Have courage and be kind! š¤
#MSWarrior #TheBedriddenLife #MultipleSclerosisAwareness #MarchIsMultipleSclerosisAwarenessMonth #PPMS #WeNeedACure
Category: primary progressive MS
Broken
So this post might be a little long. And you donāt have to read Iām just trying to get out what Iām feeling. We are going to attempt a shower today and Iām already having anxiety. But I have to do it because PTA bed baths are not doing it for me. š
I just donāt want to roll over or get in that fucking Hoyer sling. It hurts so much even when I have a nice supply of cannabis on board. š
Some of you know I have another fracture in my back at L3 and I was supposed to see a spinal surgeon like last month, but I canāt. I donāt want to go because I donāt want to get up. And the worst part about that is, I really want to get up! I know that does not make any sense. LOL
Without help I donāt know how Iām going to ever be able to get out of this bed. But, I will keep doing what Iām doing like wiggling in the bed LOL I have some serious dance moves for someone who is in bed. šš» I just want out of it. But when Iām lying down or even when my legs are up and Iām elevated I donāt have any pain. So thankful for my adjustable bed. šš» The minute someone moves my legs I literally want to die. It feels like my hip is going to snap and my leg is going to fall right off. Sounds like something out of a criminal minds episode. Childbirth wasnāt as painful. I will take a contraction over this any day. š³
We rolled a couple of pillows and taped them and put a cover on to jam them on the outside of each leg to roll my hip as Iām lying down. Oh holy man! The first day I could only tolerate about five minutes because the pain was intense. But yesterday I actually kept them there for a few hours. Iām hoping that eventually I will be able to get my legs moving without pain. I donāt care what the doctors say and what my MS is going to do with me because I know if I can get rid of this pain I will be up again. I may never walk again but I will be able to transfer if I can just combat the pain. And thanks to my colostomy and urostomy I wonāt have to worry about running to the bathroom every five minutes anymore. š Statistically the odds are against me but Iāve never been a fan of statistics. LOL Do not tell my daughter that because that is what she graduated with honors in. š
Iām putting on my little arm weights more because I totally slacked off on doing my arm exercises because depression hit it once again. But my little inner child showed up and beat the crap out of depression. Hopefully itāll stay away a little longer this time. š¤
When things got really bad after my surgery in 2014 and I completely fell into a very dark place. The surgery almost took my life and at that time I wished it had. I think a lot of people thought that it was getting to the point where I was nearing the end. I felt it, I even had a doctor tell me my outlook was grim. It wasnāt until February 2018 that I woke up. That anniversary is coming up and it scares me. But it also reminds me that I can fight and can get better. I just want people to know donāt give up on yourself no matter how bad it might be! I have been to the depths of hell and Iāve tried to leave a couple times. For some reason they didnāt want me. LOL
Well now that Iāve written a book and I probably lost most of you after the first paragraph I am going to get myself pumped so I can take my shower and not be afraid. šŖš
Iāll be backā¦ Said in my best terminator voice. LOL
Have courage and be kind!
You are getting sleepyā¦ sleepy
Sleep in one of the many wonders of the universe. Something that is not always easy for me. I think because my body is always at rest my brain is not sure when it should sleep or not sleep. š“There have been times where I am up for 3 to 4 days without any sleep until I finally pass out from exhaustion. š³ Thankfully that hasnāt happened in quite some time because I found a few things that really help me. I thought I would share and maybe it might help someone else.
For a while I would watch Dr. PimplePopper videos because they would knock me out. I donāt know why but her videos can be mesmerizing. LOL I know gross!Ā But, If you know me you know I like gross. š
Then I started using an app called āInsight Timerā, which I recommend highly. I like to listen to one of the recordings that is called, Floating. Itās very calming. I found one last night that is called āSacral Chakra Tibetan Singing Bowl. It was quite beautiful and I love the sound of the singing bowls. I have tried guided meditation, but like with books on tape, the voices to me were not soothing or calming. The only time I have ever been able to do guided meditation was when I was able to do yoga for MS many years ago. The yoga instructor, Colleen, had the most beautiful accent and when we would finish with yoga she would do a guided meditation with us. I always fell asleep instantly. Her voice is like an angelās. š
Then a friend of mine, Victoria, sent me a link to some really cool videos called ASMR on YouTube. Autonomous sensory Meridian response (ASMR) – a feeling of well-being combined with a tingling sensation in the scalp and down the back of the neck, as experienced by some people in response to a specific gentle stimulus, often a particular sound.
