The Pain Of Chronic Illness

Today and next week we have excerpts from the book “The Secret Wife”, by Janice Campbell-Paul. Janice found herself disabled and in a wheelchair, crippled by fibromyalgia. God supernaturally healed her and she moved to India to marry her internet boyfriend and share the story of what God did for her.

Today’s excerpt is the story of chronic illness and disability. Next week we will continue by sharing about her healing and hope for people who are suffering chronically.

Illness And Isolation


My physical pain just seemed to make Rod angry.

More tests were done and I saw more specialists as the symptoms worsened. Each doctor prescribed a new medication. Eventually, I was on anti-depressants, pain suppressants, anti-seizure medicine to control the shaking, and sleeping pills. The doses were increased as the months went by without much relief. Finally, the doctors gave it a name. Fibromyalgia.

I knew it was a little-known or accepted condition associated with depression. I had encountered a few women who had it and used to think they were probably hypochondriacs for all their complaining. I certainly was not like that! I was a woman who was in control of her life and not given to self-pity or tolerant of whining in others.

But this illness now controlled and changed every aspect of my existence. It seemed the harder I fought it, the worse it got. The drugs were of little use. They only took the sharpness off the pain and left me feeling like a zombie, unable to think.

I had become close to two other women who had fibromyalgia and were diagnosed a few years before me. Both were fully addicted to the drugs the doctors had prescribed. The problem is that the body gets used to the medication and eventually demands more to kill the pain. I witnessed how these two women would beg their doctors to increase their medication. But the doctors had to answer to the regulations set for approved dosages and could not increase the amounts.

I decided at that point to use alcohol as my drug of choice. It was something I was familiar with and readily available. Having three whiskeys every evening seemed to be the answer to the pain-filled nights. I was careful not to increase the amount or take any medication with the alcohol. I also only drank at night before bedtime. But some days I simply had to take the morphine instead, which left me feeling doped out for days afterwards.

I confronted one doctor about this problem. He said, ‘With fibromyalgia pain you have only two choices, either become a drug addict or an alcoholic. You take your pick.’ I left his office in such despair. What kind of life did I have to look forward to? I decided to do without both, the medicines and the alcohol. My resolve lasted only two days before the pain consumed me. I gave in and poured myself a drink. By now my smoking had also increased to a pack a day.

The symptoms were insidious, slowly creeping up on me and changing my lifestyle. First, I gave in and bought myself a cane. Though this helped for a few months, my loss of control over my legs became so severe that I had to resort to metal crutches, the kind that wrapped around my arms for support. I was no longer able to climb ladders to paint or plaster the walls in my home.

But the most humiliating symptom was when my body began to shake and tremble. At first, it was frightening. It was like I was sitting in an alien body watching it as it jerked and twitched out of control. Facial tics would appear and last for minutes or hours. If I became stressed my body would go into a series of spasms lasting for an hour or more.

I forced myself into deep breathing and relaxing meditation and found that this worked well. But if I was in public, or with my family and I felt the trembling coming on, I would rush home; my pride wouldn’t allow me to let them see me in that state, and I didn’t want them to worry more, or have pity on me.

For six months I was able to get around with the crutches, but the pain became so severe in my lower back and legs that I rarely ventured out. It was humiliating to be seen in such a condition by my friends, family and the people I used to work with. I got tired of answering the inevitable question, ‘What happened to you?’

On one visit to my doctor, I reluctantly asked him for a temporary ‘handicapped’ sticker for my car, explaining that by the time I parked and walked into a store the pain was so bad that I had no energy left for shopping. The doctor filled out a form and told me to take it to the local vehicle department. When I got home I looked at the form and noticed that he had checked off the ‘permanent’ box for the handicapped plates. Thinking that this was a mistake, I telephoned him. When I told him of his error, he said. ‘Janice, you have one of the worst cases of fibromyalgia I have ever seen. I must tell you that your condition will not improve, but will more than likely get even worse. The sooner you accept that, the better you will be.’ He was silent for a minute, then added gently. ‘Your condition is permanent, Janice.’ I mumbled a thank you and hung up.

The word ‘permanent’ echoed in my head over and over. Until that moment I truly did not consider myself handicapped. I was just ‘going through’ a tough time physically, but eventually, it would all go away. Was the doctor right? Was I in denial? ‘The sooner you accept that, the better you will be,’ I said out loud. For the remainder of that day I was in a sort of shock, vacillating between acceptance and denial. I asked myself, ‘If I accept it, does that mean I am giving up?’ Then, ‘Just because he says it is so, doesn’t mean it is!’

But it was my own body that told me the answer. It was my own body that would not respond to my efforts to move around like a normal person again. The pain told me the bitter truth.

By April 2001, I was in a wheelchair. By this time I had seen no less than six specialists. Every imaginable test was done. They all seemed to be in agreement. I would never walk again.

It is true that I wept bitterly, that I wallowed in self-pity for a few weeks and I hated my wheelchair with a passion.

Even though it was electric and had controls, I banged into everything in the house. I screamed out in anger at God and asked, ‘Why me?’

But there finally came a time when I accepted my condition. I woke up one day and said to myself, ‘Okay, it is time to go on with your life, such as it is. It is time to make the best of a bad situation. This may be the end of your old life, but it is the beginning of a new one. Make the most of it!’

I began to learn how to do things differently, to work around the affliction, to get some sense of control back into my life. My legs were not working, but my upper torso did; my arms and shoulders were strong and worked fine. I bought a stool with wheels so I could do dishes and cook. I adapted my environment to fit my condition, allowing me more freedom to do the things normal people did

Unfortunately, my husband, my family and friends just could not accept my condition. Rod became increasingly resentful and bitter the more I depended on him. From the beginning he had refused to go with me to the doctors. I had to depend on my parents to take me the many miles to specialists. His focus was only on what I could not do for him anymore. He reminded me daily how much of a burden I had become on him.

One of the most frustrating and unexplained things about fibromyalgia is that the pain levels vary and the pain moves from one part of the body to another. Though the pain in my lower back and legs remained constant, each day was a challenge depending on where another pain was focused. Then there were blessed days when I felt hardly any pain. On these days I could stand and walk a little.

The doctors had warned me that when this happened, I must be careful not to overdo anything. But it was as if heavy chains had been removed from my body and I was set free, if only for that moment, that day. I would rejoice and do a few of the many activities that had been taken away from me. Moving cautiously, I would clean the house, do some gardening, or visit my family. But I soon learned that those golden days were inevitably followed by days of excruciating pain and exhaustion.

But worse than this, those that were closest to me, those who saw me nearly normal one day and bedridden the next, began to doubt the reality of the disease. ‘It must be psychological,’ they would say. Or, ‘She’s just faking it to get attention.’ I understood their feelings—after all, hadn’t I thought the same of the women I had known who had been in the predicament I was in now?


Next week we’ll share another excerpt from “The Secret Wife” with Janice’s unexpected encounter with a stranger in the grocery story. Meanwhile, maybe you’d like to read the rest of Janice’s story, including the full story of her healing, secret marriage, and life in India. You can purchase the Kindle or print version of “The Secret Wife” here:

 

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