Chronic Fatigue Syndrome. It sucks. That is all.
Well not really but sometimes it is just easier to just sum it all up simply. The symptoms are plentiful, varied and impact your whole life. It is a severely crappy illness.
I have had CFS/ME/CFIDS/pick your own for 10 years. I first became ill a few months after I gave birth to our first son. And although I have been sick for the better part of ten years I have only had an official diagnosis for about 3 years.
The following is a note I wrote last February about my CFS. I, thankfully, have been feeling a bit better than I was then, but it is still a good summary of my experience with CFS.
Being honest about being sick . . .
February 25, 2013 at 12:27pm
I hesitate to write these things down. Why? Well, written things tend to be more permanent. The last thing I want this sickness to be is permanent. Also, I have the same fears of being open and honest as everyone else does. Judgement, vulnerability, etc. I am also mostly an introvert and I don’t want to talk about it. But more than all of those things is I don’t want to be a burden to/on others. Chronic illness is something that doesn’t tend to go away. I may always be sick, for the rest of my life. I hate admitting that but it is (statically speaking) the truth. And while I do have hope that I will be better some day, I may not. And sick people are a burden to those who are close to them. So telling everyone I know that I am sick and knowing they may want to help and knowing that I will always need help and knowing that I will always be a burden and feeling that people will grow weary of the burden (which is me) I feel like it is better just to keep quiet about it. And besides telling people you are always sick and feeling crappy makes you seem like a whiner and complainer and no one likes whiners and complainers. And I don’t look sick so I can just not tell anyone and they won’t have to get sick of me.
But I have been encouraged and challenged and educated by those around me who have opened up about their struggles so hopefully my struggles can do the same.
Being chronically ill sucks. More than any healthy or even moderately healthy person could possibly understand or grasp. I have been sick for nine years to varying degrees but this past year has been by far the worst.
I cry, a lot, and crying at all is more than I would want. I hate crying! Always have. I used to be emotionally stable. No, not just stable but strong, sturdy, a rock. Now I’m just a sick, weepy, emotional and physical mess.
I used to be physically strong. I mean I wasn’t a body builder and I didn’t work out but I could handle myself. I could carry, lift, run if I needed to. Now I am lucky if I have the energy and strength to go up and down the stairs a few times a day. I am not exaggerating. A few times a day. This is what I have been reduced to. And if I do too much (like leave the house or take a walk) I pay for it for days afterwards by having all of my symptoms be worse.
I am nowhere near being the wife or mother I want or need to be. I fail every moment of every day without even trying because I can’t try. I don’t have the energy or strength or cognitive ability to try.
I am afraid that when my children are grown all they will remember is all I, and as a result they, were unable to do. All the days we couldn’t go out and have fun because I couldn’t get up off the couch or out of bed. All of the missed activities. All the times they had to do things for me because I couldn’t. I fear they will feel they had no childhood because they had to be responsible for picking up my slack and taking care of me. Not to mention the fact that I can’t teach them, encourage them, discipline them, play with them or give them the time and attention they need.
I used to have a clean house. I mean really clean. I hate clutter. I don’t like having a dirty house. But now I have no choice but to see the dirty floor, the pink yuck in the shower, the dust built up, the cobwebs and leave them. I look around and all I see are things that need to be done. Things that I would love to do but can not. Things that are now a burden to my husband and children. And I know some people think “who cares, leave it, “it won’t kill you”, or” it will be there tomorrow”. I try to tell myself these things. But you know what? It WILL still be there tomorrow, and the next day/month/year. And I don’t want it to be there! I want it to be cleaned, fixed, nice. All of these things are a constant reminder of what I can no longer do, of my weakness, of my illness.
I want to be able to think but I can’t. My brain just can’t process thoughts, words, sentences. It just stops. I feel like an idiot. I used to be pretty smart. Now I can’t remember anything. Long term, short term, nothing. I feel like this makes me unreliable, irresponsible, non-functional. Things I used to pride myself on being; reliable, functional, responsible.
And my husband, my poor wonderful husband. This is not what he signed up for when we got married 13 years ago. And yet he stays with me. He doesn’t complain. He remembers what I used to be and still sees me that way. He loves me despite the fact that I am a shell of what I used to be and a constant burden. He says I am not but I know that I am. I can’t meet his needs, emotionally, intellectually, physically, and yet he loves me. He is amazing and I am beyond blessed to be loved and taken care of by him.
So I try to be hopeful. I try to focus on the positive. My amazing husband. My beautiful children. The great community God has placed us in. The days that aren’t as bad. How I shouldn’t complain. I am after all still alive. My illness will most likely not kill me. Other people have it worse. Even lots of others with this same horrible illness. The winter is getting close to being over and I typically feel a bit better in the summer. How in most other paces in the world I wouldn’t be taken care of and would probably be dead by now. But I just end up thinking about how I don’t really function. How I can’t really participate fully in life. And then my brain quits on me and I can’t remember what I was thinking about. Sometimes maybe that is a good thing.
What I have been diagnosed with is Chronic Fatigue Syndrome. A.K.A. CFS, or CFIDS (Chronic Fatigue Immune Deficiency Syndrome) or ME (Myalgic Encephalomyelitis). What all that means is I have an illness that has no known cause, no way to really identify or definitively diagnose, no cure, no effective treatments, that doctors and scientists can’t even identify with a common or agreed upon name, that many people and some doctors don’t even believe is real. Which means they think I and millions of others are just crazy, but I can assure you we are not.
I have tried more medications, supplements, vitamins and dietary changes than I wish to recount or remember. Everyone has a theory, suggestion, diagnosis, “Dr. Oz says . . .”‘, “you should try this” or “look into” that for me it seems. Most of which I look into or try because it’s usually worth a shot but nothing so far has helped besides eating healthier and juicing. Which only helps when I am consistent (which is suuuuper easy to be when I always feel like crap) and only helps to a degree. And the research and trying are exhausting. I hate never having good news for people who care enough to ask how I am doing and who want a genuine answer.
I also have more symptoms than I care to recount or can remember. The most consistent and debilitating are the complete exhaustion, muscle weakness, brain fog, joint pain and very long recovery (days or weeks) after minimal physical or mental activity. Sleep doesn’t help. I always wake up tired. I also have Thyroid issues, extreme intolerance to cold, digestive issues, depression and sometimes anxiety, and many other nagging symptoms that come and go. Medications help with some of these things some of the time. Every system in my body seems to be malfunctioning.
I have learned a lot about life, myself and others though being sick. Things that I am glad that I have learned. But if you were ask me if I would change it if I could my answer would be without a doubt YES I would change it. I could have learned to empathize with sick people, learned that being judgmental means there is something wrong with me and I should focus on that, learned that ultimately I have NO control over anything or anyone despite my seeming need for control, learned that sometimes God waits a long time to answer our prayers, sometimes He answers them in ways we wouldn’t prefer and sometimes He says no. And sometimes He says nothing at all. I could have learned all of these things without being sick. But I am sick. And it sucks. Big time.
I don’t share this because I seek solutions. Sympathy is nice, so is help, although I’d rather not ask for it and accepting it is extremely hard. I really only share because I feel like it may be helpful. Cathartic yet challenging for me but maybe helpful in some way to others. Maybe you can learn some of those lessons I have learned through being so sick for so long without having to experience it yourself. Maybe my illness can be of benefit to someone else and in that make my experience, and by extension me, a tiny bit less futile.
I know I am loved. I know there is hope. I know God is with me. I know people care. I know people pray for me and my family. I know I am blessed. These are the things I hold on to and they help me through the day.