Chronic Pain And Intimacy (And How To Spice Up Your Life)

Note: This post contains Affiliate Links which pay me a small percentage of your purchase price at no cost to you.

When you live with Chronic Pain, everything you do becomes a new challenge. Working, socializing, taking care of kids and/or a home – you still need to do it all and live your life, but now you have persistant pain as your constant companion. Often, you find yourself compromising or looking for better ways of doing things, so your pain isn’t exacerbated.

One of the areas of life with Chronic Pain which is often not talked about is intimacy and your sexual well-being. These are crucial components of a good relationship, but what happens when pain causes you to withdraw from sexual relations, and intimacy begins to suffer? Let’s talk about some of the reasons this happens and what can be done.

Difficulties with intimacy may stem from various causes, including increased pain during sexual activity, a lack of arousal and accompanying vaginal dryness, the inability to reach orgasm, side effects from the use of opioids and other commonly-used medications (eg, certain antidepressants), a past history of sexual abuse, and issues with communication in general.

Because of Chronic Pain, you may find your overall relationship has begun to suffer. A partner may withdraw from you because they don’t know how to help you. This translates to the bedroom, where they may be afraid to cause you more pain or they’re dealing with their own issues regarding your health. Perhaps your partner has become resentful of the extra burden placed on them with your inability to do certain chores now.

A change in standard routines can be upsetting for everyone and this may cause extra fatigue for you both, which also causes you to withdraw from intimacy. Sleep may be what you crave the most, and when your partner wants to have sex, it’s the last thing on your mind.

So how do you overcome these issues? What do you do to make sex more enjoyable for both of you? Here is an expanded list of ideas from a previous post that might be a good starting point.

  • Talk. Make a point of talking openly and honestly about what you are feeling. If there is fear about pain, talk about it and what you can do to alleviate any extra. If you feel disconnected from your partner because it’s been a long time since you last were intimate, talk about those feelings and what you’re worrying about. Do you have scars or extra weight that is causing you concern? Be honest about how you feel. It can be very vulnerable to speak the truth, but it often brings you closer to your partner in the long run.
  • Touch. Exploring your partner’s body through touch is an exciting way to express your sexual feelings. This can include holding hands, cuddling, fondling, stroking, massaging and kissing. Touch in any form increases feelings of intimacy.
  • Self-stimulation. Masturbation is a normal and healthy way to fulfil your sexual needs. One partner may use masturbation during mutual sexual activity if the other partner is unable to be very active.
  • Oral sex. It can be an alternative or supplement to traditional intercourse.
  • Toys. Use of various sex toys can help loosen inhibitions, relax the body and make intercourse more enjoyable.
  • Different positions. Lie side by side, kneel or sit. Look in your library or bookstore for a guide that describes and illustrates different ways to have intercourse. If you’re embarrassed to get this kind of book locally, try an online book retailer.
  • Vibrators and lubricants. A vibrator can add pleasure without physical exertion. If lack of natural lubrication is a problem, over-the-counter lubricants can prevent pain from vaginal dryness.
  • Pillows and wedges. Make use of pillows and wedges to help find comfortable positions that alleviate pressure points. A good sex shop can help you find products specifically made for this purpose.
  • Change your expectations. Because reaching orgasm can be almost impossible when you are on certain medications, you may find changing your expectations for sex will help you enjoy lovemaking more. Don’t make orgasm the ultimate goal…just enjoy sex for what it is – a pleasurable experience.
  • Ask for what you need. Listen to your body and what it’s telling you during sex. If certain activities make you feel better, do more of that. Lovemaking doesn’t always have to end in intercourse. Oral sex during a lovemaking session may be all that you desire, and there’s nothing wrong with that.
  • Prepare in Advance. It’s important for people with Chronic Pain to understand that sexual activity often takes a lot of planning. There is not as much spontaneity as there used to be. You may find you need to take your pain medication, apply heat, or stretch before sexual activity. This is also a good time to try increasing your arousal by reading erotica, watching a video, or having your partner give you a massage in the area of your pain.
  • Timing. Choose a time of day when you have less pain as a time to be sexually active. For some people as the day goes on, the pain gets worse, but the opposite also may be true for others. If you have kids, you may have to sneak away for a quickie, but even that is better than no sex at all. If you can arrange for the kids to be away overnight, it gives you plenty of time to relax and set the stage for intimacy.

Sex is meant to be a natural part of a relationship. Just because you live with Chronic Pain doesn’t preclude you from being able to enjoy lovemaking with your partner. You might want to try some of these products to bring a new spark to your bed (or living room or bathroom or…)

Kiss Me Massage Oil

Chronic Pain And Intimacy (And How To Spice Up Your Life)

Lynk Anal Lubricant

Chronic Pain And Intimacy (And How To Spice Up Your Life)

Kegel Exercisor and App

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Female Stimulant

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Personal Wand Massager

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Personal Portable Vibrator

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Love Worth Making – an Intimacy Book

Chronic Pain And Intimacy (And How To Spice Up Your Life)

Remember,

There Is Always Hope

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It’s Okay To Be Angry About Chronic Illness (I Am!)

Note: This post contains Affiliate Links which pay me a small percentage of your purchase price at no cost to you.

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Image by Free-Photos from Pixabay

The Beginning

I want to tackle a hard subject today…the emotions that surround living with a Chronic Illness. Every day, we survive the physical pain, but we don’t always talk about the emotional pain that comes with being ill. Let’s change that now. 

When I first started feeling the effects of Fibromyalgia and Osteoarthritis along with my other Chronic Illnesses, I was generally able to function without a lot of changes in my life. I needed some pain medication but found that it helped and didn’t really alter my life, so ended up having some fairly easy years after my initial diagnosis. 

After a period of time, the medication needed to be increased and new drugs had to be introduced to help combat the increasing pain and symptoms. I started taking Lyrica for my Fibro  – a drug that saw me gain 40lbs in 3 months. This is when I first realized that having Chronic Illness was affecting me mentally – I was pissed about the weight gain but resigned to the fact I’d have to live with it. Thankfully my doctor worked with me to find Cymbalta instead and I managed to lose most of the weight I had gained. 

Thus began a pattern where the drugs would work for a while and then lose their effectiveness, necessitating an increase or change in meds, which triggered more anger and emotion. It was a vicious circle…I just wanted to be rid of the pain I was in, but it was getting harder and harder. The side effects of the various meds being introduced were also debilitating and my anger grew at what my body was putting me through. 

As Things Changed

Then came the point where my body had become so broken down that I needed to leave my job and go on long term disability. I can still remember to this day, 10 years later, how incredibly disappointed in myself I was. My body had betrayed me in every way possible. I was at the top of my career with the opportunity to move into some dream roles and suddenly that was all snatched away from me. Devastated doesn’t even begin to come close to how I felt and I ended up in a depression that was hard to come back from. 

It took me a long time to realize that my feelings were valid and I was entitled to feel how I felt. I thought I had to suck it up for everyone around me, and that just wasn’t a place I was ready for. I hadn’t processed my emotions, and they felt just as raw a year later as they had when I first left work. It was only through taking some Cognitive Behaviour Therapy (CBT) classes that I started to see how I could validate my feelings yet work through them and come out stronger. 

