I am not a complainer. But when I tell you that I woke up feeling half way to crippled today is bad. I’m still upbeat shiver ice cream down my throat to cope with my day but I am in pain. If this invisible monster hijacking my body is not Lupus, or Sjogrens but fibromyalgia, bitch won today. I have felt so much pain in my knees and in my body it feels sort of like my body is pulsing. It’s sharp like lightning running down my wrists to my fingers, and on my feet up to my ankles. My knees are just screaming in pain.
I half way decided I wanted to join yoga although I’m still part way dismissive. But something has to give. By the time I’m 40 I’m going to need a cane or a power scooter. That I will not allow. I fight and today I’m fighting like hell. The worst part for anyone battling autoimmune or related illness is that outside you look okay. Inside it’s like a category 5 hurricane waging war. Today is one of those days. If you know someone battling this silent war be nice, be gentle. They may not complain, scream or shout or show signs of pain. But I can promise you that the pain is as real as falling out of a moving car.
Lately I have been commuting by train about 4 hours a day. Why, do you ask? Simply because the children are out of school and I had to put my kid in summer camp. Like most parents maybe you were equally as appalled by the prices. I know I instantly had a stroke when I saw 4K price tags attached to camps for 2 months. Yearly tuition for a private school yes, I can justify that. 4K for two months worth of camp not a cold chance in hell. So I found an alternative that was based on income and worked. Catch 22? It’s closer to my job but I didn’t realize how far from my house. So yes it’s about 30-40 from my job, but I work about an hour away, so do the pencil.
Taking my kid on the train everyday has been an adventure in itself. New York is quite vibrant and quite entertaining in and of itself. Things you’ve never seen I promise you, that here you will see. Case in point the first week commuting with the kid a homeless woman copped a squat in the tunnel on 14th and peed. Now I get and I’m not judging the need to go. But the fact she was bare assed in front of my kid was really something. The good thing is I used it as he moment I told her that’s exactly why I tell her if something falls it’s lost for life. You don’t pick it up. I don’t care what it is. Commuting is something for sure. Just a few days ago I was riding the train with Darth Vader. No seriously. I’m about 5’5 and this guy about 6″ was standing next to me. I don’t know if he had a nose issue or if he was just trying out for star wars but the entire ride to Harlem I felt and smelt his hot corn breath.
The evil part of me wanted to say something but then I opted for my own response of silence. Normally my response to complainers is take private transport, uber it. But that’s not an option so I held my breath, literally.
I haven’t been talking much lately because I’ve been trying to cope with my body telling me to screw off. That’s been quite a feat. I was supposed to get a secondary exam to decipher whether I had sjrogens or lupus. At this stage I just want to make it through the next few months. My work is slipping severely. Today I asked my boss for something she had clearly given me. I had no idea. The fatigue was so strong I litterally fell asleep sitting in my chair in the middle of an affidavit. This is despite the fact this weekend I pretended my legs were broken and I pretty much stayed in bed. My legs did feel broken. In fact the moment I stood up my feet felt like they had been holding an elephant and couldn’t. So I did. The minimal. Sunday I cleaned up a bit. Yesterday I called out sick because I was super naseous and just sick the night before. Truth is it was a combination of that and the fact I physically couldn’t get up because my bones felt like they were cracking like a wish bone.
Of course I don’t mention that. Because people don’t get it. They see you looking fab and the same outside and have no idea there is a war going on inside. One your usually losing. I was losing miserably. In fact I lost. So I stay quiet. What is the point of trying to explain to people when they don’t understand? It’s not malicious it’s just they don’t get it. The pain I’ve had in my hands the past 2 days is ridiculous. It runs from my knuckles down to my fingertips. From my wrists almost down. I haven’t lost my sense of humor or my ill manipulation skills if you think that’s holding me down. I’m just running at a slower pinky and the brain speed, that’s all. I proved it to myself today that I’ve still got it. So one win for a bunch of flighty moments.
What can I do? Life is short. At this point I just shrug my shoulders and call it a day.
Today was difficult overall. It started like a crazy hectic day from the moment I walked into the office. I took it in stride and then it all went downhill from there. My father racked up a few thousand dollars in international charges. I have been paying it down slowly but its affecting my lines. Then, I received a notice that because I forgot to schedule a payment they were going to turn off our lights. That was hard. I made the payment but this all happened in a span of a few hours/minutes from each other. I wound up taking lunch not doing my homework for class and just walking out and sitting in the church next door for 20 minutes. I needed peace, I needed solace.
I’ve been on my medication for the SLE for about a week. Its hard, I sometimes forget, and I don’t feel all that well. I feel tired and most of all achy. It varies on the severity. I stomp around the office trying to work and focus, but some moments my focus isn’t there. My focus is on the pain in my fingers and ankles or wrists and not on what I’m working on.
I compare this revelation of the SLE diagnosis to driving your entire life at 100 mph and slamming the brakes at once and now driving 30 mph. I’ve been trying to figure out my life and figure out what to do with myself. I was and always have been driven but now in the face of my own mortality, I am questioning what I want. All the money I wanted won’t fix what I have. It will make me happier in a lot of regards but it won’t cure me. As I sit here typing, I am thinking about my school work. I have to do something today but the truth is that I just want to sleep and maybe try to sneak in a game or two..
Today was stressful but tomorrow is another day… live to fight another day..
