I am often asked about why I’m always feeling so terrible. Why am I so sporadic about posting and reviewing? Why do I barely leave my home anymore? And, if I am home all the time, why am I not reading, reviewing and posting?
I am going to attempt to share my story here. I would love to say that you will have all the answers and completely understand after this post, but I am sure there are many that have their own viewpoints. There are many that believe those of us with chronic conditions need to just “suck it up”.
I was one of those. I used to say that all of the time. That is my personality.
God knew I needed some compassion, so remember while reading this that it’s better to have compassion without God needing to teach it to you! ha 🙂
When I was younger, I was very outgoing and active. I always had friends around and was busy with every activity I could fit into my schedule. When I was 18, that all caught up with me. My body just crashed. It wasn’t all the activity, necessarily, but my body was not strong enough to carry all of that and I hadn’t known it.
I spent the year of 1996 confined to bed. I just couldn’t get up. I was so tired. Getting up and going to the bathroom was enough to make me need to take a few hour nap. It was unbelievable. I had no strength.
As I slowly built back up, I started back into all my activities again. This time, however, it wasn’t the same. I was a lot more tired and edgy. I would get angry a lot easier.
As years passed by, pregnancies and life got in the way, my pain became more acute. Doctor appointment after doctor appointment with nothing to show for it. “Do more yoga.” “Swim more.” “You just have fibromyalgia and chronic fatigue syndrome.”
Then there were the “friends” with statements and questions such as: “Why do you need a name for it so badly?” “Why don’t you just juice?” “Why don’t you exercise more?” “Why don’t you just push through the pain. It’s mind over matter!”
Now, I know their intentions were good (at least I hope they were!), but anyone with chronic pain will tell you that those suggestions are not helpful at all. Chances are very high that we have already heard of all those diets that will help. We’ve done the research. We’ve tried to find the answer.
Thankfully, I am very blessed to be one of the few that actually DID get an answer. When I was 37, I finally found out that what I have is called Ehlers-Danlos Syndrome (also known as EDS). It takes many forms and affects people differently, but if you want to have a basic idea of what the side effects are, just click here.
Let me give you the quickest way to describe EDS to you (at least the form I currently have). Every person has ligaments that are used to hold your skeletal system together and in place. When you work out, you stretch them and then they tighten back up stronger.
For someone with EDS, that’s not always the case. For me, my ligaments never tighten back up. Every time I work out, my ligaments stretch and stay that way. You can imagine how loose they are around my skeletal system. So, all those years of yoga? Worse thing the doctors could have told me to do. In their defense, they had no idea. But, this is why it is SO IMPORTANT to continue pushing until you find the answer! Yes, a name is important!
Because my ligaments are so stretchy now, they are not able to do their job and hold my skeletal system securely in place. My muscles try to overcompensate by tightening up, but this just causes even more pain and trigger points. My skeletal system is free to move about and frequently “pop” out of place. Ever had a slipped disc? Mine slide as I walk or move.
That is just the very beginning of what it does. The pain I am in on a daily basis is, at most times, unbearable. I must completely trust in God to give me the strength I need for each day for I cannot think of the future.
I don’t sleep. I don’t do much. After years of not knowing what I had, I found that the advice I was given only made things worse. I am in such terrible shape at 40 years old. Some of my personal symptoms (aside from overall pain):
- High Blood Pressure
- Under-active Thyroid
- Accelerated Heart Rate
- Fatigue (unable to even lift arms or stand at times)
- Restless Legs (Causing my entire body to jolt)
- Tension Headaches
- Severe Trigger Points all over
- Eye Weakness
- Knees are sprained in a permanent state
- Constant shifting of my back (and everywhere, really. The pain is worse in my back.)
- Foggy Brain
- Unable to sleep more than an hour or two at a time (3 hours of sleep is a good night for me)
- Delayed Sleep Syndrome
- Inability to make very many new memories
- Slow processing time when talking to people and responding
- Arthritis in my hands and lower back
- Inability to plan ahead
- Inability to turn head left and right due to tight muscles in neck
- Fragile bones
- Simple tasks (like showering, making a meal, etc…) are so overwhelming that I often cry and feel like I am going to throw up when I know they are coming up or while I am in the midst of them.
- Reading (one of my FAVORITE ACTIVITIES) causes headaches, fatigue and can not distract me from my pain enough to continue for long periods.
- Anxiety to go anywhere because I could get stuck feeling too terrible to get home.
