times but I'm not collapsing--that's definitely a win. To celebrate my year of getting stronger I am treating myself to a new steel water bottle and some cropped leggings. I may go crazy and get a PayDay Bar for the salty goodness of it. Woot.

 

 

[Guest KiminOrlando]

Congratulations! I want one of those water bottles too. I have seen them everywhere. Do they really work? I lug around and reuse a plastic one. We should have dysautonomia awareness water bottles. Wouldn't that be awesome!

You earned that Pay Day bar. 

[WinterSown]

23 minutes ago, KiminOrlando said:

Congratulations! I want one of those water bottles too. I have seen them everywhere. Do they really work? I lug around and reuse a plastic one. We should have dysautonomia awareness water bottles. Wouldn't that be awesome!

You earned that Pay Day bar. 

Thank you Kim. I love the new steel bottles. They insulate just like an old thermos but without the breaking glass liner. I drop everything twice so I need unbreakable stuff--the steel bottles are very nice for that. I had bought Hubs one for work and he loves it. They really do keep water ice cold for several hours. They can also be used for hot beverages, I'm looking forward to a bottle of hot  mint tea when it gets colder.

I like your idea of a DINET water bottle. 

[green]

Glad to hear this!

[Pistol]

Way to go @WinterSown!!!! I too benefit from exercises, I had PT at home for 6 weeks last year and they showed me what exercises to do when I am good ( walking/standing ), moderate ( sitting ) and when I have to stay lying down. I also do weight lifting for my joints everyday ( well - almost!!! ) and core-strengthening exercises which I do whenever I feel like I have some energy to spare. When you do exercises that are good for you they actually can GIVE us energy, not rob us of it!!  I applaud you for always encouraging staying active - that is the key to combating the disability part of dysautonomia!!!!  

[TCP]

Well done! You sound as though you definitely getting there and I know from talking with other people that it takes time. You're doing the right thing and I wish you well. I know the mantra seems to be 'work on the core'. I would like more help with exercises as I am doing most of mine at home. I was supposed to go to physio for the EDS, but POTS hadn't been diagnosed then and I felt way too unwell. I need to step up and do more and I hope to after I have my pituitary tumour removed. 

Take care! 

[WinterSown]

19 hours ago, Pistol said:

Way to go @WinterSown!!!! I too benefit from exercises, I had PT at home for 6 weeks last year and they showed me what exercises to do when I am good ( walking/standing ), moderate ( sitting ) and when I have to stay lying down. I also do weight lifting for my joints everyday ( well - almost!!! ) and core-strengthening exercises which I do whenever I feel like I have some energy to spare. When you do exercises that are good for you they actually can GIVE us energy, not rob us of it!!  I applaud you for always encouraging staying active - that is the key to combating the disability part of dysautonomia!!!!  

Thank you Pistol. I just got back from walking the dogs, came in and was feeling a little depleted; I had a cup of ramen followed by a banana molasses smoothie. I feeling fine now. I have PT again in a few more hours so I need to stoke my electrolytes. I plan on taking a soak in epsom salts before I dress for PT because the magnesium does a good job of boosting my energy for about thirty or so hours. I already have dinner ready for tonight--I come home from PT and I am done for the day on spoons. The doctor ends the session with a very intense neck massage and I don't have an ounce of resistance left in me when he is done. Coffee helps. My doctors are pro and con on coffee. Some are totally are against it, some say limit, and some have an all you can drink keurig bar. I tend towards more than less--sometimes, despite everything I do positive, I have drag-my-bones days and need a LOT of coffee, a shameless amount. I don't guilt myself over it EVER--there is no fail in my thoughts. I won't take that mindset. In many ways I only started getting better and feeling like I could survive my life once I started telling my doctors what I was going to do and not the other way around; they guide me and they see me quick if there's a problem, but I live my life my way and they work with that. A lot of it is my attitude, I wasn't like this. I used to not exercise or eat right, didn't think about nutrition and health. And then things started breaking down and weird sensations crept in. After a lifetime of bad habits I only changed because eating right and moving my body make me feel better. Nutrition and exercise heal. 

@TCP I do a lot of core, it's a major part of my PT exercises. I have scrunchy vertebrae, balance and motility problems--core is part of almost everything I do. One of the more intense sets I do is balancing on an M-Board which took months to get strong enough to do without flying off; hard to do but it works, it's a top to bottom exercise, even my arms because all my muscles are in work to stay on that platform. I live in a cottage and don't have room for a bike but I have room for this board and got one. I have some other balance boards but the floating platform is the most intense. Core exercise is vital for so much of our health.

