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.

SHHHHHHHHHHHH

The ugly truth in the world is, people love to gossip. But, they love to gossip about others, not themselves. So when the dynamic changes and the conversation becomes about yourself, for most people that is hard. I mean, we are told, “don’t brag,” and things like, “people are just being polite when they ask you how you are feeling, they don’t really want to know,” then we begin to wonder, is it okay to talk about how we feel?

Now that my co-workers know that I’m “sick” they ask me how I am feeling every morning. Some mornings I feel like it’s obvious how I’m feeling by the way I waddle in…late for that matter. While other days as I’m sitting at my desk as they walk in it’s not so obvious. I always say the same thing, “okay for me.” Then the other day my boss asked, “would you rather I didn’t ask you how you were feeling?” I wanted to say, “YES! PLEASE stop asking me!” But, instead I said no, it was fine. The reasoning I didn’t tell him to stop isn’t a simple one though.

Because I over think everything my first thought was, maybe he is asking to gauge if I’m lying. Of course that’s not right, he is asking to be polite. So in return I must tell him it doesn’t bother me that he asks. But it does. Why? Because when people ask me how I’m feeling, I begin to focus my attention on how I’m feeling, which usually makes me feel worse until I can redirect my attention. It’s like when people tell me to think about my breathing, then I begin to hyperventilate, breathe off course, hold my breath, it’s just something that when I think about it, I just make it worse. But thinking about how I feel, it all of a sudden makes me realize the radiating pain in left arm.

But shhhhhh. No one really wants to know how you feel. I dread going to the doctors where they ask you to rank your pain from 1 to 10, like there is a Richter scale for pain that everyone knows.  Let me tell you something, I know it’s not a 10, because I’m not dead. I assume 10 is pain so horrible it is deadly. I give 7 as my average annoying painful normal, and it was 8.5 when I couldn’t leave the bed. But how do I really know? No one hands you a chart and says, “here are the pain number levels.” It would be much easier, but they don’t. Yet we are asked, what our pain level is, never knowing how much worse it truly could be, and hoping to stay at a 7.

But back to the ugly truth of gossip, the vein of our society’s communication, gossip is acceptable, talking about your “condition” not so much. Even if you are asked, think about your response. Does it really matter to this person? Do they really want to hear about how your left side is numb today? Do they really want to hear about the Charlie horses you are experiencing in your arm and foot simultaneously?  Or would they rather hear, “I’m okay.” I’m not saying don’t ever tell anyone, I’m saying find the right people to tell. Find an old friend, a new friend, a support group, find other people like you, or not like you.  Just don’t not tell anyone, because when you focus on the pain alone, it hurts way more, and it doesn’t need to.

Find your voice

When I was unemployed I began to attract other unemployed people. I would walk into a party and people would pull me to the side and say how they loved my blog and how it helped them too. I felt so encouraged to keep on going, and was truly upset when I actually gained employments at losing my blog and not being able to help people I may never even meet. So when the suggestion of a new blog began it was hard to handle. What if it flat out sucked?!

Then best part of my unemployment blog was how no matter how traumatic or sad the situation, I always tried to have a positive outlook because I knew that my day would come, and lucky for me it did. I tried to always have a joke, or some helpful hug stuffed in there so everyone knew I was okay, but most of all, they would be okay too. I am finding that was a lot easier with being unemployed.

Again the emails and support have been rolling in for me, which inspires me to write this blog even though it hurts to keep my arms up this high today. I am inspired by an old friend who is willing to tell me about her struggles with arthritis too, reminding me that even if she might not always be able to brush her hair herself, she was still off to work. I’m inspired by a friend of mine who suffers from endometriosis and you would never know her pain because she is so strong on the outside. I am inspired by the warm wishes of family and old friends, but more I am inspired by my amazing husband who never told me I wasn’t feeling my pain and was proud of me for going to doctors until I finally found one who believed there was something wrong with me and did more than a blood test.

I’m not going to lie, it’s embarrassing as all heck to feel like you are nothing but complaining. Shouldn’t we be stronger? Shouldn’t we just have a brave face and go to work and take care of ourselves and our homes  and never let anyone know the pain we have, let it be physically or emotionally…NO! You should be able to tell people you are in pain and not be the butt of a joke. You should be able to sit there and not clean up after dinner because you are too tired. You should be able to cry because it hurts so bad or you are so scared, you  can have moments of weakness and not be a weak person.

Consider this a support group. Consider this a PSA of sorts. Consider this your voice if you don’t feel like you have one. Consider this your push, the push to say something to someone about how you feel. The push to tell someone, “it’s okay if you ever want to talk,” even if they say no, they now know that someone actually wants to hear what they have to say. Just know you are not alone, no one ever is, even if it feels like no one could ever understand…they don’t have to, they just have to care.