Having these strong emotions was scary though because I couldn’t separate them at first from the actions of being in pain, and just feeling like a failure as a person. It took time to realize that I had not failed, but my body had. Two very different things. By recognizing the difference, I was able to start accepting that I was not a bad person and that I had done nothing to cause this to happen.

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Image by Sarah Lötscher from Pixabay 

It’s Not Your Fault

I didn’t ask for Chronic Pain and Chronic Fatigue. I was simply unlucky enough to be a person to have to live with these conditions and that meant I had to find a healthier way of dealing with the emotions this generated. I was not unreliable, my health caused my reliability to suffer. My worth was not just because of my job, but by virtue of simply being here. I was still a good person who had something bad happen to her. 

Do you see where I’m coming from and what I’m trying to say? Just because you have a Chronic Illness doesn’t make you a bad person. This condition has happened to you and changed you, against your will. Learning how to live with it becomes the new normal. Once I recognized this, I was able to take a step back and start taking my life back again. 

Making Changes

I worked with my doctor to find a treatment plan that benefited me. This included some medication changes and additions, as well as adding healthy new components to my life such as meditation, music therapy, gentle exercise, stretching, beginners yoga and balancing my eating habits. I stopped feeling guilty when I had to cancel or change plans because Illness took over. I couldn’t help it when those things happened, so why blame myself? I put the blame where it belonged…on my Illnesses, and left it there. 

I was blessed to be able to start this blog, so I could reach out to others with Chronic Pain conditions and help them navigate their way through their experiences. It was very empowering for me and I gained back huge amounts of confidence as I wrote articles and posts. Knowing I was reaching others and actually helping them was a huge confidence booster. 

I also found myself able to start volunteering again, and now sit on 4 different committees, all devoted to aspects of health care. I am a member of a Provincial Measurement Working Group, creating a survey for patients in BC, Canada about their ER experiences. I continue to seek out new opportunities to volunteer and was recently nominated for two WEGO Health Awards – one for Best in Show: Blog and one for Best Kept Secret (regarding my blog). You can click here for more information about my nominations. 

To wrap this up, I want to reiterate that I think it’s important to sit with your feelings on a regular basis when you live with Chronic Illness. If you need the help of a professional therapist to process what you’re going through, do it. There’s no shame and definitely no harm in learning how to deal with all the emotions that come with a Chronic condition. In fact, I highly recommend it as a part of your overall treatment plan. 

We go through so much on a daily basis that the notion we’re not affected emotionally is ludicrous. Don’t fall into the trap of being “stoic” and taking the attitude that you can handle things on your own if you truly can’t. Reach out for help, whether it be a professional, a friend, or a spiritual advisor. The peace of mind of knowing you’re not alone in your feelings is precious. And remember…

There Is Always Hope

 

 

Coping With Loneliness When You Have Fibromyalgia

The Problem of Loneliness

Chronic pain and Invisible Illness are difficult conditions to live with and can lead to social withdrawal and loneliness. When you get sick, not only do you have to process and deal with things like surgeries, recovery, medications, new symptoms and flare-ups but socially you may have to give up hobbies and activities you once loved, making it hard to nurture friendships and relationships with those close to you.

 

It’s hard for those who love you to understand why you might have to cancel plans last minute or leave during the middle of the evening. Because they’ve never experienced what you’re going through, it’s hard to have a frame of reference. Unless you’ve lived it, it’s impossible to make others understand.

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Social Isolation Is Serious

Because of these changes that we have to make – like leaving in the middle of something or cancelling plans – we open ourselves up to feelings of social isolation, depression and anxiety and guilt.

Social isolation is defined as an occurrence when a person lacks opportunities to interact with people while loneliness is the subjective experience of distress over not having enough social relationships or enough contact with people. It is possible for a person with a chronic illness to be socially isolated and not feel lonely and someone with a chronic illness can feel lonely, while not being socially isolated. There are several issues that people with chronic illness face that can lead to social isolation and feeling lonely:

  • Disbelief from others when you don’t have a clear diagnosis
  • Physical limitations due to pain or fatigue
  • The unpredictability of symptom onset
  • The trigger of symptoms related to noises, smells, etc.
  • Lack of a strong support system (Family and/or Friends)
  • Changes in employment or financial stability
  • Loss of hobbies and outside activities

Social isolation and feeling lonely are important health problems and should not be overlooked. The chronic illness population is at an even higher risk for social isolation and this problem should be addressed with your Doctor along with other symptoms and risk factors.

What You Can Do About It

When you are socially isolated and have feelings of loneliness, it can actually make your chronic illness worse. The longer you are experiencing isolation or loneliness, the more you start to develop feelings of shame, guilt, inadequacy, distrust and abandonment toward yourself and others. The more these feelings grow, the less likely you are to seek out real human connections.

So what can you do when you start having these feelings?

1. Recognize loneliness for what it is, and accept that you have these feelings. Self-awareness is important in making positive changes. When you catch yourself falling into old habits, you’ll be able to more quickly turn things around.

2. Use Cognitive Behaviour Therapy (CBT) to help reframe your thoughts to become more positive and open to socialization. This can be done with the help of a therapist or through online courses and over time, can be very effective.

3. Resist the temptation to isolate yourself and start forcing yourself to recognize if this is your “go-to response. Deliberately try doing the opposite of what you’re feeling – instead of retreating into watching TV, take a walk or pick up the phone and call someone. The more you resist the temptation to isolate, the easier it becomes

4. Fill your life with loving positive people who are patient and trustworthy and who truly try to understand what you are going through. They will be your encouragers and biggest support system. Remove negative people from your life…you don’t need their energy.

5. Try one new thing each week that will get you to meet new people. Try an art class, go to yoga, volunteer… anything that will get you to meet new people who like doing things that you like to do.

6. Seek out a support group for your illness. This is a great way to meet people who really do understand what you’re going through. Even an online group is fine to get started as being with like-minded people will help to engage you instead of isolating you.

7. Ask for what you need in your life. Don’t feel you’re being a burden on others…when someone asks what they can do for you to help, they genuinely want to help. Let them…give them the opportunity to be of service to you. Perhaps it’s to invite you out for coffee once a week or to go take a class together. You’ll be helping them as much as they will be helping you.

8. Consider therapy. It can help you explore any deeper issues that might be contributing to loneliness or social isolation. Therapy can also be a great accountability and skills training support to help you manage all of the difficult things you are going through in a safe way.

Remember, 

There Is Always Hope

Changing Doctors When You’re Chronically Ill

For those with “invisible” illness, it’s difficult to find a doctor who believes you’re sick – not just depressed, not just anxious, not just tired – but sick.

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So what happens when you find that Physician and then they move on?

I started out by seeing a Naturopathic Doctor in Victoria because I needed nutritional care. My previous doctor had supplied me with enough of my prescriptions to last for 3 months, so that wasn’t as big a concern for me. Dr. Holewa let me know that a new GP would be opening his practice in the same clinic she was located and I called to be put on the waiting list to belong…news about the new doctor had already started circulating in the community and everyone was signing up! 

I was still able to get an appointment though, for the last day before the Christmas holidays in 2013. It was basically an interview between the Doctor and me, to see if we were a fit and if he was willing to take me on as a patient, given my challenging health history. Dr. Leong and I really hit it off and he agreed to accept me into his practice (along with my husband). What a relief!

