This popped up in my memories on FB and I really needed to see this today. I’m starting to not feel very strong and the last couple of nights I can not get comfortable at all. At night my legs become very heavy I guess that’s how to describe it and there’s moments when I can’t feel them and it scares me. I have become very anxious and ready to let go but then something happens and I make it through. I’m starting to really hate being trapped in his bed. It’s been five years and two months and I’m seriously fuck I’m not even sure anymore. 😂
I really do believe I’m going on a little mad. LOL oh well life goes on and so will I. 🖤😘
I think the hardest part is I know what needs to be done but we don’t have the resources to do it. And when I said above that I’m going a little mad, there are times I really think I am. 😜 I’m having issues again with sleeping and falling asleep because I really believe my body doesn’t know what it is supposed to be doing. It’s always at rest so how does it distinguish between when it should be asleep or awake. We are using pillows to slowly help keep my legs in more of a proper position but I don’t even know if it’s gonna work. They have been flopped to the side for so long trying to put them back in the position is horrifically painful. The key here is baby steps.
I don’t want to sound like a downer but I just don’t know if I can do this for another five years. When I say I’m bedridden I don’t mean that I can transfer into my chair and get up and cruise around I mean I’m trapped in this bed. The only way to get out of this bed is with the Hoyer lift. And being lifted up and that is so painful I think that’s what’s keeping me trapped in this bed. Just don’t know anymore. I’m scared, I’m angry, but at the same time I’m ready to kick some ass and fight. I just hope my fight stays stronger than my fear.
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.
If anyone ever tells you, be glad it’s just MS!! Punch them square in the jaw, to hopefully have the end result be that teeth fall out. Then they will remember never to say that to anyone ever again.
I’m really trying to stay positive, but when every day is the same with change nowhere in sight, it can be hard.
I’ll get over this feeling in a little while and I will get back to my positive outlook. But today I’m allowed to feel this way and be angry.
And no, I’m not glad it was just multiple sclerosis. So next time think before you fucking speak. This is not going out to any one person in general, it’s just something I see all over the Internet when people are ignorant. So now I am going to watch Fast Times at Ridgemont high, laugh at how stupid it is and funny, and find my positive place again.
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.
I try to live my life minute by minute because anything else is overwhelming. I know that every living person wonders about their future and what it will bring. Unfortunately when you live with chronic illness that wonder many times turns into fear. Every night I go to bed knowing that when I wake in the morning nothing will be different and it may possibly be worse. 😢 I will still be trapped in this bed, I will still have pain, and I will still have sorrow. But, I will still wake up and try to get through my day as best as I can.
I am human and I can’t stop thinking about what may happen. Statistically I know exactly what it’s going to happen to me. I have an aggressive form of primary progressive MS and it isn’t going to get better. I have now been bedridden for four years and eight months and it doesn’t look like it’s going to change anytime soon. Unfortunately, for me, rehab aggravated my back fracture that I never knew I had. With that has come so many problems. Whenever my hips are put into the proper aligned position the pain that comes with that seriously makes me not want to move at all or even try to make it through the day. The pain has been going on for a few months now and it is taking over my life. The pain in my lower back is also excruciating to the point where I can’t even sit up straight for a period of time without becoming nauseous. We discussed a facet block but I’m not sure even that will help with my lower hip pain. My husband needs a facet block but unfortunately our crappy insurance has denied it. Even though he’s had them before. So now we must fight the appeals process. I cannot do mine until he gets his done, so I think we’re both shit out of luck.
Again, I know everyone’s future is unsure. Hell the minute we are born we start to die. But most people can look ahead in their future talk about wonderful vacations they may be going on family get together’s etc. I cannot do that because at any given time I may not feel well enough to do anything. Unless they can figure out something with my pain I really have no life to speak of. All my future has in it is this bed in this room surrounded by these four walls. When you’ve been bedridden for as long as I have been you can’t just get up get into a wheelchair and go about your day.
