EDS

Thriving with EDS – Needing Support -Stepping into The Solution

Thriving with EDS – Needing Support- Stepping into “The Solution”

 

I quickly learned that only way to survive with EDS is with support. No matter how independent and self-sufficient I wanted to be, I needed others. Then, I discovered the only way to thrive living with EDS is with good supports and solid structure. The longer that I lived with this condition, I ended up needing support with practically everything. This was a very humbling experience and it became emotional for me. Every time I had to ask for help, I resisted it and ended up in some kind of sadness and tears. I missed being grateful because I was always feeling so much self-pity and defeat.

My list of supports to survive EDS and live a quality life became extensive. I needed supplement support with multi-vitamins and extra vitamin C. I need support carrying things. I needed knee supports, neck supports, back supports. I needed surgical supports. I also needed emotional support. I needed support in creating a strategy for survival. On some of my bad days, I needed support with keeping a positive attitude.

Not having support led to increased anxiety. The level of anxiety I was having always correlated with how much support I had for whatever health challenge was happening. I learned that to curb my anxiety, I needed to ask for help. Sometimes, a lot of help. Having people who knew about my condition and were reliable helpers for rides and listening mattered. I worried less when I knew that someone “had my back.” My problems arose when I tried to manage my condition without support. For a short time, I rebelliously practiced denial and attempted to forget that I had EDS and live like everyone else only to I hurt myself trying-mostly with injury or illness. My pride often was hurt when I hit a wall and found my limitations very limiting.

 

I had another obstacle to getting support. It was the shame I carried deep inside about my condition. I was ashamed to be young and needing so much help. I had to release shame and offer myself forgiveness for feeling bad about myself. Truth was, I was embarrassed to be me. Because it meant I was fragile, compromised, delicate, and vulnerable. I wasn’t what the world of overachievers was idolizing. I wasn’t what success was supposed to look like at my age. I wasn’t a tough warrior that fights, pushes through, and tackles life with fierceness, fire, and force. I was the opposite. Cautious, concerned, worried, fearful, and living life “low key” to avoid the spotlight and to avoid embarrassment. I didn’t want to expose myself.

My other problem was that I was surrounded by unsupportive people who seemed to target a weak, kind, and caring person like myself. The problem with those people was that they weren’t reliable and often criticized me for not being able to do whatever it was they wanted. These were the kind of people who used subtle forms of peer pressure. And I had a habit of caving under any pressure. Sometimes, I tried to force myself to tag-a-long to events they wanted, only to find myself exhausted and overextended from trying to keep up. I could have searched for people more my speed and pace that would have supported me. However, I wasn’t aware that I was being targeted for the simple fact that I so badly wanted to be like them. I was susceptible to toxic, pressuring people because I wanted a life that didn’t belong to me. I wanted to be normal. I wanted to live a normal life. I wanted to do what normal 20 and 30-year-olds did. I wanted to be like them. I just couldn’t. I physically couldn’t. I didn’t know that I had EDS and I certainly didn’t know who I was.

 

When I finally let that go, I let a lot go and started designing a different life and vision for myself. A vision that revolved around who I am. A lifestyle that was supportive for me. This is when I stepped into The Solution and out of all my problems. I started supporting myself. I started asking for support. I stopped shaming myself. I stopped hurting myself with “shoulds.” I sought better surroundings. I supported myself with common sense, ergonomics, and logic. I supported myself with self-compassion, self-forgiveness, and self-understanding. I stopped blaming myself for the genes I was born with. I supported myself with self-love. And that made all the difference.

 

EDS

Thriving with EDS – Accepting the Diagnosis Leads to Adjusting and Action

Thriving with EDS – Accepting the Diagnosis Leads to Adjusting and Action

(The 4 A’s to Answers: Awareness, Acceptance, Adjusting, Action)

I had a very hard time accepting my EDS diagnosis even after the confirmation of my genetics with undeniable blood work. I thought that I wouldn’t struggle with this part because it validated so many of my excruciating experiences of living in my body. But none of that mattered emotionally. Emotionally it was hard to accept the EDS diagnosis. For a few years, I practiced denial and so the diagnosis never really sunk in. That was until my second serious neck injury. If mission control was my brain, then I was running the risk of losing everything with these neck injuries. It was one thing to break my foot from my ankle rolling over but quite another thing to break my neck and be so dizzy that I couldn’t drive or lay backward at night to sleep. Or worse, tear an artery to my brain! I found my proverbial bottom with the second neck injury. I was incapacitated by it. From fear and risk of more injury, I was homebound and helpless in a lot of ways for weeks.

