Tag: medication

Pain comes sweeping back

It’s just after five in the morning and I have been awake for more than an hour with pain that splits my body in two. I’m trying not to weep but I can’t stifle the tears.

I had been making progress, so I thought. I had started attending a new physio who emphasized that recovery was as much psychological as physical. She gave me some uncomplicated exercises to do and encouraged me to take less medication, stay up longer and engage more with people and with life. And I did. And I tried. And I thought I was making great strides – my colour was better, my weight up, my activity increased, my pill consumption down.

And then, literally overnight, the pain came surging back. I woke at 3am Saturday with pain in my hips and buttocks that I didn’t have before, and with my lower back feeling like a poker was buried in it. In a matter of hours the pain levels had gone from a livable with three/four to an uncopable with seven/eight. And the frustrating thing was I couldn’t understand why.  I tried to remember if I had done anything differently, if I had over or under exercised but I hadn’t. This enemy had simply attacked me again without forewarning or reason, and I was so disappointed. The pain in the hips has eased now, but my back is worse than ever.

I was going to forgo the surgery for the spinal cord stimulator, both because my new physio counseled against any more procedures and doubted it would help me a whole lot anyway, and because I really don’t want to subject my battered body to more trauma, but I am changing my mind. Pain has made my life miserable. It has left me unsure of what any day is going to bring. It has left me deeply unhappy. 

If the spinal cord stimulator doesn’t work, and this new physio regime turns out like the rest, then, as I’ve said so often before, please just let me go.

Another crushing hospital stay

After 12 days in hospital, I returned home on Saturday. Twelve days of disappointment, hope and, ultimately, despair. I am back in Limerick more broken than before I left it.

I had a reaction to the first drug they tried on me. It was being funnelled in through a little tube in the stomach area, but that area became inflamed and sore. They switched to an oral form of the drug. The pain eased slightly. I thought there was light at the end of the tunnel but after a couple of more days it became clear that this new drug was failing too. So, ever the optimist, the doc change me to another medicine, again to be taken orally. As they increased the strength of the drug every day, they reduced and finally eliminated the pills I was on. This new drug seemed only to be making me groggy, but I was hopeful that once I returned home, to my own environment, I would notice its positive effects.

Then I started being physically sick, throwing up the meds I had just taken. I was sleepy and nauseous, and all the time the back pain continued to burn me up as before. So, following a discussion with the doc yesterday, it was decided to abandon the new drug and return to my old one – the same ineffective one I was using before my fruitless hospital stay.

To say that I am disappointed is an understatement. I am crushed. The final option open to me is the spinal cord stimulator, but it could take a month before this happens. I want to have it because I will try anything to reduce my pain. And yet I am scared, because if it fails, there is nothing left. It will be the end of the road.

The doctor, like all the others I have dealt with in the past, started off full of easy optimism. “Eighty or 90 percent of people respond very well to such and such medication. We’ll get you sorted.” Then, when that med fails, he shrugs his shoulders and says, “Well, we’ll try this other one so. Up to 90% of people get great results from it, etc, etc.” And when that in turn fails, and I ask why it hasn’t worked for me, he says that I fit into that difficult tiny percentile of people who are unresponsive to various interventions. Which is so devastating to hear. The disappointment as much as the pain is killing me, literally. I’d rather docs didn’t offer false assurances but I suppose they have to be positive for the sake of their patients.

Two years ago I would not have believed that there were people in the so-called First World who had to live with chronic pain. I thought medicine had advanced enough to ensure that people did not have to suffer 24/7. But now I know that there is a vast community out there living with chronic pain, whose best hope is a few hours of relief every few months, if even that. I have increased empathy for people I see who are bent over or in clear physical distress. It is a lonely place to be.

I am 54, and I can’t imagine going on into pension or old age like this. I can’t remember what it is like to have no physical pain, to go to bed looking forward to the next day and not dreading it. The disappointment and the despair are killing me, even if the physical pain on its own won’t finish me off.

One devastating week

The last week has been hell. I don’t know what I did or why it happened, but there has been an incredible increase in pain (from a five out of ten to seven or eight out of ten) and I cannot cope. It’s as if the fusion has come loose or the graft has pulled away, except I’m sure it hasn’t. But something has happened that feels like a knife has been plunged into the base of my back and is shooting daggers down my legs. Strong medication doesn’t even temper it. 

I love life and I don’t want it to end, but the life I am living right now has no quality, no happiness or joy. There is only sadness and tears. I don’t want to live if this is what my life will be.

All I look forward to is being knocked out. My happiest moment of the day is when I take my sleeping pill. I know I will enjoy a few pain-free hours before the pain nags me awake again, and I have to endure another twenty four hours of misery. 

Though family, community and friends offer support and solidarity, I have nowhere to turn. The medics either don’t know what to do with me or probably consider me a crank. I feel lost and beaten. 

The last two years have seemed like twenty. In so many ways, my life ended two years ago, only I didn’t stop breathing and my heart kept beating. The only thing I am grateful for is that I was there for my dad at his end, and there for my mother in her grief.

I am tired of pain and constipation and doctors and pills and hospitals. I am tired of disappointment heaped on disappointment.

I am tired of moaning and whining and self-pity. 

I am tired.