I complain–a lot. To anyone who will listen, I complain about how hard life is right now. I can’t do the things I want to do, like walk. I sit in my chair and look at my bed, a hospital bed, in my living room where I sleep alone, and I think it should be so easy to just get up and walk to the bed. I FEEL like I can still do it, right up until the point I actually stand up, and then I realize, whoa, dude, where’s my walker. I can’t walk. I’ve had three strokes and shattered my ankle, and I can’t walk, now. But it looks like it should be so easy. I sit in my chair and watch the world go by, but I’m grateful because there was a time I couldn’t sit up in my chair at all, and I had to lay down in bed all the time. At least I can sit up now. You learn to adjust to the level you’re at.

I don’t talk about this a lot, because it’s embarrassing, but I’m working on being transparent. I think it’s important for people to know that some things are normal for them and also to be grateful for what you do have in your life because it can easily be taken from you. I was once young, thin, healthy, and happy. Massive blood clots to the lungs from a genetic clotting disorder I knew nothing about took me down a road that has left me where I am today. I didn’t ask to be here. I didn’t expect that this is how my life would turn out. You never know.

I had one lady say to me once, “There but for the grace of God, go I…” It’s a common phrase, but what a fucking insult because I guess she’s saying I’m not worthy of grace and she was? Think before you speak, for sure. That one was just stupid, and I had to throw it in as a side note.

Another side note: Don’t tell me you understand. You say you understand, but you can’t. If you’ve never been through it, it’s not something you can understand until it happens, and even then, your experience will differ from mine just because you’re you and I’m me. I know people mean well when they say they understand, so I don’t say anything at the time, but I’m telling you now if you’re reading this, I’m not the only one who feels this way about ‘understanding.’ You want to scream, “No you don’t! You can’t!” and yet, you don’t because you know the person is only trying to be kind.

I’m working toward sleeping in a regular bed. I have trouble getting in and out of the bed. The hospital bed is motorized and has side rails that I can use to pull up and push on. The regular bed doesn’t have side rails. We thought of putting them on, but if I push too hard or put too much weight on them, will the bed just crack and break? It’s a gorgeous wooden sleigh bed. I don’t want to destroy it. So for now, I’m still in the hospital bed, but we’re working in physical therapy for me to get in and out of the bed easier so I can sleep in a regular bed and maybe, just maybe, not have to sleep alone anymore! I miss cuddling.

I miss having human connections. The very things that allow me to have a life, the oxygen concentrator and cannula, my wheelchair, and the hospital bed, all keep me distanced from other humans. My son is a true blessing in that he gives me these random hugs, no matter how awkward it is to get to me. He’ll hug my legs on the bed at night when he can’t reach me to hug me goodnight. I love that boy–I couldn’t ask for a better son to take care of me.

That’s a point of sadness with me, too. He’s 26 years old. He should be out building his life, not stuck inside with his invalid mother taking care of her and dumping her potty chair. Oh, did I mention I have to use a bedside commode because I am unable to get into the bathroom with the wheelchair to use the toilet, and I cannot walk into the bathroom? So I pee in the living room, in front of everyone, and he has to help me dump that toilet every time I use it. We’ve set up a private area and all that, but still… it’s the thought, you know? I have no privacy. I change in front of everyone. I require two people to help me get into the shower, so I take bedside baths daily and try to shower once per week. I can’t wash my hair every day like I would like to. I used to love to take long, hot showers. Now, because of the psoriatic arthritis, I cannot take hot showers because it makes the flaky plaques all over my body itch like hellfire.

If you have your health, you have everything. Everything else is a matter of taking control over it and doing it. Losing your health means you lose the ability to choose. That’s a big one for me. Choice is everything. I choose to be a lot of things, but my body just won’t cooperate with me anymore.

But I do find my gratitude. I nearly died three times in the past five years. I wrote about when I was in a coma a few days ago here on this blog. I know that no matter how hard it is, I don’t want to die. I wake up every day and choose to fight for my life. For a life. Any life. I can still talk to you here and write on my blog. That’s something. I can still interact on Facebook. That’s something. I can still write my books. That’s a lot–that’s everything for me to not go crazy…er. I have my family, whom I love, my growing family of choice, and my friends. I’m not alone, even when sometimes I forget that and feel lonely.

