Category: MS-Cellaneous

I have seen a lot of posts (I’m sure I am exaggerating), saying that our bodies are not the enemy. That we need to work with our bodies not against it. I don’t understand what that means. I think about my body and how it is currently working. If I went along with my body, I would be sleeping 12 – 16 hours each day and spending the other part laying around watching TV or scrolling on my phone. I go to sleep tired, I wake up tired, and I spend every minute of my day tired. I never feel rested or energized. I would eat take out for every meal because I don’t have the energy to cook. And I would definitely have a live-in housekeeper 😆. Before I was diagnosed with MS I didn’t like to clean, I sure as hell don’t want to use my limited energy to do it now. Eww!

I think about the morning when my leg gave out and how I had to get up off the floor. I didn’t hurt myself. The fall was slow therefore I could control it, but I couldn’t stop it. Now, I am on the floor and I have to strategize to get up off of it. First, I have to find something to leverage myself against to push up off the floor. I put one hand on the bed and the other hand on the nightstand. I pushed up, but my feet kept sliding on the carpet and I couldn’t get them up under me. Back down I go. This is why I say the carpet is the devil. It doesn’t have my best interest at heart. So now I’m like, let me try another area. I put one hand on the bed again and the other hand on my walker. The walker is iffy because though it has locks on it, it doesn’t lock 🤦🏾‍♀️. Don’t ask, I don’t know what its problem is. I push up again and my feet keep sliding on the carpet, but I am almost up and I am determined that this is it. I grab the footboard on my bed to keep me where I am while I try to figure out this sliding issue. So, I am half on the bed fighting to keep from going back down. I say to myself, “No, I am not going back down. I am getting the fuck up off this floor.” I take a breath and push all the way up. It is shaky, but I did it. I won!!!

So what do they mean? I feel like I’m in a fight with my body everyday. We are not friends. My body is not trying to work with me, so how can I work with it? I am not sure if I should call my body the enemy, but kinda. It is attacking itself after all. It sees itself as the enemy. And here I am trying to tell it how to behave. It is like a teenager that thinks they grown, but doesn’t know shit. We all know, you can’t tell teenagers nothing! So, when I make my body do something it doesn’t want to, I feel like I won. I’m not keep score though. If I did, I am sure I’m losing 😂.

So what do they mean? I don’t know. I probably should ask someone. Maybe they have some sound advice. Maybe, I am just like the teenagers and don’t listen to shit either. I guess until I find the piece of advice that fits me and my situation, I will keep focusing on winning the battles, if not the war. Keep fighting! Stay well and whole. Much Love 🧡 💚

I watched a video recently where a guy was instructing people with disabilities applying for Social Security Disability Insurance (SSDI) on how to answer the question of “Tell me what you do in a day” or something like that. He said be detailed and speak of the difficulties and the pain. Let them know of what type of assistance you use or assistance you may require from others. This was actually some good advice to me. I know that if I was asked this question I would be very matter of fact. I got up, took a shower, made coffee, pack my lunch, went to work, returned home, made dinner, wash clothes. Went to bed around 12 am. Not saying I do all of that in a day, but most days can be a variation of this. If I was the person designated to approve me for SSDI, and I had no heart or soul (😆), I would probably deny me too. Of course, I am the type of person that is naive enough to think they would ask follow up questions like, “Did you have any difficulty get in and out of the shower?”, “Did you struggle to make it through your work day and if so, what were your issues?”, “What did you make for dinner?”. I guess that is just me 🤷🏾‍♀️. Also, when people normally ask that question, no one really wants to know what you did in your day, and we are programmed to give vague responses. The truth on how the day is for someone with a disability is so vastly different than a quick rundown.

I won’t give you my whole day, but we’ll stick with the beginning. This is how I presume I should answer the question. And this may be even a little too pared-down.

Wake up 2 and a half hours before I am due in to work. I need time to rest and recover after each step of getting ready. Take a solid 15 minutes to get out of bed because I have to wait for my legs to join the party. I use my inside walker to make it to the bathroom. Can I make it without it? Yes, but it is slow going and takes more energy to balance and move. I use a shower seat to make my showers easier but I still use a good amount of energy getting in and out of the shower because it is a shower tub combo and I have to get my legs in over the tub. Also, there is parts of bathing that requires me to stand and that takes energy to balance. After shower, sit on the bed for a few minutes getting up the energy for the next steps. Struggling with putting on clothing due to legs not bending or cooperating as a whole. Finally dressed and up. Pack my lunch and make coffee. Constantly having to balance in the kitchen as I take things in and out of the fridge. Lunched pack, bookbag on walker, heading for the door. Hours have now past from the time I woke up and now it is 8:45 am or so. At the door, move my bookbag from inside walker to outside walker. Move lunchbag as well. Take my time stepping down the two steps. Wheel the walker to the car, put in bags, fold up the walker, and lift into my SUV. Make it to the drivers seat. Pause and figure out if my leg is going to lift up to get in or if I will have to do the butt in method. Two or five minutes later depending, I can leave.

I am exhausted just typing that out. Now, I am sure that most people do similar activities to get ready in the mornings. Yet, how many of you actually think about it? You probably operate on autopilot, and most of this can be done in an hour or less. I would still describe my morning as generically as most of you would, but it is a whole ass production. And then these systems that we pay into with each paycheck or dollar earned feels the need to deny us because we didn’t give a detailed answer to a question?!?! It is baffling to me.

With all of this being said, I’m not ready to apply for disability. I feel that I would be limited in my life and experiences if I take their petty offerings. I am determined to live this life to the fullest that I am capable of and that my resources allow. I no longer have good days. I just have days. This day, that day. Stray Kids, this and that, this and that. Seriously though, I get up, I get to it, and I make it happen. I veg out on the weekends to recover from using my physical and mental energy all week. I throw in events with friends and family when I can. I travel when it is affordable and accessible. Honestly, I hope to never have to depend on the system. I have paid into it for over 30 years, yet I can’t imagine the life I would live if I utilize it. I pray God for strength to get out there and do what is necessary to continue living financially and physically independent.

I know I don’t talk much about Multiple Sclerosis (MS). I think people with disabilities don’t want to seem like we are whining or complaining. That we are looking for sympathy or pity. I know that is how I feel at least. This is a life lived. My life lived with MS. No different from your life lived with whatever your struggles are. Yet, I do feel like I underplay (is that a word?) what is really happening in my life. I also don’t want people worrying about me, even though they probably do any damn way. I am okay. It is not easy or glamorous, but it works. I may start speaking on MS more. I realize that I may be the only person that you know with MS and how will you get a better understanding if I don’t talk about it. That is assuming that you want a better understanding. Either way, if you are reading this, I am going to believe that you do. Anyway, be well and whole. Much Love 🧡 💚