Jamison Hill: Sex and Sickness

This guest post comes to us from the amazing Jamison Hill and is reposted with permission from his website Jamison Writes. I first heard about Jamison through Medicine X. Ryan Prior was also attending so, in the days leading up to MedX, I watched Ryan’s documentary Forgotten Plague about Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Jamison fell ill with ME/CFS in 2010, bringing his career as a personal trainer and bodybuilder to a halt. After Forgotten Plague came out, Jamison’s health went downhill even more. Both Ryan and Jamison sent me this post and I knew we had to share it here.

*While this blog post contains some content that may be too explicit for some people, it is my belief that if one is intelligent enough to read and understand the words in this post then he or she is mature enough to handle the subject matter as well. Having said that, reader discretion is advised (especially my family members who don’t want to know about my sex life).

At 28 I can count all the women I’ve had sex with on two hands. I’ve never been one for one night stands (except that one time in college), yet I’ve never been one for long-term relationships either. But for some reason I didn’t miss sex until I got sick, probably because it was more attainable back then. It was an option.

As much as I’d love to knock boots with a lovely young lady, at the moment there are many barriers in my way. For starters, I don’t wear boots, or any footwear for that matter. And even if there was a willing participant, much of the romance and lust of climbing into bed with someone would be lost with one person already in bed, living there indefinitely.

I will say, however, my sickbed has not been entirely empty. On a few occasions over the past year and a half I have had snuggle buddies. There have been three, in fact.

These relationships, although very emotional at times, have amounted to the sexual encounters of a middle schooler. My first cuddle companion (can you tell I enjoy alliteration?) was a friend from college. We met at the tail end of school after I had already been sick with mono for a year and somehow managed to finish my final semester with ailing health. We hung out a few more times before I got really sick. Then last year she came and stayed with me for a few weeks while I was unable to speak, chew food, or sit up in bed. Here’s an excerpt from my unpublished memoir detailing one of the nights we spent together. I used a pseudonym to protect her privacy.

After getting lost, we arrive at the new house perched atop a mountain ridge overlooking the Central Valley. I have no idea what the new house or its view look like, but apparently they’re pretty great. Carried onto the deck, I hear someone say, “Wow, look at that view.”

Inside, shoveled into my new bed, my view is of the ceiling. This changes when everyone leaves and Sasha crawls into bed with me.

“Now that wasn’t too bad.”

I look at her cockeyed.

“Okay, okay, we did get lost, but you’re fine.”

I look at her even more cockeyed.

“Ah, okay, you’re not fine, but you’re alive.”

I smile politely.

“So how come you haven’t kissed me yet?” She asks, shocking me as only she can.

The word “boyfriend” comes to mind, but I take the question as rhetorical and a direct challenge, maybe even an invitation. The idea of kissing Sasha controls my brain, spreading through my body like a virus that can’t be stopped until the idea is carried out.

Time nearly stops and my body enters slow-motion as I move to Sasha’s side of the pillow. My hand makes the difficult journey to Sasha’s cheek, making my brain buzz and heart thump loudly throughout my body. So much is going on, my lungs start to burn. My breathing becomes labored, reminding me of all the times late at night when I would pop in my earbuds and sprint up the outside steps at Stevenson Hall on the SSU campus. My vital signs are erratic. I consider retreating, but instead, gently press my hand against Sasha’s cheek, tucking my fingers behind her ear. My lips conform perfectly to hers. No awkward fumbling around, just a well-placed kiss, and oh what a kiss. There’s no champagne or fireworks, but there is a long overdue connection between us. I can’t speak for Sasha, but for me kissing her is freeing. No longer am I a prisoner in my own body, stuck in a bed within a dark room of an unfamiliar house. I’m free, a genie freed from his lamp, a bird with a healed wing. For a short time, I’m free of the muscle pain and crippling weakness, free of the horrible nausea and brain fog. Never did I think kissing would have such a salutary effect at this stage of my life. But it does and I know not to question it, because I also know where there is deprivation there also may be great rewards.