I'm "sick"

I have come to get used to my math limitations, or my memory limitations, or my lack of being able to make a decision such as french fries or onion rings…I just get them both of course! But coming to terms with my own physical limitations has been compounded by the fact that everyone wants to help me.

Now, you are saying, what is wrong with people wanting to help, that sounds great! It is. I have to say I am very lucky to have so many people willing to help me carry things, open things (seriously those Poland Springs water bottles are impossible), literally offer me their parking spot so I don’t have to walk the 2 blocks I have to park to get to work. My husband cooks dinner, and he wants to clean up after too! But it makes me feel badly because I’m not ready to wrap my head around being a “sick” person, I’m still me.

Just weeks ago only a few people knew I was having a hard time, getting tests, going to physical therapy, but it wasn’t until two weeks ago that they really knew how much pain when I barely made it to my desk and my normal “sunny disposition” was replaced by a grimaced and white face of pain and I will say it, there were tears. That was just one week before I found out I had arthritis running through my spine, and two weeks into taking medications that won’t allow me to take any form of over the counter pain relievers for my fibromyalgia, which can take 4 months to work?! What the heck! If it doesn't work, then I have to start a new medication and wait 4 months again? Anyway, I'm losing the topic. 

But today was the first time that a door was opened for me because I couldn't get it open, the first time I saw the look of concern in a co-workers eyes as I tried to pull a ream of paper out of the box as if it pained him to watch me do it. Today was the first time I felt like people looked at me like I was sick. I mean, sure, I’m “sick” but already I have began to come to terms that it’s not the flu, it’s now my life.

My decline has been slow and long, since thinking I had mono over a year ago to possibly thyroid issues. The more I have been doing in the last few months to, as I liked to call it, “get stronger,” has only seemed to make me worse. I need time to come to the understanding of what my body really needs. Not just vitamins and prescriptions.

Talking with my sister the other day after we finished talking about her friend who is sick with cancer she asked me how I was doing. I could barely respond, I mean, how can I follow cancer that is a serious illness?! She said, “she will get better, you won’t.” She said more, but that really stuck. I finally thought, maybe I don’t have to feel embarrassed anymore, not of what other people are going to think of me, but of what I think of myself.

You can't see it doesn't mean it's not there...

Sometimes you look at someone and you think, "they must have it so good." It's so obvious by the way they walk, or the clothes they wear, maybe it's the smile on their face. You don't quite know the reason, but you don't have to, to know that their life is good. But what if you were wrong? What if that person was a silent sufferer? My name is Joanna, and I am one of those people.

I was diagnosed with an arthritic back, fibromyalgia and tremors in the same day. I was told to go get a specialist to diagnose my other ailments as well, which include but are not limited to IBS. I mean, I knew I had problems, but when he said it like that I didn't feel relief I felt frustration. "I want a REAL diagnosis, of a REAL disease or ailment," was my plea. "Fibromyalgia is controversial, but your pain is real, this is real and its time you start learning to deal with it," as he began to talk about support groups to acupuncture.

For these first few days I have focused on my back, that is real, that is tangible. When my husband says I’m, “pushing myself,” I just get more angry and push harder, the complete opposite of what is recommended for fibromyalgia, and of course pay the price as my hands shake and my speech stutters and my body throbs in pain. It’s amazing how anger gives you so much energy, and denial gives you so much pain.

I’ve had back pain for almost 10 years. I remember when it started, it was one year after walking across the street and I was hit by a car. Yeah, literally I walked and a car hit me, that’s a whole other story! But one year later in so much back pain my mother took me to our family physician who said, “it’s just your muscles relaxing.” So over the years as it got worse and worse, I just said, “it must be that my muscles are working harder and harder,” so I mostly kept it to myself after all this is “normal,” until my husband home from one of his trips realized how hard it was for me to lay down and get in bed. Crying I said, “it’s just my muscles,” and annoyed with me he grabbed 3 Advil and that became my nightly ritual, take 3 Advil with dinner.

Just one year ago I thought I had mono, I was so tired, I got blood work, and was told I was fine. About 6 months later, I thought it was my thyroid, got blood work again, was told I was fine, although my cholesterol was high…of course it is I literally eat butter. I got more tired, and more weak, and then began the muscle spasms, and Charlie horses. Again, just thought I wasn’t eating well enough and drinking enough water. So I actually started to eat better and drink loads of water, but finally when the pain became “too much” it was time to go to a doctor. Long story short, and many tests and doctors later here I type. I am a person living with fibromyalgia, and this is my journey learning how to live with it.