New Normal

I struggled for a number of years before I was diagnosed with Fibromyalgia. You can read about this journey here. After I was diagnosed and finally knew what was going on in my body, I still struggled to come to terms with it.

One reason is because Fibro is a lifelong condition. It's possible at some point those in the medical fields will figure out a cause or some way to treat the cause without just masking or treating the symptoms. But, until that point I will have this Fibro condition that won't go away.

Another reason is because Fibro is nebulous, relatively unknown, and invisible.

Invisible because people usually can't just look at you to tell you have it. There isn't a test you can take for it. You know how you feel but you still look the same as you always did to everyone else.

If the Fibro symptoms are relatively mild, you may also still seem the same to everyone. My symptoms have not been mild since my first son was born and since my second son was born in February of this year my symptoms have ramped up even more.

I knew it was likely my symptoms would get worse after child birth ever since I learned that physical trauma was a factor in developing Fibro symptoms. I decided it was worth it, and Connor definitely is!

[Actual picture of our son Connor James]

However, I don't think I will be able to have another child, in large part due to how much more debilitating another childbirth could be, as well as because it's all I can manage now to handle two kids. I don't think I would be able to manage a third. I have had to be very honest with myself through this process and have had to know where my limits are. This is definitely one.

Back to Fibro! It's relatively unknown- both as far as how to diagnose it, treat it, and cure it, as well as in the minds of the general population. Now, it is much better known than it was even 5 years ago. There have even been commercials promoting certain medications to treat it and more and more people have been diagnosed with it. However, compared to other illnesses and conditions, it can often be overlooked and misunderstood.

Fibro is nebulous. Yeah... People don't always know if they have Fibro the way they can with other conditions. You just slowly feel more exhausted, more depressed, and in more and more pain.

Once you are finally diagnosed (since there is no test for it there can be a long waiting period while the doctors run tests and tell you everything you don't have), it is still nebulous because there is no clear cut prescription, no definite list of things to avoid or do to change it. Some things work for most, a few things work for some, other things work for the rest. There are guidelines, suggestions, and possibilities, but you have to try them to see for yourself if they will actually work for you. And so- Nebulous.

So, perhaps you can see some of why I was struggling after learning that I definitely had Fibromyalgia. I was doing what I could to manage my symptoms but I was struggling a bit with my attitude. Some days I was fine, and some days I was... irritable and depressed.

I met with a dear friend for lunch who shared with me her grandmother's struggles with forgetting things and being less able to do things she was previously able to do. She would try to encourage her grandmother when this happened, so when something else was forgotten or not able to be done anymore, she would tell her grandmother, "It's alright. This is just the new normal," and helped her learn to live in the new normal.

This shift in perspective was really helpful and really applicable to having Fibromyalgia! It changes, often for the worse, and then will stay the same until something triggers another change, or gives you a flair up. So, thinking of Fibro this way was a big help!

It's amazing how much of a difference a shift in perspective can be for you. I felt like I could manage things, be less irritable, and practically buoyant compared to how I felt before. I could sit there, take a few breaths when I felt overwhelmed, and just remind myself that everything was ok. Everything didn't suddenly feel wonderful, but in the midst of exhaustion and depression I could still have a tiny piece of happy.

It has still been a struggle, but since that shift in perspective it has been easier. My faith has helped a lot too, which I will share in a later post.

Have you had to make any attitude adjustments?

My Fibro Story

Since Fibromyalgia doesn't have a known cause, it's hard to say where my Fibro story started. However, there was a time I definitely knew something was wrong...

When I was 22, very close to celebrating 23, and away at college I woke up one day and realized I felt like I had never slept at all. I was exhausted. I dragged all through my classes and activities that day until I finally was able to sleep and get rest. Except I woke up the next day again feeling like I hadn't gotten any sleep.

Soon I was falling asleep in class, feeling awful, and struggling to focus on homework and assignments, even to comprehend what I was reading in my textbooks. [That fatigue and fogginess in thinking and concentrating has continued. Some times are worse than others]

After a week of this I knew something was wrong. No amount of sleep changed how I felt. I finally went to the doctors and they took a number of tests. At the end they told me I was perfectly healthy and nothing was wrong. Have you ever wanted to throw a total tantrum but as an adult? So wanted to here! I still felt awful so I knew something was wrong!

There is nothing worse than waking up one day feeling awful and, as time goes on, realizing that your body has betrayed you. If you have never experienced this for some kind of debilitating condition, illness, or disease it is difficult to convey the horror, confusion, and grief this makes you feel.

