A Sleep System

      Kid Waking up   

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    This is a kid waking up to a new life following surgery. After seeing something like this I can't help but be hopeful I will one day be in this situation. I wouldn't be my honest self if I didn't admit I also have to suppress envious feelings of those who have the ability to fix their chronic pain by having a surgery, it would make things a lot simpler. Whenever I think about a day where my pain ends I don't know what to do with myself so I'll often just bury my head in my arms lying on my desk while just sitting there for a few minutes to bring myself back to the present. I know with a condition like mine treatment even in the  distant future won't be an instantaneous thing. Medications will slowly improve, there will be stronger pills with less dangerous side effects. As we learn more about EDS it's likely more surgical options will open up. I won't wake up one day with all my pain gone but I have to believe I'll get there in an extremely gradual process. I have already experienced a tiny fraction of this outcome a couple of times. Whenever I'm given general anesthesia I wake up free of pain which then slowly returned over the next 15 minutes. That's a moment to cherish so I still have a video someone took of me pain free floating around Facebook somewhere. You can't imagine lying there in bliss knowing it's all going to come crashing down again very quickly. I often wonder if it's better to have your pain taken away for a few minutes only for it to come back again rather than the pain being constant. Either way, I think it's an important experience; it reminds me that there are even now ways of making pain go away. I just have to try and hold out until they can do so permanently 

This is a conversation I had with a friend explaining the sleep system I developed to maximize my chances of having a decent night's sleep:

           Anyone that goes to summer camp with me knows that I was a frequent target for teasing. Let me be clear though, it was lovable teasing, not bullying. Tickling and whatnot. The main difference is that I am confident I could have put a stop to it at any time if I got serious about it. I don't want to do that and look back on those exchanges with positive feelings because this started happening in 2008, which was a year before my pain started. When I think back on all the teasing I associate it with time where I felt healthy. This is especially true because I'm unable to tell if the craziness stopped because we grew out of it or because when my medical issues became prominent people keep their distance out of fear of hurting me due to false expectations of fragility. The only thing that has a massive impact on my pain is how long I've been on my feet rather than sitting down, along with the natural uncontrollable fluctuations. What I do while standing up is mostly irrelevant unless it's a high impact action like jumping or running. For example, carrying a duffel bag for 5 minutes isn't that much more painful to me as simply walking 5 minutes. I look back at myself and see someone that appears perfectly healthy so of course people would be comfortable teasing me as a healthy kid. In essence, It's a pretty nostalgic time period. Whenever those memories pop into my head I both smile and shake my head at the same time. A smile because I associate it with good health, a head shake at the sheer incredulity of how much stuff went down. For my non campy friends, picture this scenario. There's an age group of what seriously felt like 23 teenage girls and no boys. I became the first boy to join that group. I think it's fair to say one of the teams was just a little teeny weeny stacked. (That team being me of course.) Not actually though, just did my best against overwhelming odds. ¯\_(ツ)_/¯ The amount of stories from that time I remember is ridiculous. I should probably write them down somewhere, oh the memories. Could tell some funny ones but this is a medical blog so I should probably try to stay on topic. Feel free to message me if you have a preference either way and I shall definitely take it into account.   I guess the most appealing part of those past days is how relatively care free it was. If the biggest thing I had to worry about back then was avoiding tickling it's a pretty good life. Times change and I'd hate for people to treat me differently because of my medical issues (with some major obvious exceptions of course. I often need extra help getting around and don't want people to be mad if I have to cancel plans for example.)

    The pain spike was pretty unbearable on its own but it was made even worse from unfortunate circumstances. I had sinusitis since for half a year which was finally starting to clear up. The headaches were absolutely torturous, they got worse when you lean forward or strain to do anything. The doctor has said mine was initially very severe. We tried several nasal sprays, each one stronger than the last. It could just be coincidence but the strongest spray he had might have helped a lot. Went in for a nasal scan a shortly aferward and there was just a bit of gunk left in my head but it's not infected and is shrinking. Then there's the opioid issue. I had been taking codeine every day for half a year so the tolerance very likely made it useless by that point. We got the replacement as I mentioned in the last post and would have taken only one codeine pill instead of two to minimize withdrawal symptoms. The problem is I noticed the new pain pills were making breathing rather laborious so we couldn't risk taking the codeine because I'd be screwed if I stopped breathing in the middle of then night. This resulted in me having to stop codeine cold turkey while the 9/10 pain spike was happening so it was quite the recipe for disaster. I'm glad that even on on my absolute worst days I don't destroy anything. I don't smash stuff as an outlet, I expend pent up energy by doing harmless things like slamming my sweater onto my bed or pounding on my desk. I was still up until 4 am because of the pain even though I was exhausted from a crap sleep the previous night. Blessedly my pain is returning to its usual 8/10 levels and pain spikes such as the one pictured a few days ago only seem to happen a couple of times a year. It's not like I'm in that state every time I have to cancel plans. It's simply far more uncomfortable than people might realize.

