Wednesday, October 20, 2010

Tag Team Illness

Do you ever feel that you just can't get a break? I've been living with fibromyalgia for 3 years and during this time, I was down in the dumps, down and out and downright downcast. The only ups in my life were flare-ups.

Throughout all the drama, the tears and fears, there was one constant in my life that got me through - my husband. He's been by my side for all of it. When we said our marriage vows, I doubt either of us knew how much sickness and how little health was coming our way. It was always one thing after another, with me: depression, anxiety, surgeries and assorted 'itis-es'.

M husband is a big guy with a heart to match. Hale and hardy, he is rarely sick. Over the years, my ailments have kept him busy and I came to depend on him for many things - maybe too many.

In an earlier blog, I realized that illness had become a large part of my identity. And so, the caregiver/sick person tango inevitably took on a rhythm of its own in our 26-year marriage. I was always the sick one... until a few months ago.

Something that I have never suffered from is a 'bad' back. Unfortunately, my husband does. He's had recurring bouts of severe back pain for over 15 years. Typically, his pain would last a few weeks, disappear, only to recur a year or so later. A pain in the butt, for sure, but definitely manageable.

So far, 2010 has not been kind to him as he has been in extreme pain for much of it. The recurring pain in the butt has moved in and seems determined to remain a permanent but unwelcome guest. He's had the usual battery of tests, scans and X-rays. There was an initial diagnosis of inflammation of the sacro-iliac joint in his left hip. A cortisone injection from his doctor seemed to do the trick and hold him for a good amount of time.

During the summer, his pain level did a sharp spike. I noticed he was stooped and limping. It was painful for him, I'm sure, but he didn't know how painful it was for me to watch him in such agony. Being no stranger to pain, I considered myself somewhat of an expert. Unfortunately, my expertise lay in the role of sufferer rather than one who could actually banish the pain. With my medical past and the fairly recent onset of fibromyalgia, I considered myself a professional patient. I would have taken the pain from him and bore it myself if I could. I was used to it. Pain ruled my world. At times, black humour surfaced as we joked about him 'stealing' from my pain meds stash. We had suddenly become a tag team of suffering.

His back continued to worsen and his pain increased significantly. While this was happening, my fibromyalgia pain had become virtually non-existent, courtesy of the Bu-Trans pain patch. I was becoming stronger as my pain was effectively managed yet I watched my husband deteriorate. Was this a sick cosmic joke, I wondered? This wasn't the way things were supposed to be.

Today, I watched my husband use a cane for the first time.

I realize there are many people out there that have more tragic circumstances than we do. It could be much worse - at least I still have my husband. True. But I was not prepared to watch him limp painfully, bent and trembling, with a cane in hand. I know why the expression 'choked up' came about. It was late evening and we had gone for a short walk to the mailbox. He couldn't see the tears in my eyes. I had a lump in my throat and I was definitely choked watching him struggle to walk, sighing deeply with pain. He is the strong one. He is the healthy one. This wasn't supposed to happen. It's not fair. I had finally become healthy enough to re-join life only to find him suddenly and unexpectedly disabled. I had just assumed that he would be there, hale and hardy once I became well again. But it didn't happen that way at all. What was to become of the late-night strolls that we once enjoyed and the many other activities we did together?

At present, my husband is very limited in what he can do. He is in chronic pain and it would seem that a cruel role reversal has taken place. We don't have a diagnosis yet or the luxury of knowing if this to be our permanent way of life. Even if his current disability is temporary, it has been a loss, nonetheless. A large chunk of this year has been fraught with physical and emotional anguish. Until recently, I didn't recognize that the desperate, constant worry and anxiety I've been feeling was grief. But that's exactly what it is.

I wish I had learned to mow the lawn.

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