Frustrated

[Guest KiminOrlando]

So, I went to Walmart today with a fist full of coupons and decided I was going to walk instead of ride the motorized cart. Ended up sitting in the shoe department with my feet elevated on a mega pack of toilet paper so I didn't pass out. Sat there for 20 minutes sweating and out of breath. The only person to ask me if I was ok was a 3 year old named Nolan. He also wanted to show me his new glasses. His advice was that I should take a nap. I'm convinced Nolan is brilliant. 

If I don't try to walk, I will get worse. Do you guys push yourself and end up sitting in stores or do you just ride in the cart? I would just order online but they won't take my coupons and I need to compare prices.

[targs66]

I'm really sorry about your frustrating experience -- but thank you for the chuckle! I'm convinced Nolan is brilliant, too.

To answer your question, I do push myself. There are times when I think I must be crazy to be out in public stumbling around half-conscious, clutching at walls and on the verge of falling, but I feel the same way: if I don't walk, I will get worse.  Sometimes the dizziness comes in spells, and if I can just sit it out for a bit, I can continue. (Other times, not so much!)

I hope you find some answers! 

 

[Pistol]

@KiminOrlando - oh, how well I know this scenario!! I once passed out at Walmart and fell into the clearance rack. When I came to there were many people and I heard someone calling for an ambulance. So I refused that and said that I simply stumbled because I had recent bilateral knee surgery ( sorry for lying ), got up and "limped" back to my car without the groceries. 

Regarding your question: I do no longer push myself like that, I have learned my lessons. I have a wheel chair for those occasions where walking or standing is required ( shopping, walks with family or friends etc ).  To keep active I exercise at home and get around the house, with frequent rest periods, and on good days take a few minute stroll outside.  Unfortunately being upright is still my greatest challenge and I do not expect that to ever improve ( after 10 years of experience ),  I assume this is the case for you as well. Take the wheel chair for shopping and get your exercise by putting them away at home!! 

[Sushi]

20 hours ago, KiminOrlando said:

If I don't try to walk, I will get worse. Do you guys push yourself and end up sitting in stores or do you just ride in the cart?

I do both--sort of. If I know I'll have a tough time with the walking (I usually know from earlier symptoms) I would take a cart. But, I know what you mean about getting worse if you don't use your legs and am just finishing 36 sessions of cardiac rehab--tailored to someone with dysautonomia. I have been able to more than double both my aerobic capacity and my capacity with weights (leg press). I use only recumbent machines and rest for 5 minutes after every 5 minutes of exercise. My OI is MUCH better! I am astounded as I didn't think it would work. It is very carefully medically supervised (they take you HR and O2 about every 5 minutes to make sure you are not overdoing). I'd recommend a program like this to anyone who can get insurance coverage. They have increased the program extremely slowly as they understand the limitations of my disease. 

[Guest KiminOrlando]

@Sushi I thought I was getting a program like that twice. The first time they just put me on a treadmill and walked away. The second time they put me on a table and wanted to do stretching. I specifically told them I had POTS and needed to work on keeping blood from pooling in my legs. Both times were supposed to be supervised by a Physiatrist. I think because I also have lupus and Rheumatoid Arthritis they want to focus on my pain.  I'm thinking of trying a balance ball that you stand on to see if that helps.

[Sushi]

4 minutes ago, KiminOrlando said:

@Sushi I thought I was getting a program like that twice. The first time they just put me on a treadmill and walked away. The second time they put me on a table and wanted to do stretching. I specifically told them I had POTS and needed to work on keeping blood from pooling in my legs. Both times were supposed to be supervised by a Physiatrist. I think because I also have lupus and Rheumatoid Arthritis they want to focus on my pain.  I'm thinking of trying a balance ball that you stand on to see if that helps.

That is more than a bit discouraging! I think the difference is that I am in cardiac rehab and it is an excellent facility. They make individual programs for everyone, taking into consideration ALL their medical conditions. The woman next to me yesterday had Parkinson's disease as well as some kind of cardiac problem. I qualified because I had had my mitral valve repaired recently (there is a connection between valve problems and EDS which many of us have).

A balance ball might help though I have tried one and it was pretty intense. If I had to pick two machines that are widely available and which helped the most, they would be a recumbent bike (legs out in front) and a leg press (legs also out in front and a bit higher than the waist). For instance, I started the leg press only able to move 60 lbs 12 times with a 5 minute rest in the middle. Now I can move 80 lbs, 36 times (feet in different positions to activate different muscles). I again take a 5 minute rest in between each round of 12 pushes. With the bike, I "ride" for 5 minutes, then rest for 5 minutes. 

And then there is Physical Therapy which also tries to prescribe tailored exercises. I was doing that before but have found cardiac rehab much, much more effective. 

[Scout]

On 1/28/2020 at 1:09 PM, KiminOrlando said:

So, I went to Walmart today with a fist full of coupons and decided I was going to walk instead of ride the motorized cart. Ended up sitting in the shoe department with my feet elevated on a mega pack of toilet paper so I didn't pass out. Sat there for 20 minutes sweating and out of breath. The only person to ask me if I was ok was a 3 year old named Nolan. He also wanted to show me his new glasses. His advice was that I should take a nap. I'm convinced Nolan is brilliant. 

If I don't try to walk, I will get worse. Do you guys push yourself and end up sitting in stores or do you just ride in the cart? I would just order online but they won't take my coupons and I need to compare prices.

I'm so sorry you had that happen! 

Nolan sounds like a lovely kid. Good on him for checking on you! 

I push myself a little bit, but I have to be so careful. If I over-do it, I end up having a severe flare. If I under-do it, I end up being de-conditioned and getting even worse. It's such a balancing act! 

At the mall, I use a scooter if I'm going to be there a while or have a lot to do. If I am just going to one shop, I park as close as possible and will walk if the distance is not far, and I just sit down and take breaks on the way.  Sometimes walking even the shortest distances feels like a huge journey, and I need to stop a lot. I've noticed I do a bit better if I do my daily leg exercises to strengthen leg muscles and arterial tone, but I still find it so exhausting and flare-inducing if I walk for too long. 

Really hope you feel better!