Can you touch your palms to the floor when you bend at the waist? I can. Are you weirdly double-jointed? Me, too. Unexplained Black and Blue all over? No? How about random bone breaks and dislocations? Well, that’s where we differ. I’ll explain.
When Jackson was maybe 7 months old, I went to see my PCP about strange bruising on my shins. She chalked it up to having a baby crawl all over me, and said to eat spinach. The bruising never went away. After the twins were born, the bruising got worse. Then two bones in my foot just broke one February night when I was cleaning up bath toys. They just went pop and I wound up in a walking boot cast for 3 months. My oldest was 3 and the twins were 8 months. The podiatrist said it was an idiopathic break, and sent me away.
I saw a cardiologist for unexplained chest pain and heaviness a few months later. No diagnosis. I had Rheumatologist appointment to rule out RA and Lupus after that. No diagnosis. Then, I went to a Hematologist/Oncologist just to cover my bases. He had an idea.
“Have you ever heard of Marfan’s Syndrome? I think you have something like that,” he said. In fact, I had heard of it. My husband and I had seen the end of a documentary on Marfan’s years earlier and it became a joke (in poor taste) that I had Marfan’s because my arms are so long. Turns out I sort of do.
I got an additional diagnosis recently. I still have Multiple Sclerosis, but I also have Ehlers-Danlos Syndrome (EDS)-hypermobility-, which is essentially a connective tissue disorder caused by faulty collagen. The symptoms are extreme fatigue, skin elasticity, hyper mobile joints, joint pain, occasional chest pain, extreme fatigue, disproportionately long limbs, dark under eye circles, a tendency to fracture bones and dislocate, and did I mention extreme fatigue?
Luckily Hypermobility type EDS is not fatal. There is another Type of Ehler’s Danlos that causes serious vascular issues, and I feel very blessed that my diagnosis is not that. Marfan Syndrome also has serious vascular complications, so I’m grateful it’s not that either.
But it’s still something serious, and there is also no treatment. The geneticist I saw gave me list of things to avoid which included yoga, stretching, and lifting anything over 4 pounds. Rigghhhttt. The more I looked at the list of
activities contraindicated for the new EDS diagnosis I saw how they directly conflicted with the things I do to manage my MS diagnosis. And I felt defeated.
The logical part of me wanted to say, “Well if this is genetic, then I’ve had it forever, and it really isn’t a big deal.” The panic part of me cried “You can never grocery shop again or you will destroy your joints!” And another part said, “Why is this happening to me? I already have MS and this isn’t fair.” I tucked those thoughts away until I was ready to process them, which I’m sort of doing right now. All of these thoughts deserve some attention. This is a complex thing I’m going through. And even if I’ve always had it, my forever friend told me the other day, “Sometimes it’s almost like once someone says it out loud you give permission to yourself to feel all the pain and the give recognition to the symptoms you’ve been experiencing all along.”
I wrote a post about my MS a few months ago called Your tired is not my tired. I still believe that no one knows how anyone else experiences pain, exhaustion, sadness, and even joy. That’s a very personal thing. I can say again, with yet another diagnosis where exhaustion tops that list of symptoms, that your tired is definitely not my tired.
I’m still going to dance at my grandkids’ weddings. I’m still going to stay positive. But more than ever I’m going to give myself a break. I’m making several commitments, only these are to myself. I promise that:
- I will not take leadership roles in clubs/community/parent-school groups.
- I will take the closest parking spots that I always try to leave for other people.
- I will forgive myself for watching my kids play outside from the comfort of an adirondak chair (or even inside on my couch!), being grateful for our open site lines.
- I will not feel guilty for hiring a babysitter to bring my kids to the park so I can just sit in my room.
- I will watch for symptoms of EDS in my kids like their Pediatrician told me, but I won’t be anxious about it.
- I will not worry about spending money on travel and activities and will take advantage of my current health.
- I will acknowledge that my situation is different and that doesn’t mean worse. It means I am forced to be even more mindful than if I had MS alone, or no diagnosis at all. And being mindful is beautiful.
An EDS website wisely explained, “Learning to deal with this makes our souls as strong as our joints are weak.” I feel like my soul is training to compete for the championship belt. And, I’m ready.