13 January 2013

The Me I Used to Be

My life slowly began changing a few years ago, so slowly that it took time for me to even notice. My mind was the first thing I remember worrying about. Being a blonde all my life, maybe this won't come as a shock to some, but it was very disturbing to me. I didn't know what was happening to me, but I found that in regular conversation or while teaching my little ducklings, I would have trouble coming up with the simplest words. I'm not talking about college level vocabulary here. My ducklings are six years old. I'm talking about words like "desk" or "book". I'd be in the middle of a sentence and just stop because the word I needed to say just wasn't there. For instance, during class I would say, "Okay class, when you finish that paper, please put it on my ..." I would stop and be completely silent as my mind searched for the word I needed. By this time, one or two of my little lovelies would have shouted out the word I needed. I was grateful I was in a position where I could rely on six year olds to help me without anyone else noticing. But I was also scared because I knew something wasn't right, but I didn't know what it was or what to do about it. I don't really know what came next. I just remember when it all kind of came together and I knew each little thing that was happening to me must be part of one big thing. Sleep was a big problem. I guess I've always had trouble with sleep off and on throughout my life. I suffer from Restless Leg Syndrome which makes my legs jerk and kick and keeps me (and my poor husband) awake. But a few years ago, it started to get worse. My husband would tell me that I stopped breathing during sleep and that I snored (so embarrassing)! I woke up quite often in the middle of the night. Now it's so bad that I literally have not had a good night's sleep in years. I fall asleep easily, but within 2-3 hours I wake up. I don't mean like when you turn over and are aware of things and then fall right back to sleep. I mean I'm wide awake and can't get back to sleep for maybe a half hour to an hour or two. This happen every 2-3 hours until it's time to get up in the morning. I have great difficulty waking up for work and basically never feel rested. I am so tired mentally and physically most of the time. My body craves restful sleep, but I just can't get it. I did go for a sleep study a few years ago, but of course, I didn't sleep well enough for the dr. to get the data he needed. I never went into the stage of deep sleep. Well gee, let's think about this. I don't sleep well at all in the comfort of my own home, so to find out why, I'm sent to a facility that reminded me of a hospital, hooked up to wires from head to toe (not even exaggerating), and told to go to sleep, knowing a stranger's at a desk watching me. Now add to that the fact that when I needed to use the restroom, said stranger had to come unhook the wires and hook them up again. But wait, there's more. We must add to the scenario the man in the next room who is also being monitored, but who had the ability to actually sleep. How do I know this you may be thinking? I know because I could hear him snoring all night! Needless to say, the sleep study was a big fat waste of time and money. So besides the brain not working and never getting a good night's sleep and always feeling tired, I started having aches and pains. They were always random and would come and go, and they usually were tolerable. It was annoying and bothersome because it just didn't make sense. Usually when something hurts, you know why. If your ankle hurts, you think back and remember landing on your foot the wrong way earlier that day. If your calves hurt, you think, "Oh, that's because I went for a jog yesterday." My aches and pains though had no reason or rhyme to them. Over time, I would hurt more often and it would be more painful. My legs would hurt so bad that I was sure I had bone cancer. So again I went to the dr. who sent me for x-rays and couldn't find a legitimate reason for my pain. Fortunately for me, the pain wasn't constant, but when it hurt, it was excruciating. Over the counter meds barely took the edge off. I was so frustrated as I thought, "How can someone be in this much pain and be told nothing's wrong with them?" I was getting depressed and worried and doing less and less of the things I used to do. I used to take pride in taking care of my home, but I just became too tired or I was in too much pain to clean or decorate. I used to love doing projects, but I pretty much stopped. I used to love shopping, but I didn't have the stamina to do it anymore. The last thing I noticed before I pretty much diagnosed myself was that I kept thinking I was coming down with the flu. I would start feeling the typical symptoms of body aches, chills, and exhaustion, but then I'd be better the next day. It never went into the full blown flu, but it kept happening every week. At this point, I started thinking that all of these symptoms I'd been suffering from for years must be part of one big thing. Nothing else made sense and the dr. wasn't able to find reasons for any of my singular symptoms. So I researched and went to the dr. and asked her if she thought I could possibly have Fibromyalgia. She agreed that it could be Fibro, and did blood work to rule out anything else, since there are no tests for Fibro. A few days later, I got a call from my dr. saying she was referring me to a Rheumatologist because some of the blood work suggested I may have Lupus. The rheumatologist explained that I do have some markers for Lupus, but that I didn't currently have it. He diagnosed me with Fibro and said I would need to have my ANA. Levels checked every six months and be watched for Lupus. He also noted possible Unidentified Connective Tissue Disorder. He gave me medication in the hopes of helping me get my life back. Sadly, the five medications I started taking everyday did not give much relief. I gave it time, but rapidly gained thirty pounds. I was also put on disability and spent my days sleeping or watching tv or reading a book. I was in pain and depressed and just didn't want to do anything. During this time, I became obsessed with learning everything I could about Fibro and the different theories and protocols. Well, this became even more depressing. Nobody knows what causes it. There are several ideas, each with it's own treatment. In time, I decided to go off all the meds, as I didn't see that they were helping very much, and all I wanted to do was lay down. Not to mention the weight gain which was very hard to accept. I was in a fragile state and then I ended up fat on top of everything else. I felt Fibro had taken so much from me, and now it had taken my looks too. Fast forward almost two years, and sadly, things are not much better, I'm back at work and functioning everyday, but I have pain most days of my life. Sometimes it's mild, other times it's excruciating. I never get a good night's sleep, and I have to pace myself, because if I do too much, I pay for it the next day. Doing too much, though, is not what I used to consider doing too much. It could be as simple as a day at the mall. By the end of the day, I'd be exhausted to where I literally had to drop! It's a degree of tiredness that's hard to explain and that I had never dealt with prior to Fibro. I would be depleted of energy. On top of that, something as simple as having my purse on my shoulder all day, or carrying shopping bags, would leave me in incredible pain. It's as if my muscles have been overworked, like after you work out for the first time in a long time and you're in so much pain the next day. I get that pain over little things, or sometimes for no reason at all.

So this is my life now. I am not the person I used to be, and I'm still trying to come to terms with the psychological ramifications of that. I think many women go through a sort of mid-life/identity crisis at my age. For me this has been amplified by Fibro. I am suffering, but try very hard to keep it to myself. Everyone who knows me knows I'm different, but I don't want to complain all the time. I know this is my life, but I still get depressed and angry. Every once in awhile, I research and try a different protocol, but I have not found an answer yet. I remind myself of how blessed I am and that I could have an illness that is so much worse. I have my beautiful family who are ll healthy and loving, good people. I've to a career doing what I love. I've got a beautiful home, and everything I could ever want or need. I'm surrounded by friends and family who love me and would do anything for me. I have my faith in God, which is the only thing that gets me through somedays. I've found the less I focus on my illness, the better, but I can't ignore it completely. I have to work to balance my life! I miss the me I used to be. I miss the feelings of accomplishment and pride. I miss giving 110% to everything I do. I miss being fun and playful. I now live with guilt over the things I can't do for my family. I live with worry over what my daughter is picking up from watching me. I live with regret over the life I can no longer live. I miss the me I used to be!

lalatomanyOpuss № I