"She is just lazy and is taking advantage of _____________" ( this was said in reference to me supposedly taking advantage of my husband). This said by a person who knows that I have had Chronic Fatigue Syndrome for years but is convinced that I'm not really sick because I look healthy.
Ignorant comments like these and other equally ignorant ones are extremely frustrating and hurtful for those of us who deal with these auto-immune illnesses that drastically altered our lives and that of our family members who also suffer collateral damage from our illnesses also. We may suffer for years as we try to find answers to what exactly it is that is making us sick. The medical bills mount as we see specialists and try different medications and treatments along the path to diagnosis. When we finally do have a diagnosis, we again play the game of what medications might or might not work, if there are indeed any available for our particular auto-immune disease. For some of us, there are no medications that help and then it is a matter of having to try to find supplements, changes in diet and lifestyles, anything that will help us cope and deal with our illnesses.
My personal experience started with extreme fatigue, pain throughout my body, constant yeast infections and feeling like I was losing my mind because my brain was in a fog some days. I had chronic infection after infection, one on top of another. We tried all kinds of medications which would lead to other infections and it became a vicious cycle. This went on for two years. I went to a specialist that confirmed what my doctor had finally diagnosed me with but basically said there was nothing they could really do for me. So began my search for ways to treat my Chronic Fatigue Syndrome with supplements, diet, and a complete change in lifestyle.
When I was first diagnosed, there was not a lot of information out there on my disease and some of the medical insurance companies were actually dropping coverage on people who had this disease because a. they did not believe it was real or b. because they were afraid of the huge costs to find a diagnoses and because the "treatments" for it could potentially cost $10,000 or more to just get a workup and plan done that might or might not help. My doctor warned me about all this so we "tip toed" through trying to find something, anything that might help me to no avail.
I wanted to just give up. I was miserable and felt like I was letting my husband and kids down. I was no longer the same woman my hubby had married or the mother to my kids that I so desperately wanted to be. I had HUGE amounts of guilt (and at times still do). I finally realized that I was going to have to figure out a way to live with this and try to find some answers for myself. It was through lots and lots of research on my part, trial and error, and tons of money spent on different supplements and things that we finally found a few things that worked for me and my particular body chemistry.
Here are a few things that I have learned along the way. I am NOT the same woman I was before and will never be again. I had to let go of that and learn to cope with my new "normal". After taking the supplements and starting to feel a bit better I still have to pace myself. I may have a day when I have lots of energy and I push myself to get as much done as I can, but I do collapse and rest for about half an hour at time when I feel like I can't even move another muscle. I also realize that if I have a day when I do have lots of energy, they next day will most likely be a crash day for me when I will not be able to do much at all. Three days in a row of even moderate activity will wear me out to the point of bringing on a crash. Stress makes my illness flare up big time. I have Chronic Systemic Yeast Overgrowth as part of this and it will explode. My body will ache and I will get horrible tension headaches along with migraines. My brain goes into goes into foggy mode and I basically just have to shut down for awhile. If things are really bad, it can take me a very long time to recover from these crashes...sometimes months. During these times, I severely limit any and all outside commitments and try to avoid any stressful situations which will just make things all that much worse. Even though I may be exhausted, sleep eludes me or my sleep cycles are completely thrown off.
Let me give you some examples of what my life is like. I may go and run errands on a day when I have a decent amount of energy. By the time I get home, I am usually exhausted and the next day I become "lump girl". I don't move much and spend most of my day recovering for the day before. They next day I may have a bit more energy, but I still can't push myself so I only get one or two critical things done that day.
Here is another example. This past Friday I pushed myself big time. I made multiple loaves of banana bread, a loaf of sourdough bread, worked on some laundry and got some seeds potted up. I also made a nice dinner. By that afternoon, I was completely exhausted and so sore I could hardly move. I soaked in the hot tub trying to get my muscles to stop aching so I could sleep that night. As per usual, even though I was exhausted, I could not fall asleep until about 3 the next morning and even then, my sleep was very fitful because my muscles ached so bad. Saturday morning, after I got up found me with brain fog and limited energy. We had plans with family for that afternoon so I pushed through but by that evening I knew that the next day was going to be a major crash day. I again had a hard time sleeping due to pain but I did manage some. Sunday morning I was achy and managed to get our bed stripped down, the sheets washed and hung out on the line to dry. I then collapsed back into bed and had a hard time concentrating on what was on tv. I finally got up after a few hours, made lunch and then had to rest again. It is now Sunday afternoon and I am writing this post and, due to my brain fog, have had to go back and edit multiple times and it has taken me over an hour just to get this far. I'm frustrated with myself and just want to cry.
I hate having this illness and I hate feeling like this. When I am out and about on my "good days", I put everything I have into it. I will also push myself when I am around people and give them my everything. I don't want them to know how hard it is at times just trying to concentrate on things when my energy is slipping. When I was substitute teaching I gave those kids everything I had because they deserved my best. By the time I would get home I would collapse. If I had a multiple day teaching job the following off days after that would find me in crash mode. When I had a long term several weeks in a row or more teaching assignment, I would come home in the afternoon, crash on the couch, and repeat. by the end of the week, I could barely move and concentrating was hard for me. The weekends were spent in bed trying to get enough rest to get me through another week. I learned that I just could not keep up that kid of pace and it frustrated me to no end because teaching is what I am trained to do and love.
It hurts when people think I am "faking" my illness or taking advantage of my husband by not working full time. I would love to be able to teach full time again. I would love to feel normal and healthy and have energy. I would love to be able to go without pain for more than a day, I would also love to not have brain fog. Most of all, I would love to be the same woman my husband married and be the mother that I was to my kids before this illness hit. But I can't and that tears me up inside. My husband and kids are wonderful and they are so supportive and understanding but I still feel guilty at times. When I see how hard my hubby works both outside our home at his job and then here at home too, it makes me love him even more but at the same time, makes me feel awful that I cannot do more to ease the burden on him.
I do hope this now going on two hours of me trying to put all this down in some coherent manner will help give a glimpse into what I and so many other people go through who have a daily battle with these kinds of diseases. Yes, there are days when I can get a lot done but what you don't always realize is that the day(s) after are ones in which I have little to no energy. If you are also going through something like this, my prayers are with you. I get it...I'm right there with you. If you are someone who loves someone who is dealing with this, my prayers are with you also and thank you for being there and understanding and supporting them. If this is all new information to you, I hope it will give you some insight into my and so many other people's world. God bless and thank you for hanging in here with me.