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.
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 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
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.
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"
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.
An update:
Transplant eval at VCU this morning - the second transplant program. They cut short additional testing and basically told me to lose weight, complete some sort of cardio rehab program, be able to walk 1000 feet (walker is okay).
I didn't sleep well last night. I've had trouble with restless legs for the past couple of weeks and it is impacting my health due to lack of sleep.
I'm very frustrate with my entire situation - health, financial. It's really getting me down at the moment, especially after today. It was a lot of work and some expense to get to an appointment that basically pushed me away and said "no".
It's not like that. but that's what it feels like right now. Gimme a couple of days and I'll be alright about it.
I hear from folks from time to time about my sunny disposition. Just the other day, one of the techs at dialysis expressed disbelief that I'm ever down. heh. Well, I sort of take pride about that. I want to make others happy. It's part of what I find fulfilling in life.
But I definitely get down. BUT, I also get over it, typically. I'll choose not to focus on the frustration, but to plan to do what needs to get done to fix the situation. I'm already thinking and planning.
And the walking is part of that.
So yeah. They want:
Another thing that will help on the latter is being able to drive. We're working on getting the other car back in the shop to fix the a/c, then we'll have two cars and I should be able to drive. Although technically that's still untested as of yet. But I'm confident about it.
Anyway.
It's a long journey - it is life.
It is very frustrating, but it'll be fine and get better.
I'm largely venting. I feel like crap today and I feel crap about all this today. But I know myself. Gimme a day or two and I'll be chipper about it.
I'm worried about sounding whiny. I'm too tired to be even MORE verbose and express quite everything I want to say, and that often leads to me having not expressed important bits. meh. So if anyone is worried, don't worry. Just frustrated.
You don't sound whiny at all, IMO. You've been dealt a pretty rough hand, so you expressing frustration at your situation is totally understandable.
BTW, if you ever need/want any advice on losing weight, let me know. I used to weight almost 300lbs about 25 years ago, but am down to 173lbs as of this morning. And most of that was accomplished via intermittent fasting and gradually improving my diet. But the weight loss has also significantly accelerated over the last year thanks to taking my diet even more seriously (tracking calories/macros/micros via cronometer), along with yoga+cardio and strength training several times a week. Not that the latter parts are strictly necessary to lose weight though. They're just something I discovered that I actually enjoy (to my great surprise, TBH), and they also allow me to eat a bit more every day too (which I also enjoy!). :P
Just keep swimming Daychilde. Feeling like crap is ok. Getting back up is what matters.
Wow, what an asshole thing to say. It is not okay. It sucks!
I'm teasing. Yep, it's okay. :) <3
Be back tomorrow with some form of exercise, dammit.
Today wasn't as bad, but we did only get me towards my dry weight, not down to it.
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 :)
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 :)
Evening Daychilde.
I'm sympathetic and don't want you to feel like I'm nagging you. However, I'm curious how you're doing and also want to hold you accountable, since that's part of helping you get better.
So, how did yesterday and today go?
Rooting for you.
+
You are highly appreciated and not nagging, and even if you were nagging is not harmful.
I haven't been completely without progress of any kind. I don't remember if I mentioned, but I am now - so far - driving to dialysis. Parking has worked out luckily, as I have to open the door fully to get in or out and it's a tight parking lot.
Got doctor letters today - I have my handicapped placard, as well as letters submitted to the apartment complex for some sort of reserved spot.
It takes a lot to get the chair packed in the car. I'm planning on videoing it at some point, probably when I have a dedicated space. heh.
Getting in and out of the car before dialysis is alright, but after is tough.
Wife was off today so instead of having to get out at the doctor, apartment office, then DMV, I kidnapped her. But I'm pooped.
My main challenge for tomorrow is getting the walking done early enough so that I don't lose track and forget until it's too late. Which has happened a couple of times recently. So I have a reminder set up for noon now. That's not 100% but I think it'll be enough.
This is a rough patch. I'm fighting against fatigue, a bit of being blue and discouraged on some things like the transplant front, struggles with fluid intake - I'm going in with more weight than I think I should, although one of the techs mentioned that in her experience, people can start sometimes holding on to fluid in parts of the body dialysis can't reach, so it can just happen that way. but it means that it's tough n the body right now. I'm sore and exhausted. And the ex-blisters on my leg are currently painful, although that should be better soon.
That's a mish mash of an answer, but is basically what's going on.
I don'twant to make excuses - and really? I think I'm not. But I still think I can do better, and so again tomorrow, we try again. :)
The only problem I ever have with anything you or others have said, but you in particular, is that I have to fight all my ADHD reaction tendencies - feeling like a failure which I already do and then you point it out! But you're not and I know that. Emotional response is not the same as intellectual response, and I've noticed - in general n ot saying this for here - that when I know I've screwed up - I think a lot of people need to be fussed at to really feel bad about it, but I really really don't. I'm already beating myself up hard when something happens, so I can get angry at people yellin' at me becuse I'm already yelling at myself - but they don't know that. But that's not here. Here is just that I am embarrassed by the lack of walking after committing to it. And so my instinct, which I try to overcome, is not to avoid the situation, but to reply at the least.
Because always know that it is always always appreciated, even if I'm feeling bad about it. I still appreciateit greatly, and it will help me try to walk tomorrow.
But dammit it dialysis would go well Friday, that's be nice and certainly not hurt my walking Saturday, if not Friday too............ heh.
Thank you. And everyone.
Thanks for explaining, Daychilde.
For what it's worth, part of the reason I selected this username was a desire to be a positive influence.
