Full Recovery?

[castronovo112587]

So refreshing to see people with great improvement/recovery

[andybonse]

i've just started my exercise plan and am going to keep it up for 6 months, I will report progress and improvements if any!!

[castronovo112587]

What's your exercise plan if you don't mind my asking? I really need to start just worried about it making me feel way worse even though I know it would probably be just initially and then help me improve.

[Bigskyfam]

I am in cardiac rehab. 3times a week. Recumbent bike started at 5 min a session to 9 min this week.

I'm curious if there is anyone not on meds and improving on just lifestyle changes

Yes! Please update everyone on your journeys

[andybonse]

My plan will consist of:

5-7 Days a Week Recumbent Biking 30-45minutes HR 130-150bpm increasing to 160-170bpm intervals for 3 Months

Then alternating days with the above, in between days will be resistance bands to build muscle which I have purchased.

6 Months target to see what changes in symptoms,

I'm on day 3 and already feel better even though I've got a cold!! I think the more we decondition ourselves the worse we get.

I used to work in a shop for minimum wage with POTS on my feet 8 hours a day no issues, even eating big full breakfasts then getting back to work, I was lifting heavy things and pushing things around so good workouts,

Then I got a desk job for 2 years, a car and a flat, I'd get up, go to work sit down all day, drive home, make dinner and then sit down and then sleep, repeat.

SOO leaves me thinking why was it I was living a normal life even with POTS and it suddenly changed, the above is the only reason I can think of!

[castronovo112587]

Prior to pots I had a very physical job and be on my feet for 10hrs straight then go out all night dancing with no problem. Now developing the pots from child birth I cannot do either or those things and get winded and short of breath doing simple around the house chores. What your saying does make sense though because I was pregnant for 9 months and didn't do much the last 3 months (was getting mild symptoms then) and then was almost bed ridden the first 3 months post partum, so I'm sure my body is deconditioned. I didn't work the first 4months and am finally back to working bit part time hours at a wayyy less physical job and its still tough at times. I'm worried if I start an exercise plan I'll be bedridden again and unable to work again as my family needs my source of income. I will have to start of very slow and build up.

[andybonse]

Mines caused by hypermobility syndrome, so probably different to yours, not sure how pregnancy causes pots its strange

[castronovo112587]

Not sure if I have an underlying cause yet I want to look into mast cell activation as I seem to have some symptoms of that

[andybonse]

Update: I will be starting in a few days, I'm full of cold, sore throat the lot ugh.

[bunny]

I think it depends how you define full recovery. In terms of functioning and living life? Yes, absolutely. As far as 100% seeing every single symptom go away, probably not as much, but I do think it's possible to have them reduced down to where they're not interfering with your life.

For me, I've had times when I was practically bedridden but was too stubborn to stay in bed, even if it meant immediately collapsing on the floor as soon as I tried to get out of bed. Due to this and GI issues, there was a period of time where I literally was living on the bathroom floor -- it didn't make sense for me to be anywhere else.

Exercise and spending time standing up has made the biggest improvements for me. I know for some this seems like a monumental challenge, but it can be done. Even just standing up for 1 minute at a time helps. My first tilt table test had me passed out in <5 minutes, the fastest they'd ever seen. Last night I was standing in a parking lot chatting with a few friends for 45 minutes straight with no symptoms.

I spent the better portion of this year (9+ months) battling Clostridium difficle (and idiot, cruel doctors) and still mostly worked and tried to function the whole time. I won't say I was functioning at 100%, BUT I was functioning a heck of a lot better than most "normal" people with C.diff do -- so much so that two GI doctors I saw refused to believe I had C.diff because I was still functioning. I just wouldn't eat all day. When I'd get home, I'd eat, get sick, and eventually pass out on the floor or if I was lucky I'd find my way to bed. I also was trying all sorts of digestive enzymes and probiotics which lessened the impact.

Still, I work a job where I'm on the road the majority of the time. I've not done the calculations for this year, but last year I was on the road for ~220 nights. I've even started climbing towers again and have another radio tower climb scheduled this week to repair a failing antenna & radio array (body willing). I still drive ~500 miles a week.

That said, I'm not symptom-free (yet). On Friday, I was very symptomatic. So much so that my SO made me wear my helmet. I ended up passing out twice. Still, I'm having fewer & fewer days where the symptoms are interfering.

For me, it's been an exercise in being flexible and maximizing my time when I can. I know my body's not going to be reliable 100% of the time, so when I'm feeling well I try to get everything I can done so I will be able to have some down time when my body's not cooperating.

I saw someone mention mind over matter. I don't think you can will this to go away, BUT attitude does matter. I've never accepted I'm sick. It's part of the reason I am symptomatic at times -- I use every ounce of energy out I can get from this body. I'm not willing to let this stop me.

I worked at a cancer center whilst in university and saw a wide variety of reactions to cancer from the patients and their families. Those who had the best outcomes had the best attitudes. They were the ones who remained themselves throughout everything. They were the ones who refused to be called cancer patients or even cancer survivors -- they were still the same person they always were. Cancer was just a speed bump or detour on their journey.

[davecom]

Thanks for thoughtful post bunny. You have given me some ideas to think about.

[andybonse]

Bunny, whats the cause of yours?

[Bigskyfam]

Starting to feel like me... Before I crashed and was bedridden. Makes me wonder when I actually started to show symptoms. Med free still at moment. Elevated bed, fluids, salt, compression gear as needed... Exercise. Recumbent bike 15 min 3 times a week.