Managing Pots in Public... lay on the ground?!

[Chelby]

Hey guys,

I'm a fairly laidback (literally with pots lol) person, but I am anxious about managing POTS when I am out. Being able to go out is more important to me then what other people think, I still don't want to be rude or cause a scene by laying on the ground.

I get symptomatic from sitting in a waiting room, on a train etc. Usually I turn and rest my head on the seat but that is not enough, today I laid with my body on 2 seats and my feet on the floor (pretty awkward) . Obviously it's not really socially acceptable to put my feet up. What can I do?! Thinking of getting a pillow and just laying on the ground. Obviously I wouldn't be able to do that on the train. I see there are tilt in space manual wheelchairs, I would have trouble self propelling on bad POTS days though.

It is also hard whilst waiting at the counter, in line etc. I think I might get on of these walking stick chairs.

Any thoughts/ideas on how to manage?

 

[Valentijn]

@Chelby - The bigger help is in getting your feet up, rather than putting your head down. Getting both up on another seat or propped up on your bag is ideal, but it also helps a lot just to cross your legs so one foot/ankle/calf is resting on your other thigh.

 

[Chelby]

Hmm, maybe a roller bag could work. A portable seat like this could work as a foot rest I guess.

I find the lower my head is the better, I often walk with my neck cranked like a zombie lol.

 

[Binkie4]

I carried a very light ( weightless feeling) folding stool. It hooked over my shoulder. If I had a seat, would use it as a footstool without feeling I was using more than my space. If no seats, I would sit on it in queues or even at traffic lights. On one outing in NY, 3 people approached and asked where they could buy one. It was comfortable. Don't have a link but if I find one, will post.

Now mostly wheelchair bound so seated anyway.

 

[sue la-la]

not as effective as a portable seat, but ...

• if shopping, lean your upper body over a shopping cart - it brings your head lower to ground, so better blood flow.
• for queues - move your weight from one leg to another, pumping leg muscles to help pump blood.
• if half-faint in shops - half lie on floor, knees up, and wave/smile so that other ppl don't panic / call ambulance.
  or squat down near a low shelf, and pretend to stare at the produce for a few minutes (be careful standing up, can get very dizzy).
• drink electrolytes (eg coconut water) before leaving the house, to maximise blood volume.

 

[Sushi]

• if shopping, lean your upper body over a shopping cart - it brings your head lower to ground, so better blood flow.

• for queues - move your weight from one leg to another, pumping leg muscles to help pump blood.

• if half-faint in shops - half lie on floor, knees up, and wave/smile so that other ppl don't panic / call ambulance.
  or squat down near a low shelf, and pretend to stare at the produce for a few minutes (be careful standing up, can get very dizzy).

• drink electrolytes (eg coconut water) before leaving the house, to maximise blood volume.

I do all that too...and, if necessary, sit on the floor in queues. Yesterday I sat on the display of bags of mulch in the check-out line at a garden center. Often I'll ask someone to hold my place while I sit down nearby. My dysautonomia doc (who has POTS) said that he doesn't hesitate to lie on the floor in public if necessary.

 

[purrsian]

not as effective as a portable seat, but ...

• if shopping, lean your upper body over a shopping cart - it brings your head lower to ground, so better blood flow.
• for queues - move your weight from one leg to another, pumping leg muscles to help pump blood.
• if half-faint in shops - half lie on floor, knees up, and wave/smile so that other ppl don't panic / call ambulance.
  or squat down near a low shelf, and pretend to stare at the produce for a few minutes (be careful standing up, can get very dizzy).
• drink electrolytes (eg coconut water) before leaving the house, to maximise blood volume.

I do all this too I don't shop on my own much anymore, but used to often pretend to stare at things on lower shelves while I rested for a few mins. Now, I'm usually out with my fiance and just say I need to go find a seat if it gets bad. The shopping centres we go to have plenty of benches around, so I don't usually go far. If there are no seats, I will just sit on the ground against a wall.

I do find waiting rooms a problem though, as I feel worse the longer I sit still unless my feet are up (usually sit cross-legged or in a recliner). Holding my head between my knees helps a little, although you often end up with people asking if you're ok.

When I was at college, I took a rolling suitcase with all my books. When on the train, I'd try to sit in an area where all the seats face one way, then roll the suitcase into the leg-space of my seat. I'd rest my knees up on it, with my feet dangling between seat and suitcase - this let me legs be a bit raised without putting feet on seats or taking up space. Not everyone would be able to due to flexibility or size though. I also tried to get a window seat so I could rest against the window.

I also take snacks and a water bottle wherever I go - keeping well hydrated helps to reduce my POTS symptoms when going out.

It's frustrating that our illness is so invisible, as more visibility might make it easier to feel like you could do the 'socially unacceptable' things that would make you feel better.