The Bad Days

A quote from someone else with EDS:

                                                                                                                     

"I’m faking being sick? You must be confused because what I’m actually doing is faking being well. I don’t always talk about all my symptoms, I don’t always admit when I'm not feeling well and I often put on a happy face because it’s just easier that way. Any idiot can fake being sick, it takes real talent to fake being well."

"Insomnia sufferers look on the bright side, only 3 more sleeps till Christmas."

      The sinusitis continued to stubbornly refuse to go away. I went back to the nose doctor several times and each time he gave me a stronger spray. After using the strongest nasal spray he had for a few days I noticed some improvements in the headache but I was still constantly sneezing. Eventually I had a nasal scan done to get a better look at what's going on. My sleep doctor mentioned that he too suffered from Sinusitis while he himself also has a chronic pain condition. Despite that he said the sinusitis headaches were one of the most uncomfortable experiences of his life.

   It's become a rarity but on certain occasions someone tries to venture themselves as an inspiration for me by bragging about their own medical achievements, especially relative to mine. A relative called me and said I should be strong like them. They like to remind me how old they are with the implication being they are way older yet doing better than I am. He even said he's not trying to belittle me but that's exactly what he was doing. Funnily enough, as part of the boasting, they told me I have"no idea how many pills," he has to take. I'm pretty certain I take more but it shouldn't be a competition. I take up to 20 per night. When I mentioned I had just woken up they told me I "can't just lie in bell and waste the day away," without having the slightest clue what was going on at the time. That day was actually a massive improvement, I had woken up at 10:15 am. I went from waking up at 4:30 pm to 1 pm and then 10:15 am in the span of 3 days. It was torturous because lack of sleep worsens my pain. I had to put up with the same kind of crap from others before I got my diagnosis but I refused to stand for that any longer. Some people just really don't get it.

   My dad and I talked to the doctors at the nascent EDS clinic and they expressed interest in using me for studies to find out why medication hardly affects me. Even Xyrem, the synthetic version of the date rape drug, had absolutely no sedating effect. It's supposed to knock you out cold in 60 seconds. The clinic was still in the patient acquisition phase and they expected to begin research in August. Unfortunately they informed me that two out of three of my referrals will have a waiting list of 6-8 months. Only the least important one will go through any time soon.

    I also saw my neurologist for the first time in half a year who prescribed a topical analgesic cream but my pain is far too deep for that since its musclo-skeletal. It's not my bones or muscles that hurt, it's the tissue that connects them together. So the worst of my pain goes down in a line at the back of my legs which on top of aching also feels like there are little knives all along in each tissue cell of that line. This is because people with EDS often have micro-tears on a microscopic level. The medical marijuana helps me ignore it but using it every night leads to funny scenarios like my vaporizer screen falling off causing me to suck in a mouthful of herb. Tasted as gross at it sounds.  

   I'm starting to realize that a couple of times a year I seem to get some form of a massive pain spike for no particular reason, just part of the fluctuations with EDS but to an insane degree. My pain is really bad at the best of times so when I say a massive pain spike I'm talking 9/10 on the pain scale or higher. 10 is the highest pain I can imagine, like being doused in gasoline and ignited. 9.5 would be some CIA agent methodically torturing me. A few days ago my pain was at 9. It's usually 7.75-8. It resulted in nights like this.

    Some of you might be a bit shocked to see this but should you really be? Those days where we had plans but I had to cancel, those days you noticed I didn't make it to class, those days I seem more irritable than usual over Facebook are days I'm in incredible pain and so I shut myself in my room and stay there until it passes. This means only my immediate family truly knows how bad my worst days are. While I have more bad nights than good thankfully the situation the picture depicts happens around twice a year. This isn't very reassuring though because every time it happens I'm terrified it will stay that way and never get back to 'normal.' It's not particularly likely but not unheard of in people with EDS. This is after years of my pain tolerance continuing to rise so I'm confident if someone healthy were to suddenly have what I consider a 9/10 level of pain they'd be screaming rather than crying. The whole ordeal has left me a bit depressed because when the pain becomes that unbearable I inevitably begin to develop suicidal ideation again. The pain is starting to recede so those thoughts are going away but I have had a rude reminder of my own mortality. I understand that there are many things to try before ever going through with that. I can try stronger unorthodox painkillers again until it passes, I can go to the emergency room, hell I'd even try amputating my own damn legs if it is indeed micro-tears causing my pain. I think most would agree it's better to be in a wheelchair than dead. 

    My neurologist wants to try ketamine infusions when I get back to camp. Point is, there are still things left to try. My family doctor prescribed an opoioid called nucynta which is stronger than tramadol but weaker than morphine. It's going to replace codeine because since I'd been taking codeine every day for almost a year the tolerance has probably made it useless. Jury is still out on how useful it will prove to be. I will have to be very careful though because it can cause life threatening serotonin syndrome which I've already experienced two too many times as well as dangerous respiration suppression. Of course, once again, I wasn't warned about these things from the doctors. I looked it up online and confirmed with them after. It will be up to me to monitor any change in symptoms.