A few years went by while I met my husband and got married (one of the best decisions of my life!), I started my masters in counseling (also one of the best!), and still- no matter how much sleep I got I felt exhausted. Eventually, after reading online, I figured that I had chronic fatigue. I had a lot of the same symptoms. I still went for tests every so often as things seemed to get worse. The tests still came back saying I was perfectly healthy.

At this point my husband tentatively suggested that perhaps since the tests said nothing was wrong then maybe nothing was wrong? I responded with exploding, responding that I felt awful and it was in no way normal to feel this way. He learned to keep those kind of thoughts to himself. :) I learned to not respond badly when someone asks a logical question, even if it's upsetting.

I worked at an independent bookstore for several years around this time.

 
I learned that one of my co-workers had Fibromyalgia. She would occasionally call out sick the morning of work, need help lifting the boxes, and other little things like that. I remember thinking a little ungraciously the third time in a row I was working and she called out sick, then finding out later that she had been gardening (one of her favorite hobbies) or something a little more physically strenuous.

If I could talk to her now I would tell her, "I soooo get it now! I am so sorry I ever thought anything ungraciously and wish I could have thought to make it easier for you." Because it is hard. It is hard to get out of bed, and hard to resist doing something you love, even knowing you might pay for it later in pain and stiffness.

A couple years later (and a lot of difficult nights and foggy days) we decided we wanted to have kids and I gave birth to our son.

[Actual picture of our newborn son- Reilly Christopher]

Now, my son is wonderful! But the process of birth and recovering afterwards was awful. I was completely wiped out physically from the pain. I was drained mentally and emotionally from fatigue. I developed Post Partum Depression, which kept me in a constant state of stress and emotional distress. Reilly's whole first year is probably the worse year of my life so far because of all this. Reilly himself is the best part of that year!

If you've read my post about what Fibro is, you will have noted that one of the risk factors is physical trauma. I believe that the pain of giving birth ramped everything up. I started having pains in my hands and feet. My arms and legs would tingle periodically in a way that itched and drove me crazy. I had a hard time even walking because it was painful. My hips began giving me trouble. It felt like I was developing Rheumatoid Arthritis in all the major joints and all those in my hands and feet.

 As this year went on, I began feeling trapped in my body and wanted desperately to either have my body work properly and let me feel right, or to not be in my body anymore. Please understand, it isn't that I wanted to die. I was not suicidal. I just didn't want to be in my body anymore because I was so tired (having a newborn didn't help with that!) and so tired of hurting and not knowing why.

After a couple months I was able to go to an RA doctor, and received the orders for another series of tests. However, this time I got a diagnosis back- Fibromyalgia. Finally, after 7 years, I had gotten a doctor that both had the knowledge and took the time to really listen and figure out what was wrong!

It was both relieving and depressing. Relieving because I finally had a definite diagnoses in which everything I was going through made sense! Depressing because I already knew that Fibro was a lifelong condition and there was no cure for how I was feeling- I hadn't wanted that reality.

It took a while to completely come to terms with having Fibromyalgia and how different my life would be with it. More of that in this post.

Why FibroMyNormal?

Why Did I Start This Blog?
Recently I've thought a lot about how more and more often people are telling me they wonder if they have Fibromyalgia, have recently been diagnosed with Fibromyalgia, or know someone else that has Fibromyalgia. Still, not everyone knows what Fibromyalgia (Fibro) is, how it affects your body, or how it affects your life and relationships. So, I thought why not put together a blog sharing about Fibro, my experiences, and perhaps I'll eventually have others contribute as well. :)

Why Choose The Name FibroMyNormal?
Several years ago, a dear friend shared how she encouraged her grandmother, who was struggling with some issues that arise with aging, in thinking about her situation as the new normal and striving to be content where she is in the moment. As she shared this story with me I realized this was a piece I was missing in my thinking about Fibromalgia. Fibro can be an up and down journey with plateaus where you could stay for a few days to a few months.



Rather than remaining frustrated, angry, or discouraged, I just need to remember that this is normal for now. I have more on this here.

Who Am I Writing This Blog For?
I am writing it for me. I'm writing it for you. I'm writing it for your friend that just got diagnosed, or your family member that wonders if they have it. I'm writing for the friend that doesn't really get it, the spouse or significant other that gets frustrated by it, and the child that is affected by it. I'm writing it for anyone and everyone. Some posts will apply more to some than others, but I hope overall that those reading it will be encouraged by this blog.