Advice needed : how do you know when you’re okay to go out ?

@Dechi

I bought a second hand foldable walking frame with a seat from a local internet buy swap sell site. It was much cheaper than buying new.

Sorry you are struggling with going out.

It’s hard to predict how I will be from day to day but if I want to go out I plan days ahead and keep my activity levels to a minimum on the days prior.

I don’t shower or wash my hair on the day I want to go out. I just rest up then get up and assess how I’m feeling. Most days it will be obvious by my symptom levels whether I can go out or not. Others days it’s not so obvious or I think I can manage then start crashing when I’m out.

For outings involving walking more than a few steps I am pushed in a wheelchair. For short distances I will manage without. I sometimes use the walking frame but not often.

The benefit of the walking frame is that it gives me the option of sitting down wherever I am. And it has storage so I don’t have to carry things. I wear a small cross body handbag. That way it’s more secure and doesn’t slip off my shoulders.

If I’m not in the wheelchair or using the walking frame, I scope out where seats are. These are essential. I will wait on a seat for however long it takes to recover and get home. Or just to take a break.

Just reading through these posts reinforces how tough ME is on us and how we struggle with things that others take for granted.

Best wishes Andy
 
Dechi said:
Wow, so much great information, thank you for all your replies ! I wanted to reply with multi-quote with sections of everyone’s comments but I guess I don’t know how, it didn’t work... :-(

I am (sort of) happy to see that it’s not just me, it seems really difficult to predict when we can safely go out. I usually try to skip at least 2 days before going out again. I don’t shower everyday to save energy (I wash with a cloth if I have to), I rarely cook and I try to do little bits of cleaning here and there, maybe 3-4 minutes at a time.

I guess it will unfortunately come with experience. I’m at the point now where I need to buy some kind of walking aid. There’s the money but also my pride and fear of being embarrassed that are in the way. I need to let go of those.

Mornings are usually really bad for me, so the ideal time to go out is between 11 am to about 2 pm, so I can nap if I need to and be home for the « end of the day » fatigue.

One thing I’m grateful for is still being able to eat late breakfast at my local restaurant. I can be served real fast and be out of there in about 30 minutes, so it’s tolerable. And since I live alone, it’s a welcome distraction from the 4 walls of my living room.
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Quite similar to me @Dechi im very rough in the mornings slightly later for my best time for going out 12 to 3 I use a walking stick which I don’t need at first but after energy drops it is helpful. I try to keep going out to 2 or 3 times a week max. I sometimes go to local cafes on my own too. Especially weeks when I’m not seeing friends. I try to go after main lunch rush so it is not as busy/loud.

I have baths with Epsom salts rather than showers as for me that takes less energy and I only have a bath when I’m feeling up to it I also use a flannel to wash when not having a bath my bathroom is very small and I can sit on the edge of the bath and I’m right by the sink. On worst days I don’t even bother I have a quick wet wipe wash. Unless I’m really rough I do cook as I love my food but I have a lot of shortcuts.
 
Re: mobility aid.

There is nothing to be embarrassed about by displaying mobility aid. You will find that people will give way, open doors, be kind and even give away their seats or their place in the line. You will see kindness in people’s eyes.

What I find great about my scooter is that it saves me energy to do a little more. It allows me to spend time outside, get fresh air and enjoy nature, may it be just for 20 minutes. It allows me to do shopping, banking and go to the library (all of which are within a 2 blocks radius from my appartment) without standing.

My extended health insurance paid for the scooter by the way. There are other ways to finance for one. Craigslist or Kijiji could yield good finds.
 
Milo said:
Re: mobility aid.

There is nothing to be embarrassed about by displaying mobility aid. You will find that people will give way, open doors, be kind and even give away their seats or their place in the line. You will see kindness in people’s eyes.
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It’s hard to explain but I feel like I’m not « ill enough » to deserve sympathy because I can still walk. I am afraid of people judging me because they will see me and think I am lazy or faking it.

I still have trouble parking in a handicapped parking spot. I look around and hope nobody is looking at me walk out of my car. Whenever I can avoid it I park somewhere else that’s close enough.

I know it’s nonsense but I can’t help it. This is from years and years of toughing it out and almost never allowing myself a break. Lifetime lack of empathy for myself, which has led me to believe I don’t deserve it from others either. Complex issue, not easily resolved.
 
Dechi said:
I know it’s nonsense but I can’t help it. This is from years and years of toughing it out and almost never allowing myself a break. Lifetime lack of empathy for myself, which has led me to believe I don’t deserve it from others either. Complex issue, not easily resolved.
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I know what you mean. This is a difficult step to take. I don’t use aids (my car is my main mode of transport for short distances)

I think it’s a case of weighing up these stupid feelings of shame/inviting other people to judge vs doing something you really want to do/something you need to do to survive.

