It's been a while and I'm not sure why. I do feel that I have things to say I just don't sit down and write them. But because this is supposed to be a bit of a timeline with how I am really doing I just wanted to do a quick, or maybe not so quick, update on my physical and mental condition.
So I've decided that the progress of my disease is very much like a plateau. For quite a while things can be quite stable and I don't notice any real progression. Then, all of a sudden, it's like I fall off that plateau and things get worse. I then stay that way for a while until the fall off of the current plateau. A lot of people have asked and so I may as well tell you that once I fall off that plateau, or feel an new level of weakness, I never regain that which is lost.
Lately, I have felt a fall off my plateau. Maybe if I was paying more attention I could figure out how long I have in between bouts of progressive weakness but it just seems to creep up on me. All of a sudden I think, "that is getting a lot harder" or "I used to be able to do that myself." And when you are just living life it takes a little bit to realize that something has changed.
So here's where I'm at physically. I have been noticing symptoms for 7 1/2 years now. At this point pretty well everything is hard! Haha! But really. Where do I start? I have been using a cane to walk for the past while. At first, it was more for peace of mind. I was scared of falling and for some reason I felt that the cane made that less likely. Although, I've found that to not be the case! Now, I would hardly want to walk anywhere, more than just around my house, without the cane. If there is the littlest bit of incline I will probably fall going up it. Even with the cane, the most I can walk is probably into a store like Wal-Mart. Without holding onto a cart for support I would not be able to walk past the front doors. To illustrate how weak I'm getting, just walking around my house takes me quite a while. To walk from one room to the next is slow. I can't really carry anything of substantial weight while I'm walking. Getting up off of a chair by myself is not at all ladylike. I fear that soon it will be impossible without help. There is one chair in my living room that is fairly easy for me to get off of right now. The couch and the other chair take so much effort and sometimes, depending on how the day has gone, it probably won't happen. It definitely makes it hard when you've finally sat down and all of a sudden one of your kids needs something, or the phone rings, or you want to change channels on the television but it's just out of reach. Hopefully you get the picture. So what does this mean for me?
I don't have a lot of motivation to even leave my house. Every step is hard and takes a lot of energy. I do have an electric wheelchair, which I'm so thankful for, but there's no such thing as just popping into a store anymore. It's quite the production! Every time I am invited anywhere I have to wonder what the accessibility will be like. I can do a couple of stairs but if they don't have a railing then there's no way. Some people's houses don't have railings!! Walking into the movies is not really an option anymore. I have to ride my wheelchair. Same goes for most restaurants. If I can park right at the door then I'm okay but normally the walk from the car to the table is bordering on too far. I don't want to clean my house. Picking something up that belongs in another room seems like an exhausting and daunting task. To summarize, it makes me feel lazy and anti-social. I do want to go out and I do want to have a clean house, but to do so means that by the end of the night I am exhausted.
My upper body is also weakening. I do fine if I'm really only using my biceps. I can open jars or lift things, strictly with my arms, but anything over my head is pretty much impossible. This means that my hair is probably never going to be in a cute braid anymore. I really like having my bangs pinned back on top of my head. The last time I went to do this, I had to support my left arm on the wall while I tried, in vain, to get it looking okay. If it doesn't look good the first time, it isn't going to happen. My left arm is much weaker than my right, which is interesting because I'm left handed. Do you know how much happens with your left arm?! Going through drive-thrus I have to make sure that I'm pulled right close so that when they hand me things, my arm can reach out. I can't even extend my left arm all the way out because it's too heavy to hold up. Drive thru ATMs are terrible! You have to use your left arm and have it extended for so long because of all the questions they ask and all of the buttons that you have to push! Not my favorite thing right now! So anything higher than my waist that I have to reach for or lift is a bit of a challenge.
One other thing, that was really significant for me, is that I need a pillow, or a blanket rolled up under the covers at the end of my bed. Anyone reading this will automatically think of my mom. For as long as I can remember she needed a pillow or something at the end of the bed. The reason, is that the covers are too heavy to be pushing on my feet. I don't have the muscles needed to pull my toes up towards my legs. So I have nothing fighting the pressure of the blankets. It bothers my ankles and my toes. I fought putting a pillow at the end of my bed for a long time. There was something psychological about it. I was now at the point where I was bad enough, like my mom was, that I needed to pillow there. It's hard to explain. It's not that I don't want to be like my mom, but I think it maybe symbolized the progression. Without physical things there, confirming the decline, I could pretend like everything was status quo. But all of a sudden, there are physical reminders. I love my mom, and my grandpa. There is a feeling of a club that only the three of us are members of. It would be nice if the other two members were here, on the earth, so that I could talk to them, but I do like to think that maybe they get to help me more than others because we have this connection. But because of this connection, there is a lot of comparison that I do with my mom. I look at myself using the electric wheelchair more often, or a cane so early, and the thoughts that go through my mind are that I'm progressing faster than mom did. I have thoughts like, "mom was still three years away from needing this" or "mom didn't need help with that until she was this age." It's hard not to compare. My mom's life was cut short. Because of this disease, she died. That is what I'm facing. I'm not scared of it. I'm not scared that it's progressing but the reminder is there every time I fall or every time I get up out of a chair. I know that a lot of people wonder, but are scared to ask, how I really feel about having the disease, with the possibility of a shortened life span but that's a whole other can of worms! I will talk about it. Not in this post, because it will probably take me a while to write, but if it was the other way around, I would be curious too. So I will share how I really feel about it. Until then, I am living with how I am today and am grateful for the things that I'm still able to do. One day, those things will be taken away too, but for today, I am grateful. And I am truly grateful for the lessons that I've learned along the way.