Memories can be so powerful. Good memories can help calm bad symptoms of chronic illness or bad pain from sitting in a wheelchair. Not always, but they help a lot.
This week I talked about some of my memories & the power of your memories.
(And for any nitpickers who get on my recollection of dreams, you've never been to the end of an Italian women’s party when the men come back to pick everybody up and something big’s going to be on TV!)
The world itself is in a constant state of change. So I don't know why I ever thought things would be different for me!
I took a few weeks off to catch up on some important things at home thinking to myself but three weeks later I have a good amount of things done and underway. Now don't get me wrong, there are a lot of things that are underway. They just aren't done. I'm really not that uncommon in wanting, or at least hoping for, instant gratification.
I guess the hardest part is expecting things to be done in a certain order and "things changing" makes up my mind in what order I'm going to get things changed.
One of the big changes I had to live with this week is my editing time got cut really short. But I'm here! But if some of the things look choppy, please forgive me. If it's really that hard to look at just listen because the vocal sounds pretty good. LOL
*What construction sounds you hear from time to time during today's program are not house reclaiming it’s the cats trying to organize for me. They're not very good at it.
The more things change the more they stay the same. This is actually a replay of “Rant" from last year. I am feeling frustrated over many of the same things only some of them worse. I'm also dealing with it better. Maybe that's a warning!
I've got some things to tend to but I'll be back in 3 weeks.
Another week of things going wrong punching me in the face. BUT another week when my face survived!
It was also another week where I recorded edited and did the whole shebang on Wednesday all day and most of the night. I'm uploading and going to sleep.
Hopefully things are getting back to normal and I'll be tackling "list 2” to get my life back!
Ever have one of those weeks when it seems like EVERYTHING is stacked against you? One thing goes wrong and then soon as you have that figured out something else goes wrong. This was one of those weeks.
And for once I'm not quoting Trevor Noah. I'm paraphrasing Forrest Gump. Stubborn is a stubborn does. No matter what gave me trouble this week I was gonna get done what needed to get done. And it got done.
AngieBCo on Etsy
etsy.com/shop/AngieBCo?ref=simple-shop-header-name&listing_id=803071686
Today starts with a story about war relics and goes on to talk about America's Civil War and the Constitution. The song speaks of the fear that a Civil War could happen again.
Luke Combs is not afraid to talk about it and neither am I. I hope you're not either!
#NaniMusic2
National Civil War Naval Museum portcolumbus.org
Luke Combs, Billy Strings - The Great Divide (Lyric Video) https://https://youtu.be/2LFP2KLabp4
Luke Combs talks about The Great Divide https://youtu.be/05hLmEvHMkw
A better version of last week? Well certainly a better looking version than last week!
It includes me actually drinking from a coffee mug that has a story, a fun story. And some actual smiles!
I noticed, even at a lower level, I only have one extra chin sometimes that’s not that prevalent and both of my dimples are coming back. (Somewhere between the thyroid medicine and WW I'm even starting to look like my old self.)
An unplanned week off did me some good!
#MultipleSclerosis #wheelchair #SuttonWV
Sometimes things can get overwhelming. I've jokingly said before that I'm the most overworked disabled person I know. Some are by choice. I don't HAVE to do Chronicles of Nani and yet in so many ways and for so many reasons I do have to do it.
But there are other things too. My husband works all day and there are a lot of things he doesn't have time to do. It's a choice between having dinner or getting me clean. I have to be honest sometimes that's a rough choice. But my being clean, while it's healthier in the long run, doesn't put dinner in his belly.
So I have a list of major priorities that I have to take care of. I'm not physically able to clean the house but I have to get the house tidied and in order or I can't get a home health aide that will stay and work with me to keep me clean and healthy. I also need to make sure that things are put away in an order that I know where everything is so that when someone asks me or some thing is I can tell them exactly where to look. I have drawers labeled for everything and I'm going through now figuring out if I need to get some more drawers. I am also desperately trying to figure out a way to get my haircut and the color adjusted before looking at myself drives me crazy. (That part is personal but it's very important for my mental health.)
So there's an abundance of things I need to do, but there are things that I need, especially for my health, and want really badly. And I'm the only one who is going to be able to get them done. So this wiek I am taking a break to try to get things caught up than I need to and I'm showing a rerun from a year ago that I should've watched a couple weeks ago.
Now you see me, now you don't? Oh you'll see me in this vlog, just not a ton at first. My husband washed my hair when he was really not in the mood to be washing my hair. That only do I look like my hair was washed by someone who didn't want to wash it, but I look downright scary!
It's not fair! This blood premieres on my birthday and just one day after the two year anniversary of Chronicles of Nani on YouTube. I should get to look like happy party girl that is scary Halloween girl.
