Why I am sleeping in...

I was told there would be good days, and bad days. And, that there will be a time when you are getting better and better, and then there will be a setback. Don’t get discouraged by the setback I was warned, yet here I am at 1:30 in the morning unable to sleep and trying very hard to not be discouraged.

For the last few weeks, each day I felt better and better. My limp was all gone, my swelling and joint pain all but a ghost as it barely impaired me. I could lay down in the bed and fall asleep within minutes because there wasn’t the 30 minutes of slow unwinding back pain. My Charlie horses were all forgotten as if it had all been a nightmare. Was I 100%, no, but I was just like an out of shape person who could actually sit and watch tv without getting up 20 times to readjust.

Then yesterday this terrible wave came over me and I actually had to sit down. It took all of my energy to not start to cry as the jabbing pains seemingly came out of nowhere and the muscles in my legs began to tighten. Trying to stay calm I slowly moved back and forth as if to ease the pain, and keep from getting stiff, but here I am the next night tight with pain, twitching, swelling and frustration.

I didn’t realize how upsetting it would be to feel bad again. I have felt 20 times worse, but to start down this path of pain is scary, I don’t ever want to feel that bad again. My brain is saying, “stay calm you are only making it worse!” But as my muscles tense and my wrists and fingers throb with every tap on the keyboard I can’t help be feel a tightening in my chest that travels up my neck to my jaw.

Set backs are natural in life, this isn’t something I don’t know. What I don’t know is why I am taking it so hard when I know that I am probably making it worse. I think it’s time for a hobby outside of this house. Something other than unpacking and painting, and all the things that come with home ownership. I want to run, yet I can barely walk. So, it’s time to take a baby step, and go out and find something fun and exciting, it’s time to do something…something fun, with limited physical exertion as a plus!

"Are you depressed?"

I hate when people assume that because I have fibromyalgia I must be depressed. The commercials tend to say that I am. They don’t know where it came from but the leading theories are it was a traumatic event or that it happened slowly over a life of stress.  So if this were the case, then I must be depressed because it’s all psychological…

Most people don’t know the history of the diagnosis of autism, it started out that the mother was blamed. She was blamed for not being loving enough to her child in a crucial part of their development. This was the theory, for way too long, a theory created by a man, ironically. Eventually this has been proven not to be the case, but for all those mothers who felt like it was their fault, bearing the burden of the blame having society blaming them, medical science did not know at the time what they were doing or saying. Most Chronic pain diseases with no traceable root are considered psychological, until otherwise proven.

In ancient times, and even in the depths of the rain forests still today, when someone was sick, it was believed that a witch had cursed them. There would be a hunt for the witch, and then once found that person would be put to death. My point here is simple; when we don’t know the causes of something it’s really easy to make assumptions.

Do I get sad, or upset, of course! I get frustrated with myself when I can’t accomplish everything that I had wanted to, and feel limited by my pain and fatigue. Sometimes I push so hard that the repercussions later are not worth it, it can take me days to recover by trying to restructure my days. But I hate to “waste” the day that I have and there is always where the conflict ensues.

Basically I am at a point where I wish I knew why this was going on, because maybe if I did, it would stop. We think that in this day and age medical science has all the answers. I really don’t believe that they do. The next time you meet someone with a condition that you think that you understand, take two steps back because maybe you don’t. And no, I’m not depressed, I’m Joanna!

"Hot Coffee"

Yesterday while I was out catching up with a friend, I might have walked too much. I can’t be certain, because at the time it felt great, but then after sitting in my car to drive home, getting out was a slight challenge. I had to laugh, and got myself into bed to take a break. I was lucky enough to find something on television that actually grabbed my attention, a huge feat for a Sunday afternoon!

I watched, “Hot Coffee,” a documentary that delve into that McDonalds case and what it meant and how it has effected even people today. You remember when that woman spilt the coffee and sued and won! Yeah, remember how most of us thought it was nuts, how “stupid” is she to put the coffee there then sue…if you do, then you have to watch it, because it was so much more than that. How she abused the system for her own financial gain, everything that big business wanted you to think. Basically, if you are a person who lives in the United States, or is interested in the judiciary system, or owns a cell phone, has a credit card or just plan has a job, you should watch this. I was so touched and moved by this, I felt upset.

I am extremely empathetic, so for me it’s easy for me to get upset about other people’s pain. But as I was talking it through with my husband I couldn’t help be so upset that he told me that maybe this was something I would want to get involved with, Tort Reform. This made me more upset, because I can’t be involved in every issue, there are too many! So he suggested that I just tell other people they should watch it, and maybe they will pass it on, and then that person will try and help us all.

