Just say NO

Finding out you have an illness can be one of the most challenging experiences you have had to date. Being surrounded by the right people can make or break you in the beginning. It usually takes months to find out what’s really wrong, if not years. Your friends and family might not always understand, or they may not want to. Sometimes we learn the hard way just say no to letting yourself hurt because of people who can’t, or choose to not understand.

Months back when I told my sister how I was feeling she said, “your diagnosis is fibromyalgia, now you don’t have to see a doctor,” and I was like, what the heck is that?! I watched a few youtube videos and many tears later Michael took my computer away from me and made me go to bed. When I suggested it to my friends, one was like, “oh I know someone with that, it’s not that bad,” and then from then on it was as if my pain was diminished because she knew someone who was living with it, I would be okay.

Then I went to my doctor who mentioned it may be fibromyalgia, in so much pain that day that I couldn’t sit, I stood there dancing back and forth because my twitching was so bad I couldn’t stand still, I just cried, “no please tell me it’s something real.” The doctor just said, “this is why you are going to a neurologist, I just said it could be, it may be something else,” she paused and said, “it could be MS.” But continued and said, to stay calm it was very unlikely to be MS but it wouldn’t hurt to read more about it.

I went to the neurologist who seemed stumped by my blood work and reactions to things, he sent me for an MRI and then I received a phone call with my results, “well good news it’s not MS, I think it is the fibromyalgia, so we will treat you for that,” he paused and continued, “and you have arthritis in your spine,” and when I asked it that could be the cause of my pain he replied, “no.” We hung up with no other explanation, recommendations to see another doctor for treatment, or what to do next. I walked to my car, fighting back the tears because I know I have a life sentence of pain, youtube said so.

In those weeks I lost my closest friends, or at least people who I thought were. When I was scared I would tell them what the doctors said I could have starting from a thyroid problem all the way to Fibromyalgia. I confided in them before I told my family I didn’t feel well, and to be honest I hadn’t felt well in about a year. I was told by them that I was doing all of this for attention, and that I was making it all up. Having a disease that is worsened by stress this was not helpful. I blamed myself, and even thought they were right, maybe I was faking, maybe this wasn’t real. Maybe I really was a horrible person. Accepting my diagnosis has not been easy for me. I know I am in pain, yet somehow when the people you trust the most tell you that you are a liar, you begin to question everything, especially yourself.

If there is one wonderful thing that happened out of all of this, it was I lost those friends. Because in this new course of my life, I have made much better ones. Ones that think it’s normal to talk about your fears and pains. Ones that don’t want you to pretend you are happy and life is good just to make their problems seem more important than yours. People who don’t always want me to make the effort, because they know how hard that effort can be, and appreciate you made it. The best thing you can do when you are in pain, is get away from people who don’t care or can’t understand, and find people who do. They are everywhere, and one of them is right here.

Sleepless in New Jersey

Sometimes I try to think back to when I realized I was beginning to have a problem. You know how at the end of a thriller movie they retrace how if you had paid better attention to all of the clues you would have known the whole time and you go, “OH!” So its nights like this one when my body aches, it’s swollen and the Charlie horses travel up and down my legs and into new places I never knew you could get Charlie horses, that I think back to how it all began.

Tonight as I was trying to lay in bed and my left arm kept going from numb to throbbing that I began to think back to how when I used to wake up numb on the left I blamed my husband. I thought that he was putting too much pressure on me, maybe cutting off the circulation. Then I began to think about stupid stuff like how I told the office manager how the sink wouldn’t turn off all the way, and he pointed out how it wasn’t pushed off enough. I wasn’t strong enough to turn the water off, but at the time I didn’t realize the clue.

How out of nowhere I began getting Charlie horses, and like any person with the internet I went on to find out that I wasn’t drinking enough water! So every time I would get an attack I would guzzle a glass of water and swear relief, until I would get into bed and they would begin forcing me in and out of bed. Again, another ignored clue. When I began to have twitching and tremors, or when I began to stutter because my mouth couldn’t keep up with my brain, I just blamed my nerves at a new job, I never thought I had a problem…another clue missed.

So tonight I listened. My left side is numb and yet throbbing, and my right side is aching and strained and here I am, complaining…or as I like to call it, “talking it out.” You know when you ask someone for help and as soon as you do, BAM, it comes to you. Tonight, or since its 1:00am, this morning now, it came to me. All of these little clues in the last year of the way I was feeling and the hints to my future are still happening. I’m scared, I’m tired, I’m frustrated, I’m dying for something with gluten or a piece of candy, but back to our topic, I am still in denial. I am in extreme denial about my limitations, because I don’t want people to think I’m lazy.

I care more about what other people think of me, than what I think of myself. I say I don’t care, but I do. I want everything to follow a schedule and be organized. I think there are a right and a wrong, and my life is ruled by trying to never make a mistake or let anyone down, but that only makes me make more mistakes and let more people down.  I don’t know what to do, but I do know I am trying the best way I know how. It might not be the way that my family wants me to handle it, or even the doctors, but every day I am proud of me for not saying, “I can’t,” but when I need help asking, “can you?” After all, asking for help is the first step in any recovery...the second step thats doing things you never thought you would to get the help you need.

