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Walking getting harder...

Messages
14
So I used to walk roughly 40 miles a week... I've never been a gym goer so this gave me all the activity I needed. Two children (8 and 2) and a sole parent I have lots of getting around to do... School runs, clubs, work, supermarket etc.
I left my job as a project manager at the end of Feb, after being admitted to the stroke ward for a few days (no stroke). I was working 60 hours a week but earning a fortune... Now I don't have that job I earn much less... Roughly 20k a year less. So I've amended things... Giving up the car is the biggy as now I HAVE to walk a lot even when I don't want to.

It's getting harder. I only work 3 days now, and in Jan I'm compressing that into 2 days but between myself and my son we have lots of hospital apts... Some in another town (3 buses away) so my days off are spent doing things at least 2 weeks of each month.

I'm struggling, I'm getting out of breath, I ache, my legs just feel like they're in water with lead boots on. I also feel much weaker. I almost use the pram as a zimmer frame however my toddler needs to be coming out of the pram soon so I've been considering a stick... And actual walking stick at 31 years old... It scares me a bit, I'm not a vain person at all but I have a genuine fear about what people will think... Even though I know they won't be looking or even interested in me or my stick!

Does anyone use a stick, does it help with the tiredness, does it help with the weakness.

Part of me thinks using a stick is giving up yet ANOTHER thing I used to be able to do but I am really struggling. We have an apt tomorrow, toddlers apt, luckily in the same town... But still 2 buses and around an hour each way... And I'm dreading it before I've even gone to sleep!

Thanks
Rach
 

rel8ted

Senior Member
Messages
451
Location
Usa
If it saves you energy and preserves your ability to be independent, it is not giving up anything. I am absolutely not above using whatever I need to help me get around, or even finding an odd place to sit quickly if needed. I'd rather be sitting on a pile of towels in a store somewhere than staring up at a bunch of gawking strangers bc I couldn;t stay upright any longer.

Most people will be very kind and nice. The others don't deserve your attention and energy.
 

Judee

Psalm 46:1-3
Messages
4,461
Location
Great Lakes
I agree completely with @rel8ted. Use whatever you have to. Sometimes when I take my mom somewhere and I'm getting out her walker to bring it to her, it feels so nice to have it to lean on. We've even talked about getting me one. I'm very tempted.

Also, I bought a folding camping stool that I'm going to use for shopping. I just want to stencil some identifying info on it ahead of time so that if by chance I'm in a store that sells them, they won't think I'm taking one of theirs. :)
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
Look into "cane chairs" I used one for nearly 2 years before it all buckled as I'd had some falls onto it (Ive ended up having to get a wheelchair, Im only 45 years old). They are like a cane but they fold out into a stool so one can sit on it whenever one is waiting in a queue. (I'll see if I can find a photo of my old one in my journal here to show you).

I personally think you should try to rearrange your budget so you can buy a very cheap car to get about in. Im saying this as obviously when you have young kids you have a lot of getting about the place to do and walking too much is very likely to make your whole condition much worst. So having a car while you are still able to drive may be a quite essential thing to prevent further issues eg the possiblity you could end up in a wheelchair or worst if you push yourself too much
 
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Messages
14
Thanks all, budget just can't stretch to a car, I'm a new driver so Insurance is just crazy. Hopefully it will start to decrease once I've had my licence a bit longer. I often rest when walking... So the chair/cane idea is a good one. Thanks for all your replies x
 

Moof

Senior Member
Messages
778
Location
UK
I resisted getting a powered wheelchair for a couple years, even though it was obvious I needed one. All I can say is that finally buying it changed my life. My wheelie isn't disabling, it's enabling – it meant I could carry on working for another 13 years, and it now means I can follow my interests in wildlife and just being outdoors in wild, open places (I was a very keen hillwalker when I was young).

So I'd give two pieces of advice.

First and above all, any aid or appliance that helps with your daily life is absolutely to be embraced!

Second, it's impossible to know what will suit you without using it for some time, and most people buy two or three versions of an item before discovering the best one for their needs. If you need to spend more than a few pounds on it, buy secondhand to begin with. There's oodles and oodles of mobility stuff out there, often belonging to people who only needed it for a limited time after an op or an accident, or belonging to older people whose needs have increased as they've aged, making it redundant.

You can save an absolute fortune by doing this – if you have the time and energy, car boot sales are brilliant. We got a £450 ultra-lightweight aluminium wheelie for my auntie for £30 last year; a couple of years before that, we found one of those walking frames that also turns into a seat for my Mum for £20 (it would have cost nearly £100 new). Both looked as if they'd hardly been used.

