Pain, Weakness, and Stupidity!

 

     Today was a simple day. I had a test at school at about 3pm. After that I had a little shopping I had to do. After that I needed to go wash my car and put gas in the car, and top off the oil. Then dinner and a meeting, fellowship and home to work on homework. Simple day right? WRONG!

     Start out with the fact I could not sleep worth anything. I tossed and turned all night. I had hot flashes, and had to pee a million times thanks to swelling in my legs and feet. I get up (or try to) and I fall face first into the closet! (Actually that was yesterday I fell but my days and nights are odd so I call it today). Anyway, I get up and every single body part hurts. When I say every single part I mean it. From the head to feet, from side to side...even my hair hurt. (I am guessing it was my scalp and the hair is the sensation). I slowly got dressed which took over an hour because lifting my arms to put on deodorant was torture, the clothing on my body made me cry...bending over to put on my socks and shoes was so hard that took another 30 minutes. 

     Finally I am ready to go take my test. I get to the door and found that I had already become so weak and tired I could hardly walk. Going up one flight of stairs was torture! After another 10 minutes of walking out the door to my car, I find I can not lift my leg high enough to get into my truck. (I have a 2001 Dodge Durango). I ended up having to put my knee up on the running board of the truck, then get in. Driving was not easy as the weakness was increasing. I found it took both hands to control a wheel it normally takes one hand to control, and even then I was swerving like I was drunk! I wonder what that would be considered? DUI? DWI? Reckless driving? I will actually look into that and see what can be done if I was to get pulled over if this ever happens again.

     I get to the school and park near the door to go into Disability Services to take my Law test. It is about 40 feet maximum from the truck to the office...it took me another 15 minutes to walk that far, and I was dragging, wheezing, dizzy and nauseated. I sat in the chairs and took my test, and amazingly I think I passed it even with brain fog and a major migraine coming on. I should note I did take two Vicodin as soon as I sat down in the testing room which I think saved the test. Yes it kicked in mid test and I was pretty much stoned out of my gourd, but the pain was at least semi tolerable enough to function. 

     When I was done with the test, I walked into another hall on campus to go to the school's convenience store. I have a meal plan type deal, and I needed a few things. Standing there with my items in line I found my grip starting to falter. Part of it was weakness, the other part is the pain.  Carrying the bags and walking to the car I nearly passed out. People were looking at me funny, and one person asked me if I was okay. I said I think so, and thanked them for asking and kept walking. 

     Now, all of this seems like nothing to most people. Take away the Vasculitis I have, and the pain and 90% of people would be energetic (maybe kind of tired from the test but not exhausted!) To people without an illness this is a normal day, and most people can do this in a couple of hours and be ready to do a million more things. For me, and others like me...just the things I did to this point had me struggling to make it. Being on Chemotherapy drugs, and high dose Prednisone can take a lot out of a person, and you add illness onto it it doubles the debilitating capacity! This is why I implore anyone who has someone in their lives who has an illness, whether it is visible or invisible...try to understand. If someone says they plan to see you, and suddenly they call and say they can't make it believe them. Do not take it personally, I can promise you that it is not a personal thing! I know that I could have been told I needed to meet up with someone and I would get a million dollars, and I would have had to say I am sorry I can't.

     I won't go into detail about the rest of the day. It involved going to put gas in the truck, checking fluid and putting oil in, locking my keys in the engine compartment of the truck, running into a State Patrol officer, asking him to help me unlock my truck so I could get my keys, which he did. I then went to the car wash, was told I had too much mud in the tire areas and I'd be charged more, so I left and went to whale of a wash and with my last energy I went and power blasted the underside of the truck. Went back to the car wash, went to a meeting and fellowship, and planned to hang out with my friends (I will call them C.M. & M.A.). I got a few blocks away and I almost crashed the truck into the underpass wall because my body gave out completely. I had hit the end of my "spoons." Please read about The Spoon Theory. It is worth the read and it might help you understand, or help you help others understand you.

     So I am home. I barely made it. I laid down and rested, and I will have to see just ow many bits of energy I receive resting. Will I have enough to go to my two appointments and class tomorrow? I do not know. I have no choice. I have to be there. So tomorrow I am hoping for a spontaneous burst of health. Anyway, I seem to be whining in this post, but that is not my intention. I really do want to help you understand people with illnesses and pain. The end of the day I was proud of myself that I did not give up today. I did what I could, as best as I could and that is an amazing thing for me. Granted I Will have to be more careful not to push it too far again...losing control of my car would have been horrible! I need to learn my limits, but that comes in time. For now I am proud of what I have done, and hope hope hope for a better tomorrow. 

For information on my disease, Microscopic Polyangiitis, please visit the Vasculitis Foundation.

To follow my updates, join my Facebook Page: Tamara's Journey of Hope.

For those without Facebook, I am starting a CaringBridge website: Tamara Wagner

For Video Updates on YouTube: Tamara's YouTube

If you have any questions, concerns, or want me to discuss a topic on future blogs feel free to submit them in a comment or email and I will respond asap! :)