Bend or Break: An Ehlers-Danlos Syndrome Blog : The Talk

As the Ted x Talk date drew closer I practiced more and more often. Eventually I was able to read it by just glancing at my q cards every few sentences. Early on in the writing process I had said my speech was 15 minutes long and eventually it grew to 17 minutes but there was a miscommunication and a week before the talk I was told it needed to be 10 minutes tops. That wasn’t manageable without almost completely rewriting it but I was able to shorten it back down to 15 minutes and they thankfully accepted that as an exception. In terms of how it actually went there have been delays in getting the video uploaded so for now I have to go off what those in the audience have told me. Many friends and family came, even my old high school staff. Everyone, even total strangers, unanimously told me it went great. There were other talks, and let’s just say that some were far better than others. One entrepreneur kept calling himself a visionary. He had a 6 am flight the next day and was slated as last to speak so I did him a favour and switched places with him. Not all the staff knew about this switch so the speaker who went second last said to the audience before she started “I’m the last speaker so everybody wake up!” I shouted from the audience, “Second last!” and then started getting ready.

The plan was for them to grab a chair for me but because of the switch I had to rush to do it myself and grab water etc. The hurrying around made me lose my breath a bit but I didn’t notice until after I had already started the speech or I would have waited 30 seconds. At the time I was so certain that it was very noticeable but I found out afterwards virtually no one noticed. Within a minute I had caught my breath and managed a steady pace. I was actually very nervous since I’d never bared my soul to strangers before like that and a lot of effort went into not letting that anxiety distort my voice and I succeeded in that and a few minutes into the speech I felt completely at ease, speaking in a friendly manner.

The one thing the nerves did affect was how often I looked at the notes. It wasn’t bad at all but was certainly not as good as I was when practicing. I still looked into the audience plenty and couldn’t help but notice the awed looks on people’s faces as I got to the more juicy bits of my past. Some looked incredulous that my seemingly healthy self has had to deal with so much medical shit, but the entire audience was captivated. I was too distracted to notice but I was told a good number of people gave me the only standing ovation of the night. I had a dozen strangers come up to me afterwards to thank me for giving the speech because of how helpful it is for awareness. One man had chronic pain of his own and said he’s always tried to put his thoughts into words but that I perfectly conveyed our shared plight. Overall it was an amazing opportunity and experience to have, this is the best possible way to improve my public speaking abilities which is crucial for both lawyers and politicians.

Giving the Ted Talk was uplifting but this was still a difficult time period. For years my allergy to my own sweat had been steadily worsening. It had gotten to the point where it was having a huge impact on my happiness. Here’s a message I sent while venting: “This sweat allergy thing is one of the worst things that’s ever happened to me. It feels like getting stung by 1000 bees at the same time every second all over your entire body for 30 minutes straight. The rashes have been getting more visible. At its worst it looks like I have the chickenpox and when the pain finally recedes the relief is orgasmic. It’s still too soon to judge the effectiveness of the antihistamines I’ve been given. Since the attacks last the same amount of time as it takes for the medications to work I can’t tell which is the reason for it stopping. It used to only happen when I played nerf or was in Mexico but now it happens when the room is just slightly too hot. My bathroom is the hottest part of the house and going in there for 30 seconds triggers it, even in the winter. The tiniest amount of sweat is all of a sudden a huge deal. During an attack I can’t think about anything else until it ends. I’ve started keeping me windows open. The triggering threshold is so tiny that the pain makes me realize I’m sweating far before I would realize on my own. At this point it feels like I get a new symptom every month. How the fuck am I supposed to stay sane if every time I become able to cope with a new issue they move the damned goalpost by introducing another one.” This is all on top of my leg pain continuing to get worse. I’m often told to keep the tap running before drinking from it but now it’s at the point I’m often not willing to wait standing for even a few extra seconds.

Another treatment plan recommended by my doctor is in the pipeline: nerve blocks. He’s had them himself for his own leg pain to great effect. I’m a lot more hopeful about ketamine because my issues aren’t limited to a single nerve and are more musculoskeletal than neurological. If in say 5 years none of these options help at all I’d honestly start wondering about things like amputation. I’d rather have prosthetic legs and have no pain and be able to sleep at night then continuing the worsening status quo. More problems keep arising. I tore a muscle by my knee despite no recent activity. It weirdly got worse even when I’d strain my upper body like going to pee and caused a nice big tender bruise. There are things encouraging me to stay hopeful. Recently someone made an anonymous $1 million dollar donation to research my specific type of EDS.

