Victoria’s Story – What is IT?

Submitted by Victoria on January 28th, 2005

I used to be many things; overachiever, strong willed, social butterfly, active, perfectionist, creative, quick witted with a dry sense of humor, average intelligence but willing to work hard and adventurous. I am a daughter, mother, sister, aunt, and friend. I was once a teacher too.

I no longer work. I pray that I have enough energy to be able to mother my son and carry on throughout the day because he deserves that. The most mortifying time with him was when he was about three. He has always been such a conscientious, rule following, little guy. He wanted to walk our tiny Maltese dog. I was too tired to go with him. The dog hated to walk alone with him so I sent him out to the yard with a baggy of turkey and said to walk the dog in our yard. I go to check on him and he, the dog and turkey were gone. They were no where. I searched everywhere and ended up in my front yard screaming his name in an utter panic. He came from around the corner of the street AND across the street AND way down the street. He was with a woman I did not know who had asked him to take her to his mommy. I cried and held him. My friends found out about this and talked about what a horrible mother I was. I was soooo tired I could not think straight when I had sent him out to the yard to play. I love my son.

I hate the words tired and fatigued. They do not explain what I feel. These states I get into are not tired or fatigued. There is no way to explain what I feel. No correct words can describe the inner inability to talk, move, think and all I can say is I am sooo tired. But sleep does not come. I just sit (sometimes lie) there with the TV on though I am not watching or listening. Other times the sleep comes and I feel like I am on a crazy drug.
I am a changed woman. My quick wit and sense of humor is slowly ebbing away like a cloud in a strong wind. I do not think like I used to be able to do. I do not get simple jokes. At times I can barely talk. I sound drunk. So I avoid talking to others and I won’t look into people’s eyes at these times because I do not feel myself. This is the same girl that embarrassed an ex-boyfriend for talking to strangers (as he put it) because I talked to everyone and often would not shut up.

Friends have come accustomed to the fact that they may not get a return phone call for some time from me. Some friends have faded away just as the essence of me has faded away. Some friends I have decided to do with out because if I hear the words, “I get forgetful and tired too. It is normal”. I get an inner rage when I hear condescending words like that. As if I don’t know what normal forgetfulness is about? As if my reality and day to day life is normal? I even get a touch of pain, panic, and anger when I see the retired, widowed ladies on my street mowing their own lawns. I used to mow my own lawn, garden, dig holes, clean the house, get my nails done, spend fun time with my child and have a clean house all in one day! Now mowing the lawn becomes a two or three day chore with that being my only focus; most of the time it is just a very shaggy lawn. Blow drying my hair straight is enough to exhaust me for the day so my hair looks shaggy too.

I quit my job. It was hard to do that. I could not keep up with the demands. The thought of going up the stairs to the different classrooms was near impossible. Forgetting mid sentence, during lectures, what I was talking about was becoming too common. My paper work was never correct even after I redid it several times. I was worried that people thought I was on drugs. I missed so many days because I was so tired after showering that I had no energy to dress myself. I would lie in bed with towels around me and mentally beat myself up for being weak and useless. When I would force myself to go to work, which became a daily occurrence, then I would get tremors and eye tics. Oh and the number reversals suck. I can not copy numbers down like a normal person can. I have to constantly recheck dates, numbers, etc. Spelling words has always been somewhat of a challenge for me but I forgot if the two letters in my last name were “sc” or “cs” when I was recopying my sons name on his birthday invitation.

My breathing becomes slow when I push myself to do things like laundry. I recall holding my small, furry rodents as a child and was often with them when they died of old age. I would hold them as they died so they would not be alone in their death. They would do the same type of labored breathing I do when I HAVE to lay down and get my bearings.

I am only 37. This is not right or fair and is definitely not in my mind, as some friends and medical professionals would like to infer. The worst episode was when I went to my primary doctor feeling like I was about to die at any moment. At that time I did not know I had tremors. She saw my tremors and I was too sick to know that I trembling and she yelled in my face, “why are you shaking”? “How much do you drink”? “Are you withdrawing from alcohol”? She asked all these questions in rapid fire succession to a brain that could barely process anything. I was stunned and mumbling. It was so hard to think and talk. I may have cried I do not recall. I may have been too tired to even cry. This was my first visit with her. I had left my last very elderly doctor because I was not anemic so in his mind I was just tired. According to him nothing was wrong with me. I have not returned to that female doctor who yelled in my face. In part I am ashamed because I was weak again and allowed her to scream at me like that and I did nothing to defend myself against this.

For me this all began 7 years ago when I was pregnant. I was tested for the pregnancy induced diabetes which I did not have. My physical problems have occurred off and on over the years to varying degrees. But as it got worse I had to quit my job (about two years ago) hoping things would get better. My cognitive behavioral therapist believes I am physical sick. I went to her because I bought into the theory that I am not sick but rather depressed; WHICH I AM NOT, although I do not like the fact that I feel so horrible and never know when “IT“ will hit. She said she is of no use to me because she can not help me change “IT” because “IT” is medical.

I get anxious when I have a commitment because I never know if “IT” will hit me or not. Will I be able to move, talk and function? Will I even remember my commitment (I have forgotten to attend vet and doctor appointments, children’s birthday parties)? I have moments when I feel pretty good but those are becoming less and less. My physical state has slowly declined over the years. About a month ago I had 4 or 5 days in a row that were great. I felt like myself again. I thought what ever had come and gotten me had just left like it had came. But “IT” came back. Those few days were like heaven on earth. I completed household chores and thoughts about going out and traveling with my son danced through my head. I returned phone calls. I felt back in the saddle; which reminds me figurative language such as “back in the saddle” confuses me when “IT” hits me. I get the wording all wrong.

I feel okay in the morning hours and get things completed like laundry, food shopping etc.; normal everyday things that females at my age can do with no problem, no second thought, no preplanning or anxiety about completing them. Afternoon I try to rest which is really hard for me to do because I like to get things done. I rest so my son can have my energy and concentration for when he gets home from school. I love him so much and feel awful that he has such a tired mommy.

They have found three small nodules on my thyroid and lots of histamine in my urine. Blood work is fine which also reminds me that I hate it when I get a call from the receptionists in that sing-song voice, “we got your blood work back and everything is fine”. Then why, why, why can I barely function? Why does “IT” keep happening?
Bad days also include forgetting why I went into a room or to a cabinet so while cooking I go to get a dish and I get to the spot and forget why I am at that cabinet. I drop things and make a bigger mess that I have no energy to clean. I bang my knees on things. I should have stayed in bed; days come and go.

I want “IT” to get resolved and for the old me to come back. I have switched endos and will see a neurologist. All these appointments take so long to get. I will go to the Cleveland Clinic if my biggest fear happens and all these other doctors tell me everything is fine; that “IT” is just in my head. Maybe then Cleveland Clinic can prod me some more and discover what “IT” is.

I am blessed by wonderful family, a dynamic son and a few good friends. I have many, many blessings. My mom understands, my dad understands and my best friend understands. I am not alone.

My mom noted that one day she saw me in the morning she saw that old sparkle I get in my eyes but by dinner that evening the sparkle was gone. “IT” came in the afternoon and “IT” made me so tired I was non-functioning again. “It” even took my sparkle.