But there is some fun video of me in my house and some fantastic pictures of deer & fawns take a note just by me and my husband but with the permission of neighbors in the nextdoor group. Thank you so much to everybody that added their photos of sweet spotted little babies!
If there are disabled people who have nothing to do except sit around the house watch TV and if they're lucky someone will leave them bonbons to eat, I must be doing something wrong.
Okay, I was forced into early retirement because of MS and as a recovering workaholic, I'm not even sure I would have actually retired. I just spent a week with my dad, also someone who sucks at being retired. He limps badly, it hurts me to watch, but it's moving that keeps him feeling okay. Aside from being wonderful company and conversation for me he was also an incredible cook every day he was here, cleared the weeds out of my wheelchair ramp area, washed a huge backlog of dirty dishes, scrubbed the stove surface and repaired the broken trimwork that keeps the bathroom door closed. He also made a few trips to different hardware stores to get all of the pieces necessary to fix our broken mailbox. THAT'S how I wanted to retire someday. And probably still do a YouTube show about some thing because I really couldn't stop working.
But well my husband seem to have had a miserable week because he couldn't spend it all completely away as originally planned, I actually had a nice week of vacation. But then also left me with a HUGE list of things that I need to do including record and get the show ready to premier.
This week’s show is all about what you put together when you have about 10 minutes to figure out what you're going to do in two days to record and put together the entire thing. I think I'm still pretty good at what I did before I was forced to retire early.
(Of course thanks to MS, it took lots of caffeine to get it done and about a three hour nap when it was finished.)
The best laid plans of mice and Nanis…
When we last left our face in the recliner talking about home health aides, things ended with the happy announcement phone with an aid that was going to come in every day while my husband was away. Now is where the “best laid plans” mine comes in.
The nurse who was coming in to do aide work for the week is terribly allergic to cats. I don't usually think about the cats first I worry about the Hoyer lift first
So we had to come up with Plan B, definitely some thing I learned and taught my nieces about from Stephen Covey’s 7 Habits Of Highly Effective People Book. "Always have a back up plan.”
That works for any plans anyone has, but it also works for when you suddenly find that you have a chronic illness or you end up in a wheelchair. That's definitely a situation where your best laid plans for life change.
It also prompted me to look up the phrase "the best laid plans of mice and men," because I was curious about exactly where it came from. A Scottish poem written by Robert Burns in 1785. It's fascinating how many books, other poems, movies and even a Jethro Tull song have mentioned parts of that poem or parts that are translated from that poem. The Wikipedia page (It's not a very long page) is worth reading just to find out how many things you've heard it in. Very cool!
Stephen Covey’s Seven Habits:
www.franklincovey.com/the-7-habits/
Robert Burns’ poem To A Mouse:
https://en.wikipedia.org/wiki/To_a_Mouse
Whether it's a chronic illness or a wheelchair or both, we all have a need for assistance. Sometimes it takes a while before we admit that. It's human nature to try to be determined enough to do it on your own as long as you possibly can. But when you do need that help you need either someone that lives with you and is there 24/7 or you need a home health aide that can come in and help you with the things you can no longer do alone.
There are a lot of us that need more than someone to just keep us company, microwave a meal or play a game of checkers. I can't move without a patient lift and I'm not capable of cleaning myself without assistance. Those types of home health aides are not so easy to find. Back to, as I've said before, “home health aides are the most overworked and underpaid members of the medical pyramid." Truly skilled people are so underpaid that they either move on or continue with school to become qualified for a better paying job in the field.
In the area where I am it is especially difficult to find not just qualified for my needs, but Home Health Care at all
This weeks vlog has happy moment and sad moments. And keep your eye on the left side of the screen if you just want to see lots of cat and kitten play video bombs!
Be sure to stick around for my happy ending slate!
The editor promised there would be Short Stories 2 because I talked too much in short stories 1! (She knows me so well you’d think she was me! 😉)
So here are the last four stories I discovered in my early smash books.
Life with a chronic illness and in a wheelchair we all create and live with our own kind of normal. I had a few wonderful days of exactly that, including enough energy to accomplish "too much to do." With MS they don't last forever, but when they do it's heaven! Everyone enjoyed having me around, ESPECIALLY me!
Please come and enjoy with me a great weekend including a new kitten!
(Thank you David, Mike, Claudia, Sheri, my Dad & Aunt and Casey, the sweetest little kitten around, for making my world fantastic this weekend!)
One of my dearest friends and someone I've known since high school is my hero! She's just a year younger than me, she's returning to school to earn an associates degree.
Some people might find that scary, to return to school after all those years. I find it just a little bit different than what all of us do every day. We learn. Sheri is just smart enough to know that.
