Daychilde's walking thread
In 2022, I had a BKA - below-knee amputation - on my left leg. Because of my health issues, I wasn't able to start walking immediately. My health has improved in some ways since then (and in other ways gotten worse), but I'm trying to get back to walking and get out of this stupid wheelchair.
Thanks to my severe ADHD, I struggle with walking every day. Every single day, I deal with fatigue to a larger or smaller degree. So every day, I think "I'm tired today. I'll walk tomorrow" and I never do.
So late last year, I started recording my walking and posting it in a couple of places. I found that it made me feel "responsible" for posting it - that helped overcome the ADHD and I walked every day.
I had some issues that caused me to have to abandon that, but I've restarted that again. And since I've come back to Tildes, I'd like to post that here.
Instead of a new thread every day, I figured I'd post a new comment every day. I hope that's okay. If it's not, I'll stop updating and delete this. But I've found that interacting with people I care about - of which there are some here - helps me do this every day. And some folks seem to like seeing the progress. heh.
I've posted all the videos here: https://www.youtube.com/@Isaac.Eiland-Hall/videos
That should be perfectly fine, and actually works better than making a new topic every time.. since if anyone doesn't want to see this topic keep reappearing in their Activity Sort whenever you post a new comment they can just click "Ignore" on the topic.
You're also welcome to post in the recurring Fitness Weekly Discussion too though, if you want to. That's where I have been writing about my own fitness journey recently too.
p.s. Speaking personally, I'm looking forward to reading more about your journey, and seeing your progress! :)
Ignoring was the idea behind keeping it to a single topic. hehe.
I think unless there's pressure (which I will absolutely yield to), I'd like to have my own thread just so I can scroll down and see previous days as they accumulate. :)
Hmm. I've looked for my old threads about my health so I could add an update and I can't find them. Well, I'll keep looking. I'm sure they'll turn up.
Day 8 (4-3-3-2) - this day went amazingly well. Full details on the imgur post:
https://imgur.com/gallery/day-8-4-3-3-2-AirR71M
Day 9 (3-2-2-2): Tired and sore today, but I walked!
https://imgur.com/gallery/day-9-3-2-2-2-56iwZCi
There and back again (and again, and again, etc... ), it's not just for Hobbits.
Nice job. :)
Definitely a bit shorter today… but… I did the same number of "sets", so it works. heh
It's poking time. How's it going, Daychilde?
It was a difficult day at dialysis again. I'm hoping that gets better.
I haven't really talked about the medical side of things too much, but because I'm basically posting all of this stuff publicly - feel free to ignore details, you and everyone - but for the curious:
So I had an appointment with my primary care - who was a researcher of cardiac/diabetic issues, which are often intertwined along with kidney issues. I feel so lucky that I have this guy. Not only is he a doctor, but I mean, he studied MY specific problems. AND he has ADHD which is just the cherry on top. He is incredibly supportive, understanding, and wants to help. He keeps taking time with my for my appointments because he believes that we can get me better, and... I feel embarrassed to say it, but I have found that there are people out there that think I'm a pretty amazing person. I have trouble with that, but I cannot deny that it happens, and he is one of them. It is just absolutely incredible to have his full support on trying to fix me.
But I got a bit distracted. My glucose has been running high again. And while my eating isn't helping, it's also a sign of poorer health. We need to tweak medications and treatment to help, which will improve everything and allow me to walk every day and improve faster. So I've got appointments in early May for an endocrinologist and a heart specialist, both known to my doctor and specifically recommended. So I have a high confidence that they can work together synergystically andreally amp things up for me. I am so incredibly lucky to have these resources. Not everyone does. My nephrologist, for example, is average at best. So it's even more lucky that my primary care essentially helps keep them in check.
Really, I should probably do a full health writeup with my full story. lol. I can't find the old thread and I think it's deleted. And that way I have a single place to put updates that are beyond just the walking. And make it easy to be ignored for the many who - rightfully - don't care. lol. I'm not being down on myself, I'm grateful for all the support, but I try to be careful with all this stuff because I am not The Main Character. lol. But if I can provide entertainment and be interesting, then I can provide benefit will experiencing benefits of keeping me honest and improving. lol.
And I didn't mean to be verbose. Damn ADHD.
Thanks for the explanation. Gives a lot of insight. Sounds like you're really lucky to have him.
It also sounds like you're working hard. Keep it up. You've got this!
Day 10: Day 10 - https://imgur.com/gallery/day-10-3-3-3-2-2-676ft-HpfFG4N
I also made a lot of progress in housecleaning today. Trying to get rid of junk and clutter.
Car is in the shop. It'll be several days before they can even take a look at it. So may well be a couple of weeks before I can drive anywhere. MEH. But that does mean more time building stamina.
edit: I woke up very very sore this morning; it's a dialysis day. I suspect there won't be walking today, but I will try once I'm home from dialysis. whee.