Finally, at the pain doctor, who was one of the most practical doctors that I had ever met, I got the message. What I liked about him was he thought the treatment all the way through. Anything that I wanted to do or try for temporary relief was always a long-term problem that I could potentially create for myself. There was no easy solution to EDS. I appreciated him because he knew more about connective tissue disorders than any doctor that I had ever met in my small town. I appreciated the fact that he didn’t just think in terms of knees and elbows but all the connective tissue of my body. He used the words “chronic condition” and life-long. It really hit me. I cried all the way home from the appointment realizing he was right. This EDS was not going away and the only thing he could offer was a strong suggestion to do physical therapy and stick with it like my life depended on it because quite frankly it did. He repeated the name of the physical therapist that he mentioned last time and I realized that I “dropped the ball” and never followed up by doing PT like he said the first time. He and I agreed that pain medication won’t solve my problem structurally. He and I agreed that Tylenol and natural remedies were my first line of defense and needed to be my first choices due to my stomach sensitivity and to prevent side-effects. I needed his guidance and his rational thought because I was just too emotional. He was talking logic, common sense, and reason. I was swirling with emotions that I had never felt before. It was a mixture of despair, hopelessness, fear, anxiety, heartache, heartbreak, grief, relief, and hope. I didn’t have a name for this complex feeling.

 

On the way home I realized that I needed emotional support for my EDS. This was hard to handle. This was tough to take. I was facing a life sentence of health issues and painful injuries. I was facing major restrictions on all my activities. I was facing a different life than I had planned for myself. I was facing the rapid deterioration of my body. I had to accept and adjust while grieving the loss of my life before the diagnosis. I needed support. I also needed the motivation to go to physical therapy and stop blaming my last knee injury on PT. I had hurt myself doing moves that were too hard on my joints. However, that PT was before I knew I had EDS. Now, I would be more careful and more aware.

 

The next morning, my epiphany came during the morning meditation. I started with an inspirational reading that talked about a simple yet profound parabole that Jesus had told people. It was the one about building a house on sand or stone. It was a story reminding us that the rain and winds of life come to everyone’s house at some point. However, those who build on stone will still be standing. I needed to still be standing. I had a young child to raise and who needed me. I needed to make my body the rock. Physical therapy could get me there. Being practical and taking advice could get me there. I knew that life was going to happen to me, the rains would fall, I needed to build my house to be strong if I was going to have a chance of standing. I could thrive with EDS if I listened to my body and to this one practical doctor’s wisdom. I had new hope.

 

EDS

Thriving with EDS – Adjusting

My Lesson: Adjust to a New Reality

Before the EDS diagnosis, before turning 35, I felt somewhat normal although deep down I knew I was always different. I enjoyed the things most everyone else enjoyed at my age. I did many activities that everyone else did, although I instinctively veered away from sports. I only felt a little sorry for myself. But then, something changed. Was it the pregnancy hormones or just turning 30? It may have been a combination of both. I had a hard time adjusting to the new limitations and restrictions that I had to place on myself to avoid injury and illness. I had to make accommodations for my body that annoyed and aggravated me (and others). I had to let so many things go that I loved, including going to the chiropractor. As much as I loved horseback riding it was backbreaking and I couldn’t take the pressure on my spine and the impact. I would be painfully sore for a week. I had to stop going to the gym because I kept breaking things with weight machines and ending up in the ER getting x rays that showed nothing. My life had to change.

 

When I couldn’t deny my invisible condition any longer, I began to grieve. Sadly, I allowed my grieving to turn into giving up. I gave up. Since PT wasn’t solving my post-pregnancy issue after 2 full years of every lunge imaginable, I decided it wasn’t worth the embarrassment of being there at such a young age walking around the elderly and frail. It felt like everyone was wondering why I was there. I certainly was! With a defeated attitude, I gave up on myself. I mistakenly quit because there was no cure for EDS, so why bother?

