There is an episode of Bones where she ends up in court working for the prosecution while her former professor and lover, Michael, is testifying for the defence. At one point Michael states that “people who need to relieve physical pain will stop after the pain disappears. It doesn't take more than an average dose to accomplish that” however Brennan contradicts this, stating that “Sometimes intense chronic pain does not respond to medication”. This is the interaction that always stayed with me from that episode, yes, Brennan’s on the stand breakdown was dramatic and heartbreaking but this simple interaction early on in the case is the moment I cling too. Sometimes no matter what you do and how prepared you are it is impossible to escape the pain.
One of the first things I was told after my EDS diagnosis was that prevention is better than ‘cure’. As far as pain goes it is highly likely if not certain that a degree of pain will be felt all day every day. The trick is in distinguishing the type of pain, there are the general achy, arthritic pains brought about by extensive and consistent damage to the joint and surrounding structures. These are often the easiest to ignore during the day but the hardest to beat when tired or ill. Then you have the post traumatic soft tissue pain, this kind of pain comes in many guises, almost as many as the types of dislocations that causes them. These often require immediate attention and a variety of treatment options, many of which do not involve drug therapies. However the most significant pains are the hot, stabbing, achy, nauseating pains that signify a major problem, these are the ones which most often fall into Brennan’s ‘intense chronic pain’ bracket.
Regardless of what kind of pain you are experiencing with EDS the general advice is the same. Stay on top of the pain! Don’t let pride or stubbornness or fear of showing weakness or of attracting the judgement of others prevent you from catching that pain early and keeping it under control. Roughly 90% of the time this approach works but what do you do the other 10% of the time? Well the last three days have given me plenty of practice, from pretending things are ok really to carrying on through the pain to giving in and resting completely to the final solution of retreating into my shell and curling up in a ball with something to hug tight. Some of these tactics work better than others; some have the unfortunate side effect of upsetting those around you and some leave you stuck in an introspective spiral.
I guess what I am saying is that sometimes pain really is just pain. No matter how prepared you are or how early you catch or treat it sometimes it just doesn’t help. Pain is just a part of my life that I will have to deal with and have been dealing with for as long as I can remember (the severe leg pain that was diagnosed as from muscle fatigue from hyperactive behaviour to growing pains-which is both comical and insulting: constant night time leg pain from age 2-11 should have got me closer to 7ft rather than my puny 5ft!). The thing is that there is no cure and I will always have pain but I will NOT be defined by that pain, I have to accept it and treat it but that is all it gets to take from me. Some days it really is hard to get out of bed because of the pain but there are many people who find it equally hard to get out of bed due to depression. So today, one of the worst days for a while, I accepted and treated the pain. I rested but also went outside and did things. I shut down and hid for a while but I also communicated and tried to help at other times.
Today I feel like pain won a little more ground than I would have liked but I made it through. I did what I needed to do to get through and while it is still not responding to the strongest cocktail of drugs I can use writing this has got me through to the point where I can take more morphine. So yes pain, today you won but so did I, this fight can go on as long as you like but I will not be beaten (and if it looks like you are gaining too much ground I can call on several people who are better than any drug or treatment out there and with their help I will beat you. One day at a time.)
p.s. a description of EDS will follow but right now morphine and bed are calling.
One of the first things I was told after my EDS diagnosis was that prevention is better than ‘cure’. As far as pain goes it is highly likely if not certain that a degree of pain will be felt all day every day. The trick is in distinguishing the type of pain, there are the general achy, arthritic pains brought about by extensive and consistent damage to the joint and surrounding structures. These are often the easiest to ignore during the day but the hardest to beat when tired or ill. Then you have the post traumatic soft tissue pain, this kind of pain comes in many guises, almost as many as the types of dislocations that causes them. These often require immediate attention and a variety of treatment options, many of which do not involve drug therapies. However the most significant pains are the hot, stabbing, achy, nauseating pains that signify a major problem, these are the ones which most often fall into Brennan’s ‘intense chronic pain’ bracket.
Regardless of what kind of pain you are experiencing with EDS the general advice is the same. Stay on top of the pain! Don’t let pride or stubbornness or fear of showing weakness or of attracting the judgement of others prevent you from catching that pain early and keeping it under control. Roughly 90% of the time this approach works but what do you do the other 10% of the time? Well the last three days have given me plenty of practice, from pretending things are ok really to carrying on through the pain to giving in and resting completely to the final solution of retreating into my shell and curling up in a ball with something to hug tight. Some of these tactics work better than others; some have the unfortunate side effect of upsetting those around you and some leave you stuck in an introspective spiral.
I guess what I am saying is that sometimes pain really is just pain. No matter how prepared you are or how early you catch or treat it sometimes it just doesn’t help. Pain is just a part of my life that I will have to deal with and have been dealing with for as long as I can remember (the severe leg pain that was diagnosed as from muscle fatigue from hyperactive behaviour to growing pains-which is both comical and insulting: constant night time leg pain from age 2-11 should have got me closer to 7ft rather than my puny 5ft!). The thing is that there is no cure and I will always have pain but I will NOT be defined by that pain, I have to accept it and treat it but that is all it gets to take from me. Some days it really is hard to get out of bed because of the pain but there are many people who find it equally hard to get out of bed due to depression. So today, one of the worst days for a while, I accepted and treated the pain. I rested but also went outside and did things. I shut down and hid for a while but I also communicated and tried to help at other times.
Today I feel like pain won a little more ground than I would have liked but I made it through. I did what I needed to do to get through and while it is still not responding to the strongest cocktail of drugs I can use writing this has got me through to the point where I can take more morphine. So yes pain, today you won but so did I, this fight can go on as long as you like but I will not be beaten (and if it looks like you are gaining too much ground I can call on several people who are better than any drug or treatment out there and with their help I will beat you. One day at a time.)
p.s. a description of EDS will follow but right now morphine and bed are calling.
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