Every so often, I need to update this page with another little preface. I contracted CFS in September 1990, so I leave it to you to work out how long I've had it. I often get emails from people asking if they can quote this page, or link to it. Yes, you can. If this helps even one person understand CFS better, then writing it was worth it. All I ask is that you drop me an email to let me know what you've done with it and please credit me and include a copyright notice. But you don't have to ask first. Go ahead and use it and then tell me what you've done. My details are at the bottom of the page.
Quick update - 12 May 2008 - is that I want to link to this page for this year's CFS Awareness Day, so I figured a very quick update was in order. Basically, things are much the same. I'm married now and have a four year old son. He takes up pretty much all of my energy and doesn't leave much over for anything else. He goes to daycare four days a week and after he's gone I generally climb back into bed and go to sleep. The problem is that sleep doesn't make me any less tired but trying to stay awake makes me more so. But we all cope from day to day and I don't know how I would manage without my wonderful and mostly understanding husband. Thank you, darling.
My latest update - 27 December 2001 - is that I had to leave my job. The stress of the continual and unrelenting workload built up and built up until I collapsed. I was sorry to go, and my boss was sorry to lose me, but we had no other choice. I spent probably a year just trying to recover, and I have now settled back into a more stable routine. I don't expect I'll be able to work outside of my home in the near - or possibly even distant future. I've started a small business creating computer generated cross stitch charts which mostly needs some exposure now and I've been engaged since March this year. I am now living with my fiance - who is wonderful and loving and understanding - and keeping the house and doing my cross stitch designing and writing (and the other two websites when I can) is my limit right now. Which is why I have closed down Kerry's Corner. I don't have the energy to keep it up. Maybe one day. But I am leaving this page and will continue to add my updates since they seem to be helpful to other sufferers of CFS and similar illnesses.
The thing is, no-one outside of having or knowing someone with CFS can ever really understand what it is all about. I know, because I have CFS and I've been there. My family wasn't understanding, they were getting annoyed (or I felt they were getting annoyed) at me because I didn't seem to be pulling my weight around home. And I was getting angry, because I knew how terrible I felt and how dare they get at me when I was doing all I could. So someone suggested I write it down and tell them. Without communication, there's no understanding at all.
So that's why I'm putting it up here, in an attempt to further understanding. This is not an attack or a slight or a suggetion anyone is uncaring. It's just that CFS seems to be one of those illnesses (and it is an illness, we wouldn't be doing this for fun) that can't be understood just because you know what the letters mean. I know that because I've been dealing with it for 9 years.
Health wise, I'm better now, working part time. But that can actually make the understanding aspect worse. I can spend three days pretty much sitting in a chair looking at the wall because I'm so tired and I get back to work and everyone says how lucky I am to have time off and how much I must get done. Or they look puzzled and even a bit like they don't want to know if I say that actually my weekend was terrible, I spend it all in the chair so that I would have the energy to come back to work today. To them "doing nothing" means doing the washing, cleaning the house, walking the dog, washing the car, watching a bit of TV and making half a quilt. For me it can literally mean doing nothing.
I'm going to attempt to describe the indescribable. So bear with me while I try.
First of all, imagine you get tired. Well, that's easy, isn't it? Everyone gets tired. But I'm not talking about the "I've been up too late and boy, am I sleepy" sort of tired. Nor am I talking about the clean, rewarding exhaustion felt after hard exercise. I'm talking about deep, deep, relentless fatigue that has no discernible cause. I think of it as a bone-deep tired, not because its in my bones, but because if it was any deeper than that it would come out the other side. It's a tired that really does make me feel "weak at the knees", a deep, arcing, hurting weak that can keep me awake at night. And it's not just my knees, it's my elbows too, and sometimes it extends out into my legs, and my arms, until I can't think about anything much else. It's a tired that no amount of sleep can cure, so that I often wake up more tired than when I went to sleep. A tired that doesn't let me sleep much anyway (but I wake up at 7.30am, so how can I claim to be tired, right?). And I hardly ever sleep during the day, so that all I can do is wait as the hours tick by, and very boring they are too, when you don't have the energy to do anything to fill them, not even read a book, or watch TV, or hold a conversation. It's a tired that sometimes makes me feel like I'm trying to swim in glue. Do you remember that gluggy, clear paste you used to use in primary school? Well, that's the sort of glue I'm talking about. I hope my kind of tired is starting to sound different from your kind of tired.
But this isn't only about being tired, there's lots more than that. I forget things. I get to a place and have no idea why I went there. "Sure," you say, "I do that. Everyone does that." But I do it EVERY DAY, usually several times every day. I can be holding a conversation with someone and suddenly I can't remember what I was saying. My mind goes completely, frighteningly blank. If it's you I'm talking to, you probably won't notice. You'll just think I paused for breath or to marshal my thoughts and arguments. But I know that for those few seconds I couldn't remember much of anything at all. And I do that a whole lot more often that you do as well. Other times, I know exactly what I want to say, but I simply cannot say the words. Somehow my brain and my mouth seem to have lost contact. And then I really feel like a fraud, because I can say the word in my mind, but I'm not saying it out loud. But I'm not doing this to make myself seem worse than I am, I just cannot make the connection to my voice to vocalise the thought. I read a book once, all 492 pages of it, and when I finished I could have started it again right away and had absolutely no idea of what was going to happen next. Individual words make sense, but when they are strung together into a sentence, the meaning all seems to disappear. You can talk to me, and when you mention the conversation later, I don't know what you're talking about. I can't multi-task anymore. If I leave a job half-way through (and some jobs, like doing the washing and hanging it out, you have to leave) then I'll completely forget about it. I have to leave myself messages all over the house so that the jobs get done. Never trust me to remember something for you, because there's a very good chance I won't.
