As I posted briefly last night, we had a busy weekend. What I didn't mention was that we came back to some awesome head colds for Baby C and me. Not fun at all. My poor little man has been grumpy and fussy and just absolutely exhausted all day, but he just wants to play and doesn't understand what's going on! I feel so bad for the little guy. This is the second time he's ever been actually sick, so it's definitely a little bit foreign for all of us. The last time he was sick was also a cold, but he was still just a floppy little newborn who couldn't move or "talk" back. Haha. Anyway... our weekend was busy, but fun! We went to a family member's Wedding out of town and it was absolutely beautiful! It was an evening Wedding, and even though it started at bedtime, C did a really good job, but didn't quite make it to the actual party. He made it through dinner, but that put us back at our hotel at about 8:30-9:00, so I was pretty proud that he never really melted down. He didn't sleep that great that night, though. More because it was a strange place than anything else, but he just wanted to snuggle his Daddy. He really didn't want anything to do with me all night! I mean, sure, I was "allowed" to nurse him, but that was it, Momma! After that, if I tried to cuddle him to sleep, he just pushed my face away and screamed for "Daddaaaa!!!!". MH was a trooper and rolled with it. Despite C's uncanny ability to take up a queen sized bed almost completely by himself, MH did hang in there and it resulted in a sleeping C. (That's right... a queen bed. On vacation or if staying in a hotel, MH and I enjoy our own queen beds. Call us weird, but we're just not snugglers. Haha.)
Sunday, we awoke for breakfast with Mia and Poppo (MH's parents) and then headed to the Zoo, which was a lot of fun! It was a really big Zoo, so C was definitely not awake for all of it, but MH and I enjoyed it, even though we did end up needing to skip out of our group and rush through to the end so we could get on the road. On our way home, we stopped off and visited my parents briefly and C got to see his Auntie D and his 3 cousins. It was nice to see a lot of family this weekend, but there is simply no place like home!
Alright, well, last week I said that I would be posting about the caregiver's side of EDS. It's something that I think people forget about a lot in any situation involving an illness. Sure, it's hard on the sick person, but what about the person who is caring for them? What about their husband/wife/significant other - or in some cases, parent? The disease, condition or illness can be just as hard as the caregiver and any family as it is on the person who is struggling. Especially because they can't possibly understand exactly how we feel, and we can't possibly communicate or share (and would never want to share) exactly how it feels. Can you imagine how difficult this makes it to care for someone?
In our situation, we have two monsters. Sometimes they go together, and others, they attack individually. I have POTS and EDS.
MH is someone who really does try to understand. But I don't always make it easy on him. I am a dramatic person. Probably anyone who knows me would tell you this. So, sometimes when I am in serious pain, I joke or say something dramatic to make light of the situation. Even when I simply stub my toe (which usually results in a dislocated toe), I respond dramatically... I mean, I definitely go overboard. It's a defense mechanism to make a frustrating or difficult situation feel a little bit lighter. But this makes it hard on MH, who already worries about me constantly. I never truly realized how much. But especially in this last year, he has been worried about me and constantly thought about my EDS and my POTS.
Before finding out that I was pregnant, I was officially diagnosed with POTS, but still awaiting my official, confirmed diagnosis for EDS. Once finding out I was pregnant, a whole can of worms opened: this was going to be a high risk and possibly very complicated and painful pregnancy for me. MH immediately jumped to "what if it comes down to a choice between Ashley and the baby?". And I can't blame him. So, we had this conversation... several times. We never agreed. We both always would have chosen opposite things. He would have chosen to save me. I said save the baby. There was also the possibility of preterm labor. This meant that I would possibly have to end up on bed rest for a portion of my pregnancy, forcing me our of work. To me, this was just frustrating; to MH it was a matter of figuring out how to compensate for my wages so that he could provide for his family, no matter what.
Over the course of dealing with the increasing symptoms and eventual diagnoses of my conditions, MH and I have argued. We have argued on and off about his ability to understand and empathize. I have asked far too much of him on occasion. He sincerely can not understand how I feel when I tell him I'm feeling a certain way. This is so frustrating for him! The last argument we got in was about my tendency to be dramatic. He doesn't always know if I'm being serious or if I'm just trying to make light of a situation. So, most recently, when I dislocated my shoulder and tried joking around and playing tough, he thought I was fine and just needed to relax and get over it. He had no idea how badly damaged my shoulder really was or how much pain I truly was in. Finding out all of these answers, he felt so terribly for telling me to wait to see the doctor or go to the hospital for help! He felt so guilty! He still does. But this isn't his fault. I told him that I would have waited anyway. I can handle it. But the problem is that he doesn't think I should have to. Worst of all, he wishes he could fix things for me, and knowing that he can't is frustrating beyond a level that I could ever possibly understand. Because even when I feel "fine", MH doesn't know when I might suddenly not be. And when I'm not, there's that possibility that I won't be able to care for things around the house. And in those cases