Now, I don’t know what it’s like to try and find a doctor where you live. If you are in the USA, I believe it’s fairly easy. The problem is finding the RIGHT doctor…one who meshes with you in terms of beliefs and who blends with your personality. You want strong medical knowledge, a good office staff, decent parking and hours and the feeling that you’ve found “the best” when you see him/her. I found all of that with Dr. Leong and so we began a 5-year patient/doctor relationship that took us through all my health problems, including my hip replacement, brush with skin cancer and more. And then one day, he told me he was leaving the practice and moving to a smaller town up-Island. 

 

Closing The Practice

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The word I heard most from his other patients has been “devastating,” I absolutely concurred. Dr. Leong was highly respected and well loved and the thought of being without him was almost too much to take in. His main reason for leaving was that he wanted to live in a smaller town, and at first, I thought I would simply continue to see him, as his new practice was only a 30-minute drive away. The reality though was that there were no buses that took me there and I would be forever reliant on my husband taking time off work to drive me. That just wasn’t feasible so not only was I losing a good Doctor, I was going to have to find a new one too (there were no plans to replace him in the clinic). 

What’s the big deal? Well, as I said, there is a shortage of doctors in my Province. Recommendations filled my email, but the fact was no other doctor in town was taking on new patients. It looked like most of us were going to be resigned to using Urgent Care for our medical treatment. The thought of that filled me with dismay. I needed a good working relationship with my Doctor because of my history and that simply wouldn’t happen in an Urgent Care facility. 

Then one day, about three weeks after first receiving the news, word came from the office receptionist that there was a new doctor in town who would be taking on a limited number of new patients. My clinic’s receptionist faxed the referral to the office where this new Doctor would be setting up – not that far from where I was currently going. It seemed that this Doctor had requested from several medical offices that they send their “best patients” to her…and I was one of them! Dr. Penny Wilson agreed to take me on along with my husband! What a relief!! She is here for a year from Australia but promised that if she decided to go back home at the end of the year, one of the other doctors in the new clinic would take us on. My relief was immense.

 

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Conclusion

For those of you who are going through this situation right now, you have my sympathy and my empathy. It can be frightening to be left without a safety net. Keep asking at other offices about being put on a waiting list, and check with your family and friends to see if their doctor can take you on because of your relationship and closeness.

So what DO you do when your doctor leaves and there is no doctor to take over? I wish I had an answer for that. Many doctors have replacements come in when they leave, or the clinic they are leaving hires someone new. When that’s not in the works, you can be left scrambling and in the case of being a Patient with Chronic Pain, that’s so frustrating. Frequent visits are normal because of medication changes, new symptoms to be checked and old symptoms revisited. My best advice is to check with the Doctor who is leaving and ask if there is a succession plan. What do THEY recommend you do?

Having a Doctor leave his practice is a scary prospect. I hope that you never find yourself in the same position I was in, but if you do…I hope it works out well like it did for me. Keep the faith…remember,

There is always hope 

10 Celebrities Who Live With Fibromyalgia

Fibromyalgia is a condition that affects millions of people in North America. While typically thought of as an “everyday person”s condition, there are a number of celebrities who live with Fibromyalgia who have talked about it in public. It’s helpful to know we’re not alone, and because of these people, Fibromyalgia is starting to gain more recognition.

Here is a list of 10 Celebrities who live with Fibromyalgia.

Lady Gaga

LadyGaga

Lady Gaga is perhaps the most well-known celebrity with Fibromyalgia. After struggling with chronic pain for many years, she confirmed in September 2017 that the cause of her pain was fibromyalgia.

In her Netflix documentary “Gaga: Five Foot Two,” released on September 22/18, Gaga opened up about the challenges of finding treatments and coping techniques to help manage her symptoms. She is seen using ice packs and trying deep massage and dry needling as ways to help manage the pain.

“I am praying that more and more people come forward and we can all share what helps/hurts so we can help each other” Gaga said in a recent tweet.

Morgan Freeman

Morgan Freeman Best Movies and TV Shows

Morgan Freeman is the actor best known for roles in The Shawshank Redemption, The Bucket List with Jack Nicholson and for winning an Academy Award for his role as a beaten up cornerman for Clint Eastwood in Million Dollar Baby.

In 2008, Morgan Freeman was involved in a car crash that left him with multiple injuries, including a shattered left arm. He went through a 4-hour long surgery to save his arm and has talked in several interviews since he continues to experience “excruciating” nerve pain and now lives with fibromyalgia.

In 2015 he told The Daily Beast he treats the pain with marijuana. “Marijuana has many useful uses,” he says. “I have fibromyalgia pain in this arm, and the only thing that offers any relief is marijuana”.

Lena Dunham

Though she had previously been vocal about her struggles with endometriosis and chronic pain, Lena Dunham revealed in an Instagram post in October of 2018 that she has fibromyalgia. She described what it’s like to have an “invisible” illness like fibro, writing, “I appear to be totally able-bodied but it’s complex, and I am just trying to do everything required to maintain a life of joy and service. My work costs everything I have. This is fibromyalgia. It’s little understood and so even though I have a lot of knowledge and support it’s hard to shake the feeling I am crazy. But I’m not (at least not this way!) and you’re not.”

Dunham continued to say that pain, however it presents — whether it has a visible culprit or not — is valid. She wrote, “Your pain, whatever shape it takes, is yours and so it is real. I believe you when you say you hurt. I have learned time and time again how important it is to believe.”

Sinead O’Connor


Sinead O’Connor is an Irish singer-songwriter who stepped away from music in 2003 because she was struggling with fibromyalgia and wanted to take care of her children.

“Fibromyalgia is not curable. But it’s manageable,” O’Connor said in a 2005 interview with HOTPRESS. “I have a high pain threshold, so that helps – it’s the tiredness part that I have difficulty with. You get to know your patterns and limits, though, so you can work and plan around it. It is made worse, obviously, by stress. So you have to try to keep life quiet and peaceful.”

Sinead returned to the music scene in 2005. Despite numerous setbacks, she said she hopes to continue singing and doing what she loves but stays away from the parts that cause her excessive stress, which can exacerbate fibromyalgia symptoms.

Mary McDonough

“The Waltons” actress Mary McDonough has been very open about her battles with fibromyalgia, lupus and Sjogren’s syndrome. She believes she developed the conditions after having an adverse reaction to breast implants she had inserted in an effort to reinvent herself following the series’ end.

“Within 24 hours I broke out into a rash all over my back and my chest,” McDonough told Smashing Interviews Magazine. “But over the course of the 10 years, I just couldn’t put my finger on that. I just didn’t feel right. The chronic fatigue set in, the rashes, the rash across my nose and the bridge of my face which we now know is like a lupus rash, the joint pain, the muscle stiffness, eventually being diagnosed with fibromyalgia, and then the collagen disorder called Sjogren’s syndrome, my hair fell out and I would be tired all of the time.”

McDonough is now a public speaker, author and workshop leader, often talking with young women about their struggles with body image and self-esteem.

Kyle Richards

“Real Housewives of Beverly Hills” star Kyle Richards said she first became sick while her mom was sick with cancer, but was initially told she was depressed because her mom had passed. 

