The Tricks I Have Learned To Help Rehab Me From Pots

[Lemons2lemonade]

Hi everyone! Still doing really well on the tachycardia and physical progress. In the next week or two, i plan to go looking for a job, which will be a huge step for me. Some people have asked what type of exercise i have been doing, etc. so i thought i would share.

1. Perhaps the most challenging thing for me to overcome with pots is panic. Knowing that what i am feeling isn't real. The heart rate and blood pressures--yes they are VERY real, and this is so much different from someone who has anxiety "all in their head". However, it was important for me to recognize that despite my wild hr's, bp's, feelings etc. these sensations are a sort of false alarm. Yes, it is possible that my blood pressure drops far enough that i will faint, but i'm not going to die, and i'm not going to just drop dead from this. Further, i have had severe pots for 2 years now, and symptoms for over 5. I know what my body can and cannot do. In this, i have NEVER fainted from pots. I have dropped to the ground many a time, seen stars, blacked out, been half way conscious, had out of body experiences etc. but i have never just clocked out in an instant. I always have warnings, and i am learning how to read them. Understanding these warnings and their implications have possibly been the most helpful and detrimental aspects of my rehabilitation. I have learned that some warnings are fake. They tell me that i am going to pass out and that i need to stop whatever activity i'm doing. Yet, i continue on with my activity and i do not faint. Sometimes the warnings are more serious. These warnings are real. If i do not sit down when these things occur, then i could get myself into trouble. Everyone is different, but what i am learning with my pots is how to ignore the "fake" warnings. Fake warnings try to do some pretty rotten things to me and they feed off of my fear. i have learned that the more scared i am of these "fake" warnings, the more likely they are to occur, both in frequency and severity. They keep me laying down when i should be sitting up, they keep me home when i could be out, they make me worried about going to the grocery store, about going to sleep, about waking up, about showering, and about spending time with friends. They feel terrible, and they are all a bag of wind. Clearly they are wrong, because once i began to ignore them, i all of a sudden became slowly capable of doing all of these things. (Slowly is an important concept to consider and deserves its own attention). Essentially, and more recently, i've learned to look at it like this: I am going to feel terrible no matter where i am or what i am doing. So i might as well be doing something. Further, if i am going to die, there really is no great place to die, so i might as well out be doing something i enjoy if its going to happen. These are the things that i tell myself, that get me out of the house and keep me going. My heart used to beat fast when i stood, but having pots is so much more than just a fast heart rate for me. My heart rate is under control now, i believe from exercise/proper medication, and i still feel miserable every now and then. I have to understand that i might never feel as good as i used to again. And that can be hard to swallow. But i can't let it stop me. Overcoming all of these fears, and understanding what exactly i am working with here, has given me some opportunities. They have helped me increase my endurance and strength. If i listened to all of my "fake" warnings, i would never have been able to increase my endurance and strengthen my body to ensue progress. They would have told me to stop. And if i had listened, i am confident that i would not be where i am at today.

2. Perhaps the biggest mistake i made in the beginning and throughout my experience with pots was expecting my life and body to function the way they used to. First of all, i am not going to have the strength i once had, at least not for awhile, and i also am not going to have the endurance. Doing things like shoveling the garden, going for a jog, lifting the couch, completing all errands that need to be done, going on long drives, sitting up for hours, standing still for prolonged periods of time are out of my reach. Can i do them? Yes, some. Is it worth the toll that it is going to take on my body? Absolutely not. In this, the meaning that i am trying to achieve here is the second thing i have learned. Pace myself, take it slow. I learned that i was expecting my body to just do, rather than work on it. So, i began first by staying awake all day. I could go to bed as early as i wanted, but i had to stay awake all day, whether i am laying down or sitting up. It may sound ridiculous, but this was challenging at first. Second, i began sitting up each day, and pushing myself only slightly more than my comfort zone. Even if it was for 10 minutes. This was a HUGE STEP and it took over a month to conquer. I have not layed down in the past 3 weeks--except to go to bed at night. Third, i began standing. Slowly at first, even if only for a minute. Something like, 1 minute up 30 minutes down consistently. Whatever i thought my body could handle. And then i slowly increased this. Standing soon became walking and so on and so forth.

3. I ditched the pulse oximeter and blood pressure cuff. I still have these things and use them from time to time. However, obsessing about what my pulse and blood pressure are doing is not going to help reduce my anxiety, or overcome pots. If anything, i believe that it feeds the anxieties that come with the pots. There was more than one occasion where i would freak out because of what my pulse ox or bp cuff were reading. In fact, i became obsessive with these items. There was a time where i wouldn't go anywhere without my pulse ox. The reality is, that i already know i have pots, and i already know that my pulse and blood pressure are going to do some wacky things. So why do i need to see this happen? Part of me used to think that i watched these constantly so that if something did go wrong, i would have a warning, and then i could get help in time. The truth is though, i need no warning, because i'm not going to die from this. All that's going to happen is that i will faint, and there's not much any e.r. can do for me that i can't do for myself. I don't need these things to tell me what my pulse or bp are. I've had pots long enough that i know what my body is doing without these things. Further, i've noticed that my pulse and blood pressure have improved upon removal of these items from my day to day life. However, because i am taking lots of salt and florinef, i'll usually check my blood pressure once every few days, or once a week just to make sure its not too high.

