RELATIONSHIPS AND COMMUNICATION

  How do relationships stay strong when someone in the house has an illness like MCTD? I have asked myself this question a million times and I am so grateful that my husband and I have a very opened, honest and loving relationship. There are days when you just don’t feel like yourself and how you convey that information to someone else is very difficult. Once you understand how you really feel it becomes easier to relay the information, but there are days when I cannot find the words about how I feel and I cannot expect my husband to just read my mind and understand. I take medications that affect my mood and my ability to communicate and when I feel my mind is foggy or I’m irritable and cranky those are the days I have to really work on my communication skills. My husband is my biggest supporter and my rock and the love of my life. I am not without faults and I can get snippy and cranky just like the next person and on days when I don’t feel well it is even worse. The hardest part for a spouse is watching the person they love in pain and not being able to do anything about it. This is the time to let them know that having them there and being with you is so important and they are needed and they are helping.

 The week before our wedding I was newly diagnosed and looked at my husband and just said you didn’t sign up for this and if you don’t want to go forward with the wedding I completely understand. I was serious about my concern for him and he assured me we were in this together. The truth is I carry the disease but we live this disease together every day. He knows when I’m feeling strong and when I’m not. My goal every day I wake up is just be the healthiest I can be for that day and the strongest I can be that day. Some days I’m stronger and healthier than others but I embrace them all. I use to cry during my flare-ups mostly out of frustration but also pain. Crying is not the best route to take and although I’m a huge fan of a good cry during a flare-up in frustration is not the best time. If you feel yourself losing it during a flare-up and the pain is unbearable and you are wondering how not to cry, may I suggest breathing.

It sounds so easy to just breathe but that is actually very difficult when you body is shutting down and turning on itself. You can send yourself into panic and even more pain, but breathing helps calm the system and eventually calm the flare-up. I learned this during a Bikram class when I was actually in flare-up and the instructor said if it hurts send a little breath to that area and breathe through it. She wasn’t talking to me specifically but I use that technique now. Now when I flare my husband doesn’t have to worry about calming me down because I can do it on my own and he can be the support system I need by being close and being an ear to talk to. He is such an amazing man and hopefully you have a support system of your own to get you through your tough flare-ups.

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