To the Amazing Husband Behind This Chronically Ill Wife by Samantha Moss

Behind every great man is a great woman, or so the saying goes.
Let’s flip that on its head a little. Behind this chronically ill wife is an amazing husband. A husband who has become a full-time carer. A husband who has gone beyond the call of duty. A husband who has become my legs, my cleaner, my cook, my shopper, my gardener, my driver, my nurse.

A husband who holds my hand when I’m writhing in pain. A husband who heats wheat packs in the middle of the night or makes me a cup of tea in the early hours of the morning, when sleep is completely disturbed by pain.

My husband is nothing short of amazing and I don’t know how, I don’t even want to think about how, my life would be without him by my side.

We share this chronic illness journey, warts and all. He knows me better than anyone else. He can tell when I’m exhausted even before I can. He never complains at this life that has been landed in his lap. He never gets annoyed at me for my limitations. If anything he gets annoyed at me when I try to do things beyond my limitations. That’s when I frustrate him.

It’s a frustration born out of love though. It’s because he knows how much pain I will endure for stretching my limits. He speaks to me of hating what my body is doing to me and how he feels so helpless. That breaks my heart to hear him say that.

Somehow we have managed to create a world of our own that works for us. While it is an extremely limited life, it is also a full and an ever-expanding life. Most of it is spent in the four walls of our home but we are together and we create our own adventures on a daily basis. We laugh and cry together, we read together, we watch our favorite TV shows, we sit in our garden and chat as if on a beautiful date. We share the jobs around the house and keep our environment a place where we want to be.

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We also have our alone time during the day. I have my online support forum and writing commitments and my husband always has a project on the go that he potters with in his “man cave.” Although we usually only spend two or three hours apart each day that time is precious and important, particularly for a carer.

I was recently asked to write on the topic of “Partners – Where would we be without our partners?”

I have a very simple answer to that question. Lost, lonely and in a permanent residential care facility.

Thank you, sweetheart, for all you do, your devotion, care, acceptance of our situation and your unfailing love.

Words really can’t express my love for you but I hope this article will always remind you that I think you are amazing and I love you so much.

Follow Sam’s story at My Medical Musings.

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Photo via michaeljung on Getty Images

Samantha Moss
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Cardiac Sarcoidosis

Fibro and Sex: pt. 1

Fibromyalgia and Sex Part 1: The Painful Truth {with video}

created by Brandi Clevinger using the image from © vgstudio at http://www.stock.adobe.com

The painful truth about sex and why it’s good for us. #fibromyalgiaCLICK TO TWEETDisclosure: I get commissions for purchases made through links in this post, but these are products I recommend and have verified and/or used.

Fibromyalgia and Sex: The Painful Truth

How can an act between two people that has been around since the beginning of time have such an effect on the way we think, feel, and react to each other?

Simply put, why does the word ‘sex’ affect our emotions in different ways?

For many, sex is simply a pleasurable activity to pursue because of the feelings it arouses and, hopefully, to achieve orgasm. Surprisingly though, only 75% of men reach orgasm during sex and a staggeringly low 29% of women reach orgasm (“10 Most Surprising Sex Statistics,” n.d.).  Even if orgasm isn’t achieved, however, this group of people do it because it feels good.

Often, significant others express their love for each other through sex because words can put restraints or boundaries on those feelings. Being intimate with a partner provides a way to connect, share, and grow together as a couple. It can be engaging, provocative, and alluring all at once. It’s no surprise sex is appealing to a large percentage of the population. In fact, the average man thinks about sex 19 times a day and the average woman thinks about sex 10 times a day (“Health Myth: Do Men Really Think About Sex Every 7 Seconds? | GQ,” n.d.).

Just as some are attracted and excited by the thought of sex, there are some that are turned off by it. Various reasons can cause these negative associations and, for those living with fibromyalgia the very mention of the word can stir up feelings of pain, discomfort, anger, or other negative thoughts. Why?

Why is sex painful for a fibro body?

Painful Touch

Sex can be a pain – literally – for a person living with fibromyalgia. Allodynia is common when dealing with fibromyalgia: when a person experiences pain from something that shouldn’t normally cause pain such as clothes, bedsheets or even air moving across the skin. Living with a sensory sensitivity causes a touch from a person to be painful no matter how gentle or caressing it’s intended to be. Allodynia prevents a person from being too close to another person making it even more difficult to have a desire for intimacy.