I've also bought secondhand wheelies and scooters for elderly rellies. There's very little to go wrong with electric motors; you almost always have to budget for new batteries, as the families of former owners don't realise you have to keep them regularly charged or on float whilst in storage, but that's usually all. They've saved thousands of pounds this way.

Good luck.
 

Wishful

Senior Member
Messages
5,684
Location
Alberta
I used to suffer from ME-induced muscle aches (focused in the front thigh muscles), which made walking a chore. LDN blocked those aches completely. The day after my first dose, I went for what I expected would be a short walk, and found my legs feeling fine, so I continued, up a steep hill, across a km or so, then back. A dramatic improvement. LDN doesn't work for everyone, but I'm glad I tried it. The aches gradually fades, so I no longer need LDN.

I did try acupuncture once, and it blocked the aches as well as LDN did. The effect lasted a couple of days. LDN was cheaper.

BTW, I think my aches were perceptual, rather than physical, caused by neurons misfiring due to ME changes.
 

Tammy

Senior Member
Messages
2,181
Location
New Mexico
Does anyone use a stick, does it help with the tiredness, does it help with the weakness.
I was never without my walking stick. It helped me when just staying upright without any support was hard to do. Gave me the extra support I needed when just climbing a few steps was hard. I used to have alot of balance problems so it also helped me feel more steady.
 

Mary

Moderator Resource
Messages
17,335
Location
Southern California
I resisted getting a powered wheelchair for a couple years, even though it was obvious I needed one. All I can say is that finally buying it changed my life. My wheelie isn't disabling, it's enabling – it meant I could carry on working for another 13 years, and it now means I can follow my interests in wildlife and just being outdoors in wild, open places (I was a very keen hillwalker when I was young).
How do you cart it around? I really miss being in the outdoors too, but I have a small car and I think it would be difficult carrying a motorized wheelchair in it. Also, can you lift it to put it in your vehicle? I think it might be too heavy for me lift.
 

rel8ted

Senior Member
Messages
451
Location
Usa
There's oodles and oodles of mobility stuff out there, often belonging to people who only needed it for a limited time after an op or an accident, or belonging to older people whose needs have increased as they've aged, making it redundant.
I agree. The guy who services my scooter always knows about someone with a used chair/walker/scooter. He is very nice about pairing them with the people who call him in hope of finding one. I've got him on the lookout for a chair I would love to have.

walking frames that also turns into a seat
They are the best. Took mine to Target today, spent my time in the checkout seated.
Around here, thrift stores (2nd hand shops) and estate sales often have them.

There's very little to go wrong with electric motors; you almost always have to budget for new batteries, as the families of former owners don't realise you have to keep them regularly charged or on float whilst in storage, but that's usually all. They've saved thousands of pounds this way.
Pretty common for the families to think they are "broken" when in fact it is a dead battery due to not charging it as directed. When my hub was an auctioneer, he sold several of them, usually for $300-400 (they were about $1600-1800 new) and the people just got aftermarket batteries for them online.
We have people ask us about why they "break" so easily from time to time. I guess bc we are usually kidding around, they feel like we are safe to ask. Never once when we ask if they are charging the batteries do they say yes. One guy told us he just threw one away that his dad had used "a few months" before he died. Couldn't get the thing to go after he let it sit for a year and took it to the dump. Had to bite my tongue. Many people would have loved to own that.
There is usually a way to get a terrific deal if you can get creative.

can you lift it to put it in your vehicle?
I've got one. The Vets Hospitals finally decided that we were allowed to be mobile again and issuing motorized chairs and scooters. I see LOTS of cars that I never would have thought to put a lift on carrying a chair or scooter at that place. They lift is not too terribly heavy and the weight of the chair is like a small adult, maybe. The hitch for the lift is attached to the frame of the vehicle,not the bumper, so it is not a big a problem as you would think.
 

Mary

Moderator Resource
Messages
17,335
Location
Southern California
@rel8ted - thank you for this information! :thumbsup: You can see how little I know - what I was thinking was one had to be very strong to lift the scooter to put it in the car - did not occur to me that people have lifts installed! :confused:
 

rel8ted

Senior Member
Messages
451
Location
Usa
@rel8ted - thank you for this information! :thumbsup: You can see how little I know - what I was thinking was one had to be very strong to lift the scooter to put it in the car - did not occur to me that people have lifts installed! :confused:
I don't think most people know. I had no idea how they worked until I got one & bc I am around the Vets hospital, I see a lot of them, on all kinds of cars.

I wish more people would ask if they are interested. We saw a guy at the grocery store loading his wife's scooter in his pickup on lawnmower ramps or something that looked like that. He came over and asked us about our life, but he was obviously embarrassed. They were probably in their late 60s, had retired to our area, no family close, and had no idea where to even get a lift of if he could have one. He thought bc he had a pickup it was a no go.

