"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.
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