I haven’t transitioned yet into mobility aids, although I know that I’m ok sitting for long periods with arm and back support because I manage it for work sat at my desk. It’s walking I have a problem with so I would be ok with a scooter/chair set up. My main desire is to be able to go out more with my family, but atm there’s nowhere to put a scooter and it’s not great to use to go to a restaurant, because of nowhere to park it...then you’ve got the walk of shame from it to your table.

It’s tricky. Perhaps look at all the occasions you would benefit from an aid and weigh up the pros and cons? Lots of people here use aids so can give better advice than me. Just wanted you to know that I understand these feelings.
 
@Dechi what I've used is a small foldable electric scooter. It's not a mobility aid per se, but works like one for me. It allows me to zip around the neighborhood seated and is a major help. I can walk a bit if I walk slowly, but using this I don't have to.

It's really fun to ride, and people I pass think it's a fun toy as well and wonder where I got it rather than why I'm riding it. I've also used it inside bigger stores, and no one seems to mind. It's far better than riding a car or public transportation, which will both drain me in a matter of minutes. Of course it's not appropriate when the frost and snow comes.

I have one like this:
Skjermbilde 2018-10-03 09.33.07.png
 
No matter how much I thought about it, I could NEVER feel any difference when I walked out my door. Some days I managed no problem, others I got a few steps past my garden and had to hang onto the railings to get back. Nowadays I realise that ME gives me fatiguability. I actually am fine until run out of whatever it is, like a faulty phone battery that can't hold its charge.

When I got a fitbit heart rate monitor it made such a difference. I found that my heart rate reflected how I felt when I had to stop and couldn't carry on, but it started to get higher when I was getting ready to do something but before I felt anything.

I can no longer manage out, but I wish I had used one when I could. As a bonus, I can see that I am ill, so I do not feel guilty. We know we shouldn't but we do :)

I have a rollator with a seat and it is a great thing. I wish I had used one when I was still getting out. There are also shopping trolleys with seats that I know a few people use with good results.

Personally, I can't use a scooter as you have to lean forward with not enough support for your arms. A few minutes floored me so try before you buy, some people get on with them really well and they are cheaper than electric wheelchairs.

Thanks to the DWP having to be taken to a tribunal to give me DLA I got a lump sum and used it to buy an electric wheelchair which is almost as good walking if you can get it into a car or onto public transport.

Hope something helps.
 
One thing I learnt the hard way is to be very disciplined about my keys. I fell into a horrible situation a few years ago when I was testing going out by returning some mailorder clothes via the company's shop in town. It was a very easy short drive, free parking, and a short walk I felt was manageable. In the event it was too much for me and I didn't realise I hadn't got my car keys until I reached the car.

It was all awful from there really, but luckily I'd left my keys on the shop desk. I had to lie down on the changing room floor until I felt I could walk back to the car again. I didn't have the energy to cope with people's kindness. My house key is on a clip and now I can drive a little again I do the same with my car key. For me planning and being prepared to bail out at any point also help.

I would also say that using mobility aids is not as bad as you think it might be in my experience. I could kick myself for refusing to use them for so long.


@Dechi I hope you figure out solutions to suit you soon.
 
@arewenearlythereyet thank you, I appreciate the feedback and understanding. Weighing the pros and cons is a good way to go.

@andypants do you have the model of your bike so I can look it up online ? What’s the autonomy and is the seat comfortable ?

@Mithriel yeah, I know what you mean, I can never know either.

I have a polar a370 and I use it as a heart monitor but it’s not helping, there is no trend. Or maybe there is one that I don’t see.

@Skycloud we have to y organized, don’t we ? Mistakes can be very costly. I’m glad you found a way to settle this key problem.
 
Dechi said:
@andypants do you have the model of your bike so I can look it up online ? What’s the autonomy and is the seat comfortable ?
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It’s an Airwheel E6. There are tons of different models out there, just google electric scooter or electric scooter with seat. I chose this one because it was available in Norway and could be folded and lifted by me, and a reasonable price.

On this one the seat is ok, but nothing special. It’s two small round seats actually, one for each buttock! I find it more comfortable and supportive than say a bicycle seat, but there’s no padding (I have my own!)

It has battery capacity for up to 25 km. The battery can be taken of and inside to charge, or it can be charged while on the scooter. The breaks on this one are not the smoothest, but they work. There’s an app that will tell you how fast you are going and battery level, as well as a small LED indicator on the handle that changes color with the battery level. It can manage hills quite well. The wheels are small and hard, so I have to be careful with curbs, etc.
 
My main indicator is putting on make-up. I’m a make-up wearer and if i’m too ill to sit upright and put it on then i’m too ill to go out. Sometimes i’ll get my make-up on and then crash which really annoys me as i’ve then done it for nothing.

@andypants i’ve just bought a little folding electric scooter like this to be able to climb the 3 large hills between my house and the public transport.

