anger · boredom · multiple sclerosis · Pain · primary progressive MS · Ramblings · sarcasm

Everything happens for a reason…

 

This everything happens for a reason crap I have a hard time with. There is no good reason that my sister died from cancer, there’s no good reason that I have friends that deal with MS and also cancer. 

There is no good fucking reason that I am bedridden and deal with so much shit on a daily basis. So I am sorry but, everything happens for a reason, is a bunch of bullshit!

And it has nothing to do with faith so don’t bring that crap into this. 🤦🏻‍♀️

And the bottom line is when that “reason” happens, it better be me getting out of this bed standing up and walking all on my own.

People tell me all the time that maybe my reason for this is because I’m vocal and I make people feel like they’re not alone and I can inspire people. Honestly I would do that before I didn’t need for this to happen to be there for others and to help others. So that’s kind of a mute point.  Oh the joys of life! 🖤

Have courage and be kind!

anger · boredom · Christmas · Craziness · Darkness · Depression · Fear · Happiness · health · hope · lonliness · multiple sclerosis · new year · nightmares · Pain · primary progressive MS · Ramblings · sarcasm · strength

As the year ends…

Most people at this time of year are thinking about their New Year’s resolutions getting ready for all the new things to come. I’m lying here completely lost… I feel like I’m in the twilight zone. This year my house was not decorated for Christmas and it was actually just another day. The holidays are not the same for me anymore because I can no longer get up and get my home decorated and make it feel Christmasy.  I’m telling you the Christmas times when I was better my house was decked the fuck out and looked awesome!  Oh how I miss that!

I’m just void of emotion right now.  Like everyone on the planet none of us knows what tomorrow will bring. Although I do know… It’s just going to bring more of the same of me lying in my bed looking around at my four walls wondering why I’m even here anymore. What is my purpose?  What is the point of life when you can’t live it. I know I’m blessed that I get to wake up every morning… But that’s about it. I wake up and I have a couple choices; watch TV, play on the computer, watch TV, play on the computer…  you get the idea. 😉

I’m not trying to be a Debbie downer I am a realist and quite honestly I hate being a realist. I never was until this piece of shit disease put me in this bed for the past five years. And before that put me in a wheelchair. I’m angry, just like I mentioned in a blog a couple of days ago. I don’t know how to get rid of that anger. I look around and I see a lot. I watch people complain about every day issues like not having enough time in the day to get their kids wherever they need to be or to grocery shop or clean their house. What I wouldn’t give to have those issues. My wish for people is too slow the fuck down and see the beauty around you because quite honestly it could be taken away from you at any moment. A dirty house is a beautiful thing because it means it’s been lived in. And having to run around and take your kids everywhere isn’t a chore it’s a blessing that you are able to do it. I know that I took so many things for granted and I wish I could go back and spend time on certain memories and open my eyes more and be more present. But you cannot go back so please I implore you, be present and if there’s something you want to do do it now. Because one day you may not be able to and I guarantee you will  have so much regret. And trust me, regret is paralyzing!

I’m not sure how much more of a fight I have left in me considering there’s nothing for me to fight with. There are no medications I can take so I just have to pray that my MS will be kind to me and not keep progressing. OK I’m kind of laughing at that last sentence because I am primary progressive so I know that it will keep progressing… I’m just asking it to slow down a little bit. LMAO  I really wish that MS were a person because I would beat the living hell out of it.

I think the worst part about being trapped in a bed is the loneliness. Nobody really wants to sit in your room with you whole are you lying in your bed, even though I’m funny as hell and quite enjoyable to be around. 😂 I really am!  If it weren’t for my beautiful doggies I honestly don’t know if I would still be here. I can’t expect my family  to constantly hang out with mom. They have their own lives. And my husband cannot spend every waking minute in here with me either. Everyone complains that my room is so cluttered and I really should throw things away. I don’t think they understand that this room is my whole life. What they see has junk and clutter are things that make me smile. Stupid things like my living dead dolls or my Lucy collection, my lava lamp, etc. Things that to someone else wouldn’t mean anything but to me they mean everything because they are all that I have! 🖤

So please, for me, do me a favor and instead of making resolutions just make a promise to yourself to be present for every moment that comes your way. It could quite possibly change your life.

Have courage and be kind…

Christmas · Depression · Fear · FUCK · FUNNY · Holiday · hope · lonliness · mindless-thoughts · multiple sclerosis · primary progressive MS · Ramblings · RANDOM · sarcasm · silly

All I hear is blah blah blah… I’m a dirty tramp

I can’t help it, I love that movie and that part of the movie. One of my favorite movie lines! #MrDeeds

My blog title has nothing to do with how I’m feeling though. Living with so much uncertainty in life sucks!  I’m always waiting for that other proverbial  shoe to drop.  I ask myself every day why do I even bother getting up in the morning err waking up because I don’t really get up at all. 🤔

Most people have something to look forward to they can make future plans. I don’t have that option. I have no way to a slow or stop my progression of my MS so I really do wonder why I bother.  But, I will wake up every morning and lie this bed and figure out a way to get through each day lying in this bed. I think I need to invest in a good mattress LMAO but that won’t happen until pigs fly out of my ass. 😂🤣 Good mattresses are too fucking expensive. What a rip off.

