DianaRGP

About Me

My Health, My Struggle, My Reality I have been putting this off. Not only because Im trying to come to terms with things, but also because it is not that simple to explain. If I had cancer, I could very simply say I have cancer and everyone would understand. It even seemed easier when KU misdiagnosed me with narcolepsy. In our fast paced world we all seem to like simple just give it to me straight and let me move on to the next thing. That is what I was hoping for in a diagnosis. Figure it out, fix it, and make me better. But that is not my reality and I wanted to share my full story. It has been an ordeal. By the time I get done writing this there may actually be about 3 of you who will want to read it because it is definitely NOT a simple thing. In fact, in my world, the five minutes that you take reading this will take me a month to write. I will have to keep revisiting it until I feel like I have gotten it right because I get confused, cant think straight, have difficulty with word finding, forget things and many days I just dont have the strength. Actually, those are the reasons I like communicating by computer or texting these days more than talking face to face because then others cant see how I struggle, forget what things are called, or sometimes slur my words. And those are some of my better days. On really bad days I barely have the strength to shower, brush my teeth and get dressed. You see me post pictures of our vacations and we always have a wonderful time. But what you dont see are the cancelled reservations, or when Joe has to wait for me half the day because I cant get out of bed, or when we have to sit someplace for a while because I cant move anymore until I rest, or when he has to hold me up as we walk to the room because I am so weak, or the times I fall asleep on the bus ride back to the resort. Sometimes I get dizzy on the plane too. I cant tell you how many times I have missed other events also, when I was really wanting to go family functions, parties, concerts, football games, and church activities. Ive always tried to hide when I was sick. It was too hard to explain that I dont get sick the same way that other people do. I would just go home and say I wasnt feeling good. I havent let very many people see me when I get so fatigued and weak that Im extremely lethargic, confused and sometimes almost unresponsive. Only those who were close to me knew the truth my family, friends and coworkers, and sometimes its even hard for them understand. I was in denial for so long because I wanted everything to be normal. That is how I know this is very real, because I have fought it for so long. Sometimes Im still in denial and then my body tells me differently. Over time I got bad enough that I couldnt hide it anymore. Almost 10 years ago I would have a few days with minor struggles, fatigue, and confusion. Some of my coworkers could tell when I was having a rough day just by looking at me. One friend said it looked like I wilted as the day went on. When my problems first started I might have to leave a work little early to go home and go to bed about every couple of weeks, but things werent too extreme yet. Over the 10 year period I gradually had less and less energy each day and needed more sleep. I tried everything to make myself feel better. I ate right, exercised, took vitamins, and drank more water and less soda, but I still felt like I was always exhausted, not just tired. Starting about 3 years ago there would be evenings I would either fall asleep in my chair as soon as I got home from work or sometimes I would be in bed by 6pm and need 11 or 12 hours of sleep. It then got to the point that I needed naps to get me through the day and I was completely physically and mentally depleted by 3pm. One of the most traumatic experiences I had was a 3 week period when I had to nap during my breaks plus take a nap at home on my lunch hour. There was a day at the end of that time that I couldnt even drive the 7 blocks to my house and I fell asleep in my car. I was so upset when I woke up I remember thinking This is no way to live. It was very depressing. I could feel so much strain in my body from pushing as hard as I could that I truly felt like I was killing myself. My boss at that time was wonderful also and worked with me very well. I could make up my time, use vacation time, or just not get paid for a day or two. Joe has been awesome, caring and supportive. He knew about my health issues before we got married. I have not worked for a year but when I was pouring everything I had into my full time job and didnt have anything left over to do anything else, Joe did everything. Cooking, cleaning, shopping, plus he would take care of me when I needed it. There were days when Joe or my boys would have to come and get me at work because I couldnt drive. I would be so weak they would have to help me to the car. My family can always tell when Im starting to fade. Joe jokes and calls me the Quaalude queen and my kids make fun of me being drunk or a zombie. I suppose its how we cope. I dont mind and try not to take things too seriously because I know its different. In fact, my husband, my mother, and my doctor have all called me weird yay me! So I lived like that every day for years, pushing as hard as I could until I would crash and burn. And sometimes I would crash several times a day, with naps in between to keep me going, because I wanted life to be normal. Mayo told me when I push to the point that I crash and burn that I am essentially making my body shut down because I have pushed it past the point of exhaustion, and it is very unhealthy. About a year ago I decided to be examined when one of these episodes happened. All of my tests were ok but my blood pressure was 225/150. There were times when these episodes were so drastic that I would have the sensation similar to that of going under anesthesia and then I would pass out. I think I did as well as I did and for so long because I have always tried my best to take care of my physical, mental and emotional health. Those are the main things that Mayo stresses, plus pacing. Pacing is extremely difficult for me. It is not really in my nature and for so long it was such a habit of mine to push myself because of work and because I wanted life to be normal. It is my true nature to be active and sociable. I like visiting with people, seeing new places, and doing a variety of activities. I almost feel like I have to change my personality just to be able to do necessary daily things. I have to consciously make myself slow down to maintain a pace, especially on days when I feel a little better. You may see me in person and Im smiling, animated and talking a lot. But what you dont see is that for every minute I talk I need 5 to 10 minutes later to recover... I pay for being the real me. I am also a person who likes to get things done just to have it over with. I hate that I can only vacuum one room at a time and then have to rest for a while. If I push myself for 2 hours cleaning the main rooms in my house instead of pacing over 3 days, it will take