I let people down in my life all the time. I don’t want to. I hate it that I do. I hate that I’m not the woman who I used to be, that I desire to be, and that I want to be now. Before CFS/ME I was a very hard worker, doing more than I probably should – all the time. I remember when I was in high school and college my Mom telling me “you’ve got to stop burning the candle at both ends.” I think she was right. I think I literally burned myself down and out.
In college I would get up early every morning, go work out, go to all my classes (a full load), then leave there and go to my full-time job. I would work there from 2 pm to 10 pm, and then drive home and go study for as many hours as I could. I would then get back up and do it all again.
For several years of my life I was a single mom of one, working full-time (40+ hours a week), and running a ministry at a local church that took a good many hours every week for me to run. I loved it. I also had to take care of my little house, which entailed the yard work, house work, grocery shopping, paying bills, balancing checkbooks, etc. I was doing it all. Sure there were times I was tired, but who wouldn’t be? When my daughter would be with her Dad I would usually work extra hours at work so that when she was back with me that I would just have to work the straight 40 hours in order to have more time with her.
I can literally pinpoint the year that CFS/ME was very evident in my life. It was 2004. I was experiencing more than usual tiredness, extreme body pain, nausea, extreme muscle cramping, extreme migraines (ended up at ER many times), IBS (irritable bowel syndrome). I had come down with a virus that year and it forever changed my life. Every part of my body hurt. It was more and more difficult to work. I was doing everything I could think of to bring about healing in my body. I tried chiropractic and massage, different medications, etc. Nothing was helping. I would go home on my lunches and sleep I was so exhausted — all the time. I could fall asleep at the drop of a hat anymore. Now during the weeks my daughter was with her Dad, I would literally go home from work and fall into bed to sleep. I couldn’t get anything done anymore. Doctors didn’t know what was wrong. I gave up on doctors not too long in 2005.
In 2008, the symptoms got very severe and I decided I was buckling down and going to get to the bottom of this and get help. I was having passing out episodes, seizures, dizzy spells, heart pain, chest pain, lung pain, migraines, IBS. You name it, I had it. I wanted to die. I thought I was dying. Shortly after this I finally got the diagnosis of CFS/ME and fibromyalgia. Even with all the ignorance out there in the world, I can assure you, this is a real thing. I lost my job at this time too, and that was devastating. At this point, I had remarried so thankfully we had my husband’s income, but we still had four children (teens) in the home.
Do I want to be made well? Absolutely! I have had so many people say such ignorant things to me throughout all of this, things that people would NEVER consider saying to someone who has cancer, MS, diabetes, lupus, (you list any other disease here). This isn’t the kind of disease that people put out “dinner trains” for, or offer to help you out at home, or anything because “well, you sure look good”. I can count on one hand the offers that have been made to help me out. One hand. I am not saying this because I want anyone to feel sorry for me, or to even give me help. After all these years, I have learned to manage, adapt, and know what my limitations are. I also have let a lot of things go and just don’t worry about certain things that don’t get done because if I do, I get stressed, and then I get sick Imagine this, you have the flu and it never goes away, or it may go away for a day or two, but then comes back with a vengeance. That is simply a small taste of what I have been dealing with for over 10 years.
I have had people tell me “maybe you have a demon”, “have you prayed hard enough?”, “have you fasted for your healing?”, “you just need to do ______ ” (fill in the blank), “you just need to exercise more,” “you just need to take more Vitamin D”. When I came down with CFS/ME I was running/walking 3 miles at least 5 times a week — I was hardly out of shape. My vitamin D levels are now good and I still have symptoms. I take vitamins and supplements, and while they help, I still have symptoms and flares. I’ve had strangers and friends approach me with their “cure”. I fell for it one time, and put out over $160 for this stuff that only made me sick to my stomach. I know people mean well, but again, would they do this or say these things to someone who has cancer. I don’t think so, but who knows. Many, many years ago there was a stigma associated with cancer. People used to think that cancer was contagious. We now know that it is not contagious.