- Anxiety to go anywhere because there are people there.
I am sure that I could continue (and my family could offer a list twice as long). However, you get the idea.
Now, what am I doing about it?
Well, there is no cure for EDS. It is only pain management. Realizing that, I went into this trying to find things that would remove the pain so I could function normally. I have had everything from trigger points shots, acupuncture, dry needling, pain patches that pumped narcotics into me 24/7, and much, much more. I came to realize that none of that did enough to be worth the effect it would have on my body long term. Years of chiropractic work, yoga and swimming have completely destroyed the stability of my ligaments.
Now, I am on minimal narcotics (by my choice to avoid addiction and constantly raising the amount as I become acclimated to medicine quickly). I try to use as many homeopathic remedies as possible and pray for wisdom.
So, there are so many things that I have mentioned here that are difficult to deal with on a daily basis. How about the things I am really thankful (in-spite of it/because of it):
- My husband and sons have learned compassion. They watch out for me above their own needs.
- I have learned compassion as I used to be annoyed by people with chronic problems.
- My faith has grown and my relationship with God is amazing. I have had to cling to Him and learn to trust Him throughout all this. I would be in a state of hysteria if it wasn’t for Him and His peace. Nobody could ever convince me that God doesn’t exist because my relationship with Him is so intimate that I lack all doubt.
- He has slowed me down. I used to always race around like crazy doing a million things and had no time to be still. I was angry because I was so overtired. Now, I am home and able to be a good mother and wife. I’m not too busy to love my family and be tuned into them.
- I recognize my true friends.
- God used it to save my son’s life (That’s a story for another day! You can email me if you want to hear about that. aTransParentMom@gmail.com)
Again, there are many things I could name, but my blessings far outweigh my troubles.
Yes, these are true. These are absolute truth. These are the things I cling to.
I pray for you, dear friends, as I know that chronic pain is something many of us struggle with. Unfortunately, many others do not recognize it for what it is. They don’t understand why we are skittish about scheduling things and often times have to cancel. They do not understand why we don’t just power through or juice or whatever. They don’t understand why we can look normal and healthy but say we feel as terrible as we do.
I get it. Hang in there. Find a way to give God glory through your pain and He will bless you more than you can imagine. You will begin to be thankful for the suffering. You will see how it has blessed your life (truthfully!). God can only show you the blessings and give you peace when you are content in His goodness. Trust Him. There’s a reason that you have it. Use it for His glory. That is what I have chosen and it has saved me from so much worse. It’s saved me from sever depression that is my constant shadow. It’s saved me from anger towards everyone around me. It has saved me from literally going crazy from pain.
He is worth it. He is what He promised. Run to Him for dear life and He will hold you in His arms through all of the difficulties.
But…if we are being honest? This is what my husband usually gets to come home to.
8 responses to “My Life with EDS?”
My dear friend, I had no idea, but thank you for sharing this with us. With love and prayers, Annie.
Thank you for sharing so truthfully. It helps to know what you go through with so much grace. It helps me to know how to pray for you. Love and blessings, Nancy
Thank you! That means the world to me that you are praying for me!!! ❤️
Thanks much for sharing. I have dystonia. I had it for 13 years before a diagnoses, and like you I was told to exercise. It turns out that all that exercise and cardio is terribly bad for dystonia, but like you mentioned, without a name, there was no way to know. I’m mostly bedridden, but I do get out a bit. My hubby has made a bed in our vehicle for me. I also have dystonic seizures so my hubby doesn’t leave me home alone for long if he can help it. So appreciate you sharing your story. I too have had great things happen as a result of my dystonia. For one, it’s how I met my hubby! 😊 Blessings to you!
Oh my stars! Isn’t it wonderful to have husbands that watch out for us? That in itself is the most amazing thing. I can’t imagine being with a man that was insensitive to what I’m going through. Yet, so many women do!!
I really appreciate you sharing! I will pray that God continues to give you peace and wisdom as you are dealing with this all. I’m so sorry for your pain! So thankful that you are looking at the blessings instead of the negatives! God will be brought so much glory!!! 😘
I’m so sorry you have to deal with this but I admire your strength of faith and your transparency in sharing this with us. It really humbles me and helps me put my aches and pains in perspective. I’m thankful your husband and sons are so supportive.I pray you will continue to feel God’s peace and comfort.
[…] EDS (Ehlers-Danlos Syndrome) is known to have heart problems attached to it, so I’m not too surprised! […]