That is all for now… I know you’re happy about that. Remember, have courage and be kind!

Circa: a long time ago in a far off land…
boredom · confession · Craziness · friendship · Happiness · hope · lonliness · mindless-thoughts · multiple sclerosis · primary progressive MS · Ramblings · RANDOM · sarcasm · strength · stupid_stuff

Just be you!!

Lately I’ve been realizing that I was always one of those people that worried about what other people thought. I know most of you probably don’t think that, but that’s exactly how I was. I hid it very well  with my “tough“ persona,  but I always wanted to please people. My time in physical therapy rehab changed me completely. I’m now the person that I always wanted to be and if people can’t handle me, then I don’t need them in my life. I’m going to be that tough girl who fights and doesn’t let people walk over her anymore! I used to go out of my way to do things for people that never really cared. And I don’t expect a pat on the back of or even a thank you. But you know those people I’m talking about. The ones who we just have to be friends with when in reality they are no better than us. But for some reason we always thought they were, so we would go out of our way to get them to be friends with us.

I just never thought I was good enough. I thought to make friends I had to buy things, always be the ride, always be the brunt of jokes. I allowed it so it’s my problem and not theirs, but I will NOT allow it anymore. To be friends with me you have to take the good with the bad, and all of the crazy. I’m not going to change anymore for anyone! It’s nuts how it took me nearly 54 years to figure all of this out. Better late than never comes to mind. ☺️

I lie here at night, and when I can’t sleep I just have so many thoughts that go through my head. I just don’t know how to put it down on paper. So I talk text and say what I feel. Half the time I can’t remember my thoughts from the night before. I’ll just blame MS cog fog. LOL I mean if you have to have a disease then by all rights use it as a great blame tool.  It’s those voices in my head that don’t let me quit. It’s those voices in my head that make me strong. It’s that little inner child that comes up to the surface when I need her.

Self discovery that’s really a great thing!

Have courage and be kind…

Depression · Fear · hope · HORROR · lonliness · multiple sclerosis · primary progressive MS · Quotes · Ramblings · RANDOM · sadness · sarcasm · strength · stupid_stuff

It really is OK!

I haven’t slept all that well for the past couple of days. Might have something to do with my 1 PM wake up call yesterday and the very strange sleep that went along with it. 🤔 I’m not OK. It’s not that anything is wrong, it’s just that the reality of my life sets in every once in a while and grabs a hold. Small things, like watching a movie and someone rolls over in their bed and cuddles their pillow, causes tears to fall from my eyes. Oh how I wish I could roll over on my own and cuddle my pillow! ☁️ (I know it’s a cloud I couldn’t find a pillow, LOL)

The funk that I’m in is bound to pass soon. I just get so frustrated being trapped 24/7/365. Lately I’ve been very angry at myself for becoming depressed. My new positive outlook is making everyone so happy that I feel like I can’t have a bad day. 🤷🏻‍♀️ I have to remind myself that I am human. I have to remind myself that my situation is pretty fucked up. But, I also have to remind myself that I will get through it. It is kind of funny to my twisted mind that I’m worried about upsetting people if I get upset so I’m trying to say happy so that everybody else is happy so that no one is upset. Wrap your mind around that one. 🤭

As I am sitting here, watching a horror movie trying to write this blog, the theme from the ‘Banana Splits’ show is going through my head.

The banana splits TV theme song:

Tra la la, la la la la.
Tra la la, la la la la.
Tra la la, la la la la.
Tra la la, la la la la.

One banana, two banana, three banana, four.
Four bananas make a bunch and so do many more.
Over hill and highway the banana buggies go
Comin’ on to bring you The Banana Splits Show.

Makin up a mess of fun
Makin up a mess of fun
Lot’s of fun for everyone.

Tra la la, la la la la.
Tra la la, la la la la.
Tra la la, la la la la.
Tra la la, la la la la.

Four banana, three banana, two banana, one.
All bananas playing in the bright warm sun.
Flippin like a pancake, poppin like a cork
Fleagle, Bingo, Drooper and Snork.

Tra la la, la la la la.
Tra la la, la la la la.
Tra la la, la la lad la.
Tra la la, la la la la.