 

[arewenearlythereyet]

For queues I roll back and forth on the balls of my feet or lean against a wall. If the queue is taking too long I ditch it and try again another time. Generally I just avoid them where possible by doing things online. Sometimes you have no choice though.

 

[Starsister]

Hey guys,

I'm a fairly laidback (literally with pots lol) person, but I am anxious about managing POTS when I am out. Being able to go out is more important to me then what other people think, I still don't want to be rude or cause a scene by laying on the ground.

I get symptomatic from sitting in a waiting room, on a train etc. Usually I turn and rest my head on the seat but that is not enough, today I laid with my body on 2 seats and my feet on the floor (pretty awkward) . Obviously it's not really socially acceptable to put my feet up. What can I do?! Thinking of getting a pillow and just laying on the ground. Obviously I wouldn't be able to do that on the train. I see there are tilt in space manual wheelchairs, I would have trouble self propelling on bad POTS days though.

It is also hard whilst waiting at the counter, in line etc. I think I might get on of these walking stick chairs.

Any thoughts/ideas on how to manage?

I ordered several styles of the cane/seat from Amazon.com just to try them out. They all seemed very similar except you can get the handle as rounded or flat. None worked for me, they were too clunky with 3 legs to use as a cane, and they all had very tiny seats that hurt my hip and back. The claim to be able to hold 250 lbs minimum but I an 140 lbs and they were very flimsy so I sent them all back. I then ordered a bunch of portable chairs to try out..they too were pretty flimsy but I kept on that folds up that has a handle, but I have also carried it in a big bag with my cushion. Thank goodness for Amazon.com...as long as you say for reason of return "not as described", the give you free returns.

 

[bombsh3ll]

I have one of those folding seats too & would highly recommend it! Mine cost about £20 from ebay. I am not able to get out much & couldn't get round a shop but can just about manage some things with my seat that I wouldn't otherwise. I am also looking at reclining wheelchairs. My seat takes up a hand but is very light to carry. As suggested above you can also use it to put your feet up on when sitting in a normal seat.

 

[Starsister]

I have one of those folding seats too & would highly recommend it! Mine cost about £20 from ebay. I am not able to get out much & couldn't get round a shop but can just about manage some things with my seat that I wouldn't otherwise. I am also looking at reclining wheelchairs. My seat takes up a hand but is very light to carry. As suggested above you can also use it to put your feet up on when sitting in a normal seat.

Great idea about being able to put feet up too! Mine came with a strap to carry it without putting it in its own bag like some. But i can just get it to fit in a big back that also has my seat cushion. Only bummer is carrying all that weight due to my spinal problems. The seat is less than two pounds..probably not bad for most folks, but I also have to luck my purse around with all my old people supplies so it's a bit difficult to manage it all. Hoping I can get my muscles built back up so it doesn't hurt my back to carry things. That's the theory according to the physical therapist anyway. I've got some great deals on eBay too, but since Amazon has better customer service and free returns unlike eBay, so if all other things are equal, I go with Amazon. So often they carry the same items.

 

[Starsister]

Ps..I've been treating myself to lay or sit on the ground in public ever since I was 20. Loved the suggestion though to keep smiling and moving eyes to look at people when you have no choice but to lay on ground, or if I am walking like I'm drunk due to attacks of vertigo. I remembered that a few weeks ago when vertigo hit outside a medical office building and I had to convince them to not wheel me directly to the emergency room. I tried to be as pleasant as possible and assure them it would wear off shortly, as I was surrounded by medical staff on break. It worked and they just wheeled me up to my dental appt. Such bazaar life changes we have to endure with no warning! It is clear my semi normal life is gone for good.

 

[Kati]

Hi @Chelby, there are a few things gpyou can do to avoid getting in trouble in public places.
-compression stockings can really help. Here in Canada you have to be fitted for them, and if you have a doctor's prescription, the extended health insurance companies cover them (a knee high pair was 100$ last time I bought them)
- prescription medication can be useful. Midodrine, fludrocortisone and beta-blockers are the typical medication for POTS. Each one of us is different in which medication they need. For me Atenolol works best. Do make sure a knowledgeable physician prescribes these to you.
- drinking electrolyte drinks- make sure you are well hydrated before heading out. Make sure you have a drink with you at all time while out. Make sure your food is salted. Salt helps a great deal.
- avoid the hottest time of day. Heat and POTS don't mix.
- consider special transportation if you are not feeling well or if you can predict that you won't make it (if the outing is too long for instance) Ask family/friends, church, volunteers or disabled organizations. Adapted transportation can be useful too. Sometimes you need to plan your trip ahead of time, noting where the benches are, and get a seat BEFORE your body is screaming. Do make sure you get plenty of breaks.
- consider the use of a mobility scooter or tilting wheelchair. My scooter is absolutely invaluable to me. It saves me energy and I can get out. The back rest tilts back and I can prop my legs on the tiller but never had to use these options, at least for POTs.
- consider a heart rate monitor and notice when your heart rate starts increasing with what activity. Having this knowledge can prove invaluable and avoiding triggers is probably the best thing to do.