A friend told her she might have fibromyalgia, so she went to a doctor who specializes in the condition who confirmed her diagnosis. “All of a sudden I felt like I had an answer and I felt better because it causes so much anxiety [not knowing],” Richards said.

Richards has since sought out alternative methods for treating her fibromyalgia pain — on “The Healer,” she worked with Charlie Goldsmith, an “energy healer” who aims to help people reduce their chronic pain.

Janeane Garofalo

Actress and comedian Janeane Garofalo has been very open throughout her career about her struggles with fibromyalgia as well as mental and emotional issues, including anxiety and depression. She has even incorporated her fibro into her stand-up routine, using humour and laughter to cope with the pain she experiences.

“I had no idea I was chronically dissatisfied,” she said about being prescribed an antidepressant for her fibromyalgia.

Michael James Hastings

Michael James Hastings, known for his role as Captain Mike on “The West Wing,” had to retire from being a school teacher at age 35 due to fibromyalgia. It was his chronic pain that led him to move to Los Angeles to pursue a part-time acting career.

Hastings has said that he copes with the symptoms of fibro with natural means, such as supplements, exercise, massage therapy, acupuncture and visits to the chiropractor.

“I also have learned to accept that some days I am not going to be able to keep up with my schedule or other peoples’ schedules and I just need to rest and ‘lighten up,’” he said in an interview with the website Back Pain Relief.

A.J. Langer

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Actress A.J. Langer, best known for her role on “My So-Called Life,” “Seinfeld” and “Three Sisters,” was diagnosed with fibromyalgia as a teenager but continued to pursue acting. After filming “Three Sisters,” Langer took a break to figure out how to manage her symptoms and put her health first. She has experimented with a number of alternative therapies to help her cope with fibromyalgia, including surfing, yoga and meditation.

In an episode of the Aches and Gains podcast with Dr. Paul Christo, Langer said, “There are different levels of learning you go through with fibromyalgia… One is I’m all alone, you know, no one else understands this pain. And then there’s a point you can get to where it becomes universal and you understand that everybody’s got something. I’ve come to terms with the fact that my body has a fragile ecosystem and I’ve gotta tend to it.”

Kirsty Young

Kirsty Young

Kirsty Young, a broadcaster on the BBC Radio 4 show “Desert Island Discs,” announced in 2018 that she would be taking a break from the position due to fibromyalgia. She explained: “Casting away some of the world’s most fascinating people is a wonderful job – however, I’m having to take some time away from Desert Island Discs as I’m suffering from a form of fibromyalgia.”

Young indicated that she hoped to spend some time healing and then return to the show.

 

It’s nice to know that celebrities are just like the rest of us and suffer through the same types of illnesses that we do. I commend all of these people for sharing their stories in the public eye. To them and to you, I say…

There Is Always Hope!

10 Things I’ve Learned About Chronic Pain

If you’ve read my blog before, you know that I live with Chronic Pain and Chronic Fatigue. My pain comes from Fibromyalgia, Osteoarthritis in all my major joints, Myofascial Pain, a condition called Trigeminal Neuralgia, Diabetes (and Neuropathy that comes from that), Pelvic Adhesions, a spinal condition called Forestier’s Disease, aka D.I.S.H. which stands for Diffuse Idiopathic Skeletal Hyperostosis, Gastroparesis and several other medical conditions.

The author showing various pictures of her face in pain

My many faces of pain

I’ve been living with Chronic pain for over 30 years now, from the time I was a teen, and I’ve learned a few things in those years. I’d like to share 10 of those things with you now.

1. THERE IS ALWAYS HOPE

No matter how long I’ve been in pain for, I’ve never given up hope that things are going to get better. Some days I have are pure agony. Some days are pure delight. I cling to the good days as a reminder that things can be better and often are. There is always hope.

2. A GOOD DOCTOR IS TO BE TREASURED

Doctors have a hard time treating patients with chronic pain because they haven’t been trained well. They’re trained to diagnose a problem and solve it, so chronic pain is frustrating for them as well. If you don’t have a sympathetic doctor who is doing everything they can for you, find another doctor. When you do find one, be honest with them. Share everything…your depression, your anger, your worries. A good doctor wants to help you, but if you can’t share with them, you’re not giving them the chance to do all they can.

3. SUPPORT GROUPS AREN’T RIGHT FOR EVERYONE

Some people thrive in a support group. Others tend to get tired of the constant back patting and “Oh my gawd, I’m so sorry” conversations. Some are in the middle. I think a support group can be a great thing, as long as it’s the right fit. You want a group where you can feel heard and valued while offering support to the others as well – not just a one-way street. I also think it’s important to not jump into every group you hear about. That just becomes confusing and almost like a competition, to see how much sympathy you can drum up. You have to be willing to give back and you can’t forge honest relationships with people when you’re in a dozen active groups in my opinion. Unless that’s all you do all day long. And if that’s the case, I feel sorry for you, because you’re obviously not getting something you truly need.

4. CHRONIC PAIN IS ALMOST IMPOSSIBLE TO EXPLAIN TO OTHERS

Despite having great tools like the Spoon Theory and the Battery Analogy to talk about how much energy it costs us to live with chronic pain, it’s almost impossible to get others to understand what it’s like to live with chronic pain day in and day out. Here’s the thing…THE PAIN NEVER GOES AWAY. I can’t make it any more clear than that. No matter what I’m doing, or not doing. I’m hurting. Sometimes I’m in agony, like when I get a Trigeminal Neuralgia Flare up. Try to imagine the last time you experienced brain freeze from eating/drinking something cold…do you remember that sensation? That agonizing pierce of pain in your brain?  Now try to imagine that same feeling but in your cheekbone…for 12 hours in a row. Can’t imagine it?? Go try and get brain freeze as a reminder. That’s what my TN flare-ups are like. They start in my cheekbone and spread to my sinus cavity and my eye, then down to my jaw, and to my esophagus. I get spasms in my throat and often I get chest pain as well. For 12 hours.

My Fibromyalgia pain feels like my limbs are in concrete…it’s a heavy throbbing sensation in my arms and legs that make them impossible to move. The Neuropathy I feel in my feet is like pins and needles that never go away. My back pain is so intolerable that I can’t sweep my floors for more than 5 minutes without my lower spine seizing up.

5. DID I MENTION, THE PAIN NEVER GOES AWAY.

Sometimes it lightens up a bit, maybe after I’ve had a rare good night’s sleep, but if I’ve done too much on a particular day, the next day will be agony. Every day is different, and I’ve learned that there is no rhyme or reason as to what might cause a flare and why some days are better than others. Even as I’m typing this, my hands and wrists are throbbing and I’m making more mistakes typing than I normally do. When I sleep, I have to make sure my fingers aren’t curled, or I’ll wake up and won’t be able to move them.

6. COMFORT ROUTINES FOR FLARE UP DAYS ARE LIFESAVERS

In order to combat chronic pain, you need to have an arsenal of weapons at your disposal. This can include medications, therapies like massage or chiropractic care, acupuncture, heat, cold, stretching, yoga, and other items that help you when your pain is flaring up. Warm fluffy blankets and socks, a TENS machine or massaging unit, a roll-on pain medication – whatever you find works for you is part of your comfort routine and it’s important that you use these items when needed before your pain becomes even worse.

