Being the spouse or loved one to someone with EDS and Chronic Pain is not easy. Please remember that we love you, and can never really know what you are going through, but will try to be supportive in any way we can.
#Zebras #warriors #borrowedspoons #ChronicPain #EhlersDanlosSyndrome #HypermobileEhlers-DanlosSyndrome(hEDS) #DegenerativeDiscDisease #SpouseDoesntGetIt #SpouseSupport
People assume that having a disable partner and or spouse means their sex life is nonexistent or that we don't go out like normal couples, that is totally not the case. Even though I am the one living with the disease doesn't mean my life just stops. My husband and I have found other ways to continue to live our best lives and still be madly in love with each other. I just reached my goal to get my new custom wheelchair and I am so excited because I feel with my new wheels I won't feel so limited. I know that I can count on my partner to be there for me on all levels. Even if he can't at the moment, I can say my husband will find a solution to help me. That to me is a real partnership! Whether you are married or just dating long term there has to be great communication between the two of you. Listening to your partner when she and or he is expressing their feelings and or pain at the moment can truly help you understand what is happening at the moment. Having a calm partner helps you find a sense of comfort in you. Anxiety plays a big part when I am in excruciating pain. I am grateful to have a partner that knows what to do for me when I feeling like I am losing it. It bothers me that able bodied people just assume so much about people who are differently abled. I am a person that don't mind being asked questions because I want to educate others. I want other couples to know that life doesn't have to end because you are disabled or chronically ill. Just like I had to find new ways to continue living a normal life with my children is the same energy and efficiency when it comes to my private life with my husband. It takes time and a lot of communication to have a complete understanding of what is needed in the relationship. Patience is also key! Don't rush the process. Just go with the flow and take one day at a time. Keep fighting!!
#EhlersDanlosSyndrome #LifeofanEDSerwomanofcolor #SpouseSupport #partnerships #Caregiving #zebrastrong #WheelchairUser #keepfighting
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I’m grateful for slow moving weekdays. An open book, that matches my bedspread. A pile of pillows and the little birdies in the cedar outside.
“How are you doing”
It’s relentless. And I haven’t decided how to answer. The answer seems to be yes. Yes to like anything. Answering makes me emotional. I’m not processing.
It’s not about how much can I take. I can take it all. But am I even happy? It’s if it will ever get better. It’s not just happiness, it’s care. Will he protect your love? Treasure it dearly? Carry it proudly? Is there room for me in this relationship?
I’m losing myself. This isn’t me. I read in a book yesterday, “love so often the reason to stay, not enough the reason to leave.”
I’m lonely, why do I push so hard for it to work. He says it all the time; maybe he’s better off alone. How has six years gone by?
I don’t think we’ve grown closer. Not at all.
I need words to say when he is suicidal. He does not find comfort in being held or touched. My vocabulary fails me when I try to convince him of his worth and that he is loved etc. I feel like a failure because I don’t know how to help . #SuicidePrevention #helpneeded #spouse #SpouseSupport
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