Powered wheelchair prevention and deterioration

[Sallyagerharris]

I have a mob scooter now which has opened up my life and given me some freedom.

But In the house I walk around but sitting as mich as possible. Sometimes I take shopping out to a storage area and walk up the garden the throw ball for our dogs.

I think having a powered wheelchair could help steady my ME and help stop relapses. But am I deconditioning myself further. I worked very very part time until a year ago but with s gradual deterioration over recent years I now am home based and use mob scooter for shopping.

I feel a bit chicken and egg as I do not recover but each relapse makes me a bit worse. When friends and / or family visit naturally I get up to open door, make coffee etc etc. I do use high chairs and always look to sit as quickly as possible but think a powered wheelchair would stop me standing so much,

All advice welcome.Mthsnk you

Sally

 

[Valentijn]

@Sallyagerharris - Deconditioning is probably an inevitable side effect of ME. We can't avoid it without making ourselves sicker, and soon would be forced to deteriorate anyhow if we kept trying to condition ourselves. So I wouldn't worry about deconditioning. It's something to sort out when you recover from the actual illness.

The problem with a powered wheelchair at home is that you might be transferring to and from it frequently, which could be just as exhausting as a walk across the room.

It might help more to monitor your heart rate and blood pressure to see how much these activities are impacting you, and to adjust the activities so that you aren't exceeding your limitations. Can you still make coffee or easily answer the door when using a wheelchair, or would you still struggle or need to stand for these activities? Would it work better to sit down immediately after answering the door, and to ask someone else to make the coffee?

Something else to consider is that the main obstacle for standing is usually Orthostatic Intolerance, which can often be treated to some extent. It might not even be necessary to contemplate a wheelchair if there's a drug or supplement which makes the issue moot.

My personal experience is that shopping with a mobility scooter is much more difficult than intermittently walking around the house with a lot of breaks and rest. So to me it seems unlikely that a wheelchair in the house would help when you're already in good enough shape to handle the scooter while shopping.

 

[Kati]

I love my scooter! It's allowed me to go out without crashing too hard, and go to nature. A change of sceneries is always good. I also use it at times to go from my appartment to my car on days I am just to exhausted to walk there.

Unlike @Valentijn I find doing grocery shopping with the scooter useful, because I don't have to walk the aisles. I usually can reach everything without having to get up and particularily like the fact I don' t have to lift and carry grocery bags, since I can roll in straight in my appartment.

Deconditioning is an issue, however it is certainly bound to happen with us. I choose quality of life over deconditioning, because I can do more things with my scooter that I was struggling to do without, and crashing.
Perhaps by using your scooter outside and walking inside the home as your activities dictate but by taking many rest periods throughout, you could reach a better balance and avoid crashes. nsimg a power WC/ scooter inside the house can prove a frustrating activity especially if you live in small space.

Best, Kati

 

[Valentijn]

Unlike @Valentijn I find doing grocery shopping with the scooter useful, because I don't have to walk the aisles. I usually can reach everything without having to get up and particularily like the fact I don' t have to lift and carry grocery bags, since I can roll in straight in my appartment

I find my mobility scooter very useful too, actually - I didn't say otherwise! But getting around the house in a paced manner is even easier for me than having an outing with the mobility scooter, which can be quite exhausting and sometimes not possible at all. So if those outings are doable, my experience has been that moving around the house should be even easier.

 

[Kati]

hi @Valentijn you said in your last paragraph:"My personal experience is that shopping with a mobility scooter is much more difficult than intermittently walking around the house with a lot of breaks and rest. So to me it seems unlikely that a wheelchair in the house would help when you're already in good enough shape to handle the scooter while shopping."

which confused me, but according to your last comment it sounds like we all agree.

 

[Sallyagerharris]

One of the problems is that I do get tired and only do short shopping expeditions as it gets tiring holding up arms etc. One of the home use reasons is where we have storage outside and taking dogs up the garden several times a day, so it would also be for that. I quite like the support of the wheelchair v mob scooter as well. It is always tricky with these things as one item does not necessarily fit all needs.

 

[Kati]

One of the problems is that I do get tired and only do short shopping expeditions as it gets tiring holding up arms etc. One of the home use reasons is where we have storage outside and taking dogs up the garden several times a day, so it would also be for that. I quite like the support of the wheelchair v mob scooter as well. It is always tricky with these things as one item does not necessarily fit all needs.

By all means, @Sallyagerharris, do what works for you best! The goal would be increased quality of life, increased time doing what you like to do. If you have someone to shop for you, or can get your groceries delivered, save that time for family or outings in nature or in your garden.

I think we are all different into what our needs are, and you will find by instinct what is right for you.