I’m depressed right now, but that comes and goes too, though recently it’s been coming more than going. I need to keep that in check because I’m on two anti-depressants, and they can’t keep throwing drugs at me to make it better. I planned to go to talk therapy but COVID struck. I can’t find anyone who will do housecalls, and I can’t add another weekly bill to an already overburdened budget for my family (I bring in very little money from disability each month–thank goodness for insurance or we’d be destitute and homeless) So I’m sitting here with my headphones on, blasting music and writing–two of my favorite things–and I’ll play a little piano when my son pushes me over there to it. And I write songs and music, poetry and blog posts, and books, and it keeps me going and creating. And maybe it’ll all go viral after I die. Sure isn’t going much of anywhere while I’m alive, LOL.

Every day just seems to bleed into another, and I find myself looking at the clock, wondering when it’s time to go to bed so I can sleep and escape. I pop my pills, I breathe through the cannula, and constantly feel short of breath. I sit frozen in my recliner until my butt goes numb, I play on the computer, I get in the wheelchair and my son takes me to the kitchen table where I prep dinner while he does the majority of the cooking for me because I can’t stand to do that in the kitchen. Because I sit in a wheelchair, with my face at the gas stove level while wearing oxygen, cooking from the wheelchair is not a good idea. Then, when dinner is done, I spend the night waiting for it to be bedtime so I can go to sleep and escape for a few hours. I wake up multiple times per night and have to pee–which takes a lot of time and effort when you can’t walk–and then I finally wake in the morning and do it all over again.

It’s the same thing every day. I mix it up and sometimes play games on the computer. I can’t concentrate on much anymore, and since the strokes, I can’t play bejeweled like I used to. My hand twinges and seizes up on me while I’m typing or playing, and it’s too hard to score anymore. I can’t even hold a fork or a spoon anymore–I have a special weighted spoon that helps, but for a long time, I had to use buildups to be able to eat. I can’t use chopsticks anymore–it’s a silly thing to be upset over, but I am. Playing the piano is hard, but I’m slowly getting better at it than when I first sat back down to play. Muscle memory being what it is, I did retain a lot of the piano, but it’s taking some practice to be good again. I will likely never be as good as I once was. Same with typing. I will likely never be as good as I once was.

What’s that Toby Keith song? I ain’t as good as I once was, but I’m as good once as I ever was! LOL… I wish that were even true.

So this is me complaining to you out loud instead of keeping it in as I often do. I don’t post about it on Facebook anymore, because I don’t want to be a downer, but here on my blog, I can tell the whole ugly truth and maybe, just maybe, it can inspire someone to do more to take care of themselves. If I could save one person from having to go through what’s happening to me now, then being blunt like this will have been worth it. Keep your health as much as you can. This sucks, trust me, it fucking sucks, and you don’t want to be here.

I go to the doctor to find out what the mass on my lungs is on December 9th. I’ll be updating with more information about it and whether or not I qualify for the PTE surgery that could actually cure the CTEPH and give me some life back–maybe get off oxygen or greatly reduce my need for it. I might breathe again, which would make learning to walk again a whole lot easier because I can’t walk very far without desaturating into the 80s on my oxygen concentration, and my heart rate goes through the roof (160 from just a few steps during physical therapy). I need a new heart valve, and they were going to do that surgery along with the PTE if I qualify for it. I hope to know more next week.

Until then, I’ll keep waking up and fighting for my life every day. I may not be able to walk, but I have two legs and two arms that mostly do what I tell them to do most of the time. Tomorrow is physical therapy, and I’m ready. I’m taking back my life if I can do it. In the meantime, I’m adjusting to this day in and day out shelter in place isolation. It’s not COVID that’s doing it though–this is just my life. Another day in paradise.

 

As the song says, Just think about it…

 

I love and need you all.

Love and stuff,

Michy