I decided to chronicle my experience of going from misdiagnosis to living with Ehlers-Danlos Type III, and how it has affected most of my body. I am fortunate that getting a diagnosed led to my 15 year old son being diagnosed early, before he sustained any organic damage.

My hope is that my blog will allow others realize that they are not alone, and it's not "all in their head", it's very real and debilitating! I also hope that my Counseling background will inspire others not to neglect their mental health as EDS can push our limits; seek support!

Wednesday, July 11, 2012

On voicing your needs...

I want to start by saying I have audience in Russia and Germany! Wow, how exciting! I know I have work to do on this blog to make it more attractive, even more informative; I promise to do it! In fact, I will be reading and learning about just how to do that while I'm laid up after surgery. I'll even try to post more often even if I have nothing to say...joking :)

Well, 1 week to go for surgery, and it's going to be a busy one! Which is exactly the wrong thing to do. In fact, I had a dream two nights ago in which I went to an emergency room and while everyone was hysterical not knowing what to do, I said "how 'bout I just lay down in the bed to start with?" Hhhmmm, is my subconscious sending me a message or what?! I will be laid up for at least two weeks post-surgery (with EDS probably more) so I'll get plenty of rest then, for now I just need to get things done.

I have decided to try EFT and hypnotherapy to try to manage pain. I figure I have nothing to loose and everything to gain. I learned a little bit about EFT during my Master's in Counseling and, although controversial, it has its place in therapy and I'm open to trying it. Frankly, I was always curious about it too. I have "hashed and rehashed" all the traumas in my past and its time to move on. EFT allows individuals to do that without having to re-tell their story (*Note: I have processed my traumas, I am not by-passing or attempting to deny them). Since I cannot take any narcotics or NSAID's, hypnotherapy might come in useful for pain management. The "therapist" and I had a conversation and she showed great concern in trying to getting a couple of hypno treatments in before my surgery so the pain would be more manageable since I may not be given pain medication, or only a few days worth. I think the conversation we had was important and led me to believe we could work together so I made an appointment with her. She explained her methods and techniques, how she worked, but more importantly her concern, openness and flexibility in client care. I will update on whether this worked! (*Note: I recommend this conversation to anyone seeking any type of therapy).

I started a little experiment in my home. In the last few days I have tried "complaining" about my pain less often. Bear with me as this may not be as obvious you think. I did this so not to burden my family as much, and well, because I know it can be annoying. When I started the experiment I didn't mention it to anyone in my house to see if: a) they noticed, b) if they noticed a difference in me c) I  noticed a difference in the them. Not one said a word. They did not assume that I was feeling better and they did not seem any more cheerful either. I had been doing this for at least two weeks at this point so some results were likely to be observable. This stumped me. I finally asked my husband directly if he'd noticed a difference and how it felt for him, bear in mind, he's an Engineer and I'm a Therapist so we process things differently, his responses were "I noticed a little bit", "I appreciate it". This was not sufficient for me. The one difference I noticed was in me: I felt even more alone! I expected more from my family because it took GREAT effort on my part to keep my pain hidden away, to keep my pain silent. Speaking about my pain allowed me to share my burden. It might seem selfish, it might be annoying, but I didn't have to carry it alone. So, what about me? Speaking about my pain at the end of the day, was the equivalent of saying "hi honey, how was your day?" or asking my kids "how was your day at school?" It was an unburdening, a letting go that was heard and acknowledge by someone. I had been alone already that day attempting to carry out the few activities that I can do: cook and fold clothes on a good day. I want somebody to ask me how my day was! I want somebody to say I'm sorry you hurt! Yes, everyday! I want somebody to be interested in my painful day as much as I'm interested in their meetings and in their friends, and whether they liked dinner...and know where their clothes are...and what they want for dinner tomorrow...!

I'm not mad at my family, after all, it was just an experiment. But, not a failed experiment. I know I have to make my needs known. I have to use my words and give voice to what my needs are and how I would like them fulfilled. They are not mind readers and they can't feel what I feel. Even my son EDS doesn't feel the same level of pain I do; he's much more functional and his pain is well controlled. My family is usually very supportive. I relinquished power for a short period of time; it's time to take back and use my voice again. That's not selfish of me.

In faith, trusting that all is well...

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