Just so you know, the lift platform (that the scooter sits on) is secured with a pin and a latch, but when it is empty, you can swing it out to access you trunk (or hatch in my case).
You may be able to find a used one if you look. Ask some mobility stores if they have one or know of any used ones. Our guy is super good about helping people that don't have insurance to cover stuff.
 

Moof

Senior Member
Messages
778
Location
UK
In the UK we have a scheme called Motability, where people hand over their mobility benefits in return for a leased car that's adapted to their needs, with all tax, insurance, and repairs paid for. It's a good scheme for a minority of customers who are very severely disabled, but for most of us, it's basically a bit of a scam. £60 per week is a LOT to pay for a vehicle that you never get to own, and if you come off the scheme and try to get your own insurance, they treat you like an 18-year-old newly qualified driver even if you've had a clean licence for 30 years because you have no visible track record.

The good thing is that they sell of the secondhand vehicles at the end of the three- or five-year leases very cheaply. I have an automatic Peugeot Partner (basically a van, similar to the one in the photo), which is adapted with a ramp at the back and wheelchair tie-downs. You literally just drive in, clamp the chair, transfer to the driver's seat, and you're off. I bought it at five years old, with just 4,000 miles on the clock. It's had top of the range servicing, and still smelt like a new car. Even if it only lasts me for five years, it'll still be about £5,600 cheaper than signing up for Motability.

I'm guessing there may be similar opportunities in other countries too? Disabled adapted vehicles often have a lower market value than standard ones, as they're less popular.
WAV.jpg
 

Moof

Senior Member
Messages
778
Location
UK
How do you cart it around? I really miss being in the outdoors too, but I have a small car and I think it would be difficult carrying a motorized wheelchair in it. Also, can you lift it to put it in your vehicle? I think it might be too heavy for me lift.

@Mary, it depends on your needs. I had a Pride Go-Go Sport scooter on long-term hire from our city council, and it comes apart into four bits that can easily be lifted into a car. It's designed for wheeling in a stately fashion around shopping malls, but I had it going through four-inch mud and across beaches! For its size, it was quite impressive. Pride is an American company, so I'm guessing they sell them in the US.

However, if you have higher needs, I'd caution against portable powered wheelchairs. They're flimsy, uncomfortable, steer like tanks, and the battery range is pathetic. All powerchairs are based on compromises, but 'portable' ones are all compromise and nothing else. If you can't afford an adapted car to carry it in, maybe think about getting a decent quality one that will go on public transport instead.

I like the outdoors, and I'm having one built by a guy who lives about an hour away from me. It's got six-inch-wide lawnmower tyres and is powerful enough to go over practically anything but stairs. If you're curious to know what powerchair would look like if there were enough competition in the market to force mobility companies to develop their models (instead of just coming up with different coloured frames and the same crappy battery life, 14-hour charging cycles, and useless programming they were offering 20 years ago), look up the website of Kilmore Powerchairs in the UK.

Sorry, being irritated – or rather, bloody furious – about the appalling quality of mobility equipment is one of my hobby horses. Think I'd better shut up now!!
 

Mary

Moderator Resource
Messages
17,335
Location
Southern California
Thanks @Moof! That's good info - I just looked up Pride Go Go scooters, definitely are available here. I can get around okay where I need to go (e.g., store, library) without a scooter, but the thought of being able to go somewhere like a national park etc. and be able to go distances would be fabulous. (If I ever have a chance to go somewhere like that! :confused:)

Sorry, being irritated – or rather, bloody furious – about the appalling quality of mobility equipment is one of my hobby horses. Think I'd better shut up now!!
I have certain subject which are guaranteed to set me off, I can't hardly think about them without wanting to explode, so I get it! :lol:
 

Moof

Senior Member
Messages
778
Location
UK
Thanks @Moof! That's good info - I just looked up Pride Go Go scooters, definitely are available here.

There's quite a bit of difference between the Go-Go and the Go-Go Sport in terms of power and battery life, but the prices secondhand are sometimes quite similar. If you do decide to try one, I'd go for the Sport model.

As for going to a national park – I just started with our little local nature reserve, because to begin with I assumed mobility vehicles were even less capable than they actually are. I loved being able to get out in the fresh air, and a few years later, my friend and I are going on wildlife watching holidays to all kinds of habitats. You quickly realise that encountering a barrier to access isn't a disaster, it just means you turn around and go somewhere else!

If you're at all interested in wildlife, there's a whole fascinating world going on in your neighbourhood. You just have to look for it and learn about it. A warning, though, it's addictive! :rofl: You can all too easily find yourself wanting to do more and go further, as my friend and I did...
 

rel8ted

Senior Member
Messages
451
Location
Usa