I was honestly very skeptical about this. When I first started watching I have to admit I was kind of giggling a lot. What are these people doing? šThey were clicking their tongues, tapping on various items, whispering, and doing off-the-wall role-play. But, lo and behold, the next thing I knew I was fast asleep. āWhispers Redā and āSophie Michelleā are my favorites. I tried listening and watching a couple of the male ASMR videos, but their voices were not very calming to me. Sorry, not sorry! LOL
Do a search in YouTube for ASMR videos for sleep. You will find a lot.
You do have to look around because some people donāt realize we just want to have a calming video. Ā There is one person that does it and sheās constantly talking about how people are stealing her ideas. Seriously! Everyone pretty much does the same thing. I tried to watch hers, but it was a no go. LOL I honestly donāt want to hear about someone elseās troubles š® so not one of my favorites. š
Another thing I have tried was books on tape. The only problem with that is you canāt choose the voice. LOL I just did not like the voice of the ones I heard. I have to have a soothing voice whether it be male or female and I have yet to find one. Although, if Morgan Freeman would do every book on tape that I want, Iād be OK with it. š¤
I hope that something I have a mentioned in this post can help someone else, because then my sleepless nights and finding things that work… are worth it. š¤
Have courage and be kind!
Everything happens for a reasonā¦
This everything happens for a reason crap I have a hard time with. There is no good reason that my sister died from cancer, thereās no good reason that I have friends that deal with MS and also cancer.Ā
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 donāt bring that crap into this. š¤¦š»āāļø
And the bottom line is when that āreasonā 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 Iām vocal and I make people feel like theyāre not alone and I can inspire people. Honestly I would do that before I didnāt need for this to happen to be there for others and to help others. So thatās kind of a mute point. Ā Oh the joys of life! š¤
Have courage and be kind!
Procrastinate for 500 please
Lately I think I do a lot of this in regards to doctors appointments etc. My procrastination comes from the fear of the pain it will cause to go to said doctors appointments etc. Just taking a shower is painful AF. And itās all about my hips due to the fact my legs have been frog legs for over five years now. Ā And my husband rolls me over on my side I canāt explain the pain in my hip joint area. And then the moment I am in my Hoyer lift and he starts to raise it up, as my hips turn in their joint to the proper sitting position all I can do is cry. Ā My left hand which I have problems with, already ends up in a claw like fist when the pain hits and I literally canāt speak or function. And therein lies the main reason I donāt want to get up anymore. I can no longer handle the pain. I donāt even want to go to my pain management doctor because asĀ I stated above it hurts to get up and be a normal person sitting like a normal person. So what can I do? I try to move my legs as much as possible on my own which is sometimes futile. My family canāt do it they have lives of their own and my husband doesnāt have time to work with me every day.
Unfortunately like you see in the movies people that are ill have caregivers that come in and out of the home. Itās not like that in real life Ā unless you can afford it or the state provides it. Ā Neither of which will happen for me. We live paycheck to paycheck but supposedly we make too much to be allowed help. Go figure š¤·š»āāļøĀ I wish it were like the movies because then I would have a physical therapist helping me daily, someone to help with my meals, showers, and my well-being. But itās not like the movies. Lately Iāve noticed people are talking about the celebrities that have been diagnosed with MS blah blah blah. I feel for them, I do, but I donāt believe they go through the same types of issues that many of us have. They can afford getting the help they need and all that comes with being a celebrity. Ā I completely feel for them because theyāre stuck with this fucked up disease, but I guarantee having money makes Ā having chronic illness a bit easier. Or maybe it doesnāt. What do I know?!