Welcome back, Daychilde. I remember your contributions to the prior iteration of the Tildes Minecraft server.
I'll be watching these posts with interest and cheering you on.
Day 11 (4-3-2) + Special
https://daychilde.com/day-11-4-3-2/
Well, I decided to go ahead and start publishing my walking videos to daychilde.com. I may change up the format, but this allows me to have a single page with all the embedded Youtube links.
Still working on editing parts of the site, so please ignore the ugly white bits :)
https://daychilde.com/day-11-4-3-2/
So I hadn’t been able to walk in a few days because dialysis was hitting me very hard. Although for the last couple of days, it’s been the inertia of not doing it, which is frustrating, but just a fact of life with ADHD. But I’m back today.
And I have a special! I made it out the glass doors! I was curious to know if I could.
hell yeah brother
I like your shirt in the "bugger all this for a lark" video
I hope you'll like some of the other ones. lol.
For dialysis, I have to wear a short sleeve shirt. It used to have to be button down as well, but no longer - but I highly prefer button-down shirts anyway. heh. So I have a very small collection of tropical shirts that I'll be going through on dialysis days :)
Today's update is not a walking update, alas. I'm anticipating tomorrow will be, though.
It was a dialysis day. And a rough one. I've had rough ones recently.
A good while back, I'd been having appetite issues. Those resolved and I wasn't paying enough attention. Long story short, I put on a little bit of weight.
Well, the thing about dialysis if you have what's called your "dry weight". With kidneys not working, pretty much everything I drink stays in my body. So part of dialysis is removing waste from the blood, and part of it is removing fluids.
How much fluid to remove? Well, if you know what your weight is when you're not carrying excessive fluid, that's the target weight - the "dry" weight they try to get you to at the end of the session.
But how do you tell if you gain or lose weight?
That's the neat thing, you don't.For losing weight, you look for symptoms of fluid overload - tightness in the chest, trouble breathing while laying flat. For gaining weight, it means they're trying to take more fluid than your body can spare, so during treatment you get low blood pressure, nausea, cramping, other symptoms. That's not the only thing that can cause low blood pressure, and over the last year, I have learned what it feels like for me as my pressure drops - I start with muffled hearing, develop muffled eyesight, and develop chest pain. It's very very unpleasant.The solution is to pause the fluid removal part. And if that isn't enough, to give a bit of saline.
We had to do that today again. But I'm pretty sure this cements that my current dry weight is around 123kg or around 270lbs. meh. I had gotten down to around 250lbs/113kg at my lightest last year, and had already pushed that back up to around 118kg/260lbs. So I didn't catch that I was going up because I've had tummy troubles enough that i've had to miss around 15-20% of my sessions. And I've had trouble with fluid intake such that i've been pushing what they can remove, so I've been above my target weight for a while. Miss a session and you continue to take on fluid.....
So the last 3-4 sessions have been pushing my body and it's not been fun. One reason I haven't been walking on dialysis days recently.
And yesterday, I spent my energy doing some cooking in an attempt to eat better, and ended up with no energy for walking.
I was also able to finally get the new glucose monitor, and have discovered that while I was pretty managed as of a couple of months ago, I'm constantly running high right now - evenfasting. That's not completely related to food intake, but glucose also can spike like this when your body is not where it needs to be. So it tells me things need a bit of work and tweaking.
Had an appointment with my primary care - always amuses me - I am Isaac, he is Dr. Isaacs. lol. He also studied kidney/diabetes/cardiac issues and was a researcher. Brilliant guy. He got out of research and into doctoring because he wanted to use his knowledge and put it to practical use. So I'm so extremely lucky to have him.
We're working on adjusting some of my medications to help. And while I haven't seen an endocrinologist in a while, he's referred me to a specific colleage who he feels knows my problems especially well. As well as referring me to a heart specialist to augment my cardiologist.
It's in the service of getting health back on track and making improvements to help my chances for being able to get a kidney transplant.
So while I'm irritated about the walking, that's a short term issue. Long term, things are alright - and will improve.
We've also got our second car in the shop that hasn't been running for a few months, as when it comes out, I'm going to see if I'm able to start driving again. I'm pretty sure I can with the walking I've been doing.
So as always, there are some frustrations, but I choose to focus on the positives and see what I can do to improve things rather than giving up and wallowing in depression. lol.
Also, my wife - who was diagnosed 20 years ago with ADHD when I was - we've been doing some talking recently and after talking with her therapist… we think she might be AuDHD. And frankly, we're wondering the same about me. heh. But harder to say. And apparently getting that diagnosis can be difficult. I hate self-diagnoses, but they are apparently somewhat common in the autistic community. So I'm waffling a bit and pondering. Doesn't change much either way.