[TCP]

On 6/27/2018 at 5:17 PM, WinterSown said:

 

 I do a lot of core, it's a major part of my PT exercises. I have scrunchy vertebrae, balance and motility problems--core is part of almost everything I do. One of the more intense sets I do is balancing on an M-Board which took months to get strong enough to do without flying off; hard to do but it works, it's a top to bottom exercise, even my arms because all my muscles are in work to stay on that platform. I live in a cottage and don't have room for a bike but I have room for this board and got one. I have some other balance boards but the floating platform is the most intense. Core exercise is vital for so much of our health.

 

Thanks so much for your reply, WinterSown. I am intrigued and looking into this! 

[zerohours000]

@WinterSown I have a question.  I decided to push myself today.  It’s 95 degrees out.  I decided to play 5x5 basketball...And if I passed out I passed out—-c’est la vie.  I figured I was around people, around fluids, and literally an ER up the road.  So I played full court to 21 (with a break at 12 points for each team) and I was perspiring normally, my legs, so could tell, were not fully under me, and my left hand was tremulous, I’d say.  I decided to see what my threshold was and I guess it’s a lot.  Because I’m drenched, not remotely tired, despite running with kids 15-22, and scoring 9 of our 19 points. This is not bragging or to trigger anyone who cannot do so much, so please forgive me in advance, as I know many are struggling just to do basic stuff.  But it got me thinking.  And here is my question: Did I decondition myself the past 4 months? Both mentally and physiologically? And this causing a negative feedback loop: feel sick> rest (out of fear or depression  or perceived weakness > feel weak (from not doing normal daily activity) > feel sick (physiologically and mentally at a lower threshold)...Repeat.  I still think I have yet to be explained malady.  But this was a good sign relative to how I’ve been feeling and behaving.  I’m sure I’ll pay for it later.  But maybe I need to do this more often.   Not everyday but at least while I can!  I’m proud of all of you. And I feel awful I come on here and complain but can still play 5x5 basketball in 95 degree weather.  I want to attribute it all to the gabapentin but maybe because I was told so early on I was sick, and then told to rest, but also somaticalky perseverated, that it did a number on me.  I was honestly surprised by today.  Most “normal” I’ve felt in a while.  Like 80% I’d say.  

[zerohours000]

3 minutes ago, zerohours000 said:

@WinterSown I have a question.  I decided to push myself today.  It’s 95 degrees out.  I decided to play 5x5 basketball...And if I passed out I passed out—-c’est la vie.  I figured I was around people, around fluids, and literally an ER up the road.  So I played full court to 21 (with a break at 12 points for each team) and I was perspiring normally, my legs, I could tell, were not fully under me, and my left hand was tremulous, I’d say.  I decided to see what my threshold was and I guess it’s a lot.  Because I’m drenched, not remotely tired, despite running with kids 15-22, and scoring 9 of our 19 points. This is not bragging or to trigger anyone who cannot do so much, so please forgive me in advance, as I know many are struggling just to do basic stuff.  But it got me thinking.  And here is my question: Did I decondition myself the past 4 months? Both mentally and physiologically? And this causing a negative feedback loop: feel sick> rest (out of fear or depression  or perceived weakness > feel weak (from not doing normal daily activity) > feel sick (physiologically and mentally at a lower threshold)...Repeat.  I still think I have yet to be explained malady.  But this was a good sign relative to how I’ve been feeling and behaving.  I’m sure I’ll pay for it later.  But maybe I need to do this more often.   Not everyday but at least while I can!  I’m proud of all of you. And I feel awful I come on here and complain but can still play 5x5 basketball in 95 degree weather.  I want to attribute it all to the gabapentin but maybe because I was told so early on I was sick, and then told to rest, but also somatically perseverated, that it did a number on me.  I was honestly surprised by today.  Most “normal” I’ve felt in a while.  Like 80% I’d say.  

 

[WinterSown]

3 hours ago, zerohours000 said:

@WinterSown I have a question.  I decided to push myself today.  It’s 95 degrees out.  I decided to play 5x5 basketball...And if I passed out I passed out—-c’est la vie.  I figured I was around people, around fluids, and literally an ER up the road.  So I played full court to 21 (with a break at 12 points for each team) and I was perspiring normally, my legs, so could tell, were not fully under me, and my left hand was tremulous, I’d say.  

At this point you should have stopped and not risked your health. Challenging yourself is fine, but to do it to the point where you don't care about personal responsibility because the ER is nearby, goes far beyond reconditioning. It's not a healthy attitude to see if you pass out, especially in public where you are going to need emergency services and take them from people who don't want to do anything that would cause them to go to the ER. Please also consider how your actions may reflect on Dysautonomics who may later need that same ER and may be treated with eye-rolling hostility. We are a community of people and need to act responsibly for everyone's sake. If you have fog don't drive, if you have presyncope stay at home. And for heaven's sake, don't push yourself to see if you collapse because you can.  Why the .... do you want to do that? It's not a good way to get a diagnosis but it will get you attention; probably no type you want. 

