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! 😂🤣
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!
What do you do when there is nothing for your type of illness? Yes there is a medication now for primary progressive, Ocrevus, but is it really for us. Most of the studies I see have been done on people with relapsing remitting or secondary progressive. They already had medications. LOL what do you do when there’s nothing for you? It’s too dangerous for me to take any of the DMD medications. So how do you live your life knowing nothing, and let’s face it, no one can help you. How do you fight when there are no tools to help you fight? The only way to slow or stop the progression of multiple sclerosis, any type, is to be on one of the disease modifying drugs. So, please, tell me how do I fight? There are people out there that won’t take those medications because they feel the side effects are too dangerous. I would give my right arm to be on one because I can tell you MS will fuck you up a lot more than any of the side effects from the medications. MS is always working in the background and I don’t care how great your diet is or that you exercise 24 hours a day, 😂 that will not slow or stop the progression of multiple sclerosis! So if you are not on one of those medications, I’m so sorry, but you are a special kind of stupid!
I really don’t mean to sound like a bitch, but I have nothing to help me and it angers me. How do you go on with your life knowing that you can do absolutely nothing to help yourself. Yes I can watch what I eat and shimmey in my bed to keep movement going but that’s not slowing or stopping my progression. I am so fucking angry. I hate the fucking holidays because I cannot physically do anything for anybody not even myself. I don’t know if people really grasp the concept of being bedridden. Someone told me they were bedridden but that they could get in their wheelchair and cruise around whenever they needed to, that they could still transfer and things on their own. 🤯 UMMM then you’re not fucking bedridden if you can get up all by yourself and get in n out of your wheelchair on your own. What the actual fuck! I’m so glad I wasn’t near that person because I would’ve seriously opened up a can of whoop ass on them. LMAO when you’re bedridden you can’t get up out of your bed whenever you feel like it. Then you wouldn’t be bedridden! DUH I cannot even sit up on my own. I can’t even roll over on my own. I am stuck lying on my back for however long I stay in this universe. It’s a whole production getting me dressed and out of my bed and that is probably why I don’t do it very often. And it’s very painful… so there you have it.
Yes I’m angry!!
And every now and then you hear of a new celebrity just diagnosed with multiple sclerosis and they make it sound like they are some sort of martyr. For any chronic illness money talks. Granted it sucks that they are also struggling with this illness but they are able to get the resources that the majority of us sorely need but cannot afford. I would love to have someone at my home helping me every day. Then I could get out of my bed and I could maybe maybe one day get better. I don’t mean get rid of the MS but physically get stronger and mentally having someone to help me could change my life. But unfortunately the majority of us cannot afford Caregivers nor can we afford to handicap accessorize our homes. So while I feel sad for the celebrity, I would trade places with them in a heartbeat. I don’t even know where I’m going with this blog today. I can just feel that I’m not in a good place so I just needed to get shit out. As always I’ll be OK but sometimes I wonder how I’m going to be OK.
This is the chair I need, want, and must have! It has a leg elevating option which will help my ankles not to swell. It reclines and can elevate a few inches to help reach things. I’m working on getting this sometime in the next few months. I have to jump through insurance hoops, but I’m used to that. MY neurologist is sending the store my diagnosis report, then they get with my insurance to see how much, if any, they will pay. Once that is done a representative comes to my home to get measurements, etc.
Insurance will not help much. They feel a wheelchair only needs to get you from point A to point B. It does not need elevating legs, recline, or elevation. They call those ‘luxuries’! Are they fucking kidding me!! It’s a ‘luxury’ to elevate my legs, to recline, and make it easier to reach things? WOW!! I guess it’s a luxury to be crippled too! grrrrrr I didn’t ask for MS so why is it so hard to want to be able to have a chair that helps me live my life with MS.
I’ll do whatever I have to, to get this chair. I spend my time in bed as the chair I have is a basic model. After 20 minutes of sitting my legs swell and my lower back is in pain. This ‘new’ chair will allow me to get up and get going. I will be able to make my jewelry again because I’ll be able to elevate my legs at the table. I haven’t made anything for so long and I miss it terribly. If I have to, I’ll sell myself on the boulevard… Okay probably not, but you get my point. lmao I really need this chair. When I found it whilst surfing the net, I started crying. I saw my ‘new’ life with this chair. I want an orange base for MS and animal awareness. It will be so cool. I feel like a little kid waiting for Christmas!
I’m back to getting the excess weight off again. I figure, if I have to be in a wheel-chariot, I’m going to be a hot bitch in a wheel-chariot! I’ve never been heavy. So this weight gain is very depressing for me. I look in the mirror and cry. Why I don’t look in the mirror much. I know if I lose the weight it will be easier for me and those who help me on a daily basis. I even turned down cherry cheesecake danish today. OMG, it was not easy! Paleo and gluten free is my lifestyle. I will do it this time… I have to.