As a former night owl, I have lots of stories and examples of how true that statement is. I have recently come to the conclusion that nothing good happens before 8 am either.
Whenever possible, I make my first appointment of any day at 10 am. I’ve done this for so long, I don’t even remember why I chose this time. I currently have Physical Therapy ( pain and torture, pt, etc) on Tuesdays and Thursdays at 10. I tend to make my parents appointments on Mondays and Wednesdays in case I need to be there with them, and Friday is for last minute “Oh Fucks.” This week however, my parents had their 3 month appointment with the GP at 10:20 am on Tuesday. Fuck, I have PT at the same time! After some fenagling, I was able to move my appointment to 8 am on the same day instead of 10. GRRRRR
I went to bed early Monday night, well at least I tried, knowing that I would have to get up at 6 to consume enough coffee before I had to leave at 7:30. When the alarm went off at 6, I threw the phone across the room to make the god awful noise stop. I knew I wasn’t going to see the kids or grandkids. ( About the ONLY reason to get out of bed before the sun) Why the hell would I ever set an alarm for 6 am? Thankfully, Einstein came in to remind me that I had did have SOMETHING early today. Fine Fine, I’m moving.
As the coffee began to work its magic, I remembered what I had to do…. Doctors! I managed to ATTEMPT to leave my house at 7:30. I say attempt because I couldn’t back out of my driveway without a kid appearing behind me. Oh School, I remember that! Shit that means they are trying to catch a bus, which I will no doubt get stuck behind. Whoops!
When I finally left my subdivision there were cars everywhere! Where the hell did all these people come from? Crap was I going to be late? Ugh
I did actually make it to PT on time. I even beat some of the therapists there. In the end, I did survive but I still don’t recommend it. Tomorrow I have to be on the road by 8 am again to drive an hour and a half to meet a new neurologist. Definitely not my first, second or 3rd choice, but considering it took me 3 months to get a damn appointment, I agreed to the horrendous time.
Next week I’m back to 10 o’ clock appointments. 8 o’clock appointments are for the birds!
I have temporarily had to use wheelchairs, walkers, rollators, scooters, canes, and walls many times over the years during recovery from an MS flare up, or some other self induced injury. I am trying to be grateful that after having Multiple Sclerosis for over 20 years, I am only now at the point that assistive devices seem have become a permanent rather than temporary feature of my life.
With so many assistive devices available in the world today, how do you decide which one is perfect for you? Is there such a thing as THE PERFECT ONE?
I believe the answer is NO!
While I am learning to navigate this new world of mine, I’m hoping to not only share my experiences/opinions, but also to ask you to share yours as well if you don’t mind.
For any of you that have written about this in the past, please feel free to drop your link in the comment section as well. Maybe someone will “stumble upon it” and find the answers they have been looking for?
So many options:
Power WheelchairRollator/ WalkerStandard (transport) wheelchair
Although it’s not pictured here, I think MY STICK, is my go to, most used aid. Simply for it’s convenience. It’s small (in comparison to the other options) and definitely portable. I didn’t realize how much I had been using walls, people, and other objects until Covid tried to make me fear touching people and things and vice versa. Unfortunately, I forgot my stick in Colorado on my last visit and it seemed impractical to ask my daughter to send it back. The problem is I can’t find one JUST LIKE it. It’s much taller/longer and I feel even thicker than any cane I have seen. ( 4 or 5 feet tall)
I ordered the one (actually 2), pictured below, from Amazon when I got home from Colorado. While the price was right, and bonus that I have now have two for next time I lose one, it doesn’t feel as strong as the wood one. I do like that it will “break down” or collapse when I am at a doctor’s or in my car etc, but I’m afraid it will break down when I don’t want it to. We shall see…. maybe there is another story in the making?
My 2nd go to is the rollator/walker
After one of the many times, I had to “learn to walk” again, the doctor and I discussed the possibility of my using a walker.
I was concerned that leaning on a walker would not help my posture. Maybe it would improve something, but at the cost of something else? He had to write a special script for me to have a “taller than average walker” with a bench or seat on it so that I could use my arms to help keep me upright, not just to help me raise my legs. (if that makes sense) The result is that I have a BIG, like bariatric, walker that I love, BUT it is SO big, it doesn’t fit in my trunk, and to be honest it’s kind of heavy. I almost feel invincible when I am using it. I am 90% confident, I can keep myself up if I trip, and I have a ready made seat available if I need it. * Bonus, if you sit on it, someone else can push you if they had to.