When I have time for the TeaEarlGreyCold's Tildes Minecraft server, I try to help people with whatever they're building. I even remembered you from the prior iteration of the server: you built a small village right near spawn to help new arrivals. It was only beds and carrots, but it was good. You also helped Noox and I build a tunnel for the first rail line from spawn to Tildetown.
When visiting that village near spawn, I sometimes wondered what happened to cause your sudden disappearance.
Then you posted your struggles. They resonated and I'm trying to bring an encouraging energy. However, in my experience, pure encouragement can turn into enabling. And always endorsing your efforts (i.e. saying "good job" no matter what) could sabotage you, since you'd know that I'd be applauding you no matter what. And then I'd become my nemesis: negative (thankfully not a user here ;).
It's a fine line to walk, and I probably flub it sometimes.
Regardless, I'm wishing you well and hoping to infinitesimally help.
My intentions are coming from a place of hope / helpfulness. I haven't and will not view you as a failure. I think you're courageous. You're dealing with massive life changes and all kinds of issues. And you're posting about it publicly, while not sugar coating it or making BS excuses. That's not failure.
That said... get some steps in tomorrow!!! ;)
So the origin of my username was that back in the day, when I was introduced to table-top RPG, the group I was in played a lot of Vampire: The Maskquerade. The DM had a recurring character he played a lot - Prince Nightchilde. After a few sessions where he got under my skin a little, I decided to poke a bit of fun and rolled up a character I named Daychilde.
But then I kinda liked the sunny nature of the name. Realized it kinda fit my personality. And my previous moniker - Bitman - had been used by a number of people such that by the time I wanted to register a domain name - I owned bitman.net for a while, but I wanted something unique.
And Daychilde has remained unique - every so often I search and I believe I remain the only one. lol.
I've always been the helpful and sunny type. I want to help, make you laugh, improve your day in some way. That makes me happy.
Not that I've always succeeded. And I've had plenty of anger issues in my life. lol. But I continue to work on it.
I miss that little village near spawn. lol. I actually have plans to "fix" a village or two down south that I think haven't been touched yet (so no claims on them yet). Although it won't help new players, although there's plenty of resources near spawn for that :)
Welll, I wasn't in a great headspace. I was struggling with many things. I loved Tildes, but there were a couple of people expressing ideas that - while not fascist - were definitely things I had trouble engaging with. And while they managed to technically be polite enough to avoid reprimand, I could not. I grew frustrated and abandoned the platform.
Missed it, but was angry about it for a while.
Eventually thought to see how things were over here, and lurked a bit, but not too long.
So far, I've been in a better place. I've had a couple of negative interactions, but for the most part, even though I've seen a very very few things that frustrate me to read, I've been able to step away and ignore those threads. Slowly I live and learn and become more zen. lol. VERY slowly. I'm not perfect.
Yes, precisely. It is very valid, very thoughtful and wise.
I don't think I have been enabled on any of my platforms (mostly here and imgur); at least not more than matches my personality -in that I'm really great about beating myself up about things. So while the encouragement is truly encouraging, I don't think it enables me being lazy, just because I hate when I miss the walking. I think I have sufficient self-loathing (which I try to keep in check lol)
Perhaps, but you haven't with me.
Well, sorry to disappoint you, mister, but the help is massive, not infinitesmal. S O R R Y n o t S O R R Y ;-)
Growing up with the undiagnosed ADHD, and possibly other factors- I mean, I talk a LOT about my ADHD because it IS a big part ofme, but it also is a convenient bucket into which I can use as a shortcut to reduce complicated issues into a single thing and just move on with what I wanted to say - so yeah, anyway, growing up with the undiagnosed ADHD, I have TONS of issues regarding feeling like a failure, taking criticism harshly (RSD - there's even a name for it and the other behaviours/tendencies it covers, whee).
Basically, it's a struggle. I tend to talk more about feeling like a failure, and I do feel like that a lot. I mean, I objectively am in many ways. The decade of unmanaged diabetes is the main reason for my heatlh. That was a failure. I am a failure. I'm not completely to blame, mind. But no matter who caused it, it is what I am. But I am also a success - surviving all these health problems.
I know I'm smart, generally kind, generally make people laugh. That is part of who I am, along with the various failures I've outlined before and more I probably haven't. heh.
It can be easier to discuss the negative feelings, but there are some positive ones as well, don't worry.
While I'm not happy with the slow progress of my business, for example, I know it's something I'm really good at - and can use my knowledge to help others. And make money. Eventually. lol.
But even though I tend to focus more on the failure side… I am proud of things I have accomplished.
But yes, I fully do intend to get some walking and videos in tomorrow :)
Thank you for being you. Do keep being you. <3
Nice! Hopefully that helps make everything a little easier for you. I'm honestly surprised you didn't get one immediately after your amputation though. Is that not something that hospitals help arrange for patients after mobility affecting surgeries like that in the US? They typically do here in Canada, AFAIK.
I did have a temporary placard with the intention of getting a permanent one, but as I wasn't walking at that time, I wasn't driving at that time - and we got in the habit of just parking close enough as long as I could get out, or dropping me near the curb cut and Rachel parking. Basically, it was one thing I didn't feel a need to follow up on because we managed without it fine, and I generally am pretty independent-thinking.
Now that I'm driving, I needed it. If I go places, I will use it and I need it.
But when I didn't need it, didn't bother following up on it just because if I don't need to use those spces, m ight as well leave them for those that do - even if most places they're usually not full. Still.