4. Exposure therapy I have no idea why pots make being in public places, noisy places, driving a car, the grocery store, etc uncomfortable. It probably has something to do with stress and sympathetic activation. However, i have found that continually exposing myself to these environments has reduced my pots symptoms under these settings. There was a time when i refused to go to the grocery store, and i HATED restaurants. Yet, i continued to expose myself to these environments over and over again, and since i have done that, my prevalence of symptoms in them have reduced significantly. In this, i think of my body as a spoiled brat. If i let it have it's way, its just going to continue throwing tantrums.

5. Relearning. What i find truly remarkable about pots is that it seems to have infiltrated every single aspect of my life, mind, and body. In so much, that i feel that i have had to relearn and retrain my body to live and perform activities without it. This is ridiculous to me, considering that i had performed tasks over and over again in the same manner for 23 years without pots. And it took my body/mind 2 years to completely undo this to the point where i almost could not function or do anything without pots. And the more i assess this, the more i realize that this is what i am doing. I am relearning how to live my life without pots. And it is not easy. Its like i have to rewire every memory, every thought i ever had, every scenario and experience i come across to function without this problem. I think of it like computer code. Someone else wrote a code for how my body is supposed to function and in doing so, at the end, they put in a one line code that corrupted all of the data. I can't go to the end and just remove the flawed code. Instead, i have to go through every piece of data and remove the flawed code (or the pots) from it. It is like relearning how to count when you know you can do calculus.

6. Compression. I wear my compression socks every day and believe that they helped me to achieve the natural muscular compression i now have.

To put things in perspective, i washed my walls for 3 hours this morning on my feet, last night i drove around for about 3 hours, went and visited some people, and had dinner in a restaurant. The day before that, i went frisbee golfing for 3 hours, went grocery shopping, and picked up around the house.For the past 2 or so weeks,these have been the activity patterns that i have been capable of achieving. 6 months ago, i could hardly stand.

[puppylove]

Wow that is awesome! Really good tips and very motivational! The spoiled brat thing is so true... Lol

[anaphylaxing]

Thanks SO much for sharing this. I am so happy for you and it is inspirational for the rest of us.

[E246]

Really good positive stuff.

Totally agree with "I am going to feel terrible no matter where i am or what i am doing. So i might as well be doing something" I was told to take it easy and not to work so much and to see a psychologist for symptom management but that would seem like focusing on my problems more. While i am busy at work, which i really enjoy, i forget about pots. This seems the best therapy.

[rubytuesday]

Yea, lemonsin2lemonade.

So happy for you. Good luck in your job search. With an attitude and determination like yours, you will find a path.

[targs66]

Thanks for this - you've summarized in a really clear way some of the things I've been trying to understand and adopt. I especially agree with the points about trying not to pay too much attention to the "Something absolutely awful is happening here" panicky feeling. I've learned that, although I feel wretched, I'm not having a heart attack or stroke or anything life-threatening. I also agree with the point about exposure - I HATE HATE HATE going to the grocery store (too much stimulation by way of sound and fluorescent lights and navigating through people with carts) but it's not as bad if I do it regularly. (However, I will say that the thing that has made me even remotely able to function was the very low doses of antihistamines I've been taking for the past year or so - prior to that, I could barely walk out to the car, let alone push a cart through a grocery store.)

thanks again for this - very inspiring.

[SleepHunter]

Thanks for this, made me feel empowered. We do indeed have authority over our bodies. Some people call it mind over matter. I too have to tell myself I am going to be ok. The worst for me is when I can feel the chemical anxiety coming on the adrenaline; sometimes I feel it coming on days in advance and it is like a rising pressure - not quite there yet but looming and this can really get to me. I have gotten to a place now where I have to tell my inner self "fine, have anxiety and do what you want to do. I don't care because it is not going to change anything. The sun will still come up tomorrow and I will still be here". It helps and it is as if I rid myself of the anxiety of having the chemical anxiety. Do you know what I mean? It's like you have two kinds of anxiety - the mental comes on when you sense the physical....ugh it is so aggravating just to think about it!

I don't have the POTS symptoms you do - I am borderline according to my table test. Most of my issues are related to fog head, adrenaline bursts, and gastro (in fact last night) as well as regular sinus infections and borderline asthma. I seem to be deteriorating in some ways as I age and getting stronger in others. For example, sinus issues are starting to go away but the anxiety problems are getting unpredictable. For the most part, they are under control but I am still trying to figure out how my diet (specfically) is tied to all of this. I guess in some ways, this condition does make us stronger as we learn to cope. I am glad this resource is here. Hope ya'll have a good day today.