 

Quitting out of anger, self-pity, and resentment felt good for a while, that is, until my body started to deteriorate further due to my doing nothing. Then I had new injuries. Injuries from doing nothing. Weakness had set in, and that spelled disaster for my joints. Faced with new problems, I had to reconsider my position of “why bother.” If I wanted to be able to live independently, I had to adjust myself to my circumstances, my diagnosis, and the facts of aging with a connective tissue disorder. My new age had to mean new activities. To keep perspective, I began to list all the things that I instinctively knew that I couldn’t do as a kid and begin adding things that I now knew I couldn’t do like chiropractor adjustments, advanced yoga poses, fall into despair, and quit everything all together. To encourage myself, I had to begin to list the things that I could do and add new activities to that list. This new list included writing blogs, books, reading, walking, coffee shop mediations, and volunteering to help little kids. Both lists had to grow. I had to adjust.

When I adjusted, things became easier emotionally. I had more optimism when I looked at the list of things I could do. The “Can Do” list included things that I loved. My “Can’t Do Anymore” list included things that I used to love. I learned to love the memory of those activities and let those chapters close. I still thought of them fondly but no longer focused on that list. I stopped entertaining self-pity.  I opened up new chapters just waiting to be written.

Suggested Soul-work:

Make a list of things you “Can’t Do Any Longer” and a list of things you “Can Do and Enjoy.” Be sure to balance this out. Focus on the “Can Do” list. Think of the “Can’t Do” list as an exercise in self-discipline, self-control, and self-love.

Uncategorized

Thriving with EDS: First Things First – Accept the Diagnosis

Thriving with EDS

 

First Things First: Accept The Diagnosis

 

It wasn’t until my second neck injury and my second dislocated knee, that I finally had to admit to myself that I have this condition. I need to accept my diagnosis because aging and a connective tissue disorder didn’t quite mix – to say the least.

Yes, the genetics report came back positive for not one but two variant connective tissue genes. Yes, I was diagnosed. Yes, I knew I was different and felt different. But, no, I didn’t want to accept this. I tried a year-long denial of the disorder. Basically, I ignored it. I ignored my body. I put all the physical problems plaguing me on the back burner and did not put a team of experts together for myself and condition. I just wanted natural remedies to cure it all. I wanted an all natural approach. But was this doable? No. I had already proved that I couldn’t survive without the two abdominal surgeries in 2017. I had 5 organs removed from my body! All struggling in some way or another. My problems were nothing that eating vegetables and avoiding most of life could fix.

So, there I was sitting in bed, unable to move my neck without losing consciousness due to my neck being so unstable. There I was booking another doctor’s visit and trying to avoid an Emergency Room visit and call to an ambulance, which I found embarrassing and frustrating. People didn’t know what EDS was in the ER. And so, they certainly didn’t know how to treat it. I needed specialists, yet I lived in a remote area with very little knowledge of rare diseases.

First thing was first, I had to accept my diagnosis. From there, I could advocate for myself. I had to admit that I had Ehler’s Danlos Syndrome. I had EDS.

This was not easy to admit. I had my pride blocking me, but this condition was humbling me. Not being able to get up from the floor with my neck out and feeling so extremely dizzy that it felt like a loss of consciousness and control was my bottom. The bottom being that place that I could not allow myself to go further down. From there, being only in my thirties, I had to ask for help. Then, I need to accept the help. First things was first, I had to take the condition seriously and accept that this was the genetic “hand I was dealt.”

I had to ask myself a very emotional question, “What does fully accepting my diagnosis mean?”

I realized that I had to recalculate the life that I thought I would be living. I had to readjust my hopes, dreams, and expectations of myself. I had to reconsider my purpose, work, etc. I had to recraft my life to fit my diagnosis and make the best of it.

EDS

Thriving with EDS #1: Listen, Be Aware, Be Mindful

Thriving with EDS

 

Welcome to my helpful tips and suggestions on thriving with EDS. Thriving sounds so much better than surviving, right? Please take what you like and leave the rest. May some of this be just what you need.

