I Hate My Feelings

After I crossed the finish line of the 2018 Dwight Crum Pier-to-Pier Ocean Swim Race, I rinsed my goggles and headed to LAX to catch the red-eye to Toronto.

The flights to Canada do not depart from the International Terminal at LAX, as Canada is the 51st state. They depart from a lovely wing that also boards planes to Alaska, the 49th state. I was not impressed with the duty-free shopping, but other than that the terminal was lovely.

In the mad scramble to get to the starting line of the 2018 Dwight Crum Pier-to-Pier, I had not gotten my wetsuit on properly. The inside of the collar was folded over on itself. It chafed my neck the entire swim. I tried to fix it whilst I was plowing through the water like a champ but could not. I got a painful scab, that burned any time water or my hair touched it for the next two weeks. Ouch. The medical term for this is a wetsuit hickey.

No matter. I found true ❤️❤️❤️❤️❤️ in the departure lounge. Could I pet your dawg, puhleez?

We arrived in Toronto at 3:00 a.m. local time.

Toronto is fabulous.

Our hotel was built into Rogers Center, where the Toronto Blue Jays play. Go Clippers!

We breakfasted every morning on the ballpark and had drinks there at night. This was awesome. But I was very down. Profoundly.

I always flunk the depression screening test they offer you at your primary care visit. By that I mean I don’t even score high enough to finish filling it out. I finish filling it out anyway.

I have been diagnosed with dysthymia, which means I’m in a rather bad mood about everything. You might be too, if you were me. I keep it to myself. I have spent my life covering my pain, hiding all aspects of my disability as best as I could, which is not hard when you are home-bound sick.

I am a fan of the put your happy face on when you’re out in the world etiquette of earlier generations. If I walked around advertising my pain, that would not lead to fun. I resent it when people overwhelm me with their troubles, as I believe that is an intimacy to be earned. Let’s keep it light and fun, shall we?

In Toronto, I felt the heavy sadness that makes it hard to get out of bed. It is very rare for me to feel that rotten, and for this I am grateful. I would never give in to that, because I know what it is like to be physically unable to get out of bed. There is a difference. If your rare genetic disorder makes it so that your muscles and joints have nothing left to give, you have zero physical energy, and if you push yourself, you get a backlash of even more fatigue, there is no choice. I’m sorry that I know this. No offense to anyone who is only profoundly depressed.

If you are extremely ill, finding effective treatments to help your body cope with the burden of illness is your task, to be done with someone with enough education to actually understand your disease, that is medical doctors. Don’t fall prey to quacks, even if they seem well-intentioned, and especially if they promise you cures. Whether they are clueless due to lack of education or coning you does not matter. Chronic illness is something to be managed.

Whatever you are doing for treatment, get objective input on if you are improving or not. Ask people you live with. You can be so sick that it is not possible for you to estimate. Accept discouragement as part of the alternative lifestyle that is rare disease. Be honest and stop doing what is not helping. I am often asked how I knew the C shots were helping me. Because I am so severely affected by Ehlers-Danlos, it was obvious. Here I am now, so guess they do work.

Be careful about drugs, because the side-effects can make your rare disease symptoms worse. Taking benadryl every day was the worst piece of medical advice I ever got, and, yes it was from an MD. Antihistamines are horrendously brain draining. No, I do not need more brain fog and fatigue, thanks. Pain and pain meds are giving me enough already. But no one told me they do that.

One day recently, I felt so down that I spent the entire day camped out on the couch watching The Staircase on Netflix. That guy is guilty AF! I mean, you don’t get explosions of blood all over walls and ceiling from tripping and falling down the stairs. Puhleez! I was ROFLing whilst utterly impressed with how that charming psychopath got unquestioning support from the daughters of that other lady he murdered and his naive lawyer. He wasn’t even sad about his wife’s tragic death. She looked exactly like his first murder victim… interesting. If you are a gay man and you feel like you have to live a heterosexual lifestyle to have social status and acceptance, the rage might build up, no? Just speculating on motive here. He sure looked like he regretted killing his wife, after those long nine years locked up. And why isn’t that state agent in prison? There’s a grave injustice. You gotta watch it.

Anyway, it was fun to give up and give in and spend the day doing nothing. Haven’t done it since. My life is too valuable to me, since I know what it is like to be physically unable to have one. I’d rather get something, anything done.