Another option I have – The manual or transport wheelchair
As far as wheelchairs go, I believe this is the smallest and lightest type available. It’s actually the first assistive device I had to use because I couldn’t move either of my legs. I’ve also used it multiple times when I haven’t been able to bear weight on a lower limb from surgery etc. They do make knee scooters, and crutches, but with my lack of balance, using them would be asking for trouble. I also use mine when I have to a distance of more than 1/2 a mile to make. I hope the more I use the rollator, the stronger I become and that distance will be longer. I used to try walking behind the wheelchair (using it as a rollator/walker), but not only can it not support you leaning on the handles, without enough weight on the seat, but you have no way to reach the breaks if you trip.
I have used a wheelchair at the airport for years, which allows me to still travel as much as I do. Most airlines have changed the type of wheelchairs they have though, so it’s thrown a bit of a wrench in the works.
I can completely understand WHY they changed.
This type of chair allows them to not only push more than one passenger at a time, but allows them to store the passenger’s bag under their seat.
Once they have dropped you off at the gate though, you can not move if you have to use the restroom or something unless you have carried along another assistive device. There are no wheels on the sides of the chair for you to use.
I have carried my walker or stick with me, when I could walk, but I’ve had to keep my own wheelchair with me when I was not able to walk at all.
Bonus or alternate uses for a wheelchair:
Instead of attempting to carry something with both arms, use the wheelchair as a cart or dolly.
I used to rock/roll the twins to sleep. We’ve also used it as their “stroller” because the weight in the seat allowed me to lean a bit. If my legs got tired, I could put them on my lap, tie them, in and use my arms.
The Power Wheelchair
The last piece of equipment I own is a power wheelchair that my parents purchased second hand for me. If insurance doesn’t cover it, which they most likely won’t if your condition is temporary, and maybe even then not, these chairs are EXPENSIVE.
I most commonly use mine outside of my home because of the uneven ground. I don’t have a lift or other way to transport it, so home it stays. I actually started using it a lot more than I ever have after the last surgery. When you are using a manual chair, if you cant use your legs, you have to use both hands navigate which makes balancing laundry or trying to vacuum difficult. It proved to myself that I could do it, but using a power chair with one handed controls allowed me to use my other for whatever task I was trying to complete. Much easier! You probably shouldn’t, but when I could keep my legs straight, I could use the chairs power to push heavy things.
I want to remind you that I am not a doctor or expect at any of the things I have written about today. I’m trying to accept my knew limitations as gracefully as possible, and hope that by sharing this information, it might help. Again, if you use assistive devices or have any tips/ stories to share, please insert your link or comment in the comment section!
For several years now, my girls and I have had a “Family” group chat on Facebook Messenger. ( just the 3 of us) I think I started it to try to facilitate more conversations between the two of them. While I am very close with both of my kids, they were not “friends”. They love each other and always have, but they focused more on their differences than similarities. Creating the chat was a great idea! I think it has allowed all of us to be more connected. Someone writes something in it every day. Sometimes it’s just the two of them, sometimes we are all there. More on that another time though.
They where hauling their motorcycles and tools in their trailer while another friend was hauling their furniture in his semi. When we said our Goodbyes, I reminded her to let me know when they made it so I wasn’t constantly bombing her with “Are you there yet?” messages.
I have not been to the new house yet,(I’ve only seen pictures and videos, but Google tells me it should take 10 1/2 hours (10 hours and 26 mins to be exact). I know that pulling a trailer will take a bit longer, so I waited until 6 O’clock to ask how they were doing. She responded that they had gotten stuck in some severe thunderstorms and flooding, but were doing ok.
At 9 O’clock, I messaged asking, “Are you there yet?” She responded that they had gotten caught in another storm, which slowed them down, but they were 33 minutes away….. “Almost as bad as our 16 day road trip on for my 16th Birthday Mom” ( that’s also another story) .
“Ok kiddo, I love you! I’m going to bed. Be safe and don’t forget to text when you’ve made it”.
At 9:30 they text came in that they had made it. That’s all I needed to hear!