me at least 4 days to recover. If I get involved at the computer because I may feel ok at the time, and work for 2 hours instead of stopping every 20 minutes for a break, I spend the next day not being able to get out of my chair. If I visit with a friend for an hour I have to go home and nap. What I experience is not just Im tired. If you have ever driven hours without stopping until your body and mind cannot go another mile and you absolutely have to pull over. Or if you have ever worked an extra-long day of intense physical labor and just crash when you are done because you cant move any more that is what I feel like almost all the time for no reason. And everything that puts any strain on my body makes me worse, illness, allergies, hormones, emotions. Weather changes are terrible for me, so spring and fall in Kansas completely take me out of commission. I feel like I have a hangover every morning for at least 2 hours, even after sleeping 9 or 10 hours. To try to put things into perspective, I should normally have about a gallon of energy to work an 8 hour day, spend time with family, do shopping and cooking, and even other activities that evening. In reality, I have about half a cup for the whole day. Since everything I do takes energy, even thinking, emotions, talking and driving, I have to decide whats important at that moment or for that day. Also, Mayo told me that on a scale from 1 to 12 I am only supposed to maintain about a 4, physically, mentally, and emotionally. I feel like I was pushing a constant 8 to 12 for almost 3 years. I know its hard for some to understand when I dont look sick, but what Im sharing here is just a small part of the unseen struggle I go through every day. I have been to 10 doctors in 10 years, some in Salina, but also Via Christi, Hutchinson Clinic, KU Medical Center and Mayo Clinic. I have been poked and prodded and had every test you can possibly imagine. I have no idea how many times Ive had my blood drawn. One time they took 9 vials at once and another time they took 11. One of the worst tests was the muscle test that I had to have 3 different times. They stick a needle down into about 12 different muscles and make you flex and hold it. After three trips to Mayo Clinic they finally diagnosed me with Chronic Fatigue Syndrome. Every other thing has to be ruled out before a true Chronic Fatigue Syndrome diagnosis can be made. Chronic Fatigue Syndrome (CFS) is NOT the same as having chronic fatigue. It is much different. 7 to 10 million people are affected by Fibromyalgia in the US and many of these patients suffer from chronic fatigue. But there are only 800, 000 cases of CFS/ME and the diagnosis criteria is much more complex. Many organizations have started using the term myalgic encephalomyelitis (ME). Not only to distinguish it from chronic fatigue but also to help raise awareness. The Centers for Disease Control uses the CFS term but also recognizes the ME term. For many years the biggest, most common and most difficult misconception about CFS/ME was that, like Fibromyalgia, it was mistakenly thought to be just in your head. Most in the medical field now agree that CFS/ME and Fibromyalgia are very real physical disorders. Mayo reports that more recent studies in Fibro patients actually show the common physical evidence of excess substance P in spinal fluid. Other studies of CFS/ME patients show brain and spinal cord swelling. The public, however, doesnt seem to be as informed about CFS/ME, they have no clue what is, or think it is the more common chronic fatigue. So when I try to tell someone what I have, I usually just get a blank stare and as you can see it is definitely not simple to explain. At least when I mention Fibro most people are a little more familiar. Most of the time CFS/ME is lumped with Fibromyalgia. They are considered cousins and although there are many similarities, there are also differences, such as the CDC recommends that CFS/ME patients not be given certain medications that are often given to Fibromyalgia patients because of CFS/ME hypersensitivity. Mayo also diagnosed me with Fibro as secondary. I had no idea I even had it. I always knew I had muscle, joint pain and stiffness. I just thought it was because I was getting old, but none of my tests showed anything. It is very common for people with CFS/ME to have such severe fatigue that it usually masks the intense Fibro pain. One of the things that has always been most confusing about CFS/ME is that there are so many symptoms, they are very unpredictable and sporadic and they can change from hour to hour, and not just day to day. Besides the fatigue, the hardest things for me to live with are my cognitive issues. I have memory problems, difficulty in word finding and concentrating and sometimes I am dyslexic. I also get confused and cant focus, which sometimes makes it hard to follow a conversation and I cant drive half the time. Many times I cant read or even watch TV. With my hypersensitivity to smells, cleaners, noise, and lights I cannot be around burning candles or other strong smells. I have had reactions to several medications, including 3 meds that KU had me try for narcolepsy. I have also ended up in the ER a few times. Other symptoms I have are severe muscle weakness, slurred speech, pain and pressure headaches, dizziness, light headedness, blurred vision, digestive issues, heart palpitations, chest pain, chronic flu like symptoms, sore throat, chronic cough, shakiness, joint pain and stiffness, sleep disturbances even when extremely tired, and insomnia. I lack coordination and run into things, drop things, trip, and hit my hands and feet a lot. I have Raynauds syndrome and my hands and feet get extremely cold. I have difficulty controlling my body temperature so I can be hot and sweating one minute and freezing and shivering the next. I almost never feel completely rested and feel like Im half asleep all the time with all of the characteristics that accompany someone who is exhausted. I almost constantly feel internally out of balance. Mayo compares the characteristics of someone with CFS/ME to those of an elderly person. The most depressing times for me are when my mind is working ok but my body is not because then all I can do is sit and think about all the things I want to be doing. And Ive gained weight. : ( Even though all of this has been extremely difficult I am just grateful to finally have a diagnosis so that I can know how to begin to deal with things. Everything makes more sense, instead of knowing something is wrong but not knowing what it is and why certain things are happening. My symptoms are not pleasant but it has been a relief to know that they are common for my condition. It has also been comforting to do some research, get involved with support groups and realize there are others with the exact same struggles as mine. There are some who are actually much worse than I am. A few are even bed ridden and tube fed. CFS/ME has also been known to be fatal. I am also very thankful for how God has provided this past year without me working and I just pray that He continues to provide.