Every three weeks may seem like a long time. Every three weeks you could check the oil in your car and every three weeks you could dust intensively. Every three weeks I drive from Colchester Vermont to Boston Massachusetts to receive steroid injections with a local anesthetic. I get shots in my lower and upper back, neck and head. Well, supposedly every three weeks. Over the years I have been able to go as long as seven weeks because the trip from Vermont to the Boston area is quite long. Even though I am able to space out the injection appointments, I pay the price by the end of the three weeks.
In 2014 I was diagnosed with a chronic headache disorder. No, it is not the same as a migraine. Yes, I do understand those are quite painful because I get those sometimes too. A chronic headache disorder is not so much of a diagnosis but a descriptive term that is usually defined as headaches occurring on fifteen or more days in a month for at least three months. I can confidently say that since February of eighth grade to today, I have had a headache every single day. By headache I do not mean ten out of ten, worst pain of my life; I mean on a scale of one to ten, it is usually a two or three. However, by the end of those three weeks the injections start to wear off and the real pain sets in.
Over the years, I have found that the pain is difficult to describe. By now, it is just there ALL the time. The pain causes difficulty falling asleep because it is a distraction and it is difficult to get up the next morning because there is pain due to the lack of sleep. Some days it is extremely difficult to get out of bed because even by moving a limb can cause endless waves of intense pain. Other times it is difficult to have an appetite because the pain causes nausea. The pain is not the only downside to having a chronic headache. I feel as though many do not understand the severity of this pain I am experiencing. My biggest pet peeve is when I have a bad day in regard to the pain and people around me point out that my “low energy” is bringing them down. Or when I comment on my head hurting and others reply with “me too” or “same.” It is very much NOT the same and I cannot emphasize that enough. I like to suffer in silence. I do not want people around me -who do not really know me- to know that I am suffering from a headache. I do not want to be seen as weak, so when I say my head hurts, it must be at least a seven out of ten type of pain. When I say my head HURTS, it most likely means “I am tired of this constant pain in my head and I am feeling hopeless because it just won’t go away.” I do not receive at least twenty-eight shots every month or so for you to “relate” to my pain.
Living with chronic pain is exhausting and it wears you down. It is awful and I would not wish it on anyone. Every decision I make, I have to think of what is best for my CHD. However, I have gained some pretty cool life skills from learning to cope with chronic pain. For example, I know myself well enough to know my limits. Because of this, I can easily expand my comfort zone. Another example is that I have a wicked high pain tolerance; I broke my wrist over the summer and went three weeks without getting it checked out because I did not believe it was broken. Lastly, I have learned to take each day as it is. Some days are better than others. When there are bad days I know that this pain cannot go on forever and I have learned how to be grateful for the good days.
*I would like to take into account that this is my story on what it is like to live with chronic pain. Everyone experiences pain in different ways and I do not want to belittle anyone who experiences any type of pain.