Seriously, some days I wonder why the hell I even bother waking up. No, I don’t mean the alternative. It just gets harder and harder it seems, to be trapped in this bed. Three months ago I was at the point where I didn’t care anymore. I kept my self medicated so I didn’t have to think about being in this prison. But then, I got help. My mind set changed and I saw that there was some hope left. In a perfect world I would’ve been able to remain there until I could actually get up on my own. And no, I don’t mean up being a dancing fool, just able to transfer myself from my bed to my wheelchair. In this world, insurance would have none of that. 😳
So I’ve been lying here for the last two days, angry and a little bit lost. It seems that since I had a glimpse of what might happen, I am not handling being trapped very well anymore. Hell, without the help I need, nothing is going to change. I feel like I’m fooling myself in a sense when I say that I can do this on my own. I want to keep that positive facade going so everyone thinks everything’s great… but it’s not. And no, I’m not giving up, but I am looking for alternatives. 🤔
I’ve been mindlessly watching movies for the last two days. Anything to keep my mind off of everything that I cannot do anymore. As I’m watching I constantly wiggle my butt 😏 move my arms 💪🏻 and try and strengthen myself. But in all honesty, that’s not going to change very much for me. Right now while I’m talk typing, I’m wiggling my hips back-and-forth. Just keep moving is my new motto, and moving is what I will keep doing as much as I can. If only my dogs 🐶 had opposable thumbs and could understand me and be able to talk and be strong enough to lift me up, everything would be aces. 😂 It could happen.
Okay, back to the real world. I think the worst part for me is that in my mind I can see myself moving my legs enough to be able to get transferred to my wheelchair. I can’t explain it properly. Sometimes as I’m lying here I can almost feel my body move on its own. I know that sounds like some crazy psychotic shit. LOL I wish I had the proper words for it. But I am literally drawing a blank. It’s like I can see myself outside of myself. Okay, now I’m really going in to the realms of crazy psycho woman. 🤣 And I think I just said back to the real world. Welcome to my mind. 😳
I am now going to bid you farewell for the night. You can thank me later. 💋
Have courage and be kind 🖤
I went to the doctor last Thursday. After the doctor we went to Walgreens to pick up my prescriptions and then we went to get something to eat. I’m still exhausted from that day. I’ve had two in home physical therapy appointments and the pain is intense. Nevertheless, I got through them both. On the days where I feel like I just can’t go on, I just want to stop everything. I ask myself why I’m doing this as I know it’s going to hurt. I start to second-guess myself. I truly am my own worst enemy!
So, instead of quitting, I push on. I remember why I’m doing this, and that makes me focus.
Just had a surprise shower after PT day 2. [not my normal shower day] I am back in my bed resting and re-charging for tomorrow!! Peace out … for now!
Have Courage and Be Kind
That feeling of comfort… That feeling of no pain…
It’s been so long. But I found a spot, even if only for a moment, there was no pain. It could be the adjustable bed, it could be the medicinal meds. ✌️ Whatever it is, it is AH-mazing!!! I can’t lay on my side or move that much, so for the last four years I’ve literally been on my back. (minds out of the gutter) and now as I am talking this blog in to my phone, I’m starting to feel a little bit of pain. It’s mainly the butt bone!! 🤪 If my butt had a voice it would probably tell me to get the fuck off of it!
So I’m watching ‘Grace and Frankie’, season four. It’s freaking funny as shit! And yes that is how my mind works, it flies from one thing to another. I can’t keep up with it most days. That’s probably why I do not sleep easily. My mind goes from 0 to 60 in about a fraction of a second.
So, hey, I just adjusted my bed and now the pain is gone again… Hooray! And now I have one dog sleeping between my legs under the covers and my adorable little pit mix, who is as sweet as the day is long, lying next to me.
^^^ And this is what happens when I am bored, unsupervised, and highly medicated. Snapchat pictures with filters. Does it get more boring than that??!! You have to admit they are fun and they make you look adorable. So why the fuck not.
I guess it’s better late than never. 2018… The only change for me will be that I will progress. I’m a realist, I have to be. I still hope every day. Yet, hope can become very paralyzing. As most people now, I was diagnosed in August 1997. My second opinion specialist said it began in 1986 and that I am primary progressive. In reality I’ve had this my whole life. I was genetically predisposed for it. I can look back and see issues I had from the time I was little and through my teen years into adulthood. It lay dormant for a very long time. I guess when it showed up, it needed to make itself known by literally taking away everything I held/hold dear.
But, seriously, what you gonna do? I literally can’t “do” anything by myself. I try to keep A happy face because nobody wants to hear the truth. And that’s OK, I probably wouldn’t want to hear it either. So really, what are you gonna do when you end up like this. Basically you just have to take it. I cry so much I could end the drought. 😂 No, seriously, I could. LOL You just have to find the humor.
It’s just that some days there is no humor to be found. It’s been four years and three months now that I have been confined to a bed. I get up for doctors appointments and for showers and that’s about it. The pain is so intense that if I sit for too long… I’m better off in bed.
That’s all I have right now. Happy fucking new year! I’ve just got nothing.
Primary progressive multiple sclerosis, end stage. There is no medication for it, there is no remission, there is no cure. So when do you say enough?
I lie in my bed 24 hours a day seven days a week. When I do get into my wheelchair the pain is so bad I can’t sit for more than 30 minutes to an hour. So I don’t get it my wheelchair. Even lying in my bed I have pain constantly.
I no longer have the caregiver as I cannot afford one. Hospice won’t even take me. They don’t consider what I have terminal. I guess it’s OK that I live another 20 years lying in a bed in constant pain. If that’s not terminal I don’t know what is. Fuck you hospice!
Dr. Kevorkian knew what my type of illness did to a person. He helped them die with dignity before they became so bad that they could do nothing for themselves. I’m already there I can literally do nothing for myself. Except talk text and look at my phone and use a remote control to watch endless hours of television until my brain goes numb.
I have a hard time holding utensils now. But I guess it’s OK if I just become a head in a bed that is in constant pain. People say tomorrow’s another day. Not for me, tomorrow is the same thing, every day for the rest of my life.
The new so-called medication for progressive MS is a big farce. Maybe it will help secondary progressive but that’s not even in the same league as primary progressive. Ocrevus, The manufacturer, when I called them basically told me I’m too far gone. On the disability scale I’m an 8.2. So I can’t take the medication. But they don’t really give you a reason why.
I’m not looking for pity I’m not looking for any ones I’m sorry’s, I’m bringing about awareness to a disease that is looked at as a basic, oh well you have MS, disease. It’s not basic it’s like living in hell.
I’m off, as I can barely talk without crying anymore. I just want to have some control over my own life and not die a rotting shell of the person I once was.