Pain on the Brain

No matter where pain is felt on your body, it is transmitted from the nerves to the spinal cord which is then carried to your brain. Your brain then registers the pain and causes the body to react accordingly to the pain messages received. This can be seen by quickly jerking a hand from a heat source, yelling out in pain when you stub your toe, or crying when your feelings are hurt.

With a fibro body, the sensitivity of the nerves is turned up, causing them to continuously feel pain and sending those pain signals up to the brain. The brain, in turn, concentrates on that perceived pain and coordinates the body to react to it. Since the brain is the most sensitive sex organ in the body, it makes it hard to focus on sex if our brain is constantly focused on pain.

Loss of Libido

If the negative effects of fibromyalgia on our ability to enjoy sex weren’t enough, it seems like a cruel joke that the treatment could make it even worse! Currently, there are three prescribed medications approved by the Food and Drug Administration to treat fibromyalgia: Lyrica, Cymbalta, and Savella. Antidepressants, pain relievers, muscle relaxers, antiseizure medication, and benzodiazepines have been used to ease fibromyalgia symptoms, but they are not specifically approved by the FDA for fibromyalgia.

The effectiveness of the medications as well as their side effects vary from person to person, but one of the most common side effect is the loss of libido. The reason a person’s libido is affected is because of the medicine’s effect on the production of brain chemicals. To relieve fibromyalgia symptoms, certain chemicals must be raised, in turn, lowering libido. Some of your symptoms may be relieved, but the tradeoff is your desire to have sex decreases or goes away altogether.

Muscle Pain and Stiffness

One of the most common symptoms of fibromyalgia is muscle stiffness, tenderness, and pain. Dr. Ginevra Liptan, founder of The Frida Center for Fibromyalgia located in the United States, states in her book, The FibroManual: A Complete Treatment Guide for You and Your Doctorthat the fibromyalgia brain is stuck in a stress response (Liptan, 2016, p. 20). This stress response keeps the body in a continuous state of a ‘fight or flight’ status. The ‘fight or flight’ response has our brain and sympathetic nervous system thinking it’s under attack triggering many reactions in our bodies to happen or to prevent them from happening. One of the reactions that stays on is the tension of our muscles.

Constantly tensed muscles can leave a person feeling fatigued and stiff throughout the entire body. Sex is an active exercise that requires flexibility and the use of various muscle groups. The muscle pain and stiffness can prevent a person from enjoying sex or being able to move with ease and free of pain. The results of an intimate session in the days following sex is often an increase in symptoms, or flares.

Difficulty with Sexual Performance

All the reasons listed up to this point tell why people living with fibromyalgia have little to no desire to be intimate with another person, and will, have an impact on their sexual performance. A person can feel pressure to have sex from their partner, although many times that pressure is unintentional. Thinking about pleasing and not disappointing the other person on top of struggling with the pain of having intercourse during and the days following can impact sexual performance. It’s natural to have these feelings, and they shouldn’t discourage someone living with fibromyalgia, or his/her partner, from further attempts at enjoying sex.

What are the health benefits of sex?

Even though sex may cause you or your partner pain, there are reasons you should consider having a healthy sex life. And, yes, there are ways to have a sex life and ways to improve it such as eating hormone balance food, but let’s discuss why it’s important.

Strengthens Your Relationship

As stated in the introduction, sex is a means in which many couples can express their affection for one another. When words fall short of that expression of love, we turn to intimacy and the closeness it can bring. In many instances, sex takes the relationship to a new level of connection and understanding. Communication lines open and couples can better receive what their partner’s verbal and nonverbal cues. These benefits remain even after the sex is over.

Strengthens Your Body

Yes, you read that correctly. Sex is an exercise, and like all exercises you burn calories while doing it. Pun not intended. According to research done by the University of Montreal provided by Men’s Health, men burn 100 calories for an average sex session of 25 minutes while women burn 69 calories (“Sex Workout,” n.d.).   And the longer the session, the more calories burned. Having sex also elevates your heart rate which keeps estrogen and testosterone levels in balance. Done regularly, it will decrease chances of heart disease and osteoporosis.

Eases Pain

Endorphins are the body’s natural painkillers that decrease and increase a body’s overall well-being. These feel-good brain chemicals are released through various activities such as exercising and – yep, you got it –  sex. Once endorphins are released to the pain receptors in the brain and spinal cord, they block pain signal transmissions. This lowers the perceived amount of pain for a given stimulus, and can prevent pain altogether. This is especially beneficial for someone living with fibromyalgia.