Tempting fate

About a year ago, I don’t know for what reason, I said to my then fiancé now husband, “I would rather die happy then to give up my food.” I am a closet foodie, who loves to explore new food places and always to splurge on amazing meals. We have driven an hour for a hotdog, because, well you just have to try it! But today I have to eat my words, and not too much more than that.

Today I was told what I knew was coming, no more gluten, and no more sugar. There was no, “last meal,” it was just, “if you want to get better then you have to do this, right now.” Literally sitting there saying yes and feeling that this really was an investment I was ready for, after all anything to help me feel better, I tried to convince myself as I walked out of the office trying to get my way home. As I step out of the cab near Penn Station I see lots of food carts. Perfect! I’m starving. So I get in line for a hot dog, after all, there is nothing better than a dirty water dog in NYC! Until I realize, bread! A bun is made of bread, and have to walk away hungry and depressed.

As I make it back to Newark for my next train I see a little place with lots of healthy options. I walk in and everything is gluten! Bagels, wraps, sandwiches and if it’s not filled with gluten it’s a bag of chips or fried, so I walk in a hungry defeat to take a seat. There I sat hungry, confused and surrounded by people eating their gluten and sugar filled lunches. It then occurred to me how I said I rather die than be limited by food and why that statement is actually reversed in American society.

We are a food obsessed society, even more, how can I get a quick meal? We assume things are healthy until we actually take the time to read the wrapper. We assume because we don’t have a rash or our throats don’t close, that what we ate we aren’t allergic too. We also assume that the FDA cares about us, the people who it is supposed to protect, more than big business. Even if you read the wrappers here, they still are leaving things out and when they actually put it on the wrapper, like what the heck is “natural flavoring,” seriously?!

Right now I am beyond upset about my limitations with food. I asked, “when I feel better can I have it back,” and he sadly shook his head no. I asked my husband if he thought I could do it, go a life without cupcakes and crescent rolls and he said, “if anyone could it’s you.” Sure maybe in a few months I will splurge, eat a cookie, but let me tell you if I’m going to break my role and eat a cookie, it better be damn good, because I’m not wasting it on Chips Ahoy or a store bought cupcake.

When I’m dead I’ll sleep…

You know that saying, “when I’m dead I’ll sleep,” the one for people who work way too much, live too much, the people who are always doing? Well, that’s one of those sayings I don’t say out loud but always wanted to live. But realistically I need my sleep. I always have. My parents really never let me stay up late even when I was in high school because they knew, I needed my sleep. It was obvious by my grades of my first semester away at college when I had an 8:00 am class, and we can all guess which was the only class I ever failed in college because I slept through it…literally in my bed.

My point is beyond how there is a learning curve in life, i.e., going to stay up all night and still need your 8 hours of sleep means you are going to have to start classes at 11:00 am instead of 8:00 am. But, that I need to sleep. Most of us do, and so we accommodate our lives to make sure that we can…especially those of us who don’t drink coffee. But when we were young that number was larger, maybe 8 hours, and as adults we think if we get 6, that’s a good night!

When you suffer from any kind of pain ailment or disease, chances are you aren’t sleeping very well. Usually you hear people who are popping sleeping pills, or drinking coffee all day, maybe 5-hour energy anyone? But even if you can actually “wake up” you aren’t helping your body, all these things are just making it worse. When you suffer from chronic pain, not sleeping over time begins to cause other problems that you don’t even realize are being compounded daily! I know if I didn’t realize it.

So what do you do? Do you take the sleeping pill? Do you just quit your job and take a nap every afternoon when your body is ready to give out? Well, me, I used to cry…a lot. I never said it was a good answer! I don’t have an answer! I do know that the more upset I get the more I tune into my pain, so it’s a vicious cycle of crying feels good because you are letting it all out, but being in that much pain to make you cry makes your pain worse. But sometimes I can’t help myself. No matter how smart we are, and no matter how much we know, “if I do this, it will make me hurt tomorrow,” the lactose intolerant person who loves ice cream eats it on a hot day knowing that they will be in pain later but thinking it’s so worth it at the time, but later they may swear up and down they will “never do that again!”

So my trick is, I don’t have a trick. I try not to get upset with my body when I can’t sleep. I try not to blame myself for all the years of stressing about nothing of importance, such as “will people like my blog post today,” “is my sister mad at me?” But most of all, I don’t get mad at myself if I can’t sleep. Mostly after years of not sleeping I have been mastering the art of passing out. But when I wake up at 3:30 am every morning, I just get a drink and try to go back to bed. Some nights I can’t, but most I can, if I wait long enough. Sleep is something that we all need, consider it a vitamin of sorts, and I take enough of them, what’s one more?! So if you want to take a nap, take it if you can. If you want to go to bed at 8:00 pm, do it! If you ignore your body for too long it will eventually make you take that break, like it or not.