So that's where a lot of stuff is. Not everything, but I'm excessively verbose anyway. :P
thanks for sharing. i was sad to not see your updates the past days.
I am not going to claim that I understand your situation, but that seems to me to be just as productive use of your energy as walking. I am glad to hear that you used your energy to do something to help you get healthier.
It was productive. :)
Then it was a good day despite not walking.
Not sure if this would help you, but it might be beneficial to reframe the goal from "walking every day" to "doing something to get healthy every day"
I am so pleased to see you thrive on this journey of recovery. It’s so easy to slip into depression after such a life altering surgery, and here you are showing an incredible amount of resilience.
Your motivation is contagious. I, myself feel like I must will myself out of the house today. I have two fucking legs- there is no excuse on my end to take that for granted.
Thanks for taking the time to honor your body and share it with us.
Wow, my 1½ legs are celibate, you lucky bastard. ;-)
Were you able to get out of the house today? If not, you must not beat yourself up about it. Just make plans for the morrow and give it another go. That's all I can do. I couldn't walk today, but I know I can tomorrow, and I will.
I have learned that the more time I dwell on the past, the more of my present time is wasted. So I am constantly trying to let the worries of what already happened go. I can't change it. It has happened already.
And for the future - while I'm trying to improve future me, at the same time, I am not devoting all of my energy working myself bare to the bone today for a future I may or may not see. I mean, I'm trying to build savings, sure. I'm thinking ahead. But I'm also not worrying overly much about the future, because again, it is a waste of the present.
I do my best to focus every day on just that day. And even more, on the now. I cannot change the past; I cannot predict the future; all I have is the now. What am I doing right now?
Well, at the moment, I'm "wasting time" on Tildes. But that's a part of pleasure, relaxing, socializing. Such things are necessary. It's not about focusing only on accomplishing things for the future: you must, of course, do things like housework, exercise, food planning and prep, eating, relaxing, playing games - all of it in moderation.
I try and make progress every day and let the past go and the future handle itself when we get there.
And so I try to find what joy and happiness I can each day. Being on this site is. Playing my video games is. working on my client's website is, to a large degree. Making someone I interacted with have a laugh definitely is.
Don't just do things because you feel like you should. Don't live to other peoples' standards. But getting out of the house sounds healthy to me. So if you weren't able to do it today, see if you can manage it tomorrow. And if you can't, that's okay. Plan for the next day.
But if it would help: Let me know when you were able to accomplish that. A little bit of accountability helps with motivation. That's the main reason I'm posting - to help force myself to get up, fighting my fatigue, and getting out there and walking. Because I feel "responsible" to post these since I am posting them. lol.
I think it’s fantastic that you prioritize self care so much :)
I did make it out of the house, and I’m going on a bike ride with my partner this morning!
You rock.
And one day I hope to get on a bike again - when I was a kid and young adult, I biked everywhere but lost that for a couple of decades. I miss it :)
Hope you had a nice break between dialysis days. How's the walking and life?
(i.e. poke)
Partly health/fatigue and partly inertia. I did accomplish some needed things, but I should have been walking again for the past couple of days (or at least yesterday if not Tuesday). So I'm going to try again when I get home today if I'm able after dialysis, but if not today, then tomorrow-dammit. :) Thank you thank you for checking in. I hate this not walking. It was legit, and I think I still might be very slightly under the weather, though part of the problem is that I'm never quite sure if it's my normal level of fatigue or if I'm actually feeling under the weather. heh.
I admire your perseverance! Just don't let procrastination win.
I once read that if you can do something 14 times in a row then it becomes a habit and you don't have to work as hard to get it done. Maybe start trying to get to that magic 14 in a row? Or maybe 14 non dialysis days in a row?
I will be walking today. After dialysis yesterday I fell asleep in the wheelchair twice so I gave up and went to bed around 8pm.
Currently up for a couple of hours but going to hopefully nap before 7am.
Dialysis has been rough for almost a couple of weeks now. I gained weight and we've been pushing too hard against that.
But also... I hate to say it but my ADHD means that I, for the most part, don't form habits. Some things yes, but things like daily tasks no. Part of the reason I originally started posting - to help keep me doing it. It's the main thing that has kept me as much as I have. So again grateful for all the support <3
happy to help, even a little bit.
now get walkin! whip crack ;)
In progress, check back in a few <3
That's the spirit!!! I've been following on YouTube so was looking forward to the new video notification from you, which I just got a few min ago. :)
Edit: Out the door on set 3! Good shit! Well done!!! :)
I'm a bit nervous about making it down the "ramp"¹ and very much about making it down the curb, but I am beginning to think I might be able to make it to the car, if I do get a reserved space. Of course, that depends on not needing the wheelchair at my destination… so… I'm not overly worried about this yet. I anticipate taking the chair to the car for a while. Once we get it back from the shop. :)
¹ It is NOT an ADA-compliant ramp, but they tried. I didn't have the heart to correct it after the laid it, asked me about it, and I tried to give them the parameters - this is as least usable…
Oh damn, what happened to your chair that it's in the shop?