Orgasms can also relieve pain. When a body reaches its moment of climax, it releases a hormone called oxytocin which not only eases pain, but also lowers blood pressure, improves digestion, and makes us happy. Science has proven it – orgasms make a person happy!

Improves Your Sleep

In addition to the release of oxytocin, an orgasm also releases hormones called prolactin and vasopressin which are responsible for feelings of relaxation and sleepiness. With multiple hormones being released to relax the body, it’s no wonder we have the need to fall asleep after a good romp session.

Reduces Stress

Having a healthy sex life can help lower stress and improve overall well-being. Aside from the previously mentioned hormones that aid in lowering stress and improving relaxation, the physical closeness between partners during sex can also lower stress and anxiety. The welcome touching and caressing from your partner can release the body’s natural feel-good hormones which redirects your focus away from negativity and stress. This boosts self-esteem and can make a person happier.

Ways to improve sex

Even if sex is a painful experience for you, whether physically or emotionally, there are ways to make it better. There are also techniques to create a sex life if one is lacking. Sex can become a pleasurable experience that both partners look forward to.

Please join us in next month’s issue as we discuss the ways to turn painful sex into pleasurable sex in Fibromyalgia and Sex: Part 2: Turning the Pain into Pleasure.

This article first appeared in The Fibromyalgia Magazine, April 2017. Get the digital copy of the magazine from Pocketmags.

Fibro Live: Fibromyalgia and Sex

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I’m Brandi, follower of Christ, wife to an amazing, supportive husband, blessed mother to four sweet children, and a fellow spoonie.
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3 thoughts on “Fibromyalgia and Sex Part 1: The Painful Truth {with video}”

  • September 12, 2017 at 10:36 am

    Permalink

    I have had these probkems and my boyfriend quit making love to me. Then he has sex with our roomate, tells me she’s pregnant and breaks up with me. Now i hace been heart broken and too afraid to be in a relationship anymore. Thank you for reading. Laura

    Reply

    • September 15, 2017 at 10:45 am

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      I’m so sorry you experienced that, Laura!

      Reply

  • September 19, 2017 at 9:50 am

    Permalink

    Hi Brandy. So glad that there are a blog and site where you can read about fibro. Seeing that this is quite a new and unfamiliar illness dr struggle to identify. I am living in South Africa. My wife was diagnose for fibro 4 years ago. Believe me if I tell you that I am still struggling to come eith terms with it.
    Is there any place or group in support of the partner of a person that is struggling with it. Reason I ask is that we concentrate so much on the patient that we forget the other party as well. Seeing that this does effect both parties and this has an influence and effect on both.

    I don’t know if there are spouses esspecially husbands that are effected or struggle to come with terms. Sure as hell I still do and sonetime dont want to accept the fact that this is a life changer and I must live with it. And if my wife is not healed by Jesus Himself then I have to live with it. And this makes me sometimes upset dis organised furious ext. I feel sometime life is just unfare. Maybe we must start a blog with fibropartner. But in support of this not to de motivate a person but to boost a person in support of his or her suffering partner.

    But I have picked up, maybe I am wrong but the most people suffer from fibro is women.

    Hear from you soon.
    Blessings
    John

    Reply

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Blessed just at the right moment…

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To have the feeling of loneliness countered by a moment of feeling loved is awesome. In one moment a picture of my elementary school class picture was posted on FB with a message, “Marilyn, I thought you might like this,” Isn’t The Most High wonderful?! To be contacted at that moment of utter loneliness. All of a sudden my DM was hit up with all of my closest friends that I had lost touch with. Now a meeting has been set up for all of them to come visit me for the day. Isn’t that wonderful? Feeling so blessed. 😊😋😊

Where Is My Relief?

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Waking up in pain everyday isn’t how I envisioned my life to be. Diagnosed 18 years ago and been living debilitating pain that no one could possibly handle on their own. Prescribed medicine’s do not work for my good. They just caused more problems, more pain.

