Wow, long time since I posted. Its been a hectic couple of weeks.
My girl got married on Saturday which meant lots of prep work and juggling of the masses to get ready for a car trip. The weekend came together even with a few hitches, but she said 'I do' and he said 'I do' and so I would say it was all a success :-)
I'm not sure if other MdDS'ers feel this way, but here's me...So I feel fine in the car, but as soon as I step out its insanity. I feel like the ground is in the air. I feel light headed and exhausted. We drove up and the drive was fine, but we stopped for lunch and I felt queezy the whole time. Then when we got to DC (which is a 3 1/2 hour drive) I ended up falling asleep for a few hours. The drive back I slept most of the way home and then ended up sleeping all night and into most of Monday. I used to hate being a passenger in a car for long trips but it wasn't so bad. Its the aftermath that is hard.
I have been planning this trip for awhile. I've been working myself up to it so that I could be prepared as possible. I didn't plan the tummy bug that me, my son & daughter all caught, which didn't help the symptoms much...actually it made them much worse and made me exhausted. But its my best friend's wedding. I'm not missing this. My husband and I prepared for me not feeling 100% after we got back. We knew it would take me a few days to recover completely. I've been in an emotional upheaval for the last few days. Thanks to my husband and our pillow talk last night, he made me realize that we planned for this. We knew I wouldn't feel my best after the trip, we didn't take into account the tummy bug which has probably made things worse than usual. And as he said, yes I don't feel right, but it will get better, it always does. He also pointed out that even though I'm not 100%, I've still gotten Seth off to school all week and picked him up, I was able to get him to his appointment to get his cast off, and I've been able to take care of my daughter and niece all on my own. We have back up plans for a reason and this is why. So I've played on the floor and couch this week with my girls, at least they are getting attention. We've watched a ton a movies and had lots of cuddle time, and thats okay. Everyone's fed, everyone's had their naps who needed naps, everyone is clean. Job success.
So on to other things...
I started this blog as an outlet for me coping with MdDS. I try to stay as positive as I can, but let's face it, this disorder is frustrating, not only to us but to doctors, family, friends. Its frustrating to each person for different reasons. Its hard to stay positive all the time. I've written about how I try to bring positive aspects in everyday, but its difficult. We are all human, and every human has a bad day. It doesn't mean you are a bad person, it just means that you are having a tough day. For me, my tough days are hard because I'm an emotional person. I wear my heart on my sleeve. I care too hard and too deep. My feelings get hurt too easily. I have tried not letting things get to me, but on a bad day, things just hurt me worse than usual.
Its even worse when you are judged for your bad days. For people to just assume things about you just because you have a bad day. A bad day can consist of many things, lately by bad days I mean bad MdDS days. Bad MdDS days consist of higher level symptoms. But its how you cope with these bad days that makes you the person you are. You feel your inner strength pull through eventually. For me my inner strength comes a lot from my husband (who I've written a lot about) who pushes my inner super woman out of her cave.
So to give you some perspective into my world. MdDS has a scale that you follow your symptoms. The scale runs from 0-10 check it here This scale is important for all those involved. It helps you to communicate how you are feeling on daily even weekly basis. For me a bad hits around 5-6, but I can usually push through. Its when I get to 7 and above that its hard, for me at least. I typically experience days at a 5 or below. I never get to a 0.
But even sitting at a 5-6, I have come to realize that I can push through and be mom, wife, friend that I need to be. It helps to have my support system with family and friends, but it also helps with having the support groups through MdDS. Those who are going through similar issues that I am. We all take each day we are given and move the best way we can even if it is on a tsunami wave.
I know that for me, I push through those 5-6 days, but sometimes you just get tired of fighting. Some days you just feel like you need to quit and give up, but you can't. You take on the burden of the disorder and keep moving forward. You hope that it doesn't crush you. You pray that those around will eventually understand and give you the space you need or the comforting shoulder to lean.
So today, I'm standing up tall. I'm dusting off the bad vibes and moving forward. I'm going to take it easy today and not stress about it. I'm going to take the time I need to get better and get past this week. I'm going to go play with my daughter and niece and laugh because that's what I need right now.
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