It has been many weeks since my last post. A lot of stuff has been going on in my life and everytime I came on here to discuss it I would either rant too much or start crying and had to stop. I intended this blog to be a tool to help my friends and family understand me and what I've been going through; to make them realize I am fighting the good fight but to also educate others going through what I'm going through. To maybe give someone else some hope that they can live with this disorder and maybe even beat it. I really don't want it to become another place filled with negatives and hopelessness. But, the reality is that sometimes in this battle that is all you have left.
For those of you who believe fibromyalgia is all in your head... you may have a point. Here's an interesting little story. In March 2011 I had a brain MRI that showed an unusually large amount of lesions. I was carted off to neurologists with the very real possibility of a diagnosis for Multiple Sclerosis (MS). But no... I don't have any other symptoms... thank goodness. But to make sure we did a follow up MRI in January 2013. After a very stressful phone call from my doctor to come in to discuss the results (isn't that always a fun call to get) and two stressfull weeks of waiting I was thankful to hear there hasn't been any changes. I was told by the doctor though that if all they looked at was my brain MRI they would diagnosis me with MS and that would be that. So, maybe, just maybe, fibromyalgia is a neurological disorder. I thankfully have a very amazing set of doctors caring for me but I can tell you right now MRIs are not the norm for people suffering the symptoms I have. I truly believe ALL chronic pain / fibro / chronic fatigue patients should have a brain MRI. I believe if we can prove it is a neurological disorder maybe we can start finding a way to cure it. But that is a battle for another day.
As I had mentioned earlier, I was in a car accident on October 15, 2012 (I think that date will be forever engraved in my memory). I have not felt so bad and been in so much pain and been so exhausted since I first started seeing Dr. Tompkins for the fibromyalgia back in March 2011! An important thing to mention here is one of the number one causes of fibromyalgia is a physical trauma such as a car accident. I would be willing to hazard a guess that approximately 30% or more of Dr. Tompkins patients developed fibromyalgia from an accident. But the one thing I wasn't expecting was that I now have a new diagnosis of chronic fatigue.
Woah, let me tell you, chronic fatigue takes the fibro and makes it seem like a walk in the park. EVERY second of my day has turned into a battle!! I fight to wake up in the morning (even after 8 hours of undisturbed sleep)! I fight to pick out clothes to wear, brush my teeth, wash my face. Unfortunately, this is a tired that no caffeine can cure. I have to go to work, my life does not allow me to take sick leave or too many sick days at this point. Add to it that I have a high stress, time-sensitive job that does not allow for someone to be sick or feel sorry for themselves. I was very thankful for the month of February at first because we weren't busy. But this last week has been more hectic than normal and we had people on holidays so there just weren't as many hands around as there would normally be to see me over the bad times.
That caused me a lot of resentment. I wasn't mad at any one person, I was mad at the disorder, at the fates, at the heavens. But of course, who got the brunt of it? My family, my co-workers, my friends. For that I am truly sorry. But Angela, I owe you the biggest apology of all. It is really hard for me to talk about this right now and I often turned you away with a cold shoulder. It wasn't anything you had done... as a matter of fact if there is anyone in this world that would understand me (or at least try) it is you. So I am sorry.
But that brings me to an important, selfish, point. We always ask everyone "How are you?" And sometimes we even want to know! I don't want to tell people how I am. How I really am is exhausted, not just "worked hard feeling a little tired", I mean bone weary, brain numbing exhausted. I don't know whether to yell, scream, cry or fall asleep. I hurt, everyday, there are shooting pains going through me that feel almost like constant bug stings. My body does not want to cooperate, sometimes my knees won't bend or I have no strength to hold a coffee cup. I can't make it through the day without a handful of codeine and I don't want to be that dependant on anything! And I'm scared. This is the worst I have felt in a very long time... and I am scared I'm not going to get past this. And I'm angry. I'm a good person, I volunteer, I help my community, I give and I want to be involved. And I can't be!! By the end of a work week there is NOTHING left!! So if you ask me how I am... I'm going to say "I'm fine". Sometimes because I just really want to be; sometimes because if I say how I really am I'm going to lose it but mostly because I am trying to stay as positive as I can. So I'm Fine... I know you know I'm not really, but let me have this one okay? Don't pry, don't try to pull it out of me, just let me be Fine.
And of course, life goes on. I have a child with moderate Fetal Alcohol Spectrum Disorder (FASD) who needs constant attention and has many of her own struggles (but that's a blog for another day). And my husband severely injured his ankle so MY main care giver is out of commission. So I have a few more responsibilities than normal, more work to do.
But I have to believe that this too shall pass. I have to believe that Dr. Tompkins is going to come up with something, that we will put our finger on something that is going to be the answer to getting me better. So I trudge through all the things she has taught me. I keep following my sleeping patterns, eating patterns, resting as needed. I keep getting those damn blood tests that are always less than positive but we can't seem to get this darn body to absorb vitamins right now. Some days I just want to throw my hands in the air and just stop doing everything but what if? What if tomorrow is the day that all this work pans out? So I will keep trying and I will keep telling you how I am doing in the hopes that something I'm doing is going to help you. Every story is different... every journey is different. But sometimes there are similarities... and sometimes we triumph!!
OK, now I'm the one bawling! Ours is a bond that needs no apologies, explainations or even words - we undeniably "get" each other, every day, whatever is going on. And it is OK to be mad, sad, disappointed... with ourselves or even each other - emotions, whether mental or physical are REAL and are meant to be felt - and in the balance we've built together, the GOOD (honestly, the AMAZING) will always follow the bad. And underneath it all, we have love, patience, respect - ALWAYS.
ReplyDeleteMy beautiful sister, I love you with all my heart and soul.
xoxox Ang
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