I really donāt mean to sound so bitter, but I am a little bit. LOL I think this is all coming out right now because itās a new year and I am very clearheaded and I am confused and afraid because I really donāt know where to begin or how to get myself better.
Fuck itā¦ Iāll think about it tomorrowā¦ Because tomorrow is another day.
Have courage and be kind
And they dropped the ball
When I fell November 10, 2013 it landed me completely in the bed. Now I would think doctors would know the issues that come with being trapped in the bed. Legs falling to the side for comfort which makes you end up with frog legs in essence. I didnāt know until this past February when I was in rehab that they actually have little shoes/boots for this. Why in the fuck didnāt my doctors get me these hundred dollar pair shoes. The pain Iām in is from my hips being tilted to the side for five years and these cheap little shoes couldāve stopped that from happening for me.
Iām talking about this now because Iāve been trying to use the ones I got at rehab to slowly put my legs back in the proper position and it feels like itās too late. Because my legs and my drop foot have been in that same position for so long it fights against the boots. So what happens is I get pressure sores on the sides of my feet. Iām so angry right now. I have no help Iām trying so hard to do it on my own but itās fucking hard. My husband cannot do it all and if they had just gotten me these little shoes so many of my issues would not be happening.
āļøIām talking about this because I just want others to know if you end up in your bed for any period of time invest in these hundred dollar pair of little shoe things so your legs stay in proper alignment. I wish someone had told me five years ago because I would not be in the position Iām in now. As I stated above it hurts so much right now to have them on that I donāt know if Iāll ever be able to get my legs back in position.
Thereās a picture of Denzel because I just watched the movie the bone collector and noticed he had a pair of these shoe things on for the movie. š
I really need to get with the neurologists out here and tell them that they have dropped the ball on me for way too fucking long and itās time they fucking help me. Itās too hard to drive long distance to another neurologist. But Iām telling you if they donāt start doing their job to help me Iāll take the long drive.
This last picture are my boots and Iām still not able to twist the hip or put the kickstand up. My feet are getting used to being in a normal position and it fucking hurts. They normally point and fall out. I really hope this works. I know itās gonna take A long time. Ā My doctors dropped ballā¦ And in my depression I let them. šŖ
I am sorry for the book. š¤
Iām pretty sure that I repeated myself a lot and Iām really sorry tonight is a bad MS night. But Iām still Kickin and my wheels are turning because something good has to happen! It has to. ā„ļøš
Have courage and be kind
As the year endsā¦
Most people at this time of year are thinking about their New Yearās resolutions getting ready for all the new things to come. Iām lying here completely lostā¦ I feel like Iām 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. Ā Iām telling you the Christmas times when I was better my house was decked the fuck out and looked awesome! Ā Oh how I miss that!
Iām just void of emotion right now. Ā Like everyone on the planet none of us knows what tomorrow will bring. Although I do knowā¦ Itās just going to bring more of the same of me lying in my bed looking around at my four walls wondering why Iām even here anymore. What is my purpose? Ā What is the point of life when you canāt live it. I know Iām blessed that I get to wake up every morningā¦ But thatās about it. I wake up and I have a couple choices; watch TV, play on the computer, watch TV, play on the computerā¦ Ā you get the idea.Ā š
Iām 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. Iām angry, just like I mentioned in a blog a couple of days ago. I donāt 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 wouldnāt 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 itās been lived in. And having to run around and take your kids everywhere isnāt a chore itās 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 thereās something you want to do do it now. Because one day you may not be able to and I guarantee you will Ā have so much regret. And trust me, regret is paralyzing!
Iām not sure how much more of a fight I have left in me considering thereās 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 Iām kind of laughing at that last sentence because I am primary progressive so I know that it will keep progressing… Iām just asking it to slow down a little bit. LMAO Ā 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 Iām funny as hell and quite enjoyable to be around. šĀ I really am! Ā If it werenāt for my beautiful doggies I honestly donāt know if I would still be here. I canāt expect my family Ā 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 donāt 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 wouldnāt mean anything but to me they mean everything because they are all that I have! š¤
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 kindā¦