And going back to school is so incredibly similar to learning to deal with chronic illness and being in a wheelchair. We have to learn about our illness, about the wheelchair & about how to continue to exist the best we can. Like someone returning to college, we have to learn too, but we have never stopped learning.
This vlog is about things I've been doing to catch up in my world. It includes how one gets a weight when they're in a wheelchair and can't stand on a scale, Covid booster shots, my emotional support cat celebrating his birthday and my sheer joy in seeing and listening to the nearby carnival.
I'm so sorry I'm posting this late this week! It's been a really rough week for me, or anyway a rough second half of the week? Let's just say it's been a rough June so far as far as my glucose levels are concerned. I've got a new home health aide who's doing really well but she's not so up to speed that we've started cooking yet. So I'm not eating the best for my glucose yet because David doesn't cook unless it's directions on the box.
We are getting close to her having regular stuff down to the point of being able to do it quick enough to do some simple salads. Just right now I need to put together a grocery order that has fresh vegetables that go in those simple salads. LOL.
The point is, glucose is worse than MS for this, I fall asleep without any warning for hours. And then sometimes I'm only awake for a little bit before I fall asleep without warning again. This is why I really need to get the new aide ready to start cooking. It helps that she's excited about getting there too.
So, here is the intro for this weeks YouTube adventure:
We I'm back from being sick! At least as heck hope I'm not going to get sick again. This week is short stories from my homemade Smash Books. (Old school type scrapbooks with random things in them that I put together using some of my old scrapbook stuff when I couldn't scrap by hand anymore.) I took some pictures of the pages and from the pages and then filling them in with the short stories that go with them.
OK, I've had a couple of colds, 2 bouts of food poisoning & I just plain don't have enough help to keep me going. Very soon that last part, I pray, will be fixed and I can start being human enough to tape again every week.
I'm sorry that I just disappeared for a while but I'll be back again on my normal basis soon. As always prayers and good thoughts are all greatly appreciated.
See you all soon!
I know I don't write good old blogs like I used to. The truth is I'm very involved in my YouTube project and then actually has a lot to do with the fact that I can talk much better than I can type. MS has done a number on my hands. When I do type pages or even occasional replies, when I can, it's using the speech to text function and going back in and fixing what was right if my hands are up to it. (Because anybody that's ever tried to send a text on their phone using it, KNOWS how erratic it can be.)
I occasionally do special vlogs on YouTube called story time and now I'm adding the debut of a special one called Music. Just in time to be late for Valentine's Day the subject of the debut of the music series is love songs! I hope those of you that click on the blog and it's new check out the videos. And I'm definitely inviting everyone to play along and leave something in the comments this time. I hope you enjoy it!
But the truth is anyone living with a chronic illness or in a wheelchair, for whatever reason, is a superhero if you see them out there with everybody else. If you have no idea how much it takes to get any of us out there with you, or if you’re one of us and you think you're the only one that needs that much help, grab a cup of whatever is coffee for you and join us today!
Christine Miserandino ("Spoons" creator) 2010 annual NC lupus Summit
Stop on over to YouTube to view the vlog and subscribe to Chronicles of Nani!
We all fall victim to Murphy's laws. But Murphy lives in our guestroom. I talked last week about secondary illnesses latching themselves on to people with chronic illnesses and in wheelchairs because of things that change in their lives. I made the mistake of mentioning that even witth MS the common cold is more than common.
It turns out that Murphy watched that episode of chronicles of Nani.
I acted quickly when the cold symptoms started, and yes my doctor knows everything that's going on, so it didn't end up lasting as godawful long as it has in the past, but I actually had a cold. It knocked me on my butt for a little while and when I look at my face… Well there's no sense in making the intro longer than the actual vlog.
Once again I say, "a chronic illness is enough! We should be free from anything else." I think that goes for living in a wheelchair too. It doesn't matter how you ended up in a chair, you face enough challenges that you shouldn’t how many more.
Unfortunately it's those illnesses and the things that you can't do when you're in a wheelchair that leaves you very susceptible to lots more. The idea for this vlog came very simply. I was actually feeling too sick from one of those bonus diseases to properly prepare.
I’m back! After three months away, I have so much that I'd like to, I feel like I need to, share.
This week I'm talking about the reality that, to me, 2020 was so much better than 2021. Starting with a tear. that's not seen on video, Coffee in my Betty White coffee mug, the final exclamation point on how much I hated the biggest part of 2021, and on to the clinical depression that caused my over three months away from YouTube. (And most social media in general.)
YOU are the key to my finishing getting out of my current depression. My therapist and I agreed that after fixing other things they were causing my problems, it was going to be getting back on YouTube on a regular basis that would get rid of the last of my depression. (Thanks to all of you in advance.)
#depression #ClinicalDepression #BettyWhite