So yes, I could have gotten a permanent placard or tags, but didn't feel the need to.
Even now, if I get where I can walk longer distances, I won't be using the handicapped spaces all the time at a minimum. Although for now I need them. heh.
Ah, okay. Makes sense. In any case, I'm glad to hear you have one now that you do want/need it. :)
Well, not sure bumping this is the best way, but a note that no walking today.
Been bumping up against my dry weight for like a week or two now and it has caused me to have low blood pressure for the last hour or treatments. We caught it in time tday, but still it has impacted me - I am absolutely fatigued and trying to stay awake another 90+ mins so I can sleep most f the night. But at the mment, I am very useless. But I have confidence in walking tomorrow based on how this has gone the past few days, at least.
What you're doing with the walking is genuinely awesome, and honestly inspirational. But with all the health issues you're going though it's definitely important to listen to your body, take a break when you need it, and be kind to yourself. It's not the end of the world if you miss a few days. Just try to hop back on the horse again as soon as you're able. I will keep pestering you for updates regardless though. ;)
Pestering is appreciated and helpful. <3 Thank you. As always.
I did make the right call. I had trouble making it to bed. After midnight and I'm wide awake so hopefully back to sleep in a couple of hours. And definitely walking tomorrow - or rather, later today now.
thanks for the update. recovery is a marathon, not a sprint. get some sleep. :)
Although I'm hoping to eventually be able to sprint :D
Could do a tildes running meetup when you’re ready! I’m sure you’ll get there. Could be fun to celebrate your recovery
That would be delightful. I am just 2.5 hours away from DC with a local Amtrak station, so if it were to happen, it could be a dual purpose trip. Or even a meetup there :)
Happy star wars day, Daychilde. Hope your week goes smoothly and your walks quickly.
I got my head in all the projects I'm doing and when I looked up, it was way too late to walk. :| This is frustrating, but at least it's my "weekend", so I'm hoping to get it done among the medical appointments tomorrow.
Thanks for the cheers, and May the Fourth be with you as well. <3
It doesn't look like much, but I'm happy with it - part of today's work: https://na1.li/ :)
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 :)
Day 13: https://imgur.com/gallery/day-13-3-3-2-2-49ODcaz
Full: https://youtu.be/XMSM9YkzZK8
Yes, it's been a few days.
For 2-3 weeks now, I haven't been able to walk on dialysis days. And some of the off days, either.
On Monday, I was in Richmond for another transplant pre-eval. It was short. I have some goals I need to reach to appeal the denial.
I'm a bit bummed, but I will work on those goals.
I need to do the following:
So I'll get there, but it is discouraging. But also kind of expected after the first pre-eval with the other transplant center.
My primary care (who was a researcher in thse things and left research to try andhelp folks like me) thinks I'm a good candidate, and so will help me prepare. And refer me to a program or two in DC in addition.
So I don'tk now if I'll have a walking video tomorrow, but it'll be Friday if not.
Nice job on the laps yesterday. Did you manage to get any in today?
I crashed hard and early, so I'll be out there later today :)
We did get me down to what appears to be my current dry weight, though: 123.5kg. Which is highly annoying since I was at 113kg last year. But it's also fine. I'll get back down there.
You seem to be going faster/more natural. Your earlier videos you were walking a bit more rigid and slower, so not only are you increasing distance but also just getting better at walking
To me it feels like a plateau. lol.
The first "set" is always slow. I tend to post the 2nd or so here. heh. But if you look at the full video, I start out slow. Although I think I pushed harder today in that set, even though it was a little painful, just because of the damn denial letter I got today (I knew the outcome on Monday, so it's not news). meh.
I dunno. I'm not trying to downplay encouragement. Everyone keeps saying that, so it's probably true. lol. Every time I post on imgur, without fail, I get at least one such comment. So after a while - it's like incels blamingwomen - after a while of "it's always you [not seeing the progress]", you just have to trust others. lol
At least the mounjaro is working. After 10 days after the first dose, I was hungry once - had had to delay the second dose. Since taking the second dose, not hungry once. Have had to choose to eat to get some protein, which I badly need.... so the weight should begin to drop.
I'm close to driving once we get the first car back out of the shop again (a/c needed repair). I'm getting really really scared on the budget, but with that car and driving, I can see if the physical therapist who volunteered to help me is still willing, and see if I can accelerate my walking.
Speaking of which, I need to use this damn dumbell I have because I know I need to use it. heh.
Mildly disappointing but also not-disappointing update for the day: No video. My walker is out in the car that was in the house. That wouldn't be so bad, but my other walker in the house has no wheels. Also, for reasons of chaos and attempts at house cleaning, I couldn't easily make it out the door.
So I did some walking inside. Not as long on distance, but decently comperable on time.
I'm afraid that due to ADHD, I'm not comfortable filming inside the house. I don't like the condition. But we're working on it. Slowly.
Not a great update, but at least I did walk. And I'll see if I can free the third walker that is against the wall behind stacks of boxes so I can use it tomorrow - or in case of difficult dialysis - Friday. Whee.
In other news, the website project I've been working on for a while launches Friday, although it'll be small. But a good start as the client already has plans for more posting. :)
Glad to hear that you walked. If the video ends up being a barrier to walking, walk without the video. Also, even when it is clean inside, feel free to just not film inside. You have shared lots of your personal life with us, I am fine with your boundary of not filming inside your home.
