Fibromyalgia

A diagnosis that means I struggle every single day to do the things that most people take for granted and do without a second thought. First thing that comes to mind is NOT FAIR. I have had to change with this awful disease and there are some days that I dont like myself very much and I resent the fact that I have to say no to things that I want to do.

I used to manage having a full time job, being a mom and caring for my home. At the end of the day I would be exhausted and my body felt like hell, but I managed. My floors were clean, laundry done, put away, house cleaned, dinner prepared and cleaned up, dinner started for the next day, clothes out for the next day etc. I was able to manage doing all this, with a ton of pain when I laid down my head at night to the point of tears, but it was done and I felt like I accomplished all my goals for the day.

My ex husband then did not understand why I was in so much pain and why I complained about having to do all this myself. To him, it was what a woman does and what a good wife and mother should want to do for their family. I did want to do those things and be a good wife and mother, and I did manage to get them done at the expense of my own quality of life being in the toilet every single day. I was so exhausted and my happiness was nonexistent.

Today I have someone who understands and if I need a nap, I take one, if I cannot do the laundry or clean up, he will do it. If I sleep an entire day away, it is ok. He is the most wonderful, kind, caring man, and I am so lucky to have him. I am happier than I have ever been most days. It isnt until I look around me and see all the things that I cant accomplish anymore that it gets to me. I rarely sweep the floors, mop or vacuum, those chores in and of themselves will put me down for days. Do I try, yes, occasionally; I mean who else is going to do it?? I cannot expect this wonderful man of mine to pick up my slack everyday all the time. That is unfair to him.

Its like thisIf I am having a good day I dont want to do those things that are going to put me in pain and on the days that I am in pain, I cannot do these things. What do I do?

I wish I could put into words the way that I feel. I am trapped inside this body that hates me. I want to be able to exercise. When I do, I feel so much better and I have more good daysso its a no-brainer, right, exercise makes you feel better so make sure you get plenty of exercise, right? Yea, if only it was that easy. You get yourself into a good exercise routine and then the chronic fatigue slides in and pulls the rug out from underneath you. When you are too tired to exercise, you sleep instead and you never really sleep because of the pain so you are exhausted and unable to exercise and YUP you are right back to feeling lousy again. Your weight creeps back up, your clothes dont fit and here you are again unable to do the things that the person that sits right next to you is able to do with ease. Now, you are frustrated, feel like crying because it takes every bit of energy you have just to make it through the workday. I take my pain medication at night and in the morning. I do not take it during the day because I need a clear mind for work, but by noon my body is on fire and I am not able to focus anyway because I am constantly moving and stretching and cracking my joints just to relieve some of the pressure/stiffness/pain. Then I go home to my family, and I am so happy to go home to them and hear about their day and have a meal together and maybe fit in a few chores if my body allows. There are times I cannot even cook dinner without a nap first and if I pull a load of laundry out of the dryer to fold it, that is all the energy I have. I can sleep for 15 hours straight and wake tired, be up for a couple hours and go back down for another 10-15 hours. I dont allow myself to do this often but there are times when I have no choice, my body makes the decision for me and just shuts down.

At night my sleep cycle is broken a minimum of 3 times per night. That is a good night. I wake adjusting my body, cracking my joints, with my body hurting so bad I cry in my sleep. The medication helps but I am NEVER pain free. The closest I come to being pain free is when I get out of being in cold water or while I am in cold water for a period of time. I feel human and it feels GREAT! Without medication I would have no quality of life which leads me to the next point. I am dependent on medications. Without them I do not feel like I would be able to hold a job or function even close to my level of function with them. Does that mean that I am an addict? I have never let anything control me. I do not have an addictive personality, and I have always been in control of what I do. I have had a few experiences with not having the Savella and one time I went 5 days without it. By day five I was a mess. It was not pretty, and I am positive I was going through withdrawal. I was so sick I couldnt barely hold my head up, nausea,vomiting, shock sensations in my hands and feet, sweating etc. It was horrible. I have never felt like that before and I dont ever want to feel like that again. Now, I know when and if I go off a med, I will do it slowly with my doctor and it was not the smartest thing to do to try and take myself off something I have been on for such a long time, but I am thick headed, the medication is expensive, so I thought I could get off it on my own. I will not try that again. Am I thick headed? Yes, stupid no.

I dont know what is next for me, but I do want the best quality of life I can have with this illness. I have had a hard time accepting that this is my life forever. Treatment is expensive and my health insurance coverage is low grade, but I am open to exploring treatments until I find the best one for me. I just want to look back at my life when I am old and say I LIVED. Not I existed.