I decided to see what my threshold was and I guess it’s a lot.  Because I’m drenched, not remotely tired, despite running with kids 15-22, and scoring 9 of our 19 points. This is not bragging or to trigger anyone who cannot do so much, so please forgive me in advance, as I know many are struggling just to do basic stuff.  But it got me thinking.  And here is my question: Did I decondition myself the past 4 months? Both mentally and physiologically? And this causing a negative feedback loop: feel sick> rest (out of fear or depression  or perceived weakness > feel weak (from not doing normal daily activity) > feel sick (physiologically and mentally at a lower threshold)...

Yes, you can work yourself mentally into downward spiraling depression. Most certainly. Medical personnel need to make the call as to how much you have deconditioned physically, but if you're drenched and not remotely tired I don't think you sound too out of shape at all unless you are an Olympian. I quit other dysautonomia forums/groups because they allowed their posters to chastise/harpie anyone who posted they were exercising; it was a given if you posted you went for a walk or to the gym or PT you would be excoriated and scolded for not putting a trigger warning in the title of your post--as if exercise is a trigger for symptoms. It's not, but when you absorb group-think that it's better to stay ill than heal, you can get trapped into that warped ideology. Along with the anti-exercise comes contests as to who has the biggest pillbox tower. Good grief. All this works against a Dysautonomic trying to have a better and more productive life. That's why I left those groups--I want to get better. My PT center provides DPT internships and the soon-to-be doctors always ask me my main motivation--'I don't want to get worse.' So, yes, it is a lot about attitude. This morning I was visitng my MIL and started having presyncope and she asked me why I left the house. I just glared at her. I go to my doctors and take my meds, I eat right and exercise so I can continue with my day. I may trip, I may fall, I may fog, I may need to lay down a bit but I get back up as soon as I can and get back doing my life. 

Repeat.  I still think I have yet to be explained malady.  

I certainly hope you do not have dysautonomia--going back to what I said about those other forums, you do not want this syndrome. 

But this was a good sign relative to how I’ve been feeling and behaving.  I’m sure I’ll pay for it later.  But maybe I need to do this more often.   Not everyday but at least while I can!  I’m proud of all of you. And I feel awful I come on here and complain but can still play 5x5 basketball in 95 degree weather.  I want to attribute it all to the gabapentin but maybe because I was told so early on I was sick, and then told to rest, but also somaticalky perseverated, that it did a number on me.  I was honestly surprised by today.  Most “normal” I’ve felt in a while.  Like 80% I’d say.  

You will pay for  your day in the sun.. Try to minimize the exhaustion with drinking cool water with a squeeze of half an orange for electrolytes, a bag or two of chips or a bowl of ramen for salt, some melon for electrolytes,  a bath with epsom salts, some leafy greens for electrolytes, some more water, a large glass of milk for electrolytes, eat acorn squash or yum! pumpkin pie for electrolytes. And don't forget to nap, lower the shades, turn down the music, put on the AC or lie under the fan and just chill out for a bit.

Did I mention electrolytes? 

Finally, I don't want you to think I am harshing you, but don't overdo it in the sun again as that's a really good way to wind up in the ER.

WS

 

[WinterSown]

These are my balance boards. From bottom to top: Easy, Advanced, and Insane.

[StayAtHomeMom]

3 hours ago, zerohours000 said:

@WinterSown I have a question.  I decided to push myself today.  It’s 95 degrees out.  I decided to play 5x5 basketball...And if I passed out I passed out—-c’est la vie.  I figured I was around people, around fluids, and literally an ER up the road.  So I played full court to 21 (with a break at 12 points for each team) and I was perspiring normally, my legs, so could tell, were not fully under me, and my left hand was tremulous, I’d say.  I decided to see what my threshold was and I guess it’s a lot.  Because I’m drenched, not remotely tired, despite running with kids 15-22, and scoring 9 of our 19 points. This is not bragging or to trigger anyone who cannot do so much, so please forgive me in advance, as I know many are struggling just to do basic stuff.  But it got me thinking.  And here is my question: Did I decondition myself the past 4 months? Both mentally and physiologically? And this causing a negative feedback loop: feel sick> rest (out of fear or depression  or perceived weakness > feel weak (from not doing normal daily activity) > feel sick (physiologically and mentally at a lower threshold)...Repeat.  I still think I have yet to be explained malady.  But this was a good sign relative to how I’ve been feeling and behaving.  I’m sure I’ll pay for it later.  But maybe I need to do this more often.   Not everyday but at least while I can!  I’m proud of all of you. And I feel awful I come on here and complain but can still play 5x5 basketball in 95 degree weather.  I want to attribute it all to the gabapentin but maybe because I was told so early on I was sick, and then told to rest, but also somaticalky perseverated, that it did a number on me.  I was honestly surprised by today.  Most “normal” I’ve felt in a while.  Like 80% I’d say.  