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 :)
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.Was just about to come in here to mention your Colonial Williamsburg videos. Pretty cool stuff! :)
thanks for the update!
in the words of Dory, "just keep swimming"
https://www.youtube.com/watch?v=0Hkn-LSh7es
Day 12: https://imgur.com/gallery/day-12-2-2-2-2-2-4BY8u8z
Not great, but… I walked. :)
Good on you! I have seen your posts for the first time just now but it’s great to see you getting some movement in! I think consistency is the most importantly thing, no matter how big or small it feels in the moment. Managing to get out of your comfort zone and being able to do this takes a tremendous amount of energy and courage. Thank you for sharing!
Love seeing the comments on Imgur too
thanks for the update. Nicely done!
Thank you for your constant and highly appreciated encouragement <3
Hooray, I was waiting for the notifications on YouTube and was super glad to see them pop up, then hopped on here to comment. Great job!
It sucks that the prosthetic caused you some pain this time though. Is there anything that can be done about that, does it get better with time as you get used to the prosthetic, or is it just something you have to (unfortunately) learn to live with?
I need to make an appointment with Hanger - I'm wearing 20 layers of socks every day, which probably means it's time to have them make me a replacement. That'll probably help. I can also check in and see if they have any suggestions for my walking. heh.
It's normally not bad - don't know what I did wrong today. I basically had to teach myself how to put it on - I mean, they showed me, but one of the big problems I had for a very long time was getting the angle right. I spent so many days putting the damn thing on 2-3 times.
One thing I was taught - when you put it on, after walking in it for a few minutes, it pushes fluid up and out of the remnant limb, meaning you have to add sock layers. I've figured out (over time) that if I put the 20 layers on, that's usually about right. I can't get it to "click" into place immediately, but after sitting it on there and pushing on it for a few minutes, I can get it to click. So I usually do that so I don't have to fool with the extra layers - because adding layers I often have to do that anyway, so screw it, might as well try to avoid that process. heh.
I'm admittedly totally ignorant about prosthetics but having to wear 20 socks does definitely sound like a lot, so it makes sense you might just need to get it replaced or refitted.
What do you mean by "click" though? Is there some sort of locking mechanism to hold it in place?
I was ignorant about them until I got one :) Now I find them mildly interesting. Heh.
So first - I do consult chatbot sometimes for a preliminary reality check. It's often a quick useful answer. I'm sharing this though mostly because the attitude shift in its second reply was absolutely hilarious: maybe this will make you slightly smile - the immediate change in attitude of chatgpt after my followup - lol
https://chatgpt.com/share/680aaea1-a918-8005-a938-1afa61d6798a
When I started walking last year, I took a video that is suddenly convenient hehe: https://youtu.be/sjW6MdfT5jc?si=T90KYYjFCKvmvDt8
And probably more than you wanted to know but it's not too long.
And I'm that video, I'm not sure how many layers that was. The socks come in different thicknesses - one ply, three ply, and five ply. I currently wear 2x5, 3x3, and 1x1. 20 ply in total. Which also happens to be all the socks I currently know where they are.
Although these days what I found is that it takes me 5-10 minutes to get the clicks because I have to put pressure on the leg to get that fluid pushed up so it'll fit and click. But I always had trouble asking more socks later, so if I just put weight on the leg from the start, I get my clicks in a few minutes and don't have to deal with it further.
Fewer layers of sock means pain to walk as less pressure is distributed to the sides of the leg and more to the base of the remnant limb. And 20 is about consistently right for me.
Y'know, I never ever thought to ask ChatGPT about this. But in retrospect that seems like the perfect sort of question to ask it, since googling actually didn't bring up many useful results. And LOL, that tone switch was great.
Thanks for the video too! I had no idea that leg prosthetics worked like that, with the gel liner and cup with the peg protruding from it. Now I can also see why more socks would be more comfortable too. The more padding the better. But if the socks interfere with the snugness of the fit, I can also see how that would be an issue as well. So you probably have to strike a balance between the two, I suppose.
p.s. You have a very pleasant voice, BTW. :)
I know ChatGPT (et all) can have hallucinations, but it has seemed to me that it's really good for general knowledge - especially if you're not totally relying on it. I've had a time or two where it gave obviously wrong information, but it tends to be for more obscure things.
And yep, it's a balance. Too little padding and the bottom of the remnant leg gets to much weight and it hurts to walk. Too much padding and it squeezes the leg too much and that is uncomfortable. heh
Thank you for the compliment - I actually kinda hate my voice. But I know most people hate their own voice, so I'm not too worried about it. lol.
That's actually one thing I really appreciate about Google's Gemini AI implementation; It cites its f'n sources. ChatGPT doesn't, and generally can't since even if you ask it to cite sources it often hallucinates non-existent ones, or links to totally irrelevant sources that have nothing to do with the subject.
E.g. Here is the same question asked to Gemini:
https://g.co/gemini/share/a13ea0e49f34
And here are the listed sources:
https://primecareprosthetics.com/blog/prosthetic-socks-guide
https://amputeestore.com/blogs/amputee-life/prosthetic-sock-101-a-product-guide
p.s. There is definitely no reason to hate your voice. It's very gentle and pleasant sounding. You would make a great children's story narrator, IMO. :)
lmao I've never seen ChatGPT say something as colloquial and natural as that "Yeahhh..." lol. Def got a smile out of me.
It definitely was a surprise. I guess it matched the tone of my "lol".
Today's update: If it's not one thing, it's another. After taking my regular meds last night, my blood pressure has been stupidly low all day - 80/50 this morning tomore lke 90/60 this afternoon. So I'll be reducing my pills night after tomorrow - I don't take blood pressure meds the night before dialysis, and tomorrow is another dialysis. So I've been in the chair all day, whee.
