So I have MdDS. We know this. I've officially had this syndrome for four years. It's something that I have had to learn how to cope. I have had to relearn how to do basic tasks. I've had to figure out shortcuts for somethings and I've had to learn how to take the long route with other tasks. But that is what I've had to do with dealing with this syndrome.
But what about my family? What has my husband had to figure out? What about my kids? What do they give up? What don't they understand or can't figure out? How have they had to cope? What has changed for them?
I am one of the lucky few who has an amazing support group at home with my friends and family. They researched along with me. They have called me on my bad days. Bought me small gifts to keep me busy when I was going crazy being stuck at home. My husband took me to most of my appointments when we were struggling with what was wrong. Late nights or early mornings in the ER. He's been there to literally pick me up off the floor. My friends talk to me through messenger or video chats when I'm feeling lonely. They bring me up when I'm feeling down. My kids have recognized when I'm struggling with standing still or walking on tile floors and are quick to grab my hand to keep me stable. They like to cuddle with me when I'm stuck in bed and understand when mommy can't watch a movie with them, but I'll listen to it. But again I'm one of the lucky few.
One of the biggest issues that I see come up in our support groups is the lack of support outside of those groups. It makes me sad, but it makes me wonder why. Why isn't there an understanding when one of your loved ones is struggling. There is a need here for educating those around us. Unfortunately there isn't a support group for those who live with someone with MdDS. Maybe this is something that needs to happen. So many people have messaged me or talked via phone with me about how their family "just doesn't get it" or "they want their mom/dad back to normal" or "they don't believe that I'm struggling". That one hurts most I think.
We are already dealing with medical professionals telling us "it's all in your head." The last place we need to hear it is at home. Home is the place where we should be able to find that undying support and love, but unfortunately that doesn't happen. There is ridicule, hurtful comments, fighting and frustration in a place where there is already so much anxiety and stress.
So the question comes out....How do we get them to understand especially when we don't understand this all ourselves? For some, you have said vows that include "in sickness & in health" and this is sickness. This is really bad sickness, because there are no right answers. Can we truly expect someone to understand something that there are no definite answers to? So then you work on what we do know. We know we rock. We know we deal with the inner ear issues. We deal with the nausea. We deal with anxiety and depression.
The best start is communication. Not just from us MdDSers but those around us. Listen to what they have to say. Stop fighting every word that is said, but listen carefully. What is frustrating them? What is hurting them? What are they scared of? Many of us have seen counselors in the past and this may be a time when someone else needs to be brought in to figure out a good solution for all parties involved.
For some of us, this is a syndrome that we will have for a long time. There is no getting around it. No magic pill that will take it all away. No magic treatment that will have it disappear forever. Not yet at least. So in the meantime, we need to find solutions to have those around us have a better understanding. To give the support to them as well. To help them cope.
The other side of it is us pushing through what I call "My pity party, population 1." Being positive within myself helps with my family willing to learn and understand what I'm dealing with. I'm not saying to pretend or "fake" feeling good. I'm talking about knowing what you can and cannot change within yourself to better your life. Trying to have a positive outlook on life that things will get better helps. And I have communicated that with my husband, my kids, my family & friends. On those lower symptoms days that I have, I push myself to do as much as I can, so that on my really bad symptoms days I don't feel so bad.
And those pesky bad days? Even those days I set small goals. Even if it is moving clothes from a washer to a dryer, picking up one room in the house, cooking a small meal. And I get excited about accomplishing those small goals as much as I celebrate the big goals. Every step counts. Again, communicating those goals to those around me, so when I feel like giving up, those people push me not to.
This syndrome can destroy. It can destroy those MdDSers. It can destroy families. It can destroy relationships. We need to figure out a way to not let that happen. We need to figure out a way to get a better understanding of our disorder so those around us can understand and help. Even if we get a random high-five for being able to go from sitting to standing without falling. Even if it recognizing we are trouble due to a type of lighting in a room and removing us from that area. Even if it is a thank you for cooking dinner, even if that dinner came from the freezer. Or even if it that person not pointing out you being stuck in bed all day because the symptoms are so extreme. Support comes in many different ways. And us MdDSers need it.
