My doctor had warned me that the last week of coming off my meds would be the worst. Whilst pretty much bed-bound for a week, repeating my mantra in my head “Soon it will be over, it will be worth it, this too shall pass”, I understood what he meant. It had been a horrible week.
Once it was over I gave my body a few days respite before taking a deep breath and halving my pain meds dose. This was a move my doctor had agreed upon, but wasn’t overly thrilled by, he didn’t think it would last. This was all my idea, and this was something I wanted so badly. To be free from those narcotics that clouded my mind, free from those drugs that caused me to drift in and out of consciousness every time I was stationary for more than a minute. That was what I imagined bliss would feel like.
I felt the first reduction, but it wasn’t too bad. I felt nauseous, on edge, restless, but nothing too bad. The next reduction a week later, another halving, brought with it repeated vomiting, a lessening appetite, and pain. But the next week, that was the one that will be seared into my memory forever. It was time to ditch all pain meds, they told me to even leave off the paracetamol. For the first week I stopped eating, I kept minimal fluids down, I threw-up every thirty minutes or more, pain soared through my body, panic attacks plagued me, insomnia haunted me, depression returned, shakes and sweats took over, it felt as if my soul had been sucked out of my body. The only way I can describe it is living hell. There were two things that kept me going. God – I had no idea where he was, I couldn’t for the life of me find him, but I know he was holding on to me, squeezing me tight through that time. The second was my housemate. She sat up with me night after night, despite having to wake early to go to work, she would sit with me talking, being silent, singing, walking, telling me I could get through it.
That was just the first week. After those 7 days, things began to improve, slowly, very slowly. On day 8 I left the house for the first time. Hood up, coat wrapped tightly around me, housemate close by, ready to leave at the first moment it became too much. On day 10 I ate my first bit of food without vomiting. On day 14 my heart stopped racing so fast. It took 26 days to stabilize, the insomnia was the final thing to depart. After that it took a good couple of weeks to recover, to put back on the kilos I had lost, for my mind to calm and be still.
In that month it felt as if the hope that had been handed to me had been snatched away. I had to keep reminding myself that was I was experiencing was temporary. I was reminded how it felt to be really ill again. It reminded me that I really did not want to go back there as long as I could help it.
After that things changed dramatically. My health seemingly turned overnight. One moment I had been living a nightmare, the next I was feeling healthier than I had in years. I felt well, alert, like I had both physical and emotional energy, happy, low-levels of pain, just all-round healthy. Of course this had been building up slowly but because things had to get worse before they got better, it seemingly flipped over in an instant.
I had never even entertained the thought that I might one day be 100% medication free. I could hardly take it in. I had never imagined that I would feel as healthy as I did, I didn’t really know what to do. The new-found health was a big shock to me. As everyone around me rejoiced, I walked around in a state of shock. I was grateful, oh so very grateful, I was rejoicing, I was praising, but I was also walking around stunned, in shock, not able to grasp all that was happening, not able to process, overwhelmed by it all.
Join in the conversation.
Have you ever felt overwhelmed by your health?
Has change ever shocked you and left you stunned?
Do you find in life you have to remind yourself that the season you’re in is temporary?
Time had passed since the appointment that had left me feeling numb. Since health was dangled in front of me, just out of reach, but close enough to see. It had been months of agony as they took me off my medication and my body learnt how to function on it’s own again. At times the pain was so excruciating as my body failed to re-adjust and re-balance, I would lie in bed, morphine at my side, sick bowl ready for the wave of nausea that came with each movement inducing pain. Now it was almost all over, in a week all I would have left helping my body tick over would be pain killers. Apart from the misery that would ensure upon each dose lowering, I felt so much better. I felt stable. As I drove to the hospital that day I remembered back to 4 months previously when they had told me it was time to slowly stop me medications. It could go one of two ways. I felt confident I knew which way it had gone.
I sat in the consulting room, nurse beside me, specialist opposite, I sat playing with the bangle round my wrist waiting, anxious for him to speak. He had spent time discussing my well-being, examining me, reviewing test results, he said those words “You’re in full clinical remission, your scans show healing beyond that which I ever thought possible, it’s quite extraordinary. In fact you’ve healed so well I want to see how you go without any drugs, medication free” I was stunned. I knew how it had been possible, yet I was too stunned to speak out the praise God deserved. We discussed the pros and cons, and decided medication free was the way forward. We talked about my pain management. My pain levels were low I wanted to see how I would do without painkillers. He agreed to let me try. For over a year I had been on a constant supply on morphine delivered straight into my blood stream 24/7, topped up by extra doses of liquid morphine when needed. Stopping would not be easy. But not living in a hazy world would be worth it. We worked on a plan.