The good news is that the car is ready. The bad news is that timing-wise we can't pick it up for a few days. The worse news is tha the other car will have to go into the shop to get the a/c fixed.
Money-wise this is all a disaster, and I really really need my business to start picking up a little more quickly. lol. I'm not able to keep my credit cards paid off and they're beginning to stack up. Whee.
OTOH, able to spend a little time on the Minecraft servers today. So that's nice :)
Sorry to hear you're going through such a rough patch beyond even the health issues. It's never just one problem at a time, is it? :(
Out of curiosity, what does your business do (if you don't mind my asking)?
You haven't figured out that I'm an annoyingly verbose twit who likes to blather on about anything and everything, but especially myself? ;-)
My primary goal is to be a turn-key hosting provider for web designers and design firms. The idea is that I have been doing hosting for over 20 years. I'm pretty good at it. And I've worked with WordPress for something like 15 years. I'm pretty good with that.
But what elevates things to being a turn-key solution is that my lifetime Divi¹ access allows me to host WordPress sites with a licensed copy of Divi - meaning that someone paying me for hosting can use my Divi to design the websites I host. Now, if they were to move away from me, they'd have to buy their own copy, but they could certainly do that.
What I'm good at is keeping the server running fast and secure; keeping WordPress running fast and secure. Doing things like setting up SSL (so the site runs https), making email accounts, various administrative tasks that a new web designer might not have learned how to do. So I can be there to support them.
Although I'm also a designer and I'm picking up clients that way. The main project in progress is https://TheatreBunch.com/ - not much to see yet, but that's all my work. I outsourced the basic logo ideas to a friend who I'm also using for SEO things - but I took her work and substantially changed and refined it.
So while I don't normally like to praise myself… I do have some professional skills. heh. I still deal with imposter syndrome, but I've learned that so many people with way less skill level than I have are making money at this, so I shoudl be able to as well, dammit. :)
I'm also trying to position myself for small businesses - I have experience with administering Office365. I've also got a NextCloud instance running on my server, which is another option for small businesses to get file sharing and business-only chat like Teams. It's actually a pretty mature product.
So my target audience is small to medium-small businesses along with web designers.
I also want to mostly spread by word-of-mouth. I'm not allowing random people to sign up for my service — too many scammers our there get hosting, set up scam/spam sites, and walk away when they're caught. I don't want to deal with that. And with time, I think the word will spread.
I'm also working hard to make sure I don't allow any server to be overloaded - so while my prices are much higher than bargain hosting, my quality is top notch, which is what a business needs.
That said, if anyone here needs hosting, I have always enjoyed offering free or incredibly discounted hosting to friends. So if anyone here wanted to get into web design.... I can help. And the only cost would be the registration of any domains for the site - which can be done at Namecheap (for example) by the designer, or my charge is the Namecheap price rounded to the next whole dollar plus five bucks just so it's barely worth my time. heh.
Probably a longer answer than you wanted, but I mean… it's me. :)
¹ a WordPress theme that includes a page builder — so you can design full-blown 100% custom websites, integrated with things like Woocommerce for an online store, and many many other things
Am former web designer so know what you're talking about. Although I did bespoke rather than framework/CMS based sites so wasn't in your target demo. I wish you good luck and much success with your business though! It sounds like you have a solid plan, and just need to network like crazy now to get the ball rolling. :)
Speaking of which, have you gotten in touch with any business associations in your area? They might be able to help connect you with some small business owners that could use your services.
Thank you for the reminder - I'd meant to get in touch with SBA and forgot. Although I'm still working on my main website. I don't have time for that what with all the other stuff I'm doing. lol
happy to hear the update, even on down days. keep at it, daychilde.
I'm going to have to rename this thread. :|
Well, anyway. Today's journey. Not long after dialysis started, my blood pressure dropped. I'm not sure what it was, but I was under 100 on the systolic, which is what sets off beeping when it's detected. But I already knew - I've learned what that feels like. (Spoiler alert: as my BP drops, my right ear started to go muffled, then my left. Then my vision starts to tunnel in).
So we paused the pulling of liquids - but continued the pulling of waste. This is normal.
I developed chest pain and shoulder pain that didn't go away until they gave me a bit of saline.
This implies that we took all the fluid my body could spare and we were trying to take more. Although things are not so clearcut, but it is the most likely.
Which is annoying because my "dry weight" - the target weight we're s hooting for for after dialysis - is 123kg. I ended today at 125.5kg.
It is possible that the mounjaro I started last week has slowed my digestion down even more than it was - I mean, that is was it is designed to do. So I may be carrying fluid and foods along mydigestive tract. Either that, or I gained a significant amount of weight in the past couple of days. meh.
But this has been basically the main problem with walking on dialysis days recently - we've been trying to pull too much fluid and I end up ruined for the rest of the day.
Well, it is what it is, and when I am able to walk on the off days, I'll take it. I'm gonna do my best tomorrow and Monday, although Monday morning I'll be in Richmond for a second transplant initial eval (second transplant hospital, first eval with them). So we'll see how that all goes.
“Daychilde’s perseverance (and support) thread”
Yes, "Daychilde's perverse (and attention-seeking) thread" works well, I think. ;-)
(don't mind me, self-deprecating humour is always fun. I'm not actually being down on myself!)
<3
More of a medical update since didn't getto walk today.
Apologies for disjointed - been up 36 hours. But was headed to bed annd had to do somethingcausing me to be awake, will crash probably a couple of hours. Thanks, stupid body.
