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 it’s all about my hips due to the fact my legs have been frog legs for over five years now. And my husband rolls me over on my side I can’t 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. My left hand which I have problems with, already ends up in a claw like fist when the pain hits and I literally can’t speak or function. And therein lies the main reason I don’t want to get up anymore. I can no longer handle the pain. I don’t even want to go to my pain management doctor because as 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 can’t do it they have lives of their own and my husband doesn’t 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. It’s not like that in real life unless you can afford it or the state provides it. Neither of which will happen for me. We live paycheck to paycheck but supposedly we make too much to be allowed help. Go figure 🤷🏻♀️ 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 it’s not like the movies. Lately I’ve noticed people are talking about the celebrities that have been diagnosed with MS blah blah blah. I feel for them, I do, but I don’t 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. I completely feel for them because they’re stuck with this fucked up disease, but I guarantee having money makes having chronic illness a bit easier. Or maybe it doesn’t. What do I know?!
I really don’t mean to sound so bitter, but I am a little bit. LOL I think this is all coming out right now because it’s a new year and I am very clearheaded and I am confused and afraid because I really don’t know where to begin or how to get myself better.
Fuck it… I’ll think about it tomorrow… Because tomorrow is another day.
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 didn’t know until this past February when I was in rehab that they actually have little shoes/boots for this. Why in the fuck didn’t my doctors get me these hundred dollar pair shoes. The pain I’m in is from my hips being tilted to the side for five years and these cheap little shoes could’ve stopped that from happening for me.
I’m talking about this now because I’ve been trying to use the ones I got at rehab to slowly put my legs back in the proper position and it feels like it’s 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. I’m so angry right now. I have no help I’m trying so hard to do it on my own but it’s 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.
❗️I’m 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 I’m in now. As I stated above it hurts so much right now to have them on that I don’t know if I’ll ever be able to get my legs back in position.
There’s 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. 😜
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 it’s time they fucking help me. It’s too hard to drive long distance to another neurologist. But I’m telling you if they don’t start doing their job to help me I’ll take the long drive.
This last picture are my boots and I’m 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 it’s gonna take A long time. My doctors dropped ball… And in my depression I let them. 😪
I am sorry for the book. 🤓
I’m pretty sure that I repeated myself a lot and I’m really sorry tonight is a bad MS night. But I’m still Kickin and my wheels are turning because something good has to happen! It has to. ♥️👊
Bahahaha you know this is true! There are no more presents to wrap because by now they’ve all been unwrapped. People are deciding if they should take down Christmas immediately or if they should wait and take down on New Year’s. The malls are still pretty crowded because people are doing returns and/or finding what they think are deals after the holiday. People in the work force are praying that their company will also give them the day before New Year’s off. Who doesn’t want a four day weekend?
Then you have people like me who can’t distinguish one day from the next. I still use an old-fashioned calendar to mark days off as they go so I don’t get lost. 😂 I would love to be able to blame this solely on multiple sclerosis, but I can’t. I mean I have become more scatterbrained but I’ve always been a little off. LMAO just ask people that have known me for years. Trust me they will tell you the truth. 🤔 I am not sure if that’s a good thing or a bad thing.
I think the five days between these two holidays are quite similar to the feeling you get when you’re sitting next to a stranger and you’re not really sure where to put your arm(s). You know that feeling… You don’t want to touch them but you also don’t wanna look standoffish or rude so you fiddle with your arms as you’re not sure how to hold them. What ever will you do…
And with that please remember to always have courage and be kind! 🖤
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.
I had a great weekend! My step mom, who is more like a mother to me, and her husband came down on Saturday for our family Christmas. It was wonderful! I spent the first part of Saturday in my bed so we all camped out in my room and then when we were ready to eat, Roger got me up in my wheelchair and we actually ate our Christmas dinner at the table! You have no idea but that is a big deal. LOL The only issue was the fact that my Wheel-Chariot, even at its lowest position is still a bit high for the table. But thankfully I had my little tray so I got as close as I could to the table and used my tray for my food. She makes thee best mac & cheese ever and the best salad dressing. I was in heaven! It felt very nice to feel normal, whatever that is, for that day. 🖤 Last year my daughter hung a string of lights around the walls of my bedroom and they brought me a beautiful lighted Christmas wreath. My room looks so pretty at night now! Festive and fun.
I also got an amazing “train case“ for my make up. I subscribe to Boxy Charm, so I get a surprise box every month of make up and other fun things. It may seem frivolous or even stupid for me to do this because of the fact that I’m stuck in my bed, but for me it’s just fun and gives me something to do other than watching television. Although, the television is still on in the background. LOL Basically, it keeps me off the streets! 😂🤣