It’s an adventure trying to out to get me dressed, in the Hoyer lift, and then into my wheelchair. After that I’m already down for the count. Just doing that pretty much takes away all my spoons for the day. 🥄🥄. And the pain comes with doing that is like Michelle Pfeiffer in the movie witches of Eastwick. 😳 It’s hitting me hard today because I had a shower Saturday night, two fucking nights ago and it completely wiped me out. The pain was worse than it’s ever been and the nausea was off the charts. So I’m trying to find something and some reason to keep holding on. How do you come to terms with the fact that your future may include you being always trapped in a body that doesn’t work and left in a bed? Lately when I watch movies all I can do is cry. I cried for what might’ve been and what should have been. I also try very hard to understand and live with my new ‘normal’. I’m not trying to get pity or be a Debbie downer, but sometimes this shit just really gets to me. I don’t understand what the fuck I did to deserve such an aggressive form of this disgusting disease. When I was diagnosed I had three babies under three and my life was torn apart.
I’m just so tired. Even Warriors fall apart at times. I’m just not sure how to put myself back together this time. It was just a fucking shower and my whole body feels like it just wants to curl up and die. And the doctors don’t listen. They don’t seem to care about my back fracture, they act like it’s not a big deal. It’s almost as if they feel like, hey she has multiple sclerosis she’s bedridden there’s nothing to do. The way the pain is affecting my life I may just have to do their morphine drops under the tongue. Sadly cannabis isn’t even helping me now. So what, they’re just gonna throw morphine under my tongue and leave me to die in a bed. The worst part is if I wasn’t stricken with multiple sclerosis they would be able to fix my knees, fix my hips, fix my back. But because of my disease it’s not worth it to anyone. Regarding the back fracture, my God, maybe that’s the reason my legs completely stopped working in November 2013. Maybe it wasn’t the MS. But they have no answers for me about that. They basically just said possibly but there’s never any way to tell. So now I am stuck wondering and really wondering what am I gonna do for my future. Have no worries, I will get through this and I will continue to fight. Hell, I’m a fucking MS Warrior! 🖤
Well those are not the words that were used, but that’s exactly what was meant. I’m too disabled for the DMD’s. That unfortunately in my current situation I am more susceptible to the side effects. Because of my bedridden status my body is at higher-risk of infection. With my constant bladder infections it could easily lead to sepsis. Because of the cancer that runs in my family I’m more apt to the cancer side effect of Ocrevus. And, in a nutshell, it’s not really meant for the primary progressive form of multiple sclerosis. I hate being right. I knew that the big hype that this was the first medication for the progressive forms would not mean primary progressive. If I want to be on the medication they will classify me as secondary progressive… and that’s not happening. I’m numb right now and I’m trying to come to terms with this. I’m angry too. There are people out there going med free thinking that they’re beating the monster that is MS. In the background MS is still progressing and doing its MS thing. I’m scared for them because when the relapse hits, and it will hit, it will be too late for them. They are blessed to be able to be on one of the many medications out there now, and they’re not doing it. I understand it’s a personal choice, I get that. But MS is not stopping because they’re eating right and exercising. That’s not going to slow or stop the progression. That’s not opinion, that is fact! I’m angry because I want to be on one of the medications and I am not able to take one. And for me the side effects aren’t nearly as awful as the MS. I’ve had to be med free, I’ve done the good healthy eating, I do the exercise as much as I can, and I still progressed to being bedridden. I’ll trade anyone of you people to be on those medications. Do you want to trade your MS for mine? Yeah I didn’t think so.
Before anyone says get a second opinion, this is the second neurologist opinion. He did say to keep doing what I’m doing regarding exercise and eating properly. But he also explained that I shouldn’t get my hopes up because I probably will not get back the use of my legs to transfer etc.. The good thing is with exercising I’m getting what’s called muscle memory. That’s pretty awesome because it’s much better than atrophy. But it really is kind of a second gut punch to me. I know in my intelligent brain that I can’t really get back everything I’ve lost, but in my hopeful mind I wanted to believe I could. So I will keep exercising the best I can and continue on. I have to, there is no other option. I will not fall back into my negative mind. I will keep my new positive outlook going and fight through this as I have fought through everything for the last two decades.
The main thing I have to do now is to let go of the what ifs. What if I had gotten into a physical therapy straightaway when I fell November 2013? What if my doctors had been more proactive with me? I can’t go back and change any of it and I need to let it go. I need to move on from here and continue doing what I’m doing.
On in a bit of a positive note I did finally get my x-rays done. That fiasco is for another blog. LOL I’m hopeful this will give them some more information in combating my pain. Right now that’s my focus. If we can figure out what’s causing my pain and get it under control I may be able to be in my wheelchair more. So that will be my next journey, the journey for pain relief.
If you’re able, go out and seize the day, because you never know what tomorrow will bring.