Adios Pablo!

Some big news here this week. We've sold Pablo (my wheelchair van.) At first I tried to sell it privately, but what worked out best for us was just to sell it back to the company we bought it from in the first place.

It's still in our possession, but won't be soon. WOW! That's a very big deal. 

We've had Pablo for four years. We bought it just before the pandemic hit in January 2020. He was incredibly expensive. It's insane how much mobility tools are when you have to pay for them yourself. There are many programs to help families of disabled children, but not many for adults.

I'm relieved and ready to say "adios" to my good friend. Having it there in my driveway is a constant reminder of all the things I couldn't do and my reliance on others. Even though I occasionally drive it now. It's also expensive to maintain. It's not being used for its intended purpose. I'd rather pass it on to someone who can REALLY use it.

We have another car. A Kia Soul that has been a fantastic friend. Then my mother has a large Jeep Grand Cherokee. For now we're not looking to buy a second car. I am however on the hunt for a new bicycle! 

Priority Parking for Pablo!

Today is a big day. My first ever disabled parking plates came for Pablo. It was exactly in May 2018 when I first got my temporary parking permit... so why am I happy about this?

What's most exciting about having a "blue plate special" (as I now think of it) is I don't have to remember that fricken badge! No more taking it off and on, switching cars, forgetting it in the wrong car (always horrible). Nope. Now it's just goooooo!!! Which is the whole point of Pablo anyway. 

But it is interesting how quickly emotions change. My husband and I were just talking about this the other day. How we both remember what a big deal it was when I decided I needed a walker, now here we are with a wheelchair van. The same is true for the parking badges. I remember it being a really big deal to talk to my doctor about it the first time, now here I am with a "DP" (disabled plate). 

I'm very happy that things don't remain a "big deal" for very long. That we become more fearless and just move on with the joy of living instead of freaking out over small things like mobility aides and "blue badges" (as my mother calls them). Anything to help me live a big, full life is wonderful and very welcome!

Daily Rhythm

After all of the holidays, my mom's birthday, my birthday, my son's birthday, I think I have something of a daily rhythm forming and it's really helpful.

I start my day off with a cup of coffee and a hand full of pills, like most Americans, but especially those with any kind of chronic illness/disability. 

Then I spend about 30minutes on some kind of household chore while I have the spoons. Laundry, dishes that kind of thing. After that I move into computer work. These days it's compiling my medical files for SSDI appeal of denial. 

Now I have all my relevant medical records on my hard drive and on my Google drive. There my mom and a family friend who is a PCP can both easily access my files and give me feedback if they notice something missing. AND if anything ever happens to my computer it's all backed up and organized. 

I have some other things in the work as far as SSDI goes, but it requires me leaving the house and is more complicated. It also requires more spoons. This is something I can do bit by bit every morning.

After that I eat something. Usually a banana, but sometimes avocado toast. Or sometimes it's actually lunch time and I have some kind of fish. I shower after I get my grub on.

When I emerge all soft and shiny fresh I usually switch gears and move onto something creative or go on a small errand or adventure with Sweetie and my Mom. Yesterday was rare in that I had the spoons for both. 

My Mom came over and while she was on an important phone call I made my FAVORITE dessert and something I was craving, rice krispy treats. Yes, it is hard for me to make, but it's a challenge I can still do. 

After her call we took my 13 year old "puppy" Sweetie out to our local Arboritum for a very short walk (Mom) roll (me). It was the first time Mom got to drive Pablo. She's in love.

After that the rest of my day is devoted to napping. Then my husband is home from work and the Man Cub is home from college. We all have dinner, watch a show and it's bed time. And no, I have no trouble taking a 2-3 hour nap and going to bed for the night soon after. Not. At. All. 

Not every day follows this flow 100%. Sometimes my Mom comes over in the morning and we spend the whole day together. Other times I don't see her at all and I do my own thing the whole day and maybe roll Sweetie on my own around my neighborhood. But a typical day is tending to follow this pattern and I love it.

Today I have my second cement person coming out. I hope it goes better than the first who totally flaked on me. I'm starting to feel a little more settled in my daily rhythms and even though I'm still struggling a lot with pain, fatigue, dizziness and other issues it does bring me a new feeling of calm that I welcome with open arms.

Why it's easier to just stay home

My husband and I went out to see friends last night. They're good friends, but friends we have a hobby in common with and see about once a month if we can. I had tried to save up my spoons and had a good nap. I dressed up nice and we took Pablo out with Dory so I felt all spooned and tooled up. 

Then a friend said something really stupid that just knocked the wind right out of me. My husband/ally was behind me talking so he didn't hear and couldn't step in. Drat! I was left hanging in the wind. The conversation went like this.

Friend: "Are you working now?"

Me: "No. I'm on disability".

Friend: "Oh, so you're home?"

Me: "Yup!"

Friend: "Can't you even work from home?"

Me: ... (wind knocked out)

Me: "Noooo... I'm disabled. I'm on disability. I'm home not working because I can't work."

... "silence"

Me: "So how are YOU doing?"

That's my technique. Whenever someone puts their foot in their mouth I just turn the conversation away from me completely and onto them.

During that same evening I also had a very drunk friend hang ALL over my chair and myself, smudge my glasses, gave many many hugs in which I was careful to turn my chair off so as to not run over anyone... in short it was nice to see my friends but it was a LOT of spoons.

I seriously understand why people just stay home. 

My sweet friends want to bring a lunch over soon and come over to my house. I promise myself not to clean or feel bad about my house not being "up to snuff" comparing it to how it used to be. I also will not let my husband run around cleaning and buying food to entertain them. We'll see if that's better. 

I know people don't mean to say hurtful things. And it does come from strangers too. All the time really. But that's what I mean when I say often times it's just easier to stay home.