Sasha and I breathe each other in as our lips part and we return to our respective ends of the pillow, our eyes nervously fixed on one another like teenagers. My pulse gradually slows. I take a deep breath, calming my body. Having collected myself, I motion for Sasha to come back to me because, well, I want to be free just a little longer.

Sasha left shortly after that night. It was crushing to have someone see me so vulnerable, then become so close to me only to leave abruptly. In retrospect, however, it made sense as many things do in hindsight. She did, after all, have a boyfriend. I haven’t seen her since. But eventually a new snuggle buddy entered my life – an ex-girlfriend. Let’s call her Mia. She was my first legitimate girlfriend in high school, and unbeknownst to me until recently (or I forgot), I was her first kiss.

One day in spring 2015, during a stretch of the sickest I’ve ever been, Mia sent me a text message. I was too sick to read it at the time, but someone spotted it on my phone and read it to me. It said how she had always cared for me even in the intervening years after we broke up and before I got sick. For months I crafted a response to her in my head. Then around Christmas of that year I was finally able to use my phone again. So I sent her this message:

Two years ago I found your school photo I kept in my car sophomore year. You looked gorgeous. Those piercing eyes of yours, tan skin, and that sweet smile. Oh, and the hilarious innuendo on the back all made me be a creep and keep it. I started using the photo as a bookmark. But then my irrational fear of having to explain myself while reading in public kept haunting me. I would take it to the harbor and I thought surely someone would ask about it. Then I’d have to explain how it was a photo of a girl I dated a decade ago. So when I got really sick you were fresh in my mind. And then you sent the sweetest message a few months ago and honestly Mia, I needed it. I was so sick and so lonely and you were so thoughtful and so lovely. I needed to know there was a beautiful soul out in the world who cared about me. What I’m trying to say is you are awesome and I’m borderline creepy.

Soon our text messages turned from cordial to flirting to downright erotic. Okay, I’ll say it, we were “sexting.” Now if you’re wondering how (or if) a sick guy gets off on erotic text messages, well, I’ll leave it to your imagination, except to say it’s fun (and often necessary) for a little while, then it feels like the world’s worst hangover for much, much longer.

After several weeks of texting (and “sexting”) each other, Mia finally came to visit and within an hour she climbed into bed with me.

To be continued . . . .

This post is a part of a series. Please check out part 2 on Jamison’s site and be on the lookout for part 3, coming soon.

Lubrication and Illness Fun It Can Help With

 

Please keep in mind that much of the research done regarding lubrication and sex or sexuality has been done in vagina-havers only. As a result, this post may be somewhat more gendered than we generally try to put up.

Lubrication is one of those magical things that can help solve or treat a multitude of things WHILE making sexual activities extra awesome. Let’s explore a little more in-depth some of the sexual issues that additional lubrication can help with.

One of the things that many of us experience is discomfort during sexual activity. There are many forms and severities of discomfort that can be caused by many different illnesses and even some medications. Not all of them get better with more lube, but many can. If you are on medications that may affect your sex drive or libido (such as SSRI antidepressants and some non-steroidal anti-inflammatory drugs or NSAIDs), adding in more lubrication – though foreplay or with a product – can completely change your sex life.

Sex when there is inflammation involved can also be helped by additional lubrication. If you have been through menopause, it’s incredibly common to deal with vaginal dryness. Sjögren’s syndrome can be a very common cause for those living with a rheumatic disease as well. Things like widespread chronic pain can even cause issues with lubrication itself due to the way it distracts us from pleasurable sensations.

Lube can also be incredibly helpful for people who may have mobility issues. To use an analogy, it’s easier to land a plane when the lights on the runway are on, no matter which direction you’re coming from.

plane landing on a runway with lights on at dusk

Okay, so on to the fun part about lube!

People who menstruate often remark on how awesome sex during menstruation can be. The biggest reason for this? All the extra lubrication! (Well, to be technical, the increased sensation leading to increased blood flow helps, too.)

Like I like to say, the more slippy the slide, the better the ride!

The beautiful thing about lubrication is that there are as many options out there as one can find. I personally suggest water-based lubricants, but you’ll have to wait until the next few posts following up this one to figure out which ones chronically amazing people like myself enjoy!

