Where's that Flintstones Chewable Morphine at?

      I know I literally just said I don't like talking about my pain and now here I am doing a post on pain. I decided I felt like it was an important enough aspect of me and EDS and since I don't often talk about it, awareness month might be a good time for that. So here goes!

#spoonielife

       I can not remember not being in pain, there may have been times where that has been the case but I thought I was normal until middle school (diagnosis backstory here). Nowadays, most of my chronic pain comes in one or all of the following forms: muscular (spasms, tears, fatigue and irritation from subluxations and dislocations), joint movements (subluxations and dislocations), mostly constant dull all over pain (I'm sure its a sign of being a demi-zebracorn?!), migraines (light sensistivity, eye strain, post-concussive issues, cervical spine subluxations, cerebrospinal fluid blockages, Chiari, position of the earth and sun, stress, lack of "good" sleep), GI pain (digestive tract paralysis, gastroparesis, mast cell activation in gut (MCAD) ), and other. Between allergies, MCAD sensitivities and Long QT Syndrome restrictions the only pain medication I can take is morphine and it gives me a lot of strange symptoms so I avoid it unless absolutely necessary. Pain management in EDS is almost always complicated due to the varying types of pain, comorbid conditions (including other pain disorders such as fibromyalgia), and severity and chronic nature of the pain. Because every case of EDS is different, what works for one might not work for another. I have zebra friends who manage pain with essential oils, some with opiates, some with PT and yoga, some with sheer willpower... everyone is different. 

      As EDS is a mostly invisible illness, people I meet and befriend are often shocked that I am in pain. I have learned to hide it well and have learned exactly how far I can push myself before the pain becomes too bad (though sometimes I totally disregard that knowledge). I really dislike that pain scale but on a good day I usually average a 5-6 and bad days a 8-9.5 for people who that means something to. Even well managed, pain effects your whole body, mind, and life. It does not have to control it, but it is a huge part of it. 

      Another thing I find people have a hard time understanding is the fluctuations or flare ups of chronic illnesses/chronic pain. This runs many into questions like "I saw you walking yesterday...why are you in a wheelchair now?" or "But last week you could unload the dishwasher, I saw you do it...are you just trying to get out of doing it?". These questions can be prefaced either judgmentally or curiosity but are hard to deal with over and over again, especially on high pain days. Additionally, many of us face invalidation from medical professionals that impact our reactions and instincts, further complicating things. In my experience, leading a comment or question with "I want to understand but I'm confused..." usually gets a better reaction. Pain can be very isolating and can make us say or do things we don't like. Pain sucks guys. DUH. 

May the forth be with you all and beware of the revenge of the sixth!

"Falling Behind"

I'm a junior in college.
Actually, well, I should be a junior in college.
I'm actually a sophomore in college by credits, junior by age and semesters.
But I'm catching up!
          No, actually I'm not. Still chugging away at what feels like a cruise controlled speed. Chugging away at the arbitrary set number of hours you must sit in school until deemed "educated". And I'm readily becoming more and more frustrated trying to arrange class schedules, accumulate credits in any way possible, and get a good enough grade so that I can move on. GMU has this nifty program called Degree Works that takes your credits and tells you what you still need to graduate, which classes fill that requirement, which classes have qualifiers, ya get the drift. According to Degree Works, after almost 9 semesters now, I am officially half way.
          College is not friendly towards students with chronic illnesses. Despite many universities attempts to bridge the gap with programs like disability services, the odds are still stacked against you. Many classes will drop you if you have too many absences (sometimes even 1), regardless of your ability to keep up with the work. College is also a breeding ground for germs, poor eating and sleep habits, and stress. Being physically able to get out of bed is one thing, going to class another, and then absorbing it? How about homework? Most homework either involves reading, computer use, studying, or essay writing. Most of those tasks are near impossible when eye strain, fatigue, migraines, photo sensitivity, concentration issues, and other fun cognitive issues plague your daily life. Reading that may take most people 30 minutes takes an hour for me. While most college students become sleep deprived zombies around finals too, finals for students with chronic illness can be especially challenging. Most people get sick during finals but because the pressure is on, non-chronically ill students are more likely to go to class, despite being sick and often times, contagious. This puts those of us with weaker immune systems at risk for getting very sick during finals when we are already probably pushing our limits.
           All of this and more makes me look at that half way mark and want to cry, but not tears of joy. Finishing college seems impossible (all my family out there chill, I know its not impossible and I'm not dropping out). It makes me sad because before I got sick I was so excited about college. About life beyond school. About making a difference. Now I feel like that motivation and joy of education is being slowly stripped from me. I don't want it to be this way. I want college to matter, to be something I enjoy rather than just another constant struggle. I'm scared this fog in my brain will never clear. I'm okay with "falling behind" but I'm not okay with staying behind.