If you are bedridden by Ehlers-Danlos or some other miserable condition just as awful, get up as often as you can. The challenge of that is so good for your cardiovascular system and for maintaining muscle mass. Dr. Chopra talked about that at the Children’s Hospital of Orange County EDS conference I attended a few years ago, which was excellent, by the way. He said even if you’re having a very bad day, wave your arms and legs around as you are lying there. That is a doctor who understands our disease.

Why was I so blue?

Finishing the Pier-to-Pier so easily confounded me. It never occurred to me that might happen. I expected to barely finish. The physical failures caused by EDS are so thoroughly traumatizing. I realize writing this that I still expect to fail, even though I have had several solid years now of being able to show up and make it through everything. I am wondering if this is putting me in a bad mood?

I am a big fan of the EDS Society, how hard they are working to get our disease understood. The new diagnostic criteria is excellent. However, I think the EDS Society has done us a disservice by being so coy about the profound, disabling fatigue of our disease, about the inability to function physically due to our weak, flimsy bodies, frank dislocations or not. Debilitating fatigue is a feature of many rare genetic disorders, so it really is okay to admit it. Apparently, an important gene with deleterious coding creates a tremendous burden on the body. When a disease is properly described, patients can focus on proper treatments. How many EDSers are desperately searching for the cause of their disabling symptoms of fatigue and weakness when it is primarily caused by EDS? On this, the EDS Society has failed us.

Loose joints would not be such a problem if we could heal, repair and recover like normal folks, right? If we had energy to function? That is the person I am now. I am a person with extreme hypermobilty everywhere, who can heal, repair, sleep, who has energy. I am prone to joint strain. I manage it be being careful, by returning to physical and occupational therapy every now and then, through exercise modalities that encourage stability, collagen repair and correct joint placement and function. I will write more about that soon.

It was my dream to get just well enough to enjoy my life a little. I never thought I would be this high-functioning. Instead of being endlessly blissfully happy like I thought I would be, it has been years of wondering if my broken heart over life will ever mend. Do I sound depressed?

Some say depression is anger turned inwards. Maybe that is true.

My post-race tears were a layer cake of dark, uncomfortable grief, and unbeknownst to me then, rage frosting. In the days following the race, I was in such searing, dark emotional pain, it was hard to be alive.

I walked Toronto in the muggy August rain, in my sandals. Every breath hurt. Every step hurt, but not my foot so much. Yay! It’s healing!

I took a boat tour on the lake in the mist.

I had a Thai massage, a legitimate one like I haven’t had since I was in Thailand. It felt so nice to relax and be touched. The masseuse showed me his books. When I was in Thailand, it was such a surprise to find my structure coping, that I got a Thai massage every day. I think a Thai massage is very physiologically sound. Those techniques address the large muscles well and do not destabilize me like other types of massage.

I worked out in the hotel gym, intense strength training as I do. I was too down to take any pics.

I took 0.2 mg of naltrexone before my workout and had hours of endorphin rushing afterwards, which filled the black hole in my brain for a while.

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Distracting myself from my dark, draining feelings did not work. But I enjoyed Toronto nevertheless.

I walked Toronto in my sandals in the sun.

I walked miles and miles more, my foot really is healing. Toronto really is fabulous.

I walked Hipster Toronto and had a hipster coffee. I walked Little Italy and ate a cannoli. I bought a necklace close to Chinatown as chic anything you could find in West Hollywood. And also a camo tank. I always wanted one. Six miles total that day, something to be proud of.

What do I do when I am this down at home? Does this even happen at home? I had to think about that one.

At home, I might play a little Selena Gomez to transcend the anguish of life, without even thinking about how I feel. I hate my feelings. Such a hassle to deal with.

I ❤️❤️❤️❤️❤️ Selena Gomez. Such a sultry, sexy voice. Such exquisite phrasing. And her sick beats! Even if she didn’t write them, she can pick a song.

It Ain’t Me is a great song.

I had a dream we were sipping whiskey neat
highest floor
The Bowery

I love a whiskey neat, too! Especially with a splash of soda.

 Sipping whiskey neat with Mr. Pennington at the  Jameson Distillery  in Dublin.

Sipping whiskey neat with Mr. Pennington at the Jameson Distillery in Dublin.

Back to You is also a great song.

Took you like a shot
thought that I could chase you with a cold evening
let a couple years water down how I’m feeling about you

That is such a great line. I wish I had written it.

Plus, Justin Bieber was her boyfriend.

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It ain’t me
The Bowery, whiskey neat, grateful
I had a dream