• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Article : Chronic Illness Had Me Stuck in Grief. My E-Bike Helped Me Find Joy Again.

L

Likaloha

Senior Member
Messages
343
Location
Midwest usa
Nellie said:
Proud of my daughter Nadine's new online article in Outside Magazine.

In Nadine's words "It's about grappling with grief over a lost sense of adventure, thrill and speed in my life, and how my e-bike helped me find a way back into that world."

Hope it raises some ME awareness outside of our bubble!

www.outsideonline.com/culture/essays-culture/chronic-illness-e-biking/
Click to expand...
Wonderful!!! I have a recumbent tricycle that my family bought for me and I can go up and down my street as long as my husband is close by. We live in a lovely street with a dead end and little traffic.
 
Rufous McKinney

Rufous McKinney

Senior Member
Messages
13,377
Great Article, please congratulate your daughter....

there is such a broad range of dysfunction with this illness.

The shift from mild (decades of that here) to moderate (which in fact is severely horrible) happened.

an electric bicycle would not solve it for me. Cannot process the visual inputs moving at an artificial rate of speed. Its too much sensory input to have to process neurologically.

But I hope some folks can enjoy this form of getting out.

What would really help me is more public sitting down options. Which are lacking. I can walk short distances, then need to sit down. So benches? Chairs? Please?

My bank used to be a sit down bank. Now its stand in lines and stand at windows. I mention it to the clerks.
 
Mary

Mary

Moderator Resource
Messages
17,377
Location
Southern California
Wow - amazing article @Nellie - I would be proud too! And your daughter has some very good friends!

Rufous McKinney said:
What would really help me is more public sitting down options. Which are lacking. I can walk short distances, then need to sit down. So benches? Chairs? Please?
Click to expand...
I feel exactly the same way! I walk out of stores if the checkout line is too long- if there were chairs available, it would be a different matter. I do spend a of time scouting places to sit down if I'm out of the house!
 
N

Nellie

Messages
7
Rufous McKinney said:
The shift from mild (decades of that here) to moderate (which is fact is severely horrible) happened.

an electric bicycle would not solve it for me. Cannot process the visual inputs moving at an artificial rate of speed. Its too much sensory input to have to process neurologically.
Click to expand...

Exactly! I'm also not able to ride my e-bike any more, would be way too much just to sit on it, but sure enjoyed it the years I could. Funny because they were just coming out when I got mine and I was quite self conscious about it. Oof.
 
Last edited:
L

lenora

Senior Member
Messages
4,926
A friend of my husband's built an e-bike many years ago. Having been a biking enthusiast, I thought perhaps it could be answer for me. Unfortuanely, the simply act of straddling the bike would cause me to fall over...one of the earliest symptoms I encountered so many years ago.

Walking was my other form of exercise. I started doing it again....going a few houses at a time, but now I can't even remember why I had to stop again. Deconditioning is a large part of the worry with this illness, and then pushing ourselves too much can lead to a crash. I keep saying that I'm going to try a trike, but still haven't gone to the bike store yet. Must do that. Glad that someone's enjoying the freedom that riding a bike can give. Yours, Lenora.
 
Woof!

Woof!

Senior Member
Messages
523
I've got a trike.

PROS: nifty basket that I can tie four large dogs to, so they can get some exercise
stable
fits in the back of a van

CAUTIONS: it's easy to run over the back of your foot if you start off with a foot on the ground
trikes are built to feel flat when ridden on the side of a road - this means they can be a bit
uncomfortable & feel a bit "off" when ridden on flat surfaces like a sidewalk

I got mine from Walmart.com and had it shipped to the local Walmart to be put together (no extra charge). You definitely don't want to have to put one together on your own.
 
L

lenora

Senior Member
Messages
4,926
Hi @Dr. Lynne....I'm more worried about a flare of my FM than anything else at this point. I would hate to return to that world full time. Do you find you have a problem with it....I seem to recall that you also have FM.

Are the trikes all the same? For some reason, I thought there may have been a choice among them. Our sidewalks are downright dangerous, so I would have to ride it on the street until I reach a bike path (that is used for everything). I guess I could even ride up and down the alleys that are fairly level. I feel the need to keep those muscles going as much as possible while not overdoing any of it. It's perfect weather for it at the moment.

Walmart is Rod's favorite store, so that's a good idea. I have a new upgraded Saatva mattress and after what, 4 tries, have decided to keep this one. Is it any better than the old one....I honestly don't know, but feels better when lying flat. Finally, the great mattress hunt is over. Now on to the trike issue....a Xmas gift perhaps?

Thanks everyone. It's great to exchange info. Yours, Lenora.
 
Woof!

Woof!

Senior Member
Messages
523
@lenora - I suspect all trikes ride their best along the right side of a road, so they can make your hips feel a little off when used only on perfectly flat bike paths. If the bike paths are wide and graded slightly like a road, they'd do well, tho.

Since I'm not tall (only 5'4"), I purchased the teenager size, and not the adult size (around $260). It's a good fit for me, and using the trike has never affected my FM negatively (both the FM and ME/CFS simply limit the amount of biking I can do at once).
 
L

lenora

Senior Member
Messages
4,926
Hello @Dr.Lynne.....I've lost 3" so am now only 5'3" or 5'4" somewhere in that range. All I can do is try the trike on a crisp, clear day and return it if it's just too much.

Thanks for the tip about purchasing the teen size. I rather like this idea except for the fact that my husband has our garage filled like a warehouse. He's a Mr. Fix-It, Make-It type. I can see a clear-out coming. Yours, Lenora.
 
You must log in or register to reply here.