I just wanted to add my 2 cents. 

I think it was wonderful that you were able to do that. You got very lucky. I think sometimes we get into a "I can't" mentality and stop pushing. Pushing it can definitely cause our bodies to push back. But I am personally too stubborn not to push. 

Today I spend 2 hours in the awful heat at 2PM to spend with my family at a local 4th of July parade. I definitely felt the heat and I am sure I will regret it tomorrow but I just can't roll over with this disease. I took my meds and I am laying down for another hour or so before I take my kids to go see the fireworks this evening. 

Salt up am keep your fingers crossed that you are not bedridden for the next week. 

[zerohours000]

1 hour ago, WinterSown said:

 

Thanks for the long and thorough response.  Yeah — I don’t think I have the POTS or OI kind of Dysautonomia but it still looks that way.  I agree about the pushing myself to unhealthy limits.  I probably chose the wrong day abx wrong season to try and do this.  I mean, I saw the other folks struggling with the heat.  So a poor choice on my part.  I just didn’t want to be in my room all day or avoiding people like I usually do.  

What do you suggest for less taxing exercises?  I basically want to keep my body functional.  I am symptomy a lot.  So I’m just sort of accepting that those aren’t just going to disappear, poof.   I’m pretty sure I do have “something.”   It may very well just be a mild dysfunction.  I don’t know.  I still fear the worst. It’s that void of the uncertaint that crushes me mostly—is it this, is it that, how long do I have on this stupid rock???

Thanks again for your thorough response.  You guys have helped me out a lot.

Best,

Zer0

[zerohours000]

2 hours ago, StayAtHomeMom said:

I just wanted to add my 2 cents. 

I think it was wonderful that you were able to do that. You got very lucky. I think sometimes we get into a "I can't" mentality and stop pushing. Pushing it can definitely cause our bodies to push back. But I am personally too stubborn not to push. 

Today I spend 2 hours in the awful heat at 2PM to spend with my family at a local 4th of July parade. I definitely felt the heat and I am sure I will regret it tomorrow but I just can't roll over with this disease. I took my meds and I am laying down for another hour or so before I take my kids to go see the fireworks this evening. 

Salt up am keep your fingers crossed that you are not bedridden for the next week. 

No.  It’s sound advice.  I also hope I’m not bedridden.  I work at a bording school so I’m just playing Mah Jong tonight...for 3 hours.

[WinterSown]

14 hours ago, zerohours000 said:

Thanks for the long and thorough response.  Yeah — I don’t think I have the POTS or OI kind of Dysautonomia but it still looks that way.  I agree about the pushing myself to unhealthy limits.  I probably chose the wrong day abx wrong season to try and do this.  I mean, I saw the other folks struggling with the heat.  So a poor choice on my part.  I just didn’t want to be in my room all day or avoiding people like I usually do.  

My cardiologist told me when I don't like the weather to take a walk at the mall because it's seasonally air conditioned or heated. I can walk and, if I need, sit and rest at any of the many benches. I also go into stores I've never been into before and check them out, I try on a few things too because I never do just one thing at a time. I am also stimulating my mind by learning new environments, having new sensations, trying new things to be more alert. It's been good. I wrote about it in a DINET newsletter. My article is called 'Walking out of the Fog'.  My doctors have me follow an ideology that dysautonomia management is a heart, mind, body and soul approach--it is such an insult to your body and spirit that improving them all has been the best way to lift me up. Everyone is unique but this has been my guided path. It doesn't have to be a mall, museums are nice too and many have free admission days or reduced prices for students, seniors, and the disabled. Walking is simple, it's the environment that can be challenging. Find someplace cool and peaceful that you like and get to it, rest as you need, sip yer jug of water, and get back up and walk some more. 

What do you suggest for less taxing exercises?  I basically want to keep my body functional.  I am symptomy a lot.  So I’m just sort of accepting that those aren’t just going to disappear, poof.   I’m pretty sure I do have “something.”   It may very well just be a mild dysfunction.  I don’t know.  I still fear the worst. It’s that void of the uncertaint that crushes me mostly—is it this, is it that, how long do I have on this stupid rock???

I very much like this set of sitting Tai Chi exercises. The sets state to repeat nine times but to start try three and build up to nine, don't put yourself off with exertion when you really just need to get some good stretches and a little perfusion to start you feeling much better.  I like this whole site. https://www.disabledsportsusa.org/sport/tai-chi/

SF