I know that the CDC (Centers for Disease Controls) consider CFS/ME a real thing because they will not let me donate blood or be an organ donor. That to me says a lot. The CDC also has much information on CFS/ME about it, so they DO recognize this as a real disease – incurable at the moment, but very real. The more research they are doing on it, the more they are finding out about it and hopefully the stupid, idiotic stigmas associated with it will go away. Let me assure you, I DO NOT LIKE BEING THIS WAY, NOR DO I WANT TO REMAIN THIS WAY.
When yet another person says yet another ignorant comment to me, I’ll tell you what it does to me, it brings back ALL of the negatives comments that have been said to me over the years like dominoes and they all come tumbling down over me — hitting me, hurting me, wounding my already hurting heart because I wonder “what I have done to bring this on?”
I have talked to Jesus about this nearly every day, begging for my healing, asking for my healing, repenting of everything I can possibly think of, getting prayed over by others, and nothing. I see Him answering many other prayers in my life, so I know He hears me. I know that other Christians judge me because after this many years, why am I not well? Do I not have enough faith? (I’ve been told that.) Do I doubt? Yes at times I do doubt and during those times I tell Jesus “please help me not to doubt!” (Just as the man in the Bible said to Jesus when he asked Jesus to heal his son.)
Yes, there are days I have that are better than others, and I’ll admit that during those times I DO frantically try to get as much done as possible — only to pay for it for many days later, sometimes weeks later. And if I get another illness of any kind, I end up being sick much longer than I should be because then my CFS/ME kicks in.
I am to the point that I really don’t want to talk about it anymore. When people ask me “how are you?” I simply want to say “fine”. If they ask further, I will sometimes tell them a little more, but I’ll be honest, I HATE it that I am this way! I hate it when I let my friends and family down because I cannot do yet another function because I am in so much pain, so tired, so sick.
I am thankful for the handful of loved ones who have made it a point to read up (the real literature) on what I am dealing with so that they understand what I am going through. I am thankful to those loved ones who haven’t given up on me, and still reach out to me — even when I can’t reach back all the time. I have one friend in particular that I love as much as a sister (V), and she never gives up on me. She understands that I have limitations, but never gives up on me. She doesn’t get mad at me if I can’t be there all the time because she knows how much I desire to. Yes, I have lost friends through this, and that makes me sad, but I can’t control it. I have friends who are disappointed that I can’t be there for them, and I’m sorry for that. But here’s my question to those people, where are you and where were you when I need(ed) someone? When I was laid up in bed for over 3 months, completely unable to get out? Where were you? No phone calls. No messages. No offers of help. Nothing. And yet you want to be upset with me because I can’t be there for you?
Am I angry? Yes, sometimes I do get angry, but I let it go because it does me absolutely no good. The thing I feel frustrated over is the friends who are upset that I’m not there for them, and dealing with the emotions that go along with that.
Finally, I am very blessed and have been very blessed through this whole process. Why you say? It has brought me to a much deeper relationship with my Lord and Savior, Jesus. He has never left my side through this. He has grieved with me through this. He has comforted me through this. When there was no one understanding, He was there. When there were hurtful words, He was there. I have an amazing husband who supports me more than I could ever ask for. He checks with me daily to make sure I am not over-doing it, and he never seems to get upset with me at my lack of abilities no matter what we’re going through. He is the most loving, kind, and understanding man I’ve ever known and I love him more than I can even say. I have been blessed beyond measure by him. He just rolls with the punches and never gets ruffled by anything. He hates to see me sick and in pain, but he has never made me feel worthless or unloveable because of this. I am blessed. I have a great doctor now who “gets it!” What a relief that is after going for many years with so many who didn’t get it.
A lot more education and research needs to be done, but progress is coming and is being done more and more. Whatever God has in store for me in the future, and whatever His will for me is, I will praise Him. I praise Him now. It is not always easy, but with Him I am able to do this. That’s why I am blessed.