Note that there are certain medical conditions that present themselves in ways that affect our sex lives such as heart disease and stroke. Joan Price shared a story a few months ago in Milwaukee of a woman who lost her sex drive and then lost her partner only to have a medical emergency that could have been found early had her physician listened when she brought up rapidly decreased arousal. Please make sure to check in with your physician(s) about symptoms you may be having.

Chat Questions for October 6, 2016

It’s been a month since we had our chat thanks for conference season, so we are checking in tonight. Join us at 7 pm Eastern for our live chat on Twitter using the hashtag #chronicsex.

cs-10-6-16

Q1: Please introduce yourself in a way you’re comfortable sharing

Q2: It has been a long time, lovebugs. How are you doing?

Q3: How are your self-care and self-love efforts going?

Q4: How are your interpersonal/intimate relationships doing?

Q5: What types of things would you like to talk about in the future?

Q6: Who is your favorite celebrity crush and why?

 

 

Ten Chronically Amazing People to Look Up to When You’re Having a Rough Day

When we’re dealing with chronic illnesses and disabilities, we face days where our pain is high and our ability to cope is low. We have different ways to deal with life when this happens, but one of the best ways to do so is to connect with some other amazingly chronically ill people.

Here are some of my favorites in no specific order:

1. Mariah
Mariah is one of my favorite people ever. She is an amazing advocate working tirelessly to educate, raise awareness, and help mothers (and those trying to conceive or thinking about it) with chronic illnesses.

She writes at RheumatoidArthritis.Net and works with Joint Decisions in addition to helping out here at Chronic Sex.

2. Kenzie
What can I say about Kenzie?

She works so hard to thrive despite multiple illnesses. She is raw and vulnerable in a way that very few can be. She has the cutest sense of style, a passion for mental health, and the most giving and loving heart I have ever seen. She’s also pretty much the bestest friend ever.

She works with Joint Decisions as well.

3. Rheumatoid Arthritis Guy
Through RA Guy’s writing on his site, Creaky Joints, Joint Decisions, and his foundation, he both raises awareness and gives hope to others living with types of arthritis. He brings in a much-needed male voice to the patient advocacy community.

One of the reasons RA Guy is so admirable, though, is that he knows when to step back and do more self-care stuff. It’s amazing how someone can do so much and still be so focused on their own needs.

4. Leslie
Leslie works hard at her day job helping patients in the healthcare community and does it after-hours, too! She was one of the first bloggers with RA that I found. At the time, she was an amazing inspiration to me as she was in graduate school while dealing with her health issues – and I was incredibly concerned about even finishing college.

She writes for RheumatoidArthritis.Net, Health Central, Creaky Joints, and works with Joint Decisions.

5. Britt
While Britt (Hurt Blogger) has been a patient advocate and activist for years, she recently began working for the Arthritis National Research Foundation.

She also writes for Creaky Joints, Health Central, and works with Joint Decisions.

6. Abby
Abby is an amazing writer and health activist. She started a movement called Ask Me About My Uterus in order to raise awareness and openly discuss reproductive health, fertility, and more. It took forever for her endometriosis to be diagnosed. As a result, she has been incredibly frank and open about talking about these issues.She’s basically who I want to be when I grow up.You can find Abby on Medium, Romper, and on Facebook.

7. Jessica
Jessica works tirelessly to raise awareness of both physical and mental health issues. One of my favorite things about her is that Jessica focuses also on how to look good while ill, something that can definitely help to boost our self-worth. She’s also a great proponent of self-care.

You can find her at her site and Huffington Post.

8. Kristin

Kristin is not only a social media expert but an amazing health activist. She focuses heavily on patient engagement/experience and how to incorporate digital technologies in ways that improve the former.

She’s also basically my twin.

You can find her at her site and Tumblr.

9. Natalie
Natalie lives with a rare neurological disorder called Moebius Syndrome as well as additional illnesses. She writes about life, her amazingly adorable service dog Cassius, calling out ableism, and loving Hamilton.

Make sure to check out her site and her Facebook page.

10. Dawn
Dawn is the creator of the one-and-only Spoonie Chat. She’s also an amazing activist who focuses not only on chronic illness and disability rights but also on racism, socioeconomic disparities, and political issues.

