Chronic

At first you think you have caught the flu, and maybe you did. The symptoms ebb and flow, but the exhaustion stays. Then new symptoms pop up, and the original deep muscle and joint pain has gone nowhere. You just feel wrong somehow, like something else has gotten ahold of your body. You wonder if you have just been working too much, or maybe too much stress. Your head hurts all the time now, and you have huge knots in your muscles. You tell yourself you just need sleep.

After a couple of months of feeling ill, you wonder if it’s time to see a doctor. Something has got to be wrong you think. You can’t stop working and you have so much to do outside work. Dance classes to teach, a child to raise, a sick husband to take care of. So, you really can’t afford to be sick. It is so hard to take time off work, but you decide you should make an appointment. The appointment is made and you are really looking forward to some relief. You are hoping maybe some antibiotics and you will be right as rain. Maybe just a blood test and it will all be okay. You are so tired of being sick, you just got to get to the appointment.

The appointment arrives, you tell the doctor about the exhaustion and the headaches and the muscle pain. You tell them about your bones aching. She tells you that it is probably stress and gives you a prescription for another antidepressant. Another antidepressant. Huh, well you are super stressed, maybe this will help. So you take it as prescribed and wait the six weeks for it to take effect. Nothing. If anything now its worse because of the side effects of the new meds. But you have to keep going, rent is due and you have so many bills. So you stay on it and try to get through the next six weeks.

Life goes on and stress keeps happening and you keep getting worse. You finally break down and make another appointment, something is really wrong now. You wait for the appointment and start wondering what could be wrong with you. Your joints swell and you ache all over and you can hardly keep your eyes open. Your headaches get worse but you still have to keep going.

The doctor runs tests and takes samples and tells you they will call. This time they also have an infection in your ear and you get antibiotics. She takes you off the extra antidepressant and gives you something to help you sleep, thinking that if your muscles rest you won’t hurt so much. But then you get a yeast infection that won’t clear up. You go through the prescription meds and they don’t work and then you go through over the counter treatments and they don’t work. Finally after three rounds of prescriptions your ear stops hurting and your infection clears up. But you can’t take the other meds because they make it so hard for you to get up the next day. You have to get up, you have to work. They did not really help with the pain anyway. So you start taking 8 advil a day, sometimes twelve to get through the work day. You get your test results, they know they are abnormal but are not sure what is actually wrong. They tell you to call again if you get worse.

You do get worse, more tests. More pain. More meds. They don’t really help so you are up to 16 advil a day. The doctor tells you that’s too many and want you see a specialist. But the waiting list is 6 months or more. They tell you about your blood tests being abnormal, but say you don’t fit into any one diagnosis. You don’t feel any better. In fact you are getting worse. But you put on a brave face and keep going. It gets worse, but you have to work and take care of everyone else. You keep going and learn to just push through.

A few years in, and your not capable of just pushing through anymore. More tests, more meds, and nothing is helping. No more dance, no more yoga, no more going out. You just can’t. You are just too tired. Too many infections, too many adverse reactions to antibiotics. You finally get to the specialist, only to have them tell you they no longer take your insurance. Another waiting list.

Meanwhile you have been in and out of the emergency room 10 times in three years. You are always sick to your stomach and you bloat to the point of agonizing pain. You are passing blood in your stool and so you get a colonoscopy and endoscopy and they tell you how inflammed you are and that they took biopsies and took out precancerous tumors and how you should feel better on these new meds. But you don’t. And you just stop going to the emergency room anymore because you are so used to being sick.

More specialists, a spinal tap, several MRI’s, five CT scans. You are told you have lots of disorders and two types of arthritis and degenerative disk disease. You go to surgery after surgery. Meds after meds. Tests after tests. They still are not sure what’s causing all the other symptoms. So they tell you to go to another specialist. And that specialist tells you that you are never going to get better, but its not “as bad as it could be.”

Meanwhile years have gone by. You have watched your finances go to complete ruin and then bankruptcy because even with insurance you just can’t pay the bills. You watch your friends leave because you can’t do what they do and you can’t afford it even if you felt well enough. They are sick of you being sick, so they leave. You understand. It still hurts though. Your world gets smaller and everything about you changes. You do not even look like the same person. You are pale, and you limp. You are swollen and puffy everywhere. Your hair starts to fall out. Your lips and fingers turn grey and blue. Your body hurts so bad you can hardly walk. Your world becomes your side of the bed and your desk at work. Sometimes you feel well enough to window shop or go grocery shopping. But you pay for every hour at work, every trip to the store. You stopped even trying to go out and have fun. Joy becomes a thing of the past, and one best not remembered.

You find that you can not afford the things that might help. Massage is not covered by insurance and for it to really help you need to go twice a week. You can’t because even if you could afford, you are so tired after work you just can’t go. You can’t afford a dietician, so you try whatever you can find online. You can’t afford supplements or organic food, so you try and do what you can. It does not really help. You start to give up hope. Slowly you come to be indifferent, because you can’t handle the disappointment and you are too tired to keep hoping.

People wish you well, and tell you to get better soon. They do this because they do not know what else to say. They do not visit you anymore. You try to cry in the shower when no one can hear you. You feel like a burden. You try not to think about all the things you have lost, all that you were, but you are stuck in mourning. You try to find new purpose, new hobbies, but mostly you are too tired to do any of that. Your life is scheduled around your meds, and how many hours you need to be in bed resting so you can walk the next day. Your travel plans have to include what kind of mattress you are going to sleep on, how much walking there will be and if you have to stand for any length of time and where you can sit and rest. So obviously you don’t really go anywhere. Even if you could go, you can’t really afford it so you don’t. You stay on your side of the bed and flip channels. You ache and you burn and your stomach hurts and the knots in your muscles cause nerve pain. You give up going to the doctor.

I was told is that I am chronically ill. This means, no cure, no recovery, no hope. Chronic is always, and in all ways. Chronic is the thing that robs you of you and leaves a shell. It shrinks your world, and takes your friends. It is your end, your ending. It does it slowly and cruelly. It forces you into surgery after surgery. You become a shadow of what you were.

All things end. All things break down. It is a natural process. You know this. It does not take the sting out of loss. It does not make it easier to wither before you are 47 years old. Life is not fair. You know this. You know you have no choices. So you get up and you go to work and you come home and go to bed over and over again. You stay on your side. You take the pills and wait for sleep.