Personally I love documentaries of all sorts. But if you don’t like them, you will like this one. It moves fast and its real life examples that you either know, or can understand because it really could happen to you…scratch that, it is happening to you, you just don’t know it.

I would love to know what you all think of it, and if it was an hour well spent. They say you should never stop learning, and my hope is, I never do, and I hope the same for you!

http://hotcoffeethemovie.com/   

Talking Baby

So usually when I have a deep upset feeling, something that scares me, or makes my heart hurt, I push it as deep inside of me as I can. I thought this time I would take that hurt and lay it out and see if it makes any sense once I type it. Then once I read it.

I ask my husband from time to time, pretty much every time we are around children, “do you want children.” His response is always vaguely the same, “not right now,” or “someday.” Then he looks as me and asks me and I just agree with whatever he says always adding, “but maybe never.” A few months ago when I went to the doctors it was to find out what was going on with me, because if we were going to try and have a baby I wanted to be in peak health first.

Well, as the story goes I was getting worse as I was doing physical therapy, and finally after many tests I was diagnosed with Fibromyalgia. I have always been on the fence about children, more leaning towards not having any, for most of my adult life. I questioned always if I would be a good mother, and even worse if I could be as selfless as you have to be. I take being a parent very seriously, and have thought it through and through so many times, always walking the fine line of should I be a parent?

So when the doctor said about how people can just wake up one day, and be unable to get out of bed for a year, this has really stung me. I feel so burdened to the core and more confused than ever. I mean, isn’t this what I wanted? To not feel weird that I didn’t have children, or come off as cold and heartless, but that I have a medical real reason to be scared? Should this not be the sigh of relief that I was looking for?! It’s out of my hands!

But the other night Michael says, “it’s not fair that you don’t tell me if you really want children or not,” since I always agree with him. But today, on my birthday, getting a year older, and closer to the time when having a child will not be as much of a choice anymore, I feel sad. Sure I say how they are too much work, because let’s be honest children are a lot of work! Maybe I have shaped my opinion on not having a child based on how I haven’t felt strong enough in years. There are too many maybes. But when I see how much my nieces and nephew bring such light in their parent’s eyes, I always leave with a slight ache in my heart that I won’t ever have that.

I have no idea what I’m going to do. I guess that’s good, because it means I haven’t said no completely. But when you have a child, you have to get out of bed. So now as I read this, and look at my computer I think, wow, I don’t think you are wrong for not knowing what to do. I think I’m right to be scared and unsure. But today is my birthday, so I’m going to put that out of my head and go see a movie because there is no point in worrying about anything other than if I want extra butter on my popcorn today.

Lucky me

People will say that I am lazy. People will say that I am spoiled. People will say lots of things about me, so what I am I going to do about it…I’m going to let them, because I don’t care what they think.

After many discussions and even more back and forth, here I am in Delaware unemployed, unpacking, and trying to make this place feel like home. I have no clocks in the house except for the few that were here, such as the stove. But I like it like this. I wake up when I am ready to get out of bed, and I go to sleep when I am tired, sounds grand doesn’t it?

Well, it really has been a month of ups and downs. Going from working 2 jobs, to none sounds exciting and scary. I mean, it’s like a vacation right?! Except for the excruciating pain and mental frustration of OCD and perfectionism haunting me as I walk into unpainted rooms with boxes still sitting in them, but other than that, it’s really exciting. It’s only been a week I should cut myself a break, but let’s be realistic...I can’t. I try to say out loud, “it’s okay, I will get to it later,” but inside I worry what if later I can’t?

About two weeks ago the doctor told me that I am lucky. There are people that one day wake up and can’t get out of bed for a year. I sat there in silence and as my husband thought I was annoyed at him telling me how lucky I was, I was more scared at the prospect of being bed ridden for longer than a day. It never occurred to me that it could just out of nowhere get worse. I just thought that I could get myself under control then move on with my life.   

Moving is fun, exciting and extremely stressful, but as the days turn into nights, and more and more gets done, it feels vaguely as if it’s becoming a home. I have insisted we take all depressing colors off the walls and it make it soothing and warm as we can. I don’t want my house to feel like a depressing cave on the days that it hurts too much to leave it.

So sure there will be people who say how lucky I am to not be working right now, or how spoiled I am that my husband works so hard to make sure I have a roof over my head. People will say I look good, or how I don’t look like I’m in pain at all! People can say what they want now, because I plan on taking as little time or as much time I need to get myself together. I have changed my diet, decided to not live by a clock, and paint if I want to paint. If I choose to walk around with a limp because I want to walk, that’s my choice. If I choose to take a day off and you come to my house with all the furniture pushed to the center of the room, you are more than welcome to help paint!