[Anoj]

this was a great post. thank you so much.

[Lemons2lemonade]

Sleephunter, well put. I definitely know what you mean about the build up. I have the exact same thing. It's like you know its coming. "Looming" is the perfect word.

[Hoosierfan]

Lemons, thank you so much for this post. Truly inspiring for anyone rehabing or coping with any type of chronic illness. Even better, it's something we can all share with our friends and family -- here's what coping with a chronic illness feels like, the things I have to overcome everyday, and the things you can do to help. I know when it comes to my support system they have a hard time finding the line between being supportive encouragement (that helps) and pushing me too hard (which really DOES NOT!).

[Lemons2lemonade]

Hi all! Just to check in, a storm blew in the other day and knocked me down for 2 days of sleep. But got back up today cleaned the house for an hour, made lunch, visited with family from out of town, and drove down to an Irish pub to go enjoy some corned beef, cabbage, and trivia with friends. One thing I have noticed is that my legs are taking longer to get stronger than they used to. My legs are sore like if I used to run, and this hasn't really gotten better yet. Had some weirdo chest pains/ shortness of breath last night, but pushed through it.

[ramakentesh]

Exposure does seem to work in POTS but its uncomfortable for a while... Since I relapse remit I try to do more when im relapsed and less when im feeling relatively well because overdoing it then seems to bring back the baddies...

[Lemons2lemonade]

Rama, what are some of your tricks for working?

[aunie]

Thanks so much for this post! I totally needed to hear this. I have really done down hill this year, to the point where I am in bed all the time and even sitting up is not going so well. I feel trapped in this little box and I really need to try to see past it. What yu talked about really helped me put my own thoughts into perspective. I have really bad food/drug and chemical sensitivities too and I have been making an effort to try things anyway, even if it's scary. I try to stay calm and try not to anticipate the reactions. This is helping me also with adrenaline surges and backlash.

It was a great reminder that we are always capable of being in control, even if our bodies don't always think we are

[Dizzysillyak]

Thanks for posting this. I can relate to most of what you wrote. I'm also working on getting a life.

I have petite mals and sob on standing so my journey is different but my goal is the same. I started a walking program a week ago and so far so good.

fwiw, imho, The upside

to obsessing / examining our conditions is it allows us to move ahead with a clearer understanding

of what's happening to our bodies. I love being able to use correct medical terms as opposed to always saying I'm

tired. For example, I used to think my ataxia was leg muscle fatigue .. Duh .. lol .. I had no idea what a petite mal was either. The list goes on and on for me ..

Good luck .. D

[k&ajsmom]

Just wanted to bump this.....lemons this was incredibaly hopeful And inspiring to read...thought some other newbies like me woud enjoy it as well. Thank u =)

[futurehope]

I would like to add how I view my POTS problems. I look at all my symptoms as if, for example, I broke my arm and as a result, I have to rehab it.

Something went wrong in the functioning of my body, and I needed to work to relearn how to live with POTS.

It has been difficult and much work. After all, I used to be able to do all sorts of things before POTS took over. The older I became, the worse the POTS got. When I was younger, I was relatively normal. I had my odd symptoms, but I could still participate in life.

After resurrecting this thread from Lemonsin2lemonade, I have to agree with much that was said. Sometimes I push through. Sometimes I don't. I rest more. I am aware of my disabilities.

[boymommy3]

I can't tell you how much I love this post! Thank you so much for sharing!!!

[lissy]

Its is such a wonderful post!!!! Guess I missed it back then...

I'd like to add I have the major over stimulation problem and I began listening to music on headphones last year and it has helped some kinda built up more tolerance.

[cupcakemomma5]

This post gives us newly diagnosed Potsie a great way to look and learn.

Thanks

[spinner]

its reasonable to think that managing/improving symptoms is highly individualized. What works for one doesnt work for another. Good to see that you've kept a living journal of whats working for you and sticking to it.

[badhbt]

Thanks for bumping this. It is what I need to read today!

[Hoshistorm]

Thank you for sharing this! Congratulations on managing your POTS! You are a motivation for us all. Thank you!

[bebe127]

Thanks!! So inspirational Just what I needed today!

[Charlotte1]

Hi, I see that the original post was last March, 2012. I'm a newbie and just wondering how lemonsin2lemonade is doing now? So happy to hear that the 'push through it' has worked! Problem is that there are many posts/articles that say graduated exercise and/or not 'listening' to your body is going to make things worse. Now I'm confused as to what to do re: my recent diagnosis of POTS. I'm very symptomatic and certainly don't want things to get worse by pushing through/ ignoring warning signs yet I don't like this life of being a couch potatoe / home bound person either.