Thing One (my other daughter) had been “radio silent” yesterday. Sunday’s are the one day that both her and her husband are home all day with the boys without having to be somewhere else. When I woke up this morning, there were 20 messages between Thing One and Thing Two. I quickly scanned them before heading for coffee. One of the messages said, “Fuck the hastas”.
Yep I NEED COFFEE!
“Fuck the hastas”, meant… “Fuck the Hostas” (plants).
Apparently their friend had some difficulty getting the trailer into the driveway, during which her boyfriend said, “Fuck the Hostas.” I mentioned that I have not actually seen the house right?………. just the listing, so I pulled it up on Zillow…..
There are no hostas in the outside pictures……….. so this began the next set of texts:
Me: Hey kiddo?…. This is your new address right?
Thing Two: Yes
Me: There are no hostas?
Thing Two: Yes I know
Me: ?????? Fuck the hostas?
Thing Two: They aren’t on our property, they were the neighbors
Me: Um, whoops?
Thing Two: Yea, we will have to speak to the neighbors
Me: ROFLMAO…………. buy them a gift card or a plant?
She didn’t respond to that other than to send me a picture of her and her boyfriend standing in their new house holding a ginormous key.
I am happy that they are having a good day. Things went smoothly and they are no longer “homeless”. I am still laughing though because another conversation we had a couple days ago was…..
Thing Two: Chewy delivered Kota’s food to our old house, what would you do?
Me: Knock on their door, apologize, and ask for the dog food (don’t just show up and take it)
Thing Two: But then I have to TALK TO THEM.
Me: Um yeah?
Thing Two: No that’s what YOU would do. I don’t want to talk to them!!!
Me: Well you did ask what I would do…..
Thank you for letting me share my story with you. I am very happy for them. I know they will resolve the hosta issue and even become friends with their entire neighborhood just as they did at their old house.
On a side note…… I probably have 100 hosta plants that I could split and deliver on my first visit..
Not me, but my youngest daughter is. She texted me on May 1st and said, “I’m officially homeless”. I responded with, “YAY YOU KIDDO! CONGRATS!!!!!” Strange I know right? Obviously there is more to the story…..
My “baby” and her boyfriend have sold their house and are in the process of moving out of state. Since they haven’t closed on their new house yet, technically they are homeless. They have many friends that have invited them, and their dogs to couch surf (stay in their guest rooms) until they close on their new house on the 9th. Of course they were welcome to stay with us as well.
They left Illinois this morning. While I am going to miss just being up the street from them, I am more excited for their adventure. I am proud that they have made much better decisions in their lives at 26 than I did. I’m gonna hold onto that for now and be proud that my daughter is homeless!
True story. I was walking into a hotel with my walking stick, and someone asked me, “Is that a walking stick?” TBH, my first thought was, smh, “No it’s my broom!” “What kind of question is that?” Etc etc etc., but then I realized maybe they didn’t know, and I didn’t have to be an ass. After I replied that yes it was indeed my walking stick, the woman asked if I had a few moments and/or would mind answering some questions for her. We moved to the seating area and she began telling me that her doctor suggested she start using a cane, to help prevent falling, but she wondered why some people chose a walking stick. Was it stronger? Was it Vanity? Did she need a pair of them?
I hate that I felt I had to start my response with, “Well, I’m not a doctor, (for fear of being sued or something silly like that) but I don’t feel supported enough with a cane.” “By the time I feel like I’m going to fall, I’m halfway to the ground. A walking stick not only feels stronger (more supportive), but I feel that it allows me to catch myself sooner.”
We chatted for another 10 or 15 mins and I began to walk back to my room. I’m glad I wasn’t an ass and that I stopped to talk. I do remember having to use aides for the first time and being overwhelmed with the choices. Maybe I helped? I hope I helped. As I walked away, I did chuckle to myself that maybe I am going to add some bristles around the bottom of my stick to make it look like a broom. Definite conversation starter wouldn’t you think?
Lately, I’ve been toying with the idea of starting to blog again. I’ve made it as far as logging into wordpress and saying, “hey”. My first step though was logging in and seeing my last post about losing my Best Friend. I would quickly close the webpage wondering how you come back after writing that. Maybe? You just do. Maybe you start with a hello? I’ve done that. Maybe I share what I have been doing to move on for the last several months? Shrug. I’m not really sure what the future holds, other than another post talking about sticks, canes, wheelchairs etc. I do hope to see and talk with you all soon though!
MS Graceful...NOT! 