My co-ordination isn't as good as it used to be. I keep finding bruises I don't remember getting, because I walked into things. Sometimes I never even saw whatever it was, and sometimes I did, but I didn't seem to be able to avoid it anyway. I go to walk around a hall corner, or through a doorway, and collide with it instead. I drop things. Not just now and then, but often. And even when I don't, I can often feel things slipping through my fingers, so that I have to tighten my grip.
Have you ever felt that your eyes have glazed over like the cliché says. My whole brain can glaze over, until I feel like I'm somehow just a little out of synch with the world. As if I was wandering around behind some kind of force-field that distorts the air around me so that I'm trapped there. Or as if I'm a few seconds out of phase with the rest of the world, like the time-lag you get with a bad overseas phone call, so that the conversation doesn't make sense. At times like that the whole world doesn't make sense and it's easier to just give up on whatever I'm trying to do and just go home.
Then there's the simple things that suddenly aren't, like tidying my bedroom in the mornings. I KNOW all I have to do is put away yesterday's clothes, put a couple of pieces of paper or something in a drawer, throw the duvet on the bed and drop the pillows on top. And sometimes it's easy and gets done three days in a row. But other times it could be like trying to run a marathon and it doesn't get done for a week. Or the dishes. Well, they're pretty easy, aren't they? You just fill the dishwasher, run the water and wash a few saucepans and bowls. With our set-up that's simple, you don't even need to dry them. But sometimes you ask me to do the dishes, or cook the tea, or buy the groceries and my brain doesn't hear that. It hears you asking me to climb Mt. Everest by myself, or clear 10 acres by hand, or do a whole year's study in a night and then get full marks in the exam. And then you don't understand why I say no, or shout, or burst into tears when the request was such a simple one. But to me it wasn't simple, it was much, much more than I could cope with.
And there's the guilt. You come up to me and say, "Gosh you look well" when inside I'm feeling like something the cat dragged in, after chewing on me first and deciding it didn't like me. I don't feel like I can say, "Shut up. I actually feel like death warmed up" when you genuinely meant it and were only trying to help. So the lack of understanding continues, which is what I'm trying to address by writing this. Because this is an invisible illness and how I look on the outside doesn't show what the inside is feeling like. And on the good days (yes, there are good days, although a good day probably puts me at 60 - 75% of where I was before I got sick, and there are just as many bad days) I feel guilty, that I must be all right, so why am I still malingering at home. Why don't I "get a life", go back to study, get a job, move out of home, do SOMETHING, ANYTHING. So that in a way the bad days are a relief, because feeling this awful proves to me that I really am sick, I'm not making it up.
Do you know what I hate the absolute most. It's when I try to explain all this to people (and this isn't all of it, it's only as much as I can think of at 3.30am when I'm too tired and aching to sleep) and you look at me and say, "Oh, but I feel like that too." I'd do physical violence to those people if it wasn't too much effort. I know that you probably do feel some, if not all of them symptoms I've described sometimes. The difference is that I get almost all of them, in varying combinations, almost all of the time. This is an order of magnitude beyond you, but it's almost impossible to describe why and how. I don't remember what it was like to be well, but I KNOW it wasn't like this. I have friends now who have only known me since I was sick. When someone tells them what I used to do before they look disbelieving, as if this is at attempt to fool them. And sometimes I listen and look disbelieving too.
And you know what's scariest. Well, there's two things actually. One is that I know there's lots I've left out and I've still written almost 4 handwritten pages of horror story (it even sounds that way to me when I reread it). The second is that I am absolutely not exaggerating. If anything, this doesn't go far enough (and yet a little voice still tells me that I must be. I'm not dying, I don't have cancer or AIDS or something really horrible like that. I'll probably even get well again someday, so why am I complaining?) But this is what my life is like. Right now this IS my life. This absolutely never goes away. Even at the best moment, there's still something - a muscle ache, a touch of headache, a moment of confusion. This is my life, sometimes (even often) it's the whole of my life and there is nothing else. I see no great goals or distant future. My vision stops just a few paces ahead of me. I make no long-term plans, because I have no idea of what I will or won't be able to do in the years ahead - or even the months, weeks or days ahead.
I don't know if I have described the indescribable, but hopefully you can see a glimmer of my life, and maybe the next time I act or react in an apparently incomprehensible manner, it will make a little more sense.
Personally, I have improved since 1995. Those symptoms are all a little less than that now, but if I overextend myself, back they come. But I'm just trying to explain CFS a little, not tell you about me in particular, so there you are.
The nicest thing that ever happened to me over this was my sister ringing me out of the blue and saying, "I just heard something on the radio about CFS. I didn't realise it was that bad, so I just wanted to ring and tell you." I don't think anyone has ever said anything nicer to me in my whole life.
© 1995-2008 Kerry Dustin