Hello my lovelies!
I share a lot of my life with my readers. Good, bad, ugly, I try to give myself and my journey through Chiari and Ehlers-Danlos with you. My heart and soul goes into all the work I do surrounding lifewithchiari.com, hopesoup.me, the foundation, counseling those of you that need it, advocating for patient rights and educating the general public about what we go though on a daily basis.
In spite of all of this, I struggle everyday. It isn’t the pain, limitations, side effects, or complications of the conditions, but the immense loneliness and profound sadness of the situation these conditions have caused. There are times I get tired of having to constantly explain myself, of having to make excuses of why I can’t do things, having friends and family abandon me because the don’t understand that I WILL NEVER GET BETTER. THERE IS NO CURE. IT WILL ONLY CONTINUE TO GET WORSE.
From talking to many of you, I know I am not the only one working through these types of feelings. Chiari and EDS suck, but they have managed to give me something very precious… all of you. A wonderful, beautiful community of people, that without these conditions I would have never gotten the chance to know. If no on has told you lately, YOU MATTER!
I am also working though some personal issues right now, and have not been able to write as much as I would like, but you can always reach out to me anytime through the blog, firstname.lastname@example.org, instagram, facebook, and twitter.
Hello my lovelies!
Where does the time go! When you have a chronic illness or condition ( or two, or three…) there never seems to be enough time for the spoons you have available. Keeping up with the blog, counseling people, advocating, living, (LOL) it gets exhausting, but I have missed you all! Today’s post is focused on Ehlers-Danlos Awareness. May has been designated as Ehlers-Danlos Awareness month, so all month long, I am going to focus on EDS, and try to bring you some extra resources and information to hopefully help any one who is newly diagnosed, or who may just have questions. I am pretty new to having EDS myself, so we will learn together!
According to Ehlers-danlos.com EDS is defined as “A group of connective tissue disorders that can be inherited and are varied both in how affect the body and in their genetic causes. They are generally characterized by joint hyper-mobility (joints that stretch further than normal), skin hyper-extensibility (skin that can be stretched further than normal), and tissue fragility.” This does not mean you have to have these two specific issues to have EDS. That is a myth, and one that is sorely outdated.
There is a lot of great information on their site, I highly recommend reading through it when you have the time. That being said, like most under diagnosed or rare conditions, there can be multiple different types, with different symptoms manifesting in different ways across the population. As you can imagine, this can lead to a great deal of frustration. Often times, family and friends don’t understand what we are going through, doctors can’t tell us what is going on, our bodies are doing things to us we can’t understand, and all we want are some answers!
As of 2017, there are thirteen sub types of ED, each with their own clinical criteria. This alone can make getting the proper diagnosis a nightmare. These are the current sub types.
Click through the links to be taken to each sub type of EDS to learn more about it. I have Classical, or in the UK, Hyper-Mobile EDS. I suffer from frequent, random dislocations, easy bruising, long healing times, easy scaring, velvety skin, and I look much younger than my actual age. My body hurts all the time. With Classical/Hyper-Moblie EDS, your surrounding muscles have to work harder to support your weak joints, which is exhausting. It can be very hard for someone to understand why you are so tired all the time, when you don’t really do anything!
Together, we can raise awareness and shine a light on this debilitating condition. Never forget my dear zebras, you are not alone!!