And that my friends… Is how my mind works. 😜

Have courage and be kind!

anger · confession · Craziness · Darkness · Depression · Fear · FUCK · health · HELL · hope · joy · lonliness · multiple sclerosis · Pain · primary progressive MS · Quotes · Ramblings · RANDOM · sadness · sarcasm · silly · strength

Holy elephants Batman, which way is up

Right now it is 2:45 PM on Thursday. I just woke the hell up. I guess it’s better than yesterday when I woke up at 3:30 PM. I went to bed at reasonable hours both nights but my body just does not want to wake up. Maybe it’s because I know what it’s waking up to.  Maybe after all this time I’m just sick and tired of dealing with it. I’m just not quite sure why it all is hitting me so hard right now, but it’s  it’s as if the light at the end of my tunnel is a locomotive coming right at me. I’ve been searching my mind as to why everything is hitting me so badly and I cannot figure it out. Nothing has really changed in the last 4.8 years of being completely bedbound, fuck it the last 5 years ( yes I am rounding up ) to make me feel so lost right now. Or maybe that is the problem, that nothing has changed. I am a grown ass woman who has never been afraid to speak my mind, tell it like it is,  or go toe to toe with someone who is a complete dickwad. 😈 But, this piece of shit MonSter that is MS is a different kind of enemy.  It is very sneaky and it takes away from your soul not just your body. It not only affects the recipient it affects everyone around them that loves them.

 I really am trying to find that blessing. It just seems so out of reach. I know everyone says that I’m lucky because I have the gift of life. And believe me I completely understand that. But is living in a bed every day, every night, every week, every month, really living?  I don’t think that people understand that this part of my journey is not going to change.  I can’t do any of the treatments so I’m as will continue doing what it does and it will continue to progress. So what does somebody do with that? How do you find that blessing knowing that the help that is out there now for your disease, you are not allowed to do. So I think I just have to say fuck it  and be like cookie monster and when it’s unpleasant just eat the fucking cookie. A medicated cookie but you get the idea. 😉
 Tomorrow is my pain management appointment with Dr. Nasser. Once a month like clockwork. I have a list of things to ask and the way I’m feeling I’m pretty sure I’m going to end up being a little forceful when I ask. By forceful I mean I will probably be in tears begging for someone to help me. 😭  Yes, ugly tears. I’m already scared to death to go because I know how bad the pain is going to be when I’m lifted in that Hoyer lift and put in my wheelchair. Hell, just rolling me over to fix my clothes and get me in the lift sling is Is making me sick to my stomach. Fuck fuck fuck you multiple sclerosis!

A little bit of advice before I go… If you yourself have MS and are still able bodied, make a list of everything you want to do and do it now! Don’t put anything off because people with our illness we have no idea what the next day will bring. And if you’re Normie, a person with no afflictions, the same goes for you. Make a list and do the things you want to do now, because even though you don’t have an illness, shit can happen  in the blink of an eye. So do what you want to do now. Please  I beg of you, don’t put it off for another second.

 Have courage and be kind
anger · confession · Darkness · Depression · Fear · FUCK · Happiness · health · HELL · hope · HORROR · joy · lonliness · love · multiple sclerosis · nightmares · Pain · primary progressive MS · Quotes · Ramblings · RANDOM · sadness · sarcasm · silly · strength

The prison that is my body

To literally and figuratively be trapped in your own body is tantamount to living in a horror movie. Horror movies are my genre and most days I feel like I’m staring in my very own movie. I wonder when I’ll get my star in Hollywood? 😜 That feeling of claustrophobia that feeling of been unable to move is a feeling no person should ever have to endure. Unfortunately many of us have to live this way every day of our lives. The Normies ( people without any type of illness ) go about their day in a bubble. I know, I was there once. While I was always a person to help others, by opening doors for someone in a wheelchair, by reaching things for people who couldn’t, or just to have a kind word for someone, the truth is  I never really saw the person.  I could feel for them and wish I could help them in other ways but I never quite understood just how it was living that way. Now that I am that person that needs help I realize just how much our country needs to wake up and give love instead of hate. I’ve had people push me aside in my manual wheelchair because they needed to get something and they couldn’t reach reach something with me in front of them. It didn’t matter that I was looking at something to purchase, all that mattered was I was in their way. I was a third class citizen that didn’t even need to be asked if I could please move for a second. Trust me that person never did that to anyone else ever again once I was through with them, but what if I had been someone that didn’t have a voice.

That’s the question in my mind every single day. How will I break free, or will I ever be able to. If I’m truly honest with myself I know that I will not get back what I have lost. I’m not saying that in a sad or depressing way, I’m saying it in a medically proven way. If only one doctor had said this to me I probably would’ve laughed at him, but it’s been  several doctors have said this to me. I know they’re not trying to discourage me or hurt me they’re trying to give me reality. They don’t want me to get my hopes up so they’re giving me statistics regarding people with my severity of the disease. With primary progressive multiple sclerosis you constantly progress. There is no remission there is no 10 minute break. 😉 There is no relapse that you will come out of and be OK. You just continue to get worse.  So now I’m trying to resign myself to the fact that my future, at this moment, isn’t very bright. As you noticed, I said at this moment. While I am a realist, I am also a dreamer. So I will continue to do my exercises, I will continue to fight this MonSter.  But I’m scared. Even those with MS will, I pray, never have to be trapped like this. The disease itself is horrific but the thought of spending the rest of my life trapped in this bed is  completely and utterly paralyzing. And I can say, with the upmost truth and honesty… I want to live, not just exist.

Have courage and be kind