When I was younger in my late teens, my parents became friends with this lady who had a daughter that was wheelchair bound. Her daughter had lupus. She was the first person I ever knew had that. For a while I’ve felt like utter shit. I’ve woken up struggling to get to work to get dressed to function. Pain in my bones that felt like my bones were snapping. Last week I had a bad week. That’s the shit. I don’t feel bad all the time. Just sometimes. Last week was bad. Friday I was miserable. I hadn’t slept well because I had pain in my body to the point I couldn’t sleep. I went to work and it was just a shit day.
The thing is that it’s hard to explain to others what you feel. Not because I can’t express myself but because they wouldn’t understand. I was enraged when I recently found out that I might have lupus or rheumatoid arthritis. I was enraged because this is exactly what I’ve been begging doctors to test me for. I don’t feel good. I feel tired. My joints hurt incredibly. No you’re okay. You’re a mom, a student, an employee.
Well I’m not okay. I hate pity parties. At this moment I’m sort of basking in one as I process what this means for me. Law school? Legal pressures? Can I have a longstanding legal career with its stress since stress is something that I need to reduce? I feel like Dorothy’s house flying around the eye of the storm. I was angry for a moment. Angry that I have to go through another challenge after all of the challenges I have faced. I know I’ll get over my pity party. I know I’ll keep trucking. I just have to reach that point where I’m okay.
My significant other is clueless. He seems to think people on the train are my biggest stressors. No he is, work is. I feel unsupported but the hardest part is that I feel misunderstood. That’s the killer. I feel like no one understands what I feel and it’s hard because it’s something your battling in silence. It makes you feel isolated.
I couldn’t sleep. I woke up at 1:00 am and my mind was racing. I’m not sure what to call him. I suppose after 7 years together there should be a more defined role or title except I don’t feel it. It would be a bold faced lie to say it’s my significant other. I have an engagement ring that lines my jewelery box. I’ve always been a free spirit. The ability to walk away from relationships and bad situations. Except for this nightmare.
In my 20’s I thought it was crazy for women to stay in bad situations. Especially when they had children. Then I had my daughter. Something become clear. The fact that my poor decision would now affect her entire life and I had to live with that. The weight of that was like atlas carrying the world on his shoulder. So I stayed. Knowing one day I’d take my passport and my shit let my daughter know I’m out. Catch me in Europe. I’d served my time. The irony between my plan and my own mothers disappearance does not elude me.
Last night I couldn’t sleep. My “partner” told me my dad fell out of the car when he was getting out for dialysis. He couldn’t get up. My stomach dropped. The stress has magnified. The pressure intensified. That coupled with a lunatic that you have to walk on egg shells with are the recipe for a stroke or a heart attack. I’ve never met a person I couldn’t speak with. I deal with difficult high strung professionals and even then, nasty or not I can communicate. I can peg them. I can asses who I’m dealing with and how to deal with them.
I’ve never been in a situation where I couldn’t express myself. Where it’s like North Korea. You can’t express anything outside of the designated permitted forms of expression. Trust me, I am expressive. The moral is that the anx I felt came from knowing my dad fell and he didn’t want me to know. My limited ability to be everywhere, and the argument that ensued with this so called partner. The partner proceeded to spout how this was his fucking apartment and he didn’t want a nurse here until it’s spic and span. The problem is he has shit all over the place. But in his eyes this is not a problem. When you deal with someone who’s issues are everyone else’s except his own, where everything is someone’s fault but their own, there is no winning.
I take great issue with people who have a need to try to exert their power. In my eyes, they’re weak. If you need to hold power over someone who can’t or just because, know that you are weak. A strong and powerful person doesn’t need to exert power over anyone. People will do your will because they respect you and you command so. Not out of force like a dictatorship where it’s done out of fear. Fear is the seed of resentment, after resentment anger grows. There’s a phrase I say all the time that I stand by. “Those who need to control are they themselves out of control.” That’s what I’m dealing with. A cyclone of a personality and my life.
I’m not complaining by any means. I’m simply acknowledging what I know and that’s the similarity between myself and my mothers decision to one day pack her shit and leave. Except one massive difference. My father was not a bad person in his entirety. He made poor decisions but I chalk that up to a lack of education. But he took care of us, made sure we lacked nothing. As strong as his personality was, I know he loved me. That his intent was never to hurt me. That’s the defining difference. The difference is that I’m genuine. This partner is selfish. He does everything for the added bonus. Oh here let me help you with this, so later I can hold it over your head. Sure if you need my help now you can’t say anything to me. Here’s a 100 bucks but when I need you there’s no out. And that to me is disgusting…
I’ve had moments of insanity. I call it insanity because for me personally children are cute but even better when they go home to someone else. I have occasionally thought about giving my daughter a sibling. For health for life a sidekick to share life with. I love my kid. She’s smart, hilarious, ambitious and the list can go on. But I would be lying if I said I didn’t have days this week I wanted to get my passport and sail off into the sunset without her. Does it make me a bad mom? I don’t think so. In fact, I think it’s normal to think that and feel that way. I think women tear each other up over feeling like this but I think more moms think this than they let on.
I am an only child. Because of this everything falls on me. I’m not complaining but what I am saying is it’s hard. It’s hard to juggle your life and become your parents caretaker. No one tells you these things. You go to college think about a career but who prepares you for your parents ailing health. Was it a given? Did I skip that lecture? If I had a sibling maybe I wouldn’t be playing circus like I am right now.
This is what makes me feel like I should’ve given my daughter a sibling. So that the day I am gone she is not alone. So that the day I am not well she has someone to help support her through it.
Because life is hard. There are no easy choices, and even harder challenges await and as the adage goes: “life waits for no man.”