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Waking up in pain is not what I envisioned my married life would be. I hurt because I can’t be the wife that my hubby Karl needs. Instead of me taking care of him, he instead takes care of me. Causing an extra burden to be placed on his shoulders because of my stupid illness hurts my heart. Watching him age before my eyes. Saddening. Hurtful. Regretful. Sorrowful. In his eyes he loves me and I am thankful. Karl honors our vows to each other. Honestly, that speaks volumes to his character. Cares for me like no other. He is a blessed man of The Most High that was created just for me. I am blessed because he chose me. Selah

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Waking up in pain each day is not what I envisioned my life as a parent to be. Diagnosed when my children were 12, 9 and 2 months respectively. Just babies themselves having to take on the role of caretaker to their own mother. Missing out on a lot because of me. Having one resent me because of it. Missing out on caring for the baby a lot because of the pain. They are 30 (KJ), 27 (Ka’miko Mai’) and 18 (Kimora-Lynn) now and I can truly say I am blessed that they chose me as mom from heaven. They make me fight each day to live. Even with the pain, I could not have made it this far without them. There are many others in my shoes that do not have the support system that I have and I pray for them everyday. But I am so thankful that my family loves me and stays in my corner. The Most High seen favor with me and blessed me with another daughter. My daughter Hadar, KJs wife, not only loves me but she is also an active advocate for me and Sarcoidosis. She helps me with my health choices and also with my life. She educates others about Sarcoidosis, making them understand what I struggle with everyday. She loves me and that is such a blessing.

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Chronic pain, living with Sarcoidosis, living with an Invisible illness, living with an incurable debilitating disease and finally, living with a rare disease; this is my life. I fight through the pain, I smile through the pain, I live through the pain.

Peace and blessings to you always Warrior’s.

 

RE: MOVIE NIGHTMARE @ Cinemark Christiana Movie Theatre Pt. 2

 


This is a follow-up to the Cinemark Christiana Movie Theatre debacle.

I called the theatre the next morning after being humiliated the night before and spoke to a representative who intern stated that I would be receiving a call from their manager (Stephanie) on Monday. Well that didn’t happen. I called this evening around 4:30 pm and actually spoke to Stephanie herself. After explaining to her how I was treated, she told me “where I was wrong.” She said that I, indeed was sitting in someone else’s seat.? Wrong! I understood the meaning of reserved handicapped seating and I was indeed sitting in a seat that I had reserved. Stephanie also stated that they sat those that was supposed to sit in our seats elsewhere, and that the usher was supposed to tell us this. NOT! LIES BEGAT LIES BEGAT LIES! Stephanie then went on to say that I had no right to raise my voice to her. I rebutted with, why Not? You are not listening to what I am trying to explain to you about what actually happened. She then apologized for her staff not alerting me to reassigning the other moviegoers Stephanie promised me a refund, in which I was prepared to give her my confirmation number so that it could be reimbursed to my card. Stephanie said that was not possible and that I had to come back to the movie theater and show her my digital receipt. Again reiterating that it would be hard for me to do so tonight because of my disability, so may I email it to her. Of course she said no. Stating that I must present the ticket in person in order to receive my refund out of their petty cash fund due to the ticket being purchased via Fandango. She said that it would be okay to send a copy of the ticket with my husband. Stephanie stated, “that if she was not there, then she would leave word with the other managers to refund my money. Hubby went there and the staff denied our refund. A manager named Carlos specifically, spoke very negatively to hubby.
I am venting this because I already deal with being handicapped because of Sarcoidosis and what it has done to my life, but to be humiliated when I was in the right for sitting in a seat designated for the handicapped. Especially, when being asked to move for those who were not. #Fighting4ACure #LivingWithChronicPain #LivingWithAnInvisibleIllness #SarcoidosisAwareness #LivingWithChronicPain #TheRightsOfTheHandicap #Fighting4OurRights #MistreatmentOfTheHandicapped

For someone that has to rely on opiates to experience a somewhat “normal” life. The only problem is that I have to supplement my diet with a lot of fiber and various laxatives, including teas each day. It can become very costly. My major concern is the side effects that all of these have on my body as a whole. I feel overly bloated when I am unable to relieve myself; and once I do, I feel dehydrated, drained of all my energy and empty. That’s a good thing right? LOL 😉 But am I loosing necessary vitamins and minerals needed to sustain my life. Well, I found an article that hopefully answers all of my questions and also those that are from you as well. Click on the link below for the article.

Peace and blessings to you all,

Marilyn a.k.a. Lynn or Mommielynn

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Digestive Disorders/Bowel Transit Time

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