So had gotten referrals to endocrinology and heart specialist for today.
Endo was earlymorning. He's friendly but a little more pushy about some traditional pushy things. Which is fine, if a bit annoying, but is fone. He's got some goals, but confirms - will be sending in short-acting and long-acting insulin, so for now, I'm back oninsuling - whenthe script gets filled....
Cardiology was a bit disappointing. I was in and out in 15 mins tops (with doctor), maybe more like a scant 10. We were supposed to talk prep for kidney transplant - in hopes of increasing my chances and success, and... well, it was more like a simple checkup. So I'll follow up with primary care. Maybe I didn't ask the right things. But he seemed - while friendly - in a complete utter hurry.
So I have more goals, more meds.
Tomorrow is dialysis, BUT we might finally have my new dry weight. If I can come home without fatigue/hurting, I'll gladly walk. Well, not gladly, but still, gladly.
Today ended up with zero time while I was able. Although we did work on testing me getting wheelchair int he car. It failed, but we'll try trunk instead of back seat tomorrowafteroon. And I drove from Williamsburg down to Virginia Beach - over an hour.
sounds like a hectic day, with some frustration mixed in. sleep well, daychilde.
Dunno if I slept well, but I slept long for sure. heh. Crashed around 7pm I thnk and woke up a bit before 7am.
I'm worried for walking later - I crashed with my leg (and right shoe) on becuse I'd intended to get back up when I woke up - figured i'd wake up 3-4 hours after crashing becaue I usually do, but I sure didn't. But standing up, my leg is shrunk especially down so that it's painful to walk.
So I really do need to get a damn followup with prosthetist soon and start that process. heh.
But we'll see how things go. Even if I can walk a single "lap", it'll be walking.
Too bad walking in Minecraft doesn't count, eh? ;)
I am highly annoyed by the lack of walking progress, but there is at least some progress overall.
I drove myself to dialysis today.
As far as exercise goes, I'm not sure it's great for building stamina, but after dialysis, I went by my doctor's office to drop off a letter to be signed so I can get my handicapped placard.
I won't go into full detal about getting in and out of the car, but it is not easy. But it is doable. but I had been thinking about picking up a prescription before coming home, and nope. That was not happening, and it was difficult on that last out-of-the-car into the apartment. I wasn't in danger, but I feel right now like I did a bit of walking. heh.
This also means that once I get the reserved spot and placard, I'll be able to follow up wth the physical therapist who volunteered to help me. And maybe not only walk, but maybe do things that wlll help even more. Hopefully.
On dialysis itself - I didn't post an update, but on Tuesday there was an accident a few blocks away that knocked out power, and so I was done for the day early. That unfortunately meant not being able to get all the fluid off. So today - through not-my-fault for once - I had an excess and we were pulling too much, and it caued my BP to drop, so I'm not at my dry weight. Which also increases fatigue.
My plan is to walk tomorrow, though.Although if I get that letter and pick it up and go to theDMV, thatm ight count as my exercise. We'll see. I'll do what I can, which has been less recently.
Glad to hear you have made some progress on your health goals. Spending all your energy on just walking every day is probably not the fastest route to recovery for you. Doing things like being able to drive again, which enables you to see a physical therapist will help you to recover quicker than spending another day walking.
There needs to be other steps in your recovery process besides just walking, but walking alongside those other steps will be an effective recovery.
I do not want you to lose the goal of walking consistently, that will be beneficial in helping you recover. But I am also glad you are doing other steps in recovery besides walking, as that will help speed up recovery.
i am TRYNA walk more thanks VERY much fr the PRESSURE
;-)
I haven't lost the goal of walking - and in fact, I am so incredibly frustrated by the gaps right now. It's less daily walking and feels more like monthly walking.
But I persist. And I will not beat myself up when overall I am making progress. But by golly I want to. lol.
Your kind words help me refrain.
There was a moment on Bojack Horseman. I'm going to paraphrase. I often have difficulty remembering exact phrasing, but in this case, it's alright. It's a principle of healing, of growing: You got to do it every day. It's not hard doing it every day, but it is hard doing it every day. But you have to do it every day, and that is hard. But that is the progress: Every day, there is progress, even if it feels small. Each step is small, but when you look back, it can be amazing how far you've come. But you have to take every step.
Well, I haven't taken every step, but I have taken steps, and I am taking steps, and I will take steps. For as long as I can.
Thanks for continuing to share these updates, Daychilde.
In addition to rooting for you, it's also a chance to briefly walk (cringe/sorry) in someone else's shoes.
It's also nice to feel helpful (in an annoying / poking sort of way).
Wishing you well!
Ditto. We're all rooting for you, @daychilde! :)
A lot of my response was trying to balance the idea of having you extend grace to yourself on missing a day of walking due to dealing with other health things, while also not creating excuses for you to use in not walking.
A thought I had is what if you move into a three day cycle? Each day, you do something to get healthy, but only one of the three days has to be walking. The other activities could be dr appointments, regaining the ability to drive, or even just investing more time to cook a healthy dinner. This would give structure to have you walk consistently, while also having flexibility to do the other steps to healing as well.
Now, I am going to speak from my religious background, but I think there is merit in it from a secular perspective. After two sets (six days), take a sabbath. This is a day where you do not have to complete a health task. I started practising a sabbath in university, as when in school there is always the nagging thought "I could be doing homework", and so you never truly rest. Having a day where I intentionally did not do homework allowed me to finally rest, and my productivity did not decline as I was motivated to do work the next day. This is especially true for ADHD, where that nagging thought to be productive but not be motivated is a constant struggle. Taking a sabbath removes that nagging thought in your head, and allows you to fully engage in the restful activities. Allowing you to rest one day has the potential to give you the energy the following days to do your one daily healthy task.
