I have become but skin and bone

I am fading away. For some time now, I have noticed that I’m losing weight, but, despite my best efforts, I can’t stop the pounds from falling off. I have never been overweight. At my heaviest, I’ve been about 12 stones, but today I weigh just a few pounds over nine stones or 131lbs. It’s not a healthy weight.

Some people with chronic pain put on weight due to lack of exercise. I am the opposite. My chronic pain is knocking the weight off of me.

I went to the swimming pool for the first time in months last week and was shocked to discover just how frail and skinny I have become. The water from the jet pool was too strong for me, it nearly blew me away. I could barely lift my legs to get out of the water. Though there were several older people in the pool, I felt the oldest and weakest of the lot. And the most frightened too.

It’s not that I don’t eat – I do. And I love sweet things. It’s just that I can retain nothing. Day by day, pills and pain are sucking the weight and the life out of me. 

If anyone knows a good way to increase weight, that doesn’t increase constipation, I’d be delighted to hear about it. Because not only are my clothes becoming too large for me, if I don’t build up some strength soon, it will be much harder to fight my way back to recovery.

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A God deaf to my appeals

I have written countless Gospel commentaries and preached countless homilies over the years and I have always done my best to offer them as Good News. Challenging, consoling, uplifting words.

But I am coming up short now.

Tomorrow’s readings are all about perseverance in prayer. Keep on knocking on the door, and eventually God will answer. Ask and it will be given to you. Seek and you will find. Knock and the door will be opened to you. For the one who asks always receives, the one who searches always finds; the one who knocks will have the door opened to them.

Except it’s not the case.

I have asked and I have sought and I have knocked – and there has been no response from on high. Many others have asked and sought and knocked on my behalf too – and have found only silence. Candles burning to the quick, prayers unheeded, the door left firmly closed. After two years of hell, my pain is more intense and more deeply rooted than ever. My despair beyond despair.

In my old pre-pain, preaching days, I would have found ways to explain or make sense of this silence from beyond. God will answer in God’s own good time, God knows what’s best for us, God’s ways are not our ways. 

Maybe that’s true, except that’s not what tomorrow’s readings promise. All I know from long, painful experience is that the God to whom I have dedicated my life has been dead to my appeals, and, whatever about miserable me, God has been dead to the appeals of my saintly mother and my aunts and of so many, many others.

All I am left with are tears. I’m not even sure that it’s worth my while screaming with the psalmist, “Out of the depths I cry to thee, O Lord,” for all I seem to encounter is the sound of silence.

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.

Hospital blues

I am now in hospital more than 24 hours. In terms of facilities, it couldn’t be better – spacious room, big tv, wonderful menus (I might add to my miserable 62kg weight), caring staff. A few days in this place would be a lovely break were it not for the reason I’m here, which is to try to calm my pain.

A line was inserted into my stomach yesterday. It carries a strong painkiller, which should begin to ease pain after a few hours. Alas, so far it has done nothing. The pain has not diminished. It’s as if the line had not been inserted at all.

Of course, there have been the usual reassurances – give it time, don’t panic, let’s see what happens over the next couple of days. I know all that, and yet it’s hard not to feel disappointed.

I know, too, that things could be worse. I have a cousin who has been in the same hospital bed for more than a year, and who displays extraordinary resilience. I marvel at his fortitude and determination. I must try to hold onto hope, even if I have always been a glass half empty person.

Back to hospital I go

It’s been a while since I blogged, mainly because there was nothing new to report.

Now, however, I am preparing to return to hospital. I will be going in on Monday and will remain for up to five days while they try a different drug out on me. If that doesn’t produce the desired results, then I will be getting a high velocity spinal cord stimulator, which, the consultant assured me, can reduce pain by up to sixty percent. This is an electrical device that disrupts pain signals.

It’s a slow process, though, and may take a couple of months before it is put in place. If I do end up with the stimulator, not only will I be screwed (I have seven screws in my back), I will also be wired as well. When I die, I might as well be sold for scrap.

So, I’m hoping that the journey I am about to take will be the one that brings me some comfort and hope.