10 year CFS/ME Anniversary

Some time this month, 10 years ago, I'm not exactly sure of the day, I was rushed to the hospital with what Doctors assumed was a heart attack. I had been really weak for a couple of months, and just thought it was the flu. I finally had enough energy to go grocery shopping with my husband and made it part way through the store when it became almost impossible to move. I was exhausted! My chest hurt and that scared me. My husband got me into the car and rushed me over to the Urgent Care across the street. Its funny when you walk into those places you are normally checked in, give them your info and then go sit and wait. I walked in and the nurse took one look at me and said "Honey what hurts" I said something along the lines of "my chest, everything... so tired" I dont think I filled out any paperwork that day, they whisked me into a room and hooked me up to every machine they had, there were at least 4 doctors in the room and one was calling 911.



Before I knew it I was rushed into an ambulance and on the way to the hospital, I was coherent enough to laugh when they asked me if I wanted them to turn on the lights and go fast. It seemed funny at the time but I know now they were trying to judge how strong I was. They turned on the lights. I was rushed into the cardiac wing of the ER. Cardiac ICUs and ERs have a very unique smell to them. One I grew to hate while my dad was sick.
It didnt hit me until I smelled that how serious my predicament was. I had 3 small children, surely this couldn't be happening to me! You see, my dad was sick for a really long time. He was on the heart transplant list and passed away before a heart became available. He was only 56. I began trying to remember all the terms I learned then and listened for the doctors around me to say anything I recognized to try to gauge how bad this really was.




But I was only 30 and a woman and was relatively healthy, albeit not quite at my goal weight but not obese either. A nurse came in and asked if I was crying because of the pain or crying because I was scared. Scared I answered, really scared. She assured me I did the right thing and was in the very best place I could be and she really kind eyes, nurses should always have kind eyes. I know I drifted in and out while I was there, the pain was starting to ease but it had drained what little energy I had left.

They started running more tests, blood work, IVs, a CT... you name it. The good news? My heart was fine! In fact I have a "juvenile heart" (which I use as my excuse when I act immature). The bad news? They couldn't tell me what was wrong. It might yet be very serious they said. "Not out of the woods yet" I heard the Dr say. They reluctantly let me go several hours later after I promised to see a cardiologist the next week. With my family history I was monitored very carefully for more than a year, they were never able to explain why I presented with those symptoms though.



So began my journey, I was a pin cushion every time I went to a Dr. They took more blood and tried to pinpoint what was happening with my body I had numerous EKGs more CT scans and anything else they think of. I was told it was anything from a virus to a disease to sudden depression No one had any answers and it was incredibly frustrating. Finally I changed doctors and she went through my history with me. Then started poking at me "Does your elbow hurt? Does your neck hurt right here? How about your knee?" Yes, they all hurt sometimes badly, sometimes just sort of vaguely hurting but always there was pain, I had been living with it so long I just sort of assumed that was my normal. Hopeful I might finally have an answer I asked what she thought was going on. She handed me a map like this one http://www.fibromyalgia-store.com/assets/18pointstenderness-xlg.jpg and said "You have Fibromyalgia"



Well then, I didn't see that one coming. She handed me another brochure and said "Start taking these pills" Now Im not really a fan of medication. I take it when I need it but I could never be a drug addict. I'm a bit of a control freak (those of you who know me are thinking "NO! Really??) and I don't like the feeling of not being in control of my body. I took the pills and went home to process all of this information. The kids were at a friends house and when my husband came home I was just sitting on the stairs staring at the door. I just wasn't all there, you know? It scared my husband enough that he called the doctor and told them this wasn't going to work. I threw that first drug in the trash and called my Dr the next day. Since that first day I have been through more medications, more treatments and a few Doctors that didn't believe in fibromyalgia at all. Trust me, its real. They tacked on Chronic Fatigue a couple of years later. Chronic fatigue is funny, it sounds like you would sleep a lot, when in fact its the opposite, you rarely sleep. Insomnia has become a constant companion. I am so grateful for the internet because late night TV really sucks, I spend a lot of time here at my desk typing away on twitter or facebook when I should be sleeping.



I'm actually very lucky, I still function pretty normally. I get tired faster than I used to. I get restless though and have a hard time sitting still which can be a real problem when you're at a concert or a movie or just out with friends. I often make excuses about going to the bathroom, I'm not really sure which is worse, explaining that I have this and cant sit still or people who don't know me thinking I have a bladder infection or something. Its easier to go with the bathroom defense. I am hyper sensitive to touch, sound and even smells... all of which seem strange to me. I think the dreaded "Fibro Fog" is the worst though, I am an intelligent person, some days though you wouldn't know it. I lose my train of thought or go off on a "bunny trail" that doesn't make sense to anyone else but me. I often completely lose what I was thinking and cant remember the most basic of things. Often in my posts there will be a missing word or I will put the same word twice and not catch it. Post Its and my note apps on my phone have become my saving grace.



Today I do in fact take some medications, mostly just at night to at least give a chance at sleeping and pain medication because it has gotten a little worse through the years. I do Yoga when I can and am learning to rest more often and listen to my body. I have never "done still" very well. I have always been the first one for a road trip or a concert or hiking or whatever. I still do a lot of that stuff, just at a different pace. I still tend to go until I collapse because that's my personality but I'm learning. I have always said that God doesn't whisper to me, he thwacks me on the knuckles with a ruler to get my attention. This is sort of the same thing. If I don't listen, I get the ruler treatment and I am down for the count. I am learning, it just takes me awhile.

10 years is a long time, but I'm ok. I have Hope, I have Faith, and I have my family and friends who love me through any attack I have and are incredibly understanding when I have to say "I just cant today". I know that I am so fortunate to have the support that I do and I dont ever take them for granted! They are truly amazing and I am blessed to have each of them, each of you, in my life. I love you all and appreciate you more than you will ever know. Thank you.