And out of curiosity, what makes a ramp ADA compliant (or not, in your building's case)?
If the ramp isn't safe for you to use because it's not actually ADA compliant, I would still personally complain (or at least let them know they did it wrong) regardless of if they originally asked for your input... but I'm kind of confrontational like that. You pay rent, I assume... and they're landlords, so it's quite literally their job and a legal requirement for them to be properly ADA compliant, isn't it?
Hah and oops - it's the car in the shop :) The wheelchair is about the cheapest you can get (insurance provided) - about $300 to replace if I had to.
Well, I don't know all of the requirements, but the one that impacts me is that there has to be a 4'x4' level platform at the top. Although there is a levelish platform at the top (that does curve off on the sides a bit), it's about as deep as the door. So when you open the door and move back so you can actually open the door (because your body and the wheelchair cannot be where the door is), you have to back down the ramp slightly.
It's usable, so fine enough.
The first iteration had the ramp go right up to the door, and that looked like it would be a problem to me (they called me to look at it before it dried).
The other issue is that they normally put folks in one of the better ADA compliant buildings in another part of the complex that was built after this part was.
All-in-all, I'm grateful for what they've done, and it absolutely works for me. Andit's frankly not likely that anyone else would need it. :)
Ah, duh! I should have realized you meant the car! LOL
And I suppose so long as the ramp is usable for you, and they made a good faith effort to create it, I can see why you're not pressing the issue.
Another thing that wheelchair ramps need is a low slope. I am not sure the exact slope, but it is lower than what people would think (leading to ramps taking up a lot of space)
looks like 3 sets - nicely done :)
ready to get that second day in a row? :)
Intellectually, yes. Physically, no. I feel much better after dialysis today - I think I'm getting my fluids and foods under better control, and hopefully the new meds will help even more.
I thought coming home that I might be able to, but I think what hit me is that I was up until 5:30am thanks to the damn restless legs. And because nephrology gives paper scripts out (who does that anymore?) I have to get it to my wife and she'll have to drop it off and then pick it up. meh.
I haven't fallen asleep in the wheelchair yet, thankfully, but I've definitely felt in that direction. I will probably crash in another 3-4 hours, which is well before the more common 6-8 hours or more normally. meh.
But still, things are improving. and it is my goal to make 700+ feet tomorrow and do either 5 or 6 sets - I think I hit 5 sets, so I want to try for 6, even if the last half are just two laps.
glad to hear that things are improving! i'll try to bug you again tomorrow :)
As promised, I'm bugging you again. Any progress today?
I ran out of time - got distracted setting up the Minecraft server as well as working on a client website. Complete ADHD fail on my part. :sigh:
<3 you, however, succeeded today <3
consider this your morning badgering. even a small walk works. just keep getting out there :)
hope you had success in your day, daychilde.
Not walking, but I got exercise rolling - will be posting an update here and the relevant thread when the video is posted. heh.
I'm irritated at not walking, but at least I got a bit of pushing myself around in :)
Poke - how did yesterday go, Daychilde?
Also looking for an update
Dialysis recently has been hitting me a bit hard, so I wasn't able to. About to go walk today, though, so an update soon. :)
Pokes are always appreciated. Dialysis recently has been hitting me a bit hard, so I wasn't able to. About to go walk today, though, so an update soon. :)
Thanks for the update and nicely done setting your new highs for laps / sets / distance (day 10).
Brief update: Trouble staying awake all day. Just a rough one. I'll be trying again tomorrow. It's my "weekend" - the two days in a row between dialysis days.
you can do it!
Username incredibly relevant. :)
Today was housework, cooking, taking care of the ill wife instead of walking. :) I'm satisfied with the progress. I need to build stamina, but the car is in the shop still, and I think I'll be ready for it when it's ready.
Hope tomorrow is better for you!
Not for walking, but am accomplishing cooking, housework, and taking care of my sick wife :)
Bookmarked thread and will check back periodically for updates. Nothing like the pressure of audience antici..........pation.
I'm cheering you on!
Thanks for posting this and sharing updates every day, it's brilliant and very admirable.
I'm quite glad that folks here and on imgur like the posts. I appreciate the support so incredibly much. Feeling "responsible" for posting is what enables me to overcome fatigue and my ADHD and actually do this. :)
The 250th anniversary of the Gunpowder Incident - at Colonial Williamsburg (where it happened) - that helped spark the American Revolution
https://imgur.com/gallery/walking-today-colonial-williamsburg-kFSEcxW
This is today's
walkingexercise post - as I did roll far enough to need a couple of breaks each way.