In 1991 I was diagnosed with Gestational Diabetes. I kept it under control with a very strict diet and exercise program. Things rocked on and I had some problems here and there with other things, but for the most part I was good. I didn’t have time to be sick either as I had 5 kids, a home and a husband that kept me going. The one thing that I really loved was walking. I would put on my shoes and take off. When those endorphins kicked in I was a happy walker.
Sometime in the early years of 2000 I had kidney surgery. That put me down but I got back up. Up and away is how I put it because soon after while laying in that hospital bed I vowed that somehow if I survived I was going to be happy. I did get back up and I did get away. I made the decision to end my marriage and I made the decision that I was going to stand up and not be walked on. I left and didn’t look back for the most part.
In 2007-2008 I began to really start to feel ill. I hurt all the time all over my body. I figured that since I was working at manual labor jobs that was what was wrong with me. I worked hard and I kept going. Ace Bandages became my friend. I wore those suckers out. Even when I broke my foot in 3 places I still worked hard. But as always I still hurt. Unexplainable aches and pains. They didn’t keep me down for long. I got right back up. I had kids and they needed a roof over their heads, food in their stomachs and they needed a mom to help provide that. I worked some pretty bad jobs. I did what I had to do. But I was slowly slowing down. I would go to bed exhausted and wake up exhausted. I played it off that I was working hard and I did work hard. I would catch colds and have flu like symptoms often. I attributed that to allergies.
Weekends or days off I would sleep. I could fall asleep and sleep all day and by dark thirty I was yawning and ready to go back to bed. I still made an effort to be this happy go lucky girl but my heart wasn’t in it all the time. How do you smile when your hurting. Doctors told me that all my tests were normal. Everyone has aches and pains as they get older, and I knew that to be true. I struggled along developing high blood pressure, and my diabetes now required medication even tho I was still working long hours and constantly on the go. Still I couldn’t shake this exhaustion that I was feeling. It was even more than just exhaustion. It was a bone weary kick you in the ass tiredness. But I had to push on. I had no choice.
2011-2012 I had to have surgery of a major kind. I had developed Vascular disease. Too many cheeseburgers and fried foods, red meats and you name it and I slowly began to lose my ability to walk. I first noticed it at work one day. I was cleaning cabins and cooking. I noticed that after each bed that I made I had to sit down for a few minutes. When it came time to take out the trash I would have to stop and wait for the pains in my legs to subside so I could take a few more steps. So this exhaustion was simply chalked up to diabetes and vascular disease.
But with every germ that came down the germ highway I caught it. I ached like I had the flu. I had unexplained fevers, I had a hard time waking up, in a foggy fog that no matter how much coffee I drank could not shake. I had to move several times in those years, and while I loved the challenge of a new place to decorate for owners to enjoy I began to lose interest in it. I was too tired to walk thru and plan, pick out paint colors and tile and light and faucet fixtures. All I wanted was a place to curl up and lay down and stop hurting and please oh please allow me a cat nap. A few minutes to get back enough energy to get back up.
After the surgery I did feel a lot better. I became a little more active but I still had unexplained fevers, I caught the flu several times, I could have made a fortune just off the stock of Kleenex alone. Doctor after Doctor gave me the same old song and dance. I got to where I just didn’t want to make plans for my days off. My relationships with friends and family began to suffer. No one understood when I said that I was tired, or that I didn’t feel well or that I didn’t want to go some place.
My routine was to get up around 7 and stumble to the coffee pot, drink a couple of cups while I surfed the internet. Around 8 I would take my insulin (Yeah I had deteriorated there too) and eat some breakfast. Around 10:00 I would lay down on the sofa and sleep a couple of hours. I would get up and have lunch. Pick up my house, do what I needed to do for the day, lay back down and wake up in time for dinner. By the time that was over I was ready for a shower and go back to bed. 4 out of 7 days this was my routine. Friends and family would stop by inviting me to go some place. Sometimes I did and sometimes I didn’t. Mostly I just wanted to sleep.
Now let’s add some depression in there along with a little or a lot of anxiety to the equation. Let’s also add a little or a lot of anger in there too. “You have to snap out of this” “You gotta pull yourself together” “You can’t keep doing this”…. I would cry but force myself to work thru the pain. I joined committees, I made efforts to visit my family and do things, I volunteered at fund raisers and events, I started to date again. One night at a movie my date woke me up…. another time he and I went out to eat and I picked the food on my plate and asked for a to go box. Another time I went to his house to watch a movie and fell asleep on the bed. He covered me with a blanket and the next morning he took me home. So much for dating.
And those damn fevers, the sore tender and inflamed body parts were to the point that I was a mess. I remember laying on my friend Tena’s couch and falling asleep even tho I only lived across the hall. I couldn’t get warm or I would sweat like a dog. No one understood.
“You need to lose weight and exercise more” my sister would tell me. “I don’t understand since you were fine last weekend”. “You just need to get off of the depression meds, they are what is making you feel bad.” I could explain my heart out but her mind was made up. It is all in my head and I needed to work on it. “Don’t listen to those doctors, they just want to pump you up with more pills”.
2014 I had my left kidney removed. I moved in with my sons. I slept for hours and hours and hours. My wardrobe then as it is today is loose gowns and robes. My skin became more sensitive. I had pins and needles it felt like through out my body. I had times where I could have nothing touching me. Not even water from the shower. Not even a night gown or a sheet, nothing. I would just sit by my bed all night doing nothing. Sometimes I would surf the internet. Most nights I just couldn’t think straight enough to even move a little bit because if I moved the pain might ricochet thru my body causing more pain.
In 2015 I had enough. I had a new primary care doctor. I didn’t care for her very much but she told me that I was experiencing Fibromyalgia symptoms. Oh Yeah Right… The head disease. The one that they put a label on you when they don’t know what is wrong with you. Well alrighty then. Time for a new doctor. I wasn’t going to tell this new doctor what that other doctor told me. I didn’t want to give her any ideas. But no way was she giving me anything for pain either. So she sent me to pain management. Good Old Pain Management took one look at me and said. “I think that you have Fibromyalgia”. I was pissed but what was I going to do? Change doctors every time that I didn’t like what they were saying? I told him too everything that I had heard and yeah that mostly came from my sister about it not being real, that it is all in my head and so forth. He said he didn’t know where I got my information but it was as real as any other major illness. He could treat me with Cymbalta or Lyrica or that I could just deal with it. He pulled no punches but as he walked out of the room he looked back at me and said… “Do you have a computer?” I said yes and he said “I think that you need to do some research”
I chose the Lyrica and in 2 weeks I was feeling much better. My mood improved but I still had pain and I still had fevers and I still had the pain of sensitive skin and hot needles and pins poking at me, but not as bad. I stayed on it for a long while until the pain really just kept getting worse. I made an appointment with another pain management doctor because my insurance had changed and they were not taking my new insurance.
I can function so much better but I still have these flare ups and when I get them I just cannot do anything. I seriously can’t hardly move, get out of bed, take a shower, or fix myself anything to eat and if I do then by the time that I fix it I don’t want it. I have times when I am totally unprepared for the flare ups. I can be fine one minute and down and out the next.
Right now I am having a flare up. I was out with my kids this weekend and I knew that I was over doing things but I needed out of the house. It started last night. Most of the day I have had pain in my neck and shoulders. Tomorrow it will move down to my arms and wrists.
If I can manage it then tomorrow I will continue this blog post. There is so much more that I want to cover… I have just hit the tip of the ice burg. Stay continued…. for now I am going to try and sleep…. Until next time…….