Brief update for the day: Dialysis continues to be rough. I think we haven't found the true dry weight yet. PA was there and bumped it by a half kilo, but I was yet again hitting low blood pressure toward the end, as well as being - well, not in pain per se, but extremely sore all over - chest, stomach/core, legs were restless and annoyingly so. I couldn't find a comfortable position in the chair. The last hour was very uncomfortable.
And it took me a while to be able to transfer into the wheelchair after. Then, when I transferred into the car - I'm putting the wheelchair in the trunk and leaning on the car to get to the driver's side - I had a bit of difficulty with the chair and dropped the cushion, which has been a worry because bending down is not something I'm really comfortable with. I managed to get in, but it would not have been much more than I could have remained on my feet. So I was a bit uncomfortable with the safety margin.
Alredy, getting the chair in and out of the trunk is a little close on the safefty margin for me, but that's because I'm a bit conservative on those margins. I've been abslutely fine so far, with this being one possible exception, and even here I was fine, it just made me push a little close to getting to sit.
Well, actually, that reminds me that I think the first time I did the chair, when I was taking it out, it fell on its side on the ground, but I did managed to get it upright.
I was done at noon, and I am just now feeling like I could perhaps do something. What I'm going to do is less great for exercise, but more for family - which is to help do some meal prep for my wife, as we both struggle with that, but her especially so. And we cannot afford not to plan ahead. Things are beyond tight - in the negative for now, even as I'm struggling to keep things trim.
But I'm happy that I get to launch my first client's site tomorrow - it's a simple starting place, but it's still nice to get to that point.
Try not to be hard on yourself for the low blood pressure days.
You’re at high risk for orthostatic hypotension which means your blood pressure could tank further upon standing and walking and could make you pass out. Especially if you’re already symptomatic while sitting.
But of course you probably already know this, I also wanted to mention this so others can have more context for how frustrating this situation must be.
Well, I do try not to be hard on myself as I know that's not my direct fault, for sure. heh. But thank you.
After today, it looks like we really just were pushing the dry weight too far - that I put on some weight (and/or as at least one tech suggested, I might be holding fluid out of the reach of the blood, which apparently can happen). So basically, we were causing the problems with the dialysis.
Today I actually felt mostlyalright at the end. My pressure ddn't drop, at least. I had restless legs that got annoying, but I was still able to get in a few short naps that made the time go by better and faster.
I still have a headache now, and fatigue is back, but it's still not as bad as it has been. heh
Thank you for your kind words <3
Thanks for the updates over the past two days. Nicely done :)
Hope the meal prep went well, and the site launch as well.
You continue to live up to your name :)
Site launch in particular went perfect. I've not done a live launch quite like this, and this is the first time under Virtualmin vs. cPanel - Virtualmin has built-in WordPress cloning, which is handy. but it has to be on a clean site, so I knew I'd hae to dump the database and files before I could clone the dev. So I set up two browser tabs ready to go - one ready to dump the existing installation, and one ready to clone. I also prepared live backups I could quickly clone in case of a problem.
Went to actually do it thinkning it might take a couple of minutes, or up to five in case of some problem - and it took like 10 seconds to dump, then like 15 seconds to clone. And bam. Done.
So good news is I feel more comfortable doing that in future. This was a tiny site, but still, even a larger site won't take that much more. heh.
Bookmarked thread and will check back periodically for updates. Nothing like the pressure of audience antici..........pation.
I managed a couple of long replies here and did some Minecraft, but not much else today. So I'll try again tomorrow.
Might be calling out from dialysis. But hopefully not.
Have a nice weekend. :)
Hope you get done everything you need.
Evening poke.
Hope the nice weather helped you get some steps in, Daychilde.
Frustratingly no, but I am determined to tomorrow. I hate thi answer. It took me a while to make it because I want to ignore this badly, but part of the social contract here is honesty. :|
Appreciate the honesty.
The path you're walking isn't easy.
any luck today?
Mid day boop!
More extensive reply to Positive, but tl;dr dialysis be hard recently, but I have a reminder set up to help me get walking tomorrow at noon Eastern :)
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. :)
poke - how did today go, Daychilde?
Lots of trouble getting the videos today. meh. Just posted the update :) <3
I may well not be walking today. I thought I might, as this was the first time in like a month that I got out of dialysis and felt anything other than terrible. But after getting home, energy dropped off quickly and fatigue set in hard. I've noticed that pattern in the past - fatigue after dialysis. So if it does get better, I'll see what I can do. At the moment, it's taking a lot for me not to go to bed. heh.
Monday will be cardio examination in Richmond for Henrico, which has already told me "not yet" on transplant, so not expecting any great news.
So I wanted to get this posted to make sure I said something at least. heh
I also had hoped to start gumbo today, but that's probably going to slide to tomorrow. Gumbo, cabbage, squash, sausage veggie back for Rachel, so I'll have enough to do. heh
... and now i want gumbo. ;)
I'll give you my basic framework. I hesitate to call it a recipe. :) I do a chicken sausage creole gumbo.
