“That’s the thing about pain, it demands to be felt.” – The Fault In Our Stars
When you live in this world, you cannot avoid pain. Pain is that uncomfortable sensation that manifests when your body and/or mind tries to tell you that something in the way you’re leading your life at the moment is not really conducive for it to thrive as it should. Pain comes in so many different forms that it would take me ages to sit here and attempt to define every kind of pain imaginable. It is nearly impossible! So to make things a lot easier for me, I’ll be using my own personal experience with pain to try and delve into this complex topic which has seemed to eclipse my life in the past year.
The sort of pain that I’m personally dealing with right now is a physical one. Till the year 2015, I had been relatively healthy. I mean, I sucked at sports in school, but was never a couch potato. I exercised at home all the time (remember those cut-out exercise routines Seventeen magazine used to have?) and even trained with the athletics team in high school just so I could keep fit (well, someone has to be brave enough to carry the title of last place!). I carried on with this enthusiasm even after high school and was dedicated to the exercise DVD that my Life Orientation teacher gave me on the last day of school. So it came as a surprise when all of a sudden, my body seemed to rebel against me.
It started small, with headaches and tiredness that came and went every time life got a little stressful. Quite normal, right? All you need is a nap and you are ready to take on the world again. Then the tiredness became more severe, turning into full-blown fatigue. At this point, naps were starting to lose their effectiveness, because I’d wake up just as tired as when I went to sleep. That’s the difference between tiredness and fatigue. A little rest can cure tiredness, as if it was never there in the first place. With fatigue, on the other hand, no matter how many times you rest, it never seems enough and it lingers on and on.
The headaches I was having soon became severe too. Instead of the usual pain that I felt on my forehead, I started feeling pain at the back of my head as well. This quickly spread to pain around my nose, cheeks, then ears. My jaw, chin and upper neck soon followed. This pain would creep up on me every time I did something important and stressful, like study or drive. I brushed it off as stress and anxiety, two things I have struggled with in the past, even though this pain was so unfamiliar.
At this point, my mom and I debated whether or not to get our doctor involved and decided that we should. My doctor, who was the only GP I ever had (we started seeing him when I was four years old) and whose advice I trusted like gospel, assumed it has sinus problems. Ok, cool. So I would just go home with my treatment and antibiotics in hand, take them as directed, and all will be fine, right? Wrong. The treatment seemed to work for some time, but then the pain returned, same as before. So back to the doctor I went and stronger sinus treatment was prescribed, but alas, the pain remained like the stench of mould in the kitchen after a rotten potato has been thrown away. It went on like this for a while: pain, doctor, stronger sinus treatment. I went through so many cycles of antibiotics!
My GP had now abandoned the “sinus issue” idea and decided to re-examine me again. He felt something irregular along my upper neck and scheduled me to get my tonsils removed, which has not so easy for a 20 year old. Above the age of 12, a person is considered too old to have a tonsillectomy. So you can only imagine the uncertainty and fear I felt! I asked him if this would get rid my facial pain and he just said that he hopes so.
After the tonsillectomy, I was expected to be ok again after two weeks of healing, according to the nurses. However, this body of mine took around three to four months to heal from that. I spend about one pain free week and then the facial pain returned. Now stronger than ever! It had evolved, somehow. Before the tonsillectomy, the pain was more of a throbbing pain, but after the tonsillectomy, the pain was now a burning pain. Like literal fire on my face! Now I was angry. False hope of healing has dangled in front me, only to spit in my face and let me deal with this all by myself.
I was then advised to see a neurosurgeon. The neurosurgeon suspected that there might be something wrong with the nerves that connect the base of my skull with the rest of my face and are responsible for the sensations our faces feel. So I was diagnosed with Trigeminal Neuralgia. I started treatment for TN for this did not work. Then I went for stronger TN treatment and that still didn’t work. This went on for some weeks until I booked for an infiltration. The infiltration was a procedure where a really long injection is inserted through the side of your cheek to eventually reach the nerves at the base of your skull in order to sedate the nerves so that when blood pumps through those nerves, I don’t feel pain. I only had the right side of my face injected because the neurosurgeon wanted to first test out if it would work before injecting the whole face. After the infiltration, I spent about two days without pain on that right side, only for the pain to return as if the infiltration never even happened. Yeah, I wasn’t just angry now, but frustrated.
My GP then decided to send me to a maxilo-facial, confident that he would be more qualified dealing with this than a neurosurgeon. The maxilo-facial blatantly stated that I had been misdiagnosed. According to me, I did not have the symptoms for TN, but rather a TMJ disorder. What this meant is that the temporomandibular joint (TMJ) that connects the jaw to the rest of the skull had some damage, causing the face pain. What caused the damage of my TMJ, especially on the right side, was suspected to be biting too hard on my teeth, mostly when I’m sleeping and stressed. The maxilo-facial put me on treatment, but also advised me to go see my dentist so he can make a bite guard that I would need to wear every time I sleep and when I’m not eating in order to limit the grinding of my teeth and create some space between the jaw and the skull. The TMJ treatment was not working, so eventually the maxilo-facial gave up and confessed that he has no idea what’s wrong with me.
Since no one in my real life was giving me the answers I needed, I turned to the internet. What I discovered is that the pain I have is similar to that of fibromyalgia, which is a disorder that causes limiting pain on a person’s muscles. According to the internet, a small percentage of people who suffer from fibromyalgia have facial fibromyalgia, which only affects the muscles in the face and neck, instead of all the other muscles in the body synonymous with normal fibromyalgia. This all made sense to me, so even though I haven’t been professionally diagnosed with this and therefore don’t have treatment for it, I have found comfort in this because maybe, just maybe, I am not the only one dealing with this somewhere in the world. I still wear my bite guard though, and it does help a bit.
Another thing I discovered on the internet was the term “spoonie”. This term was coined by writer Christine Miserandino in a post entitled “The Spoon Theory”. Miserandino came up with this one day when having dinner with a friend and the friend asked how it was like living with chronic pain. She replied with the theory, which demonstrates her ability to carry out daily tasks by counting spoons. According to the theory, we all wake up with a specific amount of spoons, which represent the tasks that need to be completed for the day. For someone with chronic pain, simple tasks like having the energy to get out of bed, take a shower, prepare breakfast, etc. limits the amounts of spoons we will have left at the end of the day. Before you know it, all your spoons are finished at it’s only 11am.
There is a whole online community of #spoonies and in a world where the people in my real life (and most of the time me too) may not understand my pain, I know my fellow #spoonies are with me, and I with them.