Best wishes.

 

[Binkie4]

http://www.lafuma-furniture.co.uk/c...e-ocean.html?gclid=CK7b8azl1NQCFc8K0wodlmwGNw

I posted earlier (#4) about a very lightweight stool I carried to use as a footstool or chair. It slides loosely over a shoulder and I truly don't know it's there.
Promised a link if I could find one. Attached. Apologies for delay.

@Kati - Just a footnote about compression tights. Have been using them for another condition for over a year. At first I thought they helped by giving firm support but now am not so sure. These are high compression prescription measured and I've realised over time how much extra energy it takes to move joints encased in tight compression. It's really hard work and I also feel joints are moving in a narrower range of movement. Knee highs are easier but less supportive. May be right for some people though particularly Pots.
Have left them off this week in the heat ( last year I persisted throughout the summer) and what bliss!

 

[Kati]

@Kati - Just a footnote about compression tights. Have been using them for another condition for over a year. At first I thought they helped by giving firm support but now am not so sure. These are high compression prescription measured and I've realised over time how much extra energy it takes to move joints encased in tight compression. It's really hard work and I also feel joints are moving in a narrower range of movement. Knee highs are easier but less supportive. May be right for some people though particularly Pots.
Have left them off this week in the heat ( last year I persisted throughout the summer) and what bliss!

All agreed. However I chose to share in case others may find it helpful especially in the light of those unable to secure competent care for POTS/ access to medication.

It may also be helpful in situation where you really need an extra oomph, like attending a function you cannot miss, or taking a flight.

I know of some people who have purchased and used a full on G-suit or gravity suit. Oh my the contraption!

 

[bombsh3ll]

I usually wear knee highs but have just ordered some thigh highs on prescription and an abdominal binder. I'm really hoping they help! I did get a pair of cheap full length class 3 compression tights from ebay last year but they tended to pinch behind the knees and I could never get the crotch part much above my knees either - I guess you get what you pay for! I'd love to try a G-suit, I read about the patient of Dr Bell's whose orthostatic and cognitive symptoms all went away when it was inflated.

 

[ComtesseDeLaCouche]

I usually wear knee highs but have just ordered some thigh highs on prescription and an abdominal binder. I'm really hoping they help! I did get a pair of cheap full length class 3 compression tights from ebay last year but they tended to pinch behind the knees and I could never get the crotch part much above my knees either - I guess you get what you pay for! I'd love to try a G-suit, I read about the patient of Dr Bell's whose orthostatic and cognitive symptoms all went away when it was inflated.

Hi Bombsh3ll, I'd be really interested to know how that abdominal binder went for you, especially if you've used it alone - does it do anything for you? I was reading somewhere recently (as usual, forgotten the source) that compressing the abdomen can be particularly effective, for reasons I've also forgotten...
The socks and leggings I've tried have been exhausting to get in and out of, and uncomfortable to wear, including being hot and tight and tending to cut into me painfully where they ended, as if they were cutting my circulation off. I thought at first the tights helped a bit, but that (maybe placebo?) effect soon wore off.

 

[bombsh3ll]

Hi Bombsh3ll, I'd be really interested to know how that abdominal binder went for you, especially if you've used it alone - does it do anything for you? I was reading somewhere recently (as usual, forgotten the source) that compressing the abdomen can be particularly effective, for reasons I've also forgotten...
The socks and leggings I've tried have been exhausting to get in and out of, and uncomfortable to wear, including being hot and tight and tending to cut into me painfully where they ended, as if they were cutting my circulation off. I thought at first the tights helped a bit, but that (maybe placebo?) effect soon wore off.

Hi, I was very disappointed regarding the binder - it felt as if it was actually stopping blood from getting back up from my lower body to my heart. This was using it just with knee high stockings. It was cheap enough to buy (ebay) though so worth a try.

The thigh high stockings were a waste of time (Activa, class 2). They started rolling down my legs uncomfortably within minutes even though I am not on my feet much, and once you have clothes on over the top it is difficult to keep hitching them up, especially in company! I have read on a POTS site people are using a type of glue or sticky strip to keep them up but it sounded like too much hassle for me.

I am now wearing prescription Sigvaris Magic class 2 tights, which are tolerable and seem to produce a slight benefit. I suspect I am hypovolaemic rather than a blood pooler so they may help others more. Getting them on, especially the first couple of wears is very difficult though!