In keeping with my previous post I am aspiring to care less about what people think of me and be truly honest about my experiences. I have made choices over years driven by my circumstance and a desire to ease my symptoms and in this post I will be brutally honest about the choices I’ve made looking for a magical cure for my condition.
I don’t know about anyone else but I grew up with the naive view that if you are sick, doctors can cure you and make you better again. I kept getting tonsillitis so doctors took them out. If I had an infection I would be given antibiotics. It seemed that whenever my parents took me to the doctors either the advice the doctor gave or medication they prescribed managed to fix what was wrong. So when I was first diagnosed with Reflex Sympathetic Dystrophy and the neurologist told me there was little hope of a cure I couldn’t compute that in any way. How can that be? You’re a doctor, you should be able to fix me. I’m only 18, that cannot be the only answer?
After some initial success from the first nerve block I received, the hope for some sort of cure was sky high every time I was offered a new infusion or drug to take. In the first few years I would have periods of remission, I had time when the pain was almost completely gone, I wouldn’t need my crutches and could go out dancing, go to the gym and not have to worry about ‘managing’ my condition. However, it never lasted long.
I have seen so many specialist over the years that I have completely lost count of the number of second opinions, scans, blood tests, nerve conduction studies, x-rays and MRI’s I’ve had over the years. Since I was diagnosed I have been prescribed an abundance of different medications. God, the hopes I have pinned on those little multi coloured little pills over the years. Would this be the miracle cure I have been praying for? From Gabapentin, Pregabalin, Diazepam, Topiramate, Amitriptyline, Lorazepam, Nortriptyline, Duloxetine, Diclofenac, Methocarbamol and Trimipramine. To the opioids Co-Codamol, Codine, Oramorph, Zomorph, Morphine, Tramadol and Tapentadol. These are just a selection of some of the medications I been prescribed over the years and they all have one thing in common, they never work long term. Coming to terms with this realisation has only been a recent awakening for me. I have always used medication to manage my illness so the concept that medication was no longer working was equal parts terrifying and liberating.
This recognition that the side effects of some of the medications I was taking were causing me a greater level of harm than the benefits or therapeutic effects (if any) I was gaining was hard to swallow. The balance was entirely off. This epiphany forced me to look more closely and another less than desirable coping technique I had turned to over the years. Weed, Marijuana, green, spliff, whatever you want to call it, became my treatment of choice. It always felt like a dirty little secret even though many people in my life knew about it and understood why I did it. Watching me writhing in pain then seeing the impact the weed would have and the relief it would give me. It was hard to argue with the benefit.
However, the downsides to smoking weed started to make me resent it. Like all the drugs I have taken it was never meant to be a long term solution and the negatives really started to outweigh the positives. Firstly I was smoking and we all know the impact that has on your health, so I’ll skip over that because I am not going to be one of ‘those’ ex-smokers. Next there is how it limits and rules how you live your life from waking up and feeling like you need that relief to not being about to sleep without being stoned.
I couldn’t smoke when I was working, couldn’t drive once I’d smoked and I was always worried about where I’d be able to smoke when I was out (it’s certainly not socially acceptable). Of course there’s the legal aspects which made travelling difficult (not exactly flight friendly), plus the impact it had on my mood and motivation, it would slow my mind and would make me an antisocial hermit. At times when I was at my lowest and wanted to pretend the rest of the world didn’t exist it made me numb and allowed me to hide from the emotional issues associated with my illness. It was like a comfort blanket, if I was stoned I didn’t have to deal with what was going on in my life I was in my own little bubble, I allowed that to happen for too long.
Last summer I made the decision that I wanted to focus on healthier ways to manage my illness, not to mention give up smoking! It has been a gradual process and I have in no way nailed it yet. I like to think of myself as a badass in training. I’m more dedicated to my physiotherapy mixed with Pilates, I’m using mindfulness meditation to help me relax when the pain is kicking my arse and I get to sleep when I can’t switch off my brain. The only medication I now take for my legs is Methocarbamol for the muscle spasms and I can honestly say I feel much better for it.
I haven’t smoked weed since August 2017 and haven’t smoked a cigarette since September. The weed was more difficult than the cigarettes to give up but a Medipen CBD vape pen has certainly helped me to cope but, I barely even use that anymore. And as for the evil cigs, Allen Carrs Easyway to Stop Smoking was the answer for me. I’m not going to be smug as it has only been 4 months but I genuinely have no interest in having a cigarette and I have dealt with all the usual temptations and not caved so I remain optimistic that I have beaten it this time.
I only work 4 days a week now which absolutely helps but can honestly say this is the best I have been coping for a long time. Apart from a longer flare up I suffered earlier in the year, since making these changes the worst has been two weeks I had to take off work. Other than that, it has been a few days here and there and I have been able to cope quite well and I do think that the Medipen has played a big role in that.
Coming off the drugs taught me that I have depths of resilience that I didn’t know I had. It has empowered me as I realised that, as much as the weed helped me deal with my pain, in many ways it just allowed me to just hide from it rather than face it head on. I have on occasion craved that feeling of numbness from both the physical and emotional pain. But I can now say proudly that I am a badass, I make pain my bitch, I am a god damn warrior and that’s not because I manage to mask my pain every day and power through no matter what. It’s because I listen to my body, I pace myself and focus on a healthier way to manage my pain. And even when it tries to get the better of me and pull me down into that dark place for fear, doubt and dread, I get back up, I always get my fight back and I never give up trying to live my version of a normal life.