Mobility
One patient in BC said: “It was horrible to have to admit that I needed help just to walk or move or leave my house. Horrible. But after I just “let it go” and started using a cane and then a wheelchair, it was like getting back some of my life. I even went to an outdoor market, a mall, and got [pushed in my wheelchair on a boardwalk] path at a nature pond this year.”
Walking Aids
Canes and Walkers
Provide stability or relief for those with dizziness, balance problems, leg weakness or pain. For many, just being able to lean can help you conserve a lot of energy.
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Rollators
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These are walkers with wheels, hand brakes, and a seat. These are helpful if you may need to wait or stand (sit!) in line. They also provide a lot more stability and give you more to lean on. Some even come with baskets so you don’t have to carry everything.
Wheelchairs
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Outside environments require more energy to navigate. As well, many find walking difficult (due to dizziness, for example) or painful (joint or foot pain). Electric wheelchairs (or manual with someone to push) allow you to conserve energy and improve safety. See here for details on ME/CFS and wheelchair use, as well as types of wheelchairs.
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Motorized Carts
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Often available for use (free) in malls, grocery stores and some venues. They help conserve energy and allow you to remain seated. Check ahead if they will be available at the location you plan to go.
Partway down the page here, there is a good description of how to use canes and rollators.
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It also covers wheelchairs and motorized carts.
Car Ride Considerations
Ergonomics
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Swivel Seat Cushions assist with getting in and out of the car.
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Steering Wheel Grips provide better control for those with hand weakness.
Sensitivities to motion/vibration
Be aware of possible sensitivity to motion or vibration and choose routes accordingly, turn off the vehicle when stopped, and avoid unnecessary trips.
Note that you may assume electric vehicles may be better as they do have less vibration, but (anecdotally) they are much worse for some patients.
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Travel Services
You may not want or be able to drive. You may want to use taxis, uber/lift, or disability travel services (talk to them about your limitations first to see if their services fit your needs).
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Parking Placards for People with Disabilities
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Many people with ME/CFS or Long-COVID cannot tolerate walking far or at all. You have the right to use disabled parking spots under several conditions, including if you “need to park close to a building entrance because [your] health prevents [you] from walking very far.” You will need to apply for the permit (that hangs in your car) and get your doctor to sign the form. In BC, you can start the application process here.
General Tips
Planning
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Organize outings (if you can tolerate them at all) during times when energy levels are higher and crowds are smaller.
There are also apps that can help with trip planning, and you can pre-research venue information (even where the bathrooms are) to help be efficient once you are there. Consider “radical rest” where you rest more than usual before and after the outing (hours or days).
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Pacing
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It’s important to pace oneself and take breaks before becoming too tired. Do not be afraid to stop or sit, such as in lines, or at the grocery store (especially easy if you have a rollator or cane with a connected stool).
Assistance
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If possible, ask for help from friends or family members, or consider delivery services for groceries and other necessities.