I haven’t posted a blog in a long time because I was going through a deep depression. It was difficult trying to seem normal on the outside and wanting to curl up and disappear on the inside. But something just hit me one day (or maybe my medication was kicking in…lol) and I realized that eventhough I have had a life changing turn of events this past year, I still have a husband whom adores me and loves me despite my body changing and even when he has to come home to a sick wife every day. I have two beautiful daughters who think I am the coolest and silliest mom ever. They think I am better than all the other moms in the world. I have a family who would do anything to find a cure for me if they could and who support me all the way. So for me, going to my dark depression isn’t an option anymore. It’s not fair to the people that I love and care about more than anything in this world. I know my triggers that set me into a funk, so I just make a choice. I can be even more miserable than my disease already allows or I can fight. Fight to give what good is left of me to the ones who matter. I want to try different things and see places I have never seen before and make memories. Some of the best memories are made in the comfort of my home with my family. I’m not saying I am not going to still go through a rollercoaster of emotions. It’s a given having Limb Girdle Muscular Dystrophy 2J. I’m just not going to let the negative emotions move in. I am a fighter and always have been. So as Rare Disease Awareness Day passes me by, I know that I am ready to be strong again and set an example for others.
I was offered a temporary receptionist job that I gratefully took to help out with finances since I am still waiting for my disability to be approved. I was concerned whether or not I was going to be able to successfully complete all of the administrative tasks that were going to be asked of me, but I was excited at the thought of trying to work again!
The first day was eye-opening to me. All the little tasks such as filing, standing to make multiple copies,taking staples out of documents, stapling documents, writing and walking from office to office were insanely difficult for me to do. Bending down to file papers was extremely difficult because I had to pull myself up afterwards. I prayed that nobody watched me as I figured out how to pull myself into an upright position. By the time I was done with my first day I was exhausted and in more pain than I normally am. I went home and rested in my bed until we had to go to my daughters 4H meeting. I push myself to physically get into the car and go to the meeting. When everyone stood to say the Pledge, I stayed seated for the first time in my life. I physically couldn’t get up. I felt guilty because saying the Pledge is something I take pride in. But I knew that it was too much for me to get up. When the meeting was over I tried to stand up and failed at my first attempt so I sat down and acted as if I needed to get something out of my purse. Then I situated myself and a way that I knew that I would be able to get up and I did successfully, but I looked awkward. I went home and crashed without having to take a sleeping pill.
On my second day of work I was in pain but decided to push through it. Day 2 was the same kind of work and I was walking like an unbalanced toddler. The pain was unreal and getting worse. After getting through my work day, I decided to come home and clean up a little bit and make dinner. I wanted to have one evening where we didn’t discuss my pain or my disease. I wanted one “normal” night! After pushing myself to clean up and make dinner, all I could do was go lay down. My body was done! The pain was so overwhelming that I just sat there and cried big tears! I usually try to hide my tears from my husband and my children, but there was no hiding these tears on this night. My husband was beside himself and didn’t know what to do or how to help me. That night I must have only gotten a combined 4 hours of sleep. No pain medicine was touching my pain and my body was completely exhausted. I couldn’t help but think that everything that I did the past 2 days was not even that strenuous and yet my body felt as if I had been hit by a truck. Unfortunately I had to let my employer know that I wouldn’t be able to come back to work because it was too much for my body. She was extremely understanding and I was disappointed that I had to leave a job that I actually enjoyed. For whatever reason my disease is spiraling out of control. I have made an appointment with my neurologist to try to figure out some sort of pain management. I am hopeful that she can help me obtain some sort of quality of life! Because right now I am not living, I’m merely surviving!