He summarized and finished with those words “Well, as you’re in full remission, with no medication, I’ll see you for a routine check-up in 6 months time.” That’s when I swallowed hard. I walked out of that little room, past the lady at the desk, and just made it through the double doors at the end of the corridor before I burst into tears. No they weren’t tears of joy. I went to the bathroom and sat in a cubicle and cried uncontrollably. I got in the elevator, still sobbing my heart out, such a mess was I that a stranger put their arm round me and told me to keep holding on. Waiting in line to pay for my carparking, tears streaming down my face, three people let me skip in front of them, they obviously though I needed to get out of there. I sat in my car and tried to pull myself together, enough, at least, to be able to see to drive home. The river flooding over my face, slowed down to a stream, and I took a deep breath and started home.
I only got half-way. I had to pull over. I parked up in a lay-by and wept once more. I knew these were not tears of joy or reief, but neither did I understand what they were of. I had received good news, why then did my heart feel heavy? I did the only thing I know how to when my heart aches and I have no understanding. I started talking to my saviour, calling on the name of Jesus. Asking my maker, the one who knows me better than I know myself, why? why the tears? why the heavy heart? As I spoke, I began to pour out my heart, and as I poured the tangle of confusion seemed to loosen, until the words came out. “I’m scared God.”
Scared? Scared of what? I hear you ask. I have faced many scary things in my life, surely this did not match up to those, surely this could not be put on that list. But it can be, it did match up to those. In truth I was terrified. Suddenly I was on my own. From weekly appointments to 6 months. No support of doctors, or nurses, or health care workers, just me. On my own. To navigate these illnesses. Alone. That was not all. In a moment my life had switched from being consumed and revolving around this thing called “disease” to having nothing to revolve around.
My fear was of something greater too. I had just been given a massive portion of hope, but what if it was wrongly handed out? What if it got crushed…. again. I felt I had something precious in my hands, and I was scared to break it. Scared to do anything with it incase it got damaged, or lost, or stolen. I was like the man who was given a talent and buried it. I wanted to bury my hope, at least then I’d still have it in tact, even if I gained nothing more.
I had to begin to re-build my life, and that was scary.
Let’s talk! I’d love to hear your voice.
Have you ever been given something great, and just felt scared?
Has fear ever overcome your joy?
What was your experience when you were told your health was much better?
It’s been brought to my attention that I’ve not blogged in a “pretty… well very… long time”. It’s true, and I’ve missed it, more than you know. I hope to get back to it soon. I have plenty to write, and many started, but unfinished, posts.
Until then I want to do something I don’t normally do. I don’t often write about my health, and I don’t normally give you updates, but many of you have been asking, and for once I feel I actually have something to say, and this is the easiest way of communicating it to all of you all over the world! For those of you who don’t care… Sorry, just skip ahead till the end :)
The past few months have been slow, and painful, and honestly not all that great, culminating in the past week, which has been like living a nightmare if I’m honest. Why? Because I’ve been coming off all my meds, finishing with all my narcotics this week. How? Slowly, and painfully.
It’s been hard, but God has been good and He has been faithful and been with me through it all, even in the toughest moments. So I sincerely thank you for all your prayers. You all are my Aarons, who hold my hands up when I can’t.
Now… I am totally medication free! (apart from paracetamol [Tylenol]) Wow…. it’s been a long long long time since I’ve said that. Years. I’m medication free! I’m not over all the effects yet. I’m still suffering a bit from withdrawal from the narcotics, and have promised myself several times over the past few days never again will I use strong pain meds, but we’ll wait to see what happens next time I’m in lots of pain! And my body is still getting back to normal in size and shape and functionings after such a long time on steroids. But we’re nearly there, and it’s good to be chemical free.
I went to see my specialist just over a week ago, and to fit a very long appointment into a nutshell… we’ve agreed that I will stay medication free and see how it goes. If I stay in remission for the next 6 months he will give me medical clearance to go back to work. If not… well we’ll deal with that when it comes!
So that’s it people. Enjoy your weekends.
I hope to be back with you soon. Now I have my body and mind back! :o)