Today I sat and watched Paul sleeping for a long while. It’s not creepy because I am his wife, but anyone else it would have seemed quite disturbing. His eyelids not quite completely shut, the glassiness and redness peeking from underneath told me a great deal- he was completely relaxed and the taxing events of the last few days now a distant memory. I prayed a lot sitting by his bedside- usually just asking for healing, a better quality of life, a husband that can talk, walk, joke, play, do the dishes, hang the washing, drive a car, take me for a much needed date night, etc. This time, I prayed that he could just catch a break from the pain. Why is he always in pain? Physically exhausting him, emotionally draining me.
I guess if you have been in shoes like ours or similar, you know the feeling of watching someone you love in constant pain is like having your heart ripped out on a daily basis. Helplessness has become one of my staple emotions…nearly five years on and still struggling to manage.
Crippling pain for Paul came in short waves at first starting a couple of years ago. His body would tense up, his arms and legs stiffen, his mouth wide open and all communication methods went out the window. His eyes would be glazed over and wide yet with each episode I still asked him what was wrong? was he in pain? what is happening? fully well knowing I wasn’t going to get an answer. The episodes of pain would increase during the nights- we started calling them ‘spasms.’ The spasms started happening 1-5 times a night. I asked the doctor to investigate but all scans and X-rays came back clear. Even during one of Paul’s speech therapy sessions, Paul was asked to spell the location of his pain. He successfully spelt “back.” Yet everything was clear.
So this went on for over a year. I felt like a child lost in a giant shopping centre, waiting for my mum to come and rescue me from this nightmare. I had no idea who to turn to anymore; all the medical professionals seem to just feed him more drugs for spasticity, nerve pain, muscle tone. Then it became conversations about his position in his wheelchair, bed mattress, physiotherapy, back massages; we tried the lot but nothing was helping. We were missing something. I had never wished for Paul to speak more than I did at this time. I remember thinking why can’t you just try harder to tell me where the pain is? How can I help you if you can’t tell me anything? The frustration was wearing me down but it was nothing compared to what Paul was going through. Months and months went by; spams become so bad that he wouldn’t sleep all night- he was in constant pain. The carers and I worked out that giving him a TravaCalm tablet, used to prevent Paul’s motion sickness, helped calm the spasm but put him to sleep at the same time. Even then, the doctor’s couldn’t understand what it was about this particular drug that seemed to settle him down.
I asked Paul’s rehabilitation doctor what her thoughts were on medical cannabis. She was quick to dismiss the idea that it would be of any help for Paul. “This is usually something only Cancer patients use,” was her highly- uneducated- when- it- comes- to- marijuana- use response. The more research I did about cannabis and it’s therapeutic effects, the more I was determined to get my hand on some weed and work out a way to have Paul ingest it. When I spoke to Paul about it, his eyes lit up. Im fairly certain when I mentioned ‘getting some pot for pain relief’ his response, if he could verbally communicate it, would have been: “I don’t care who you have to sleep with to get it, don’t come back here until you do.” It was very evident that this was something he was eager to try.
Through some shady contacts, I managed to procure some of God’s healing herbs and with a little help from YouTube, turn it into butter. This butter was then given to Paul orally, in small amounts, a completely controlled environment and well documented.
Holy crap…it worked. It worked so good that out of sheer excitement I told his doctors, nurses, allied health professionals, family and friends and anyone who was interested to listen. I found the silver bullet! The answer to our prayers! Who knew all I had to do was get my husband stoned? His medical team were amazed (and probably a little relieved) at the revelation. I had 100% support from the professionals!
But it wasn’t long before the green goodness wasn’t able to hold the pain away any longer. I was back to being the lost child in the shopping centre again. More complications arose but I’ll tell you about it next time…
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