Kitten resting in a fluffy blanket

7. PACING REALLY DOES WORK

One of the important things you learn when you have chronic pain is that you have a limited amount of energy and you have to pace yourself throughout the day/week, etc. in order to stay ahead of the pain. Pacing is critical in helping to prevent flare-ups or in helping to reduce the number of flare-ups you may experience. There comes a point when you may have to consider outside help for chores because you can’t do them all. Perhaps a teenage neighbour can help with cleaning or laundry or care in the garden. Maybe you decide to hire a cleaning service twice a month for a deep clean that you can’t get to. Whatever you need and whatever you decide, my best advice is to lose the guilt. It’s not your fault you have chronic pain. You do what you need to, in order to make your home a happy one again.

8. SLEEP IS A VERY GOOD THING

Most people with chronic pain struggle to get good sleep, just by the very nature of being in pain. Take the time to establish a good sleep routine and don’t be afraid to nap during the day if that’s what your body requires. Just sent a timer for no more than 90 minutes (one sleep cycle) and do it early enough that it won’t interfere with bedtime. If you need to ask your doctor about sleep medications, then ask. Don’t be afraid of them, but perhaps try the more natural solutions first, like melatonin. Your doctor can give you the best advice.

9. WE ARE ALL WARRIORS

Just by the mere fact you are reading this and identifying with it, you are a warrior. Living with chronic pain is no picnic my friend and those of us who do it struggle every single day of our lives. Some days are good, some days are bad and some days are too difficult to talk about. It takes a special kind of strength to manage chronic pain and life at the same time and I admire every single person out there who is doing it. You are a warrior.

10. I’VE FINALLY ACCEPTED MY BODY THE WAY IT IS

For all my bravado and positive spirit, it took me a long time to learn to love this pain-filled body of mine. When I was forced to leave my job at the top of my game in 2009 I was devastated. I didn’t think I’d ever be useful to anyone again and I sank into a deep depression over how my body had let me down. It took several years before I was able to accept that this truly was my “new normal” and that returning to work wasn’t going to happen for me. When I found myself in a place where my health had improved somewhat, and I felt I had something to give back, I started volunteering for the Patient Voices Network and that really helped me get back on my feet. I am able to take part in committee work again, but at a pace that works for me and my health. I’m better able to accept my body and all it’s medical failings because I’ve found ways to contribute again.

I’ve also been able to get involved in hobbies again such as crafting and reading. I’m learning how to crochet and do needlepoint, all things I didn’t have time for when I was too busy working. So accepting my limitations also opened the door to new things for me to try, which has been a blessing. Perhaps you’re in the same place now, ready to accept that this is your new normal, and it’s an okay place to be. If you’re going to be in pain anyways, doesn’t it make sense to accept it and find ways to make the best of it.

CONCLUSION

I’ve been blessed with a positive nature that has helped to get me through a lot of difficult situations in my life. Chronic pain and my medical conditions are part of that. I believe in God and trust Jesus every day to be there for me. I have wonderful family and friends who have been so supportive of me. I belong to a great support group online that genuinely cares about me. More than anything though, and as my first point says,

There is always hope

Chronic Pain and Travelling

When you live with Chronic Pain and Chronic Fatigue, travelling for business and/or pleasure can become a real challenge. In the course of my volunteer work, I sit on 4 different committees and one working group, and of those, 2 of them require travel from my home in Langford, BC (just outside of Victoria) to Vancouver on the Mainland. It’s a short flight, only 30 minutes from runway to runway, but with everything that goes into it, it can end up being quite exhausting by the time the trip is over.

Plane and images of travelling

On my most recent trip to Vancouver, I came down with what was either food poisoning or a severe case of gastroenteritis on Thursday evening before my all day Friday meeting. I was in the bathroom every hour all night long, plus I had the stomach cramps and nausea, along with feeling extremely cold yet having the sweats. I haven’t been that sick in years!!!  On top of all that, I had a flare-up of my Trigeminal Neuralgia which combined to make me a very, VERY miserable girl.

I survived to the next day, made it through the meeting still having the shakes and sweating and still with facial pain from the TN, and all I wanted to do was get home as soon as possible. I arrived at the airport for my 7pm flight, only to find out it had been cancelled!!  The next flight was for 8pm so I had no choice but to wait. Then there came notice of a delay for that flight. Then another delay and another delay and still ANOTHER delay. In total, there were five delays for the flight and I didn’t get home until just before 11pm by the time it was all said and done.

I was so wiped out from being sick, from the travel, the intensity of the meeting…just everything. I went to bed immediately and didn’t wake up (except for pee breaks) until Sunday at 8am. I completely slept through Saturday!!

Chronic Pain And Travelling

Travel, in general, is not easy when you have Chronic Pain and being sick makes it worse. If you do have to travel, for business or pleasure, I’ve gathered a few tips to help make YOUR travels a bit easier the next time you’re flying or on the road:

General Considerations:

  • Plan a realistic itinerary.
  • Allow plenty of time.
  • Keep a small, lightweight, hands-free bag with essentials handy and check your main bag if traveling by air.
  • Ask, “How accessible are handicapped accommodations?”
  • Pack for all temperatures and environmental fluctuations. I get hot easily, so I pack clothing that is easy to layer. With careful coordination, I can make many outfits from fewer articles of clothing and lessen the load.
  • Make your bed as close to your bed at home as possible. Ask for extra pillows or blankets. (I always check the closet when I first arrive for these).
  • Use earplugs and a sleep mask.
  • Stay as close to your usual routine as possible, but also adjust with the local time to avoid jetlag.
  • Throw in an extra pair of reading and sunglasses from the dollar store so if you lose them, you don’t mind so much. A book light comes in handy and serves as a light that is easy to access when your unfamiliar hotel room is dark.

Medical-related

  • Carry a medical letter or a medical history summary that includes diagnoses with your physician’s contact information. This letter is handy and often available from your doctor. Ask if they might have such a thing or create your own.
  • Carry your medications with you and follow the tips for traveling with medications.
  • If you need a wheelchair, contact your airline and arrange to have one available.
  • Carry your insurance cards and identification at all times.

In the air, over the rails, and on the road

Amtrack Passenger Train

  • Take advantage of rest stops. Move about and stretch every chance you get. If you are traveling in America, Google has a map of rest stops across the U.S.
  • If you are confined to an airplane seat, keep blood and lymph moving by flexing and relaxing your joints every 20 to 30 minutes. Compression socks are helpful for circulation too.
  • Avoid alcohol and stay hydrated. Dehydration stresses the body as a whole.
  • Carry a healthy snack bag with fresh fruit and non-perishable foods, like protein bars, in case of a delay.
  • Dress for comfort in loose non-restrictive clothing and a pair of comfortable fail-safe shoes. This is not the time to try out those new sandals you bought!!
  • Make sure your plane, train, or bus is on time before leaving home – sign up for notification alerts when offered.

Travel comes with challenges for everyone, but especially those of us who live with conditions that cause chronic pain. But, if we respect our limitations and listen to what our body tells us, we can enjoy our time away from home.

Remember, there is always hope

 

Interview April – Jennifer Purrvis

It’s time to meet my next guest, the wonderful Jennifer Purrvis!

JenniferPurrvis

Introduce Yourself and tell us a bit about you….