Until the recent past, when I needed to wake up early for something important I’d sacrifice a few days waking up a few hours earlier each day to get ready. I’d let myself sleep for 5 hours tops and force myself to stay awake without napping. Now even if I sleep 9 hours I risk accidentally napping since the increased pain has further worsened sleeping. As a result my only real option is doing the opposite of what I used to, waking up as late as possible each day until the clock reaches a normal wakeup time. This strategy has the downside of making me nocturnal for about 1/3 of my nights which is why my Facebook friends notice I’m awake at such odd times.

This new strategy of sleeping in later every day has revealed my sleep issues are even weirder than I realized before. I somehow (due to pain) manage to get very behind in sleep without feeling sleepy. I get more and more tired and I get heavy bags under my eyes while it feels like I haven’t slept in days in terms of how my head felt. Yet I’m not sleepy at all and so end up being involuntarily awake for literally 30 hours.

Being behind in sleep also causes gastro issues even though I’m not sleepy, just extremely tired from being behind. I get allodynia (sensation wrongly registered as pain) on my face which causes me to do odd things. If you see my hand kind of resting on my cheek with my palm facing away that’s a sure-fire way of knowing I’m extremely uncomfortable from exhaustion induced allodynia. It gets so bad sometimes I can’t wear my headphones to distract myself from how bad it is. It’s weird but I do this because just lightly touching my face gives me a feeling to focus on other than the pain and exhaustion. This typically only starts to occur when I’ve been awake for more than 22 hours. Basically I get all the symptoms of being exhausted except the sleepiness and when I finally do fall asleep I need to sleep for 18 hours. It wasn’t very long ago I only needed 10 hours tops to function well. Either there’s something very strange and hidden about the way my brain works or my pain is just so bad it completely negates any hope of feeling sleepy in a reasonable timeframe due to the increased alertness response. Due to the fact I’m only able to be productive for the first 12 hours I’m awake maximum, this means my productivity window has become even tinier than before. Otherwise it’d be like trying to write an essay while you have a severe migraine; it’s just not possible.

All this means that I’m awake but too tired to concentrate for at least 18 hours. Then I fall asleep for another 18 hours and obviously can’t work then either. After that you have to factor in the days of constant doctor appointments and of course taking time to eat something. I just have no time to get anything done anymore so if I don’t get something to improve my situation (ketamine pills hopefully) in time for the next semester I’ll have to temporarily drop out of university. In my very first semester at the University of Guelph I was almost able to manage 3 courses at a time but could easily do 2. Now I can barely do one, the only reason I’m able to finish one course in my 4^th semester is because I saw this coming and so worked my ass off in the first month of the semester while I still had the chance. For the rest of the hours when I can’t concentrate it would seem like I have a huge amount of free time and while that’s technically true, it’s not really free if all you can do is watch TV or lie in bed awake. All I want to do is fast forward to the next day.

I of course won’t be able to go to summer camp for the first time since 2005. Even if my sleep improved I worry my sweat allergy would prevent me from going. I’ll just have to wait for the weather to get warmer to see how that plays out. For now this whole volatile sleep pattern is very disorienting. It’s hard to remember when you last showered or brushed your teeth when you’re awake for 30 hours instead of 14. To optimize the situation every night I have to try to do really annoying math to figure out when to take my first, third, and second set of pills, when to try to go to bed, and when to set my alarm to wake up. It’s simple plus or minus math but when you’re exhausted and heavily medicated with sedatives it becomes very hard and headache inducing. I’d try to make educated guesses based on how I was feeling in figuring out how long I’ll likely be awake. The tricky part is planning things out several days in advance because of some important event I need to wake up at a specific time for. I have to make a chart that says “If I go to sleep now I’ll probably wake up then tomorrow. Based on how much sleep I’ll be getting I’ll probably be too alert to fall asleep for this long that night. Then I have to do the same thing for the next day and the next day.” The worst part is you can make flawless decisions and still get screwed when god gives you the middle finger and causes unpredictable pain spikes or my medications decide to go on strike and stop doing their job for a while. I basically need to be far more incapacitated to sleep now even relative to myself a few years ago.

My medication cocktail needs to give me essentially total cognitive and sensory deprivation to allow me to sleep through the pain. If I can even attempt to form a coherent thought then I won’t ‘Fall asleep’ which is why I don’t like to say ‘fall asleep.’ In actuality my meds just knock me out. I might as well be in a coma again at that point. When I finally have a good day I often get angry because I can’t help but think to myself how much I would accomplish if every day was like this. Honestly studying 12 hours on a good day is way easier than studying half an hour on a bad day.

These aren't even half the needles I got for my allergy test.

This is a pain scale I found that I think is 100% accurate. My pain now never goes below 8 and during the worst pain spikes it goes up to 9. I'd say 9.5 is like being tortured by the CIA and 10 is being set on fire so it's quite insane that I get to 9.