My mobility scooter really struggled on the first large hill and i also didn’t feel safe as it had a maximum speed of 4mph, if i passed a group of teenagers or someone dodgy i couldn’t outrun them on it. I felt like a sitting duck.

Are the e scooters legal where you live?

They’re not here. Not on roads, or pavements or cycle paths.

They have to have a 15mph speed limit which is too slow for roads, but at the same time, they’re too fast to be allowed on paths.

To use on a road they have to be registered, insured and taxed, with helmet. Only problem is they usually can’t be registered as they don’t have a category and usually can’t be insured.

A CBT motorbike licence is also required, which i now have but the other categories still need to be addressed.

So... i’m taking a risk but about to give it a try on paths in the dark at night and hope i don’t get pulled by the police :oops: Never done anything wrong my whole life and now i’m a 40 year old hooligan :rofl: :laugh:
 
@Hell..hath..no..fury... Let us know how it goes! It’s legal here, the current governing parties legalized it along with Segways.

The speed limit is around 15 mph on mine as well, which means it classifies (barely) as an electric bike. It’s a bit borderline though, as you are really supposed to have to pedal. Have passed the police several times without incident, though:) It has the necessary lights and bells.

The rule here is simply that you have to choose. Either you ride on the road and follow the traffic laws, or you go on the paths/sidewalks and are considered a pedestrian. It doesn’t matter what you choose, but you have to stick with it.

I will usually go on the road and just keep to the edges like if I were on a bike. Some places have bike lanes which makes this easier. On busy roads I feel safer on the sidewalk, but then I have to get off and walk if I cross the road etc, which is not ideal.

If I have to bring it inside or someone wonders if I’m in the wrong place I usually just say that it’s a mobility aid (because I can walk a little but not ideally not). People seem to accept that without question, and actually I think people are a bit relieved to see a relatively young woman on the fun toy scooter rather than in a wheelchair. The scooter they can comment on because it’s fun, which makes them more comfortable I think.
 
Hell..hath..no..fury... said:
You’re so lucky @andypants they were talking about changing the law here in early 2019 due to people petitioning but it’ll probably not happen.

If a person is caught, they can be summoned, lose the scooter, have 6 points taken off their licence (or future licence if they’re a child) and a possible fine.

Still doing it though :whistle:
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:nailbiting: You daredevil!

Do you have a HC pass or something that you could keep with you? I mean you would still be breaking the law, but they might be more inclined to let it pass if you could document that it is for a good reason :angelic:
 
I do have all the proof i need that i’m disabled that i can carry on me, just depends on the copper who pulls me at the time and what mood they’re in.

We have a lot of off road cycle paths here and a few parks to cut through. I’m usually out very late at night if i do get out and we don’t have many police-people on foot these days so its less of a risk.

I’d only be out once or twice a month but sod’s law would have it, i’d pass the only copper for miles sitting having a sandwich on a park bench at midnight lol

even manual push scooters of the toy variety aren’t allowed.

edit: @andypants After scrutinising for many hours i’ve found a way to do it legally. I’m swapping out the scooter i’ve just bought for a road legal one, extra £200 but it comes with all necessary paperwork to be able to register and insure it. You have to have a bike CBT certificate which i currently have so may as well take advantage of that. Hope this works out. It’ll remove the stress of worrying about police constantly and no hiding required
 
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Felt ok to go out today, and have wanted to for ages, so got on the bus and went to town. Was out for about 2.5 hours total. Not too much walking, visited a couple of shops, had a couple of long (and much needed) conversations, the first I’ve had in a long time, 3-4 months, talking about things I love (music and books). Been home 6 hours now. No big PEM yet, but can feel depression washing over me like a bad trip. Wonder if more is to come? I really need more social time, so I hope the fallout is limited.
 
Dechi said:
Wow, so much great information, thank you for all your replies ! I wanted to reply with multi-quote with sections of everyone’s comments but I guess I don’t know how, it didn’t work... :-(

I am (sort of) happy to see that it’s not just me, it seems really difficult to predict when we can safely go out. I usually try to skip at least 2 days before going out again. I don’t shower everyday to save energy (I wash with a cloth if I have to), I rarely cook and I try to do little bits of cleaning here and there, maybe 3-4 minutes at a time.

I guess it will unfortunately come with experience. I’m at the point now where I need to buy some kind of walking aid. There’s the money but also my pride and fear of being embarrassed that are in the way. I need to let go of those.

Mornings are usually really bad for me, so the ideal time to go out is between 11 am to about 2 pm, so I can nap if I need to and be home for the « end of the day » fatigue.

One thing I’m grateful for is still being able to eat late breakfast at my local restaurant. I can be served real fast and be out of there in about 30 minutes, so it’s tolerable. And since I live alone, it’s a welcome distraction from the 4 walls of my living room.
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I have the same “window of opportunity” most days. First three hours: leave me alone, then three hours where something might be possible, then the end of the day fatigue sets in and it’s over
 
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