My name is Jen. I grew up in the Houston area but live in Wellington, New Zealand. I moved to New Zealand when I was 19 and have lived in various areas in NZ but have kicked around in the capital city for 11 years. I have one daughter who will be 14 and 4 cats. I am single but formerly married. I’m a terrible cook but enjoy baking. I’m currently studying towards a Bachelor of Science in Psychology and hope to get admitted into a Masters of Forensic Psychology programme once I complete my undergraduate. I run Chronic Illness Cat, mostly on Facebook, but you’ll have seen us on other platforms too. Muffin is a real cat, who lives in France, but her dad is from Nelson in New Zealand. He sometimes comes back for a visit but we’ve never met up, though we should.

Chronic Illnesses/Disabilities I have…

I grew up a child of anxiety and depression. After I had my daughter I became severely agoraphobic and was diagnosed with a mood disorder, not otherwise specified. This would finally be diagnosed as Bipolar Disorder in 2018. I also have PMDD.  In 2007, I nearly lost my life after a doctor bagged an IV of an antibiotic I was orange banded as allergic to. I saw a huge white light. I felt a shock hit my body and felt fire ants start biting all over my body. That’s really all I remember. When I woke up I couldn’t unfold my arms or bear weight on my body. It would take years to regain my independence, my tolerance, my sanity. I was so, so angry about the disability attacking me, the pain I was constantly fighting and everything I was losing. It’s been nearly 12 years and things are so much better. I’m so much happier and freer and independent. However, in the last year, I’ve been diagnosed with Autoimmune Urticaria and I’m now on higher dose Cyclosporine. I’ve started to feel those dark shadows creeping in again. The pain is returning, so is the tiredness, reliance on drugs for pain, and I worry about stepping so far back.

My symptoms conditions began…

As a kid. I think I’ve always had an autoimmune disease. I first started getting fevers when I was 2 weeks old. I was just always sick. Always tired. I caught mono twice as a teen. I had chicken pox so severe as a kid I had them down my throat. I know I was severely depressed at 12. I had sleeping issues as a teen. I had coping methods that were not safe or would be suggested. I had a devastating eating disorder.

The night I got so sick back in 2007 was a normal night. I felt slightly off and started feeling worse and worse. I asked to go to the Emergency Department. I expected to have an infection but I didn’t expect to find myself fighting for my life. It turns out I had suspected sepsis. The bag of antibiotics was important, but so was understanding the importance of orange banding of patient allergies.

Fast Forward to the present and the first few days of realising I was getting sick again were terrifying. I knew something was wrong, but I never expected it to be something so full on. The first symptom I started experiencing was itching when sweating. Whenever and wherever the sweat would touch, I would feel like a jellyfish sting and hideous itching. I put it down to being ‘dirty’. The second major symptom that developed was a reaction to showering. Wherever the water hit, another jellyfish-like sting would develop, with burning and itching. But following the itching and burning came nausea, a feeling of being overwhelmed in the head and vomiting.

I started taking antihistamines, antihistamines and h-blockers, more antihistamines and finally saw a specialist who told me that due to my previous history of trialling drugs, I was to start Cyclosporine. At first, I was really optimistic because I had 2 weeks of showering with very little symptoms. But then, as soon as it had arrived, the optimism left. All the symptoms were back.

My diagnosis process has been…

Confusing. When I was first sick in 2007, no one knew what was wrong with me. I saw specialists and doctors all the time. People had opinions from Lupus to Still’s Disease to MS to ‘just experiencing a shock’. To get better care, we sold our home and moved. I saw another specialist who told me I had Lupus and “was just being a woman about it”. I was put on every drug you could find. Nothing helped. Nothing improved.

I saw just about every rheumatologist in the capital city. No one had answers for me. In the end, I just stopped going. It wasn’t worth the money. When I started getting sick again, and the blood tests were all fine, it started feeling like deja vu all over again.

However, this time, the specialist knew that this was Autoimmune Urticaria and that I had some dermagraphica which made him feel more confident. It felt unusual that I actually had symptoms someone was familiar with. Though, he did feel there was more autoimmune going on and asked if I wanted to begin looking for that and I told him I didn’t. I just couldn’t face doing it all again.

The hardest part of living with my disability/illness is…

Not knowing if I’m ever going to live normally as other people do. Will I be able to work? Will I finish my studies? Will I ever be independent? It scares the hell out of me. What if the medicines just get worse? I can’t nap through life. These questions just go around and around my mind sometimes. Fears for my future feel almost disabling at times.

A typical day for me involves…

Waking at 6:30. If it’s my week with my daughter then I get up with her and help her get ready for school. Once she’s left for the bus, I head back to bed. If I’m not with her, I go back to sleep. I try to wake up at 6:30 regardless so as to keep a regular rhythm. Sleep is so crucial for the maintenance and care of the Bipolar person. When I wake up I have a cup of tea and run errands or study, depending on the day. It’s really important for me to keep my grades up, so studying is important.

I’ve gotten it into my head that I need to do some sort of exercise, even though I’m not supposed to change my body temperature and/or sweat. I have some hand weights and I’m looking into belly dancing on youtube. I want to stay active for my brain and I want to stay mobile. But gosh, I know I’ve lost a lot of dexterity and put on weight since I stopped going to the gym. Swimming is out, maybe yoga? Am I that cliche? Just do some yoga?

I try to eat normally but I’ve got some problems with eating and I take Seroquel at night, so that makes up for any lost calories I haven’t eaten during the day. Right now Married at First Sight Australia is on, so I’m pretty addicted to that. Otherwise, I just try to rest and study. Glamorous, right?

One thing I cannot live without is…

Hot tea. I’m thoroughly addicted to caffeine and classic Bell Tea with milk gets me through my day. I probably go through 6 to 8 tea bags a day. It’s probably the reason I actually can move. Also, probably why I don’t sleep much.

Being ill taught me…

To take nothing for granted and to be amazingly grateful for the gifts that I have. Being able to walk is tremendous. I spent 9 months on the couch. Slowly I learned to crawl, then scoot and then walk again. Amazing. Getting the energy to work in cat rescue and change litter pans and chase after cats made me forever grateful for the second chance I was given. Now I’m studying to become independent. I’ve got my brain back. I will never not be angry and horrendously filled with rage at what happened to me, but I will also never not be amazed and filled with gratitude that I am where I am today. I’m a survivor.

The advice I’d given someone newly diagnosed…

Is that life goes on. It’s different but it goes on. It’s like when the brand of your favourite chip alters things and it’s never the same but you just go on buying it all the same. You can’t pretend nothing has changed, but at the same time, you still enjoy it enough to keep buying it. Some days are going to be horrific. And you’ll cry. You’re entitled to cry. And get mad. And kick at things. But some days will be not so bad too. And hopefully, you’ll get more of those not so bad days soon enough. That’s all you can ask for. And hugs. Ask for hugs. No one will think less of you for doing so.

My support system is…

Really small. I have a really truly, true-blood ride or die best friend on the net but-not-imaginary friend who gets me and loves me and would do anything for me named Alice. She’s also on the Page. I hope one day to be able to explain to her how much she means to me. And to thank her for lifting me up on those really shitty days.

