One year ago…

It was one year ago when I realized I should never take a trip without bringing a cane.

It was one year ago when I realized walking was becoming a huge chore.

It was one year ago when I realized I was dealing with more than recovering from a broken foot.

It was one year ago when I realized it was time to discuss it with my doctor.

It was one year ago when I should have realized there are things I cannot control, but that’s something a control freak has trouble admitting and even more trouble accepting.

Photo by Léa Dubedout on Unsplash

I am indeed a control freak. It’s how I feel safe and secure. Having control makes me feel in control of my own life. It’s a security issue. (Ask anyone who has ever been on vacation with me about my itineraries and schedules. They know. They know it’s how I keep my sanity when I’m out of my element. I eased up after 2013.) Now that things are out of my control, it’s beyond frustrating. It just makes it harder to cope.

Tired. Sick and tired. That doesn’t even begin to describe how I feel. I’m way past sick and tired. I don’t think there are words to describe just how I feel. I won’t bother trying. I’ll just list some of the new fun stuff in my life.

For two days, the muscle in my left jaw has spasmed off and on. It feels like the skin is sliding off one side of my face when it happens. It also caused several minor freakouts when it started happening. Freakouts like, “Am I having a stroke?” freakouts. Yeah. Fun.

My calf muscles have been extremely tight for several days now. I’ve done tons of stretching over the weekend to try and get the muscles to loosen up. Before this happened, I was feeling stronger. I thought I might be getting a bit better. I thought things might be starting to improve. I thought I might be having good days again. I was wrong. I’ve been comparing bad days to worse days. There aren’t good days. It’s the same old days with some worse days, and those worse days make the bad days look like good days in comparison. It’s not better. It’s the same old things, with a little more fun added to random days without warning. (By fun, I mean the “What the? What is this new nonsense?” type fun.)

Photo by Almos Bechtold on Unsplash

I’ve noted something dreadful. I’m having weak spells in my arms now. It started off slow just like my legs, and now it’s happening more frequently. I have had two occasions in the past two weeks where it was a struggle to deal with getting a fork to my mouth. Know what happens? “I’m full.” Too much trouble to eat. I just really don’t think I can cope with any more weakness than what I’m already dealing with. I can’t. I just can’t. I just can’t even, even.

I exercise every day. Even on the days where my muscles are too sore and stiff to exercise, I stretch to help work out the soreness and try to fight off more stiffness. Every day. Not one single day goes by that I don’t exercise. On the days where I’m not in absolute misery, my exercise routine leaves me miserable for a while after I’m done. My legs are so tired and heavy that they refuse to work right for a little while. I still keep at it. On the rare days where I actually leave the house, I don’t do my exercise routine because doing too much makes my legs feel like every muscle is pulled and makes exercise impossible for days. It’s a losing battle, I fear. I have only been able to maintain a bit. I’m not really losing muscle at the moment, but I’m not gaining any, either. My strength is not improving. I’m working my butt off to stay right where I’m at. I can’t add to my routine, even the slightest bit, because it’s too much and causes me to have to stop exercising. (Trust me. I’ve done plenty of experimenting over the past few months to try to increase exercise and build up strength.) I keep right on working hard every single day just so I can stay the same. The same. And then there are days where I know I’m slipping and have lost a bit of strength. I’m struggling to stay the same.

Know the next fun adventure that’s about to be added to my current exercise routine? Walking laps through the house. Walking laps with a walker. A walker. Why with a walker? It’s more support, it’s more stable, and it’s easier on my arm and shoulder. Oh no. Don’t even ask. You won’t be seeing me out of my house with a walker. Nope. Not gonna happen. I spent months at home before I built up to using a cane. I have no problem sitting right here rather than going out on a walker.

Photo by Dexter Fernandes on Unsplash

Now, I know there are people who are tired of seeing posts from me even though those posts are infrequent. I know there are people who think I should have gotten over this phase already. Oh, I know. And those people should know there are reasons why I am staying to myself and giving less frequent updates. I know you don’t give a damn. I know. But, you know what? I HAVE come to terms with this many times over. And many times over, I’ve fallen right back into the same pity party. Why? Because every single time I think I have a grip on it all and learned how to manage, something new and even more fun comes along. Something else pops up. It’s not the same. It doesn’t stay the same. It just keeps changing, and how am I supposed to come to terms with an ever-changing situation that I don’t understand, don’t know what it is, and don’t know what to expect next? You tell me how I’m supposed to deal with that.

You didn’t know? Of course you didn’t know, because no matter how much you think I’m complaining you’ll notice my complaints aren’t really complaints. I don’t often talk about what exactly is going on. I don’t often discuss details with the people close to me because I don’t want to worry anyone. So, no, I don’t want attention. I’m happy not to be noticed in this state. I really am. I just want people to understand why I’m being antisocial. I don’t want to hurt anyone’s feelings. I want people to know it’s not personal. I want them to know I still care, but I am taking space to regroup. That’s why I make those posts — to ask people to forgive me for being rude.

I’ll say this once: Yes. I’m having a pity party. It’s MY pity party — a party of one. I don’t want anyone’s pity nor do I want attention, and that’s why I’ve been keeping to myself. I don’t want anyone feeling sorry for me. I do enough of that all on my own. Too much. I don’t need anyone adding to it or feeding it.

Photo by Ian Espinosa on Unsplash

Why am I writing any of this? It’s for me…and perhaps the handful of people who do try to keep up with my progress, or lack thereof. I don’t talk about this, really. I don’t discuss it with friends and family. I keep a lot of it in, but I have to let it out at some point. I have to let some of it out to relieve the pressure on my brain. This is me letting off steam. This is me shaking my fist at the sky and asking, “Why?” This is me trying to figure things out and come to terms with yet another fun thing and yet another change. This is me, and it’s about me. It’s my party, and I totally blanked out on my own itinerary here. I was supposed to be venting about the fun stuff. My mind gets lost, and this is why I’m not working right now.

Tremors? Seems to be less severe. Most noticeable when I’m actually trying to do something like grab something or pick something up.

Spasms? New one in my face. My face. Oh, what fun. But, the spasms that jerk an entire limb seem less severe. They don’t seem to be as visible.

Tics? About the same. Tics, tremors, and spasms all are worse when I’m tired.

Temperature sensitivity? Sometimes my hands and feet are oversensitive to temperature, and then sometimes I don’t feel it at all for a brief moment. Then I’ll suddenly feel like I’m touching fire because the feeling will come back.

Photo by Cristian Palmer on Unsplash

There are lots of other things. Lots. It’s so much more than most people know. So much more. Most of you didn’t even know about those things. Pardon my pity party. Feel free to ignore my posts. Stop reading my updates. Unfriend me. Hell, even block me, if you want. I’m trying to cope, and I’m realizing I’m not going to be able to do that and keep all of this bottled up. My posts might get more frequent. They might not, but they might. I’m just doing what I need to stay afloat in this sinking boat, but I don’t want anyone to feel like they have to tread water with me.

Pilkington is an aspiring beach bum who enjoys travel and sweet tea. This published author has been featured in Health Magazine and many other publications.

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