 

Tip #1: Listen to Your Body

 

To thrive with Ehler’s Danlos Syndrome (EDS), I learned to listen to my body’s messages. Ignoring my body led to many unnecessary injuries, dislocations, strains, tears, handicaps, and permanent physical problems (that might have been otherwise avoided). After learning this valuable lesson the hard way, I decided to adopt a new mantra, “I listen to my body.” “I listen to my body.” “I honor and listen to my body.”

 

So no matter what others may have suggested as solutions for me, it always came down to my own inner wisdom. My body always had the final say, anyway. If it couldn’t do something, it just simply couldn’t do it. No one could argue with the truth. To avoid the consequences of not listening to my body, I learned to listen – intently! So, start listening to yours. Your body does have innate intelligence. Once you learn to listen, then you have to honor what you hear. (FYI: Most likely, you will hear pain.)

 

Lesson #1: Pain is a Message!

 

Tip #2: Increase your Awareness

 

I learned to appreciate pain as a messenger. It turned out that pain was not my enemy, it was my friend with a message. I learned to thank my pain for telling me that something was amiss. Fearing and loathing pain just kept me anxious and running from my own body. I would rush to the medicine cabinet to “shut it up” not realizing that the pain was a flag, a warning, a sign. Now, when I feel pain, I loving listen.

 

Listen with love to the pain, learn to sit with it before medicating it immediately to “shut it up.” What is it trying to tell you? Is there a joint out of place? Are you weak in the legs and need to adopt a strengthening program? Have you not moved in a few days and things started to compress? Where is the pain coming from? Ask your pain questions. It is important to know what it is trying to tell you. Pain is a signal to be aware of something happening in the body. Get as many specifics as you can. Go for the details. Sometimes the answers and solutions come from the little things. Honor the message of pain. Increase your awareness by diving into what the pain is saying vs. trying to avoid it. With awareness, you can take appropriate action, even if the action is resting and doing nothing. Avoiding pain with EDS is dangerous. Quite frankly, not possible. This doesn’t just apply to EDSers, it’s for every human body – just more so us and others like us. So, make peace with pain. And gain awareness to practice self-preservation, self-protection, and self-partnering.

(Basically, get really good at noticing things. Then, you will get good at connecting the dots.)

 

Tip #3 – Practice Mindfulness

 

With EDS, you will have to be mindful of your movements to avoid injuring yourself. Mindfulness can extend to eating, activities, people, chosen careers, and every other choice in life. If you are mindful of when you need to rest, move, avoid certain foods, then you can care for yourself in a better way and suffer less. Perhaps, you could begin a food log. You could be mindful of how your shower and if you tip your head back too far. You could be mindful of your posture sitting and if you slump and slough while you drive. You could begin to be mindful if you are trying to do too much. You could extend mindfulness into every area of your life to bring your awareness to what you are doing as a habit, inadvertently, or subconsciously. The dangers of not being mindful are great. For example, overeating leads to extra weight on the joints, isolating and staying in bed can lead to depression, certain foods could lead to horrible intestinal reactions, pushing yourself too hard at the gym or PT can lead to injury and embarrassing ER visits.

 

Practice mindfulness to be aware of what you are doing. Again, if you are not aware then you cannot make better decisions for your body. Start with becoming aware. Stop and say several times a day, “I am aware.” And bring your awareness to what you are doing. How are you sitting, standing? What are you eating? What is your day structured like? Is it helpful for your condition? Have you reached out for support for any overwhelming feelings you are having? Are you avoiding certain responsibilities to your health? Is there a slight pain somewhere in your body? I always listen to the smallest signals of pain, for that is where I have the greatest opportunity to change course and keep myself healthy and happy.

 

Recap:

Listen to your body. Embrace pain as a messenger. Become more aware. Practice mindfulness in everything you do. Ask your body questions. Listen. Then, honor yourself.

 

Suggested Mantras:

Try saying these out loud:

 

“I listen to my body.”

“I honor and listen to my body.”

“Thank you pain for telling me about that.”

“I am aware.”

 

Suggested Prayer:

Use the serenity prayer as often as needed. While we may not be able to change our DNA or condition, we can change our thoughts about it and attitude. We may even find a few practical things we can change when we have some serenity.

 

“God, grant me the serenity to accept the things I cannot change, the courage to change the things I can, and wisdom to know the difference.”

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