I have my ex who does a lot of practical things for me. I have my daughter who shouldn’t have to grow up so quickly. And myself. I lean on my GP, Simon, a lot. And that’s it. I do a lot of the emotional stuff myself. I’ve become a lot quieter and controlled. Well, the Abilify has made me that way. I could do with a therapist. And a boyfriend. But we’ll see.

If I had one symptom-free day…

Gosh, I’d just sleep. Nothing would hurt. I’d shower too. Wash my hair and not throw up. Go lay in the sun. And sweat. Imagine!

One positive of having a chronic illness is…

That it gives me an amazing sense of humour and fantastic charm. I can joke around with just about anyone and I relate to a large number of people going through many things. It’s given me a sense of empathy that’s lead me to psychology and wanting to care for others. I’ve always been sort of activist-y anyways, but being sick has really pushed that envelope in fighting for others to get the same rights and access, which has been super useful having a daughter with extra needs.

Thanks so much for having me. You can find me and Muffin at the links below. And me and my kitties on my personals.

My Social Media links:
Facebook: https://www.facebook.com/ChronicIllnessCat
The Cat Tree: https://www.facebook.com/groups/thecattree/
Twitter: https://twitter.com/chronillcat
Instagram: https://www.instagram.com/chronicillnesscat/
Personal Instagram: https://www.instagram.com/smilingtabby/
Personal Twitter: https://twitter.com/kittypajama

Interview April – Amber Blackburn

Let’s welcome our next guest, the adorable Amber Blackburn!

AmberBlackburn

Introduce yourself and tell us a bit about you…

Hi y’all! My name is Amber Blackburn, I am 33 (almost 34) and live in the middle of the United States.  I am a Registered Nurse by trade who is now a Chronic Illness Blogger and Advocate due the fact that my health has declined to the point that I can no longer work a standard job!

Chronic illness(es)/disabilities I have…

Way too many for someone my age!  I don’t even know where to start!! I have Systemic Lupus (SLE), Fibromyalgia, Bertolottis Syndrome, IBS, Anxiety, Depression, Endometriosis, Interstitial Cystitis, Secondary Adrenal Insufficiency due to long term steroid use, POTs, Debilitating Migraines (Some of which are hemiplegic). I think that’s all my conditions. Or at least the important ones. I will note that many of my issues alone are not disabling but in combination with all the others they can be.

My symptoms/condition began and My diagnosis process was

I am going to combine these two questions as it makes my response easier.

I was admitted to the hospital for a respiratory illness in February 2012. I was in the hospital for 5 days and they could never really figure out what was going on. So I was put on high dose steroids and antibiotics and was told that would probably fix it. Over the following months more symptoms started showing up beyond the respiratory issues like extreme fatigue, joint pain and joint swelling. They had done all kinds of labs up to this point and nothing had shown up. But finally my Pulmonologist did a repeat ANA and lupus markers in April 2012 and they came back very positive. The joint pain and swelling continued to worsen to the point that I had to buy bigger shoes and could hardly walk.

So I saw a Rheumatologist in the summer of 2012 and was diagnosed with Systemic Lupus and Fibromyalgia. But looking back my symptoms go back to the late 90s, early 2000s. During my junior year of High School in 2001 I was diagnosed with Mono and it lasted SIX months, which does not happen. So we are pretty sure part of that was actually my first lupus flare. My official Endometriosis and Interstitial Cystitis diagnosis was in November 2011 but those symptoms went back to 1998 when I started having such horrible abdominal pain that no one could diagnose and blamed it on IBS.
The hardest part of living with my illness/disabilities is…

If I am being 100% honest the hardest part of living with my illnesses is not always dealing with my health. Outside of the pain and fatigue when they get really bad, I find the hardest part to be the social aspects. This may sound silly but it’s super hard to have to stay home all winter because you pick up every germ despite wearing a mask and washing your hands. It’s hard having to cancel plans because you don’t feel good enough to leave the house. Also, trying to explain to those who aren’t sick why you are canceling for the third time this month is awful and hard on relationships. For me (and surely others) the social aspect is probably the hardest part of living with a chronic illness, outside of the obvious health issues.

A typical day for me involves…

A typical day for me starts with me waking up and rolling over and stretching. Trying to see what hurts and what doesn’t. Then spending the next 10-15 min actually getting out of bed because if I don’t do it slowly I’ll pay for it later. What happens after that depends on the day. If I have a doctors appointment or somewhere to be, I will start the getting ready process which can take 10 mins or an hour depending on how I feel, and how ready I need to be. As well as how many breaks I will need to take. If I don’t have anywhere to be I go straight upstairs to eat and take care of my dogs. In the morning I will always be checking social media and do my daily posts (that sometimes become 3 times a week posts) on all my platforms.

I will most likely be writing for my blog and posting if it’s a day to post. I try to write something for the blog everyday, that way I don’t feel rushed at anytime because I don’t have anything written. I may not get a whole piece written every day but I try to write something. There is always an afternoon “nap” if I can’t get comfortable and sleep than I at least lay in bed and rest. And the evenings are usually pretty chill. Generally speaking, I spend the evenings watching a show or reading a book. I take a shower and try to be in bed by nine. When I fall asleep will depend on what I did that day and how much pain I’m in. Everyday is different for me because I never know how I will feel. I always know if I did a lot the day before that the next day will be a day of rest. Honestly, I can’t plan to far in advance because I never know how I will feel.

The one thing I cannot live without is…

I hate to admit this, my phone.  I say this because I use my phone for everything. I use it for communication, with my friends, family and medical providers. I use it to help run the Chronic Illness Support Group on Facebook (Lupie Groupies) I started about 5 years ago which continues to grow. I use it to blog, to research, and post on social media. And I use it for my jobs, I sell Senegence Makeup as well as the Chronic Illness Symptom Tracker that I created for those with chronic illness.. For those reasons my cell phone is important to me.

Being chronically ill/disabled has taught me…

Being chronically ill has taught me so so many things. But I honestly think the biggest thing is that being sick has a way of showing you who your true friends (and family sadly) are. I know it sounds cliche but it’s very true.

What advice would I give someone recently diagnosed…

The biggest piece of advice I would give to someone who was recently diagnosed would be to find a support group!  No matter if it is online or in person, just find one. Your friends and family are good to talk to, but a support group filled with people in similar situations is imperative for anyone newly diagnosed as well as for those who have been ill for many years. A support groups gives you a place where you can share what is really going on and know that you are talking to people who will understand and won’t judge you.

My support system is…

My support group is AMAZING!! I have the most amazing family and group of friends a person could ever ask for. If I didn’t have my family I don’t know where I would be right now. I am truly lucky.
If I had one day symptom/disability-free I would…

Go to the beach or lake (really any body of water) and spend the day outside playing in the water without the fear of a flare.

One positive of having a chronic illness/disability is…

One positive thing about having a chronic Illness is meeting a group of wonderful and amazingly strong people whom you would have probably never met had you not gotten sick.

My social media links are:

Interview April – Sharon Sayler

It’s time to meet our next guest, the wonderful Sharon Sayler. I’ve had the pleasure of being a guest on Sharon’s show and she’s delightful. Let’s hear more:

Sharon Sayler Headshot 2017 Hi-Res

Introduce yourself and tell us a bit about you…

First, thank you, Pamela, for creating an excellent platform for which we have this opportunity to share. I enjoy our mutual understanding that through thoughtful sharing of experiences others in our community know that they are not alone. That feeling of ‘am I the only one?’ can be isolating. Building community and awareness of ways to thrive and optimize our health journey are critical.