Make sure to check out Spoonie Chat’s Facebook, Dawn’s Twitter, and Tumblr.

Who are some of your favorite chronically amazing peeps?

Dreaming of California

chronic-sex

Hi, lovebugs!

I’m excited to share that you can tune into two places coming up to hear about the upcoming For Grace conference that I am a part of – and to hear me talk a little more about my role in it!

On Sunday, September 11, at 4 pm Pacific Time, you can tune into KPFK to hear me and others on Access Unlimited. If you missed it, please check out their archives.

You can also tune into Change Is In the Air with Nicole Smith on 740 AM (KBRITE) at 8 PM Pacific Time on Monday, September 12. (I’m pretty sure that’s the date, though it may be the following Monday).

If you want to check out my presentation on Chronic Sex at Medicine X, sign up to live-stream it here. We haven’t been given a schedule for the day, yet, but I’m speaking on Thursday, September 15, at the Health Care Innovation (HCI) event.

You can also live-stream For Grace.

With all that said… Things will be a little quiet around here until the end of September between attending Medicine X at Stanford and For Grace in Los Angeles a week later. Because of the busy conference month and traveling, we won’t be having chat until the first week of October.

The bonus of putting chat off a little bit is that I have several episodes of the podcast recorded and just waiting for me to mix and edit, so I’ll be able to dedicate more time to that. A giveaway is also coming soon – stay tuned for details!

Feel free to utilize the #chronicsex tag on Twitter to share any meaningful stories or information you’d like others to see or tag us on whatever social media you use if you’d like things shared on a wider basis. Our social media pages will still be actively posting information, providing support, and sharing about traveling, though, so don’t be a stranger!

Not sure where to find us?
Facebook
Twitter
Instagram
Pinterest
Medium

You can also always reach me at kirsten@chronicsex.org, too.

PS we now have a Zazzle store! Please note that you have to set the content filter to moderate because, shocker, the word ‘sex’ can’t be a G-rated term. Whoops!

 

Chat Questions for August 25, 2016

Tonight, we’re talking about finding and using our voice with loved ones.

cs-8-25-16

Q1: Please introduce yourself in a way you’re comfortable sharing

Tonight, we’re going to talk about finding our voice in any relationship. Keep in mind that when I say ‘loved ones’ that can mean whatever it needs to for you – partners, family, friends, etc.

Q2: Do you feel like you can vocalize needs, wants, and concerns with loved ones?

Q3: Do you feel supported in regards to your health, your self-esteem, and the like by your loved ones?

Q4: When a loved one makes a judgmental or hurtful comment, are you able to stand up for yourself?

Q5: Do you have any tips for how to deal with judgmental comments or not let them get to you?

Q6: What is your favorite thing about the changing of seasons coming up?

Movies That Make Us Feel Good

Many things in our lives can have an effect on or influence how we regard ourselves – our relationships, societal expectations, and the media we consume.

Today, let’s explore some of our favorite feel-good movies.

Tasha says something about singing as a super villain is empowering.

Netty wants her own Baymax to take care of her, and I do, too!

 

Erik says it’s the perfect distraction from worries.

 

Kit says this is because of its innocent hopefulness.

Shaunia says this is due to how hilarious it is.

 

Chelsea says that she loves how the movie acknowledges that everyone has particular quirks, and that love and friendship are all about finding the people who fit your quirks. She also loves how the good deeds evolved.

 

Julie suggested this and I totally agree!

 

What are some of your favorite feel-good movies?

 

 

Chat Questions August 18, 2016

This week, we’re talking self-esteem:

Q1: Please introduce yourself in a way you’re comfortable sharing

Tonight, we’re going to talk about how our chronic illness or disability affect self-esteem

Q2: How do you feel about yourself currently? Do you have high, low, or middle-ish self-esteem?

Q3: How much do you feel like chronic illness and disability affect your self-esteem – little, meh, or DAMN?

Q4: Have you found any tips and tricks to improve self-esteem despite chronic illness & disability?

Q5: If you could talk to newly-diagnosed you, what would you say to help them with self-esteem?

Q6: What badass thing did you accomplish this week?