But first, a note about gumbo - I don't know if you know, but gumbo requires one of three thickeners: Either roux, okra, or gumbo filé. I grew up with okra, as I grew up with creole. These days I like to use roux, but more for flavour. I love Kary's dry roux - I'm not afraid of fat, but I want to put my own fat (butter) in there, so dry roux gives me the flavour, and since it's decently dark, it thickens less, so I get everything I want out of it. :)
Basic ingredient list:
With dialysis, I'm needing to concentrate on protein, as well as avoiding processed foods. So I've kinda gotten in the habit of getting a 3-4lb pack of boneless skinless thighs, cooking them in a little butter on the griddle, then chopping them into bite-sized pieces, ready for recipes. This is really making cooking a bit easier. They fit nicely on my two single-burner sized griddles, so I just melt a bit of butter, sprinkle with salt and msg, brown on both sides, and being thighs, they're still tender and delicious with a tasty bit of malliard.
So for this gumbo, I'll assume I have that on hand, then chop up 3-4 medium to large onions, half a bunch of celery (I always look for more leaves as I love the leaves in gumbo), a bell pepper or two diced. Saute in butter until the onions are translucent.
Now, for my personal taste - I cannot eat raw onion. There is something that makes them "hot" and that chemical trigges my gag reflex. Also because of that, unless the onion is so soft that it basically disintegrates, I have trouble with them as well. Same with raw bell pepper. So at this point, I add a bit of water - maybe a cup - and simmer that for 20-30 minutes so that it's beyond tender.
I don't feel a need to brown my sausage, but if you do, brown it somewhere in there. :)
Then I add everything. For liquid, I generally try to make sure there's liquid around to the top of the meat and veg, but certainly not an excess. But I want to make sure that liquid tastes good even before cooking, so I adjust the chicken flavour (i.e. stock or bouillon) and salt/msg to make sure that's there. The MSG is a secret in so much cooking. There's already so much greatness here, and you do get umami from the tomatoes, but you really do benefit from a solid MSG boost in the same way you do from salt.
Let it simmer or slow cook for a couple of hours. Serve over rice.
On the roux - I'd add a quarter cup to the whole pot. It is just for flavour boost. While I adore roux gravy, I don't want it to overpower the gumbo.
I also don't add cayenne, but if you like a bit of spice, definitely boost with some cayenne. I like the faintest touch from the tabasco or louisiana hot sauce. I don't generally like my food to be spicy, but i don't mind if there's a tiny bit in the background.
If you catch me before tomorrow, I'll try and jot down measurements when I make. But I figure things are pretty flexible, and for the most part, things work out by feeling, and if you want more or less of something next time, it's easy to adjust. heh.
This does freeze well, although historically when I make a gumbo, I don't bother, because what I eat for the next few days after making a gumbo is........ gumbo. :)
Gumbo is one of those things that I know about, but had no appreciation for the complexity. Thanks for explaining!
enjoy the cooking tomorrow!
If I have energy it will be fun. If not, I will deal. Heh.
Cajun gumbo tends to be a little simpler: chicken, sausage, roux, Trinity, salt, heat. Some seasonings. To my mind it's more like gravy soup/stew. Tasty, just different.
And now I'm a bit under the weather. I don't have a fever, but it feels like a mild cold, although on top of the existing fatigue, it's hard to tell.
This is building frustration again.
Tomorrow I go to Richmond for a cardiology appointment. Not sure what all tests they're going to do, but it's likely to be a mild pain in the arse. But I already know the concluion: No transplant for you yet. So it's sort of a waste of time, except it's also not a waste of time.
I don't have the referrals for the cardio rehab, nor the physical therapy yet - because that was on Friday, and we're on Sunday coming into Monday, so if they're really quick I may miss calls while I'm at tomorrow's appointment or Tuesday's dialysis. But that's alright, as long as they leave a message, I can call back.
So I should be in the process of getting those things set up soon.
And last night I was finally able to take another dose of mounjaro again, which will help with weight loss.
I did well for breakfast - Carnation instant breakfast is not a respected thing these days, but it's actually got decent protein, and I figure the vitamins can't hurt every other day or so. I currently have some deli ham and pumpernickle that I don't want to go bad, so had a sandwich (with swiss, and bread adn butter pickles). I then had a third meal, which is unusual, but considering the source was not to bad - a McChicken equivalent from Sonic, small tots, and a sprite zero with coconut flavor.
I ended up not great on the sodium and not great on the liquid intake, but overall it's not too bad.
I didn't get much in the way of walking done, but did a little. More to say I did than anything else. :| Still inside as the other walker is still blocked. meh.
Didn't get the gumbo or other veggies, so will see if I can do some of that when I get home tomorrow, or Tuesday. I'd rather not wait until Wednesday, but the chicken can hold until then if need be.
How did the cardiology appointment go?
It went.
He was very dismissive upon my arrival, although when I mentioned the goals that had been set by the other transplant center, as well as explained my medical history, he seemed to be a bit more on board. Annoying, but understanable.
I present as very unhealthy. Because I am. I present as not taking care of myself. Which is not the case.
…although I say that and I forgot to take my long-acting insulin when I got out of dialysis, and because I'ms truggling with that, thanks to my choice for breakfast, glucose skyrocketed. But even though the long-acting isn't short-acting, it's still helping to bring me back down. Meanwhile, the short-acting is flubbed and pharmacy is trying to argue with insurance on my behalf. Whee.
Things move so damn slowly. heh.
I did get a call from nutritionalist, although because I technically have that available via my dialysis place (the one there is a really nice person but useless) she's sending me info so I can get authorization from insurance. Although in fairness, I feel this is the least important thing I'm working on, so if it fails, it's not a huge deal. heh.