I’m Sharon Sayler, MBA, PCC and the founder of Competitive Edge Communications. I’m affectionately called the ‘Difficult People Whisperer’ by my clients. As a speaker and trainer, I teach professionals how to enhance their verbal and nonverbal communication skills to achieve their goals. According to GlobalGurus.org, I’m one of the top five experts in body language in the world.

I am also an international best-selling author of several books. A perennial favorite is ‘What Your Body Says and How to Master the Message: Inspire, Influence, Build Trust and Create Lasting Business Relationships’ (Wiley.) I  am also proud to share. I’ve also authored a best-selling children’s book ‘Pinky Chenille and the Rainbow Hunters’ with a second book in the Pinky Chenille series out soon.

Several years ago, life and work took an unexpected turn to become what my friends now call a “compelling-passion.” With my COURAGE communications techniques combined with my own experience dealing with a rare medical condition, I have been teaching others to become courageous self-advocates. Self-advocacy communication techniques can turn life transitions into transformations.

One of the ways I share the messages of ‘thriving regardless of your diagnosis’ and medical self-empowerment is through The Autoimmune Hour, now #1 show on OMTimes Radio along with the @UnderstandingAutoimmune YouTube channel, and the show’s website UnderstandingAutoimmune.com.

Chronic illness(es)/disabilities I have…

I dislike the word ‘have’ as I prefer my unconscious mind not to take ownership, yet for ease of understanding, the label my experience has is autoimmune more specifically Dermatomyositis. 

Dermatomyositis is a rare inflammatory (autoimmune) disease defined by muscle weakness and a distinctive skin rash. The painful, peeling rash had covered 60% of my body by the time I recovered from the initial ‘flare.’ 

My symptoms/condition began…

Suddenly and not so suddenly.  One morning I woke up after a late night cross-country flight and my legs felt incredibly weak. I had to use my arms to move my legs to stand. Although frightened, this seemed to work itself out over the next few hours. I chalked it up as ‘weird’ and kept working. Feeling tired and achy for the next two weeks, I suddenly broke out in hives that soon covered a large percentage of my body.

I realize now I’d had a variety of symptoms long before this episode that fit a wide range of conditions, and it wasn’t until the distinctive skin rash that a definitive diagnosis was made.

My diagnosis process was…

Bizarre to say the least. I had been seeing a specialist for about a year with her proclaiming a variety of diagnoses that didn’t seem to fit….

The day I walked in with the ‘now peeling distinctive skin rash’ she immediately excused herself and came back 10-minutes later with another doctor who without introduction, pulled out a magnifying glass and looked at various parts of the rash, looked at the first doctor, nodded ‘yes,’ and left the room. The first doctor that I had known for a few years dropped her head and slowly apologized to me for having dermatomyositis.

She could have said supercalifragilisticexpialidocious as the word ‘dermatomyositis’ meant nothing to me. The sad-news-body-language told me, ‘it’s not good.’ After that, the words blended together as I struggled internally to understand what she was saying – it was like my ears had stopped hearing and my brain had ‘frozen.’

We parted ways with an understanding I had to see a rheumatologist. Upon reaching the elevator, I immediately ‘googled’ the word, at which time the shock and grief hit hard.

The hardest part of living with my illness/disabilities is…

Losing perspective. Now, that I’ve been through multiple phases of recovery, I realize the worst part is losing perspective on ‘when is an itch, just an itch.’  The slightest change, the smallest strange pain, anything odd or different begins the mental gymnastics of Do I need to worry about this? What does this mean? Is this so important that I must seek medical attention immediately, can it wait until tomorrow, or what if I just let it run-its-course will I be okay?  And of course, dealing with all the new found food and chemical sensitivities as the body defenses seem to be stuck in hyperdrive make social occasions awkward.

A typical day for me involves…

Everything I used to do that I still want to do. The changes I see are I’m more consistent in choosing to set boundaries, say ‘no’ when I want to, remove myself from others drama and be conscious of my decisions and actions around what I should be doing for overall good health such as quality food, stress reduction, sleep, and exercise.

The one thing I cannot live without is…

Spending time creating joy, especially with my beautiful family and friends. Life is too short — spend it giving and receiving love. (And the irresistible passion I have for doing The Autoimmune Hour podcast and video show.)

Being ill/disabled has taught me…

I don’t consider myself ill or disabled, yet I’ve learned to be more patient and understanding. It’s crystal clear now, the old saying ‘that one can never really know what someone else is going through unless you’ve been there too.” My mantra these days is ‘Come from love. Always.’

What advice would I give someone recently diagnosed…

First, if you can, take time to absorb and sit with the ‘bad news.’ If it’s not immediately life-threatening, don’t make any major life decisions right away.

I remember I was told by a ‘top-notch’ doctor to have a surgery that in my mind would have made my life much worse in the long run, and with no real assurance that it would solve the immediate problem… I felt like they were treating me as if they were working on a car like ‘let’s remove the spark plugs and see if that works better….” Upon finding out that it wasn’t immediately necessary, I thanked them and sought a second opinion. 

That second opinion changed my worldview; the second doctor said, “That’s a surgeon’s answer to a problem they cannot solve.” Wise words that I use everywhere now as in each person/expert/etc. has a specific point of view and the more narrow their expertise, the more narrow their recommendations will probably be.

Always run options through the filter of “What are other ways I can view and solve ‘this?’ Remember, it’s okay to ‘fire’ someone. If someone is upset that I seek a second opinion. I say “Thank you for your time and no thank you.” I like to joke that there are as many varied opinions as there are experts.

Second, be careful how you talk about what you are going through. Our words create our reality. Words such as ‘poor me’ and ‘why me? can create our identity. Consider the word ‘have’ and how it denotes ‘ownership’ Do I want to own my diagnosis? No. I prefer to look at the word ‘have’ from the viewpoint that I can ‘have’ cockroaches, but that doesn’t mean I own them and that I can and will eradicate them. When said enough times your words become truth in your mind, and in the minds others too.

I prefer ‘I am having an autoimmune experience or journey.’ A diagnosis is just a label to chart a possible course based on symptoms and the prognosis is based on statistics — work hard to be on the positive side of the stats. Challenge yours and others’ conclusions on what your future will be. On The Autoimmune Hour, we have numerous stories of people thriving regardless of their diagnosis including Pamela who recently shared her Thriver story: www.UnderstandingAutoimmune.com/Jessen/.

My support system is…

My amazing family and friends as well as a team of medical professionals that are in alignment with, or at least, honor my view of ‘my body, my decision.’  And the UnderstandingAutoimmune’s Courage Club Community that is growing every day through the podcast and website.

If I had one-day symptom/disability-free, I would…

Hmmm, I don’t know. I’m finding ways to live fully and thrive regardless of my diagnosis. Maybe eat a whole loaf of fresh baked crusty bread slathered in homemade butter and raw honey at a quaint Parisian cafe!

One positive of having a chronic illness/disability is… 

A deeper appreciation of the quality and value of all life.

My social media links are:

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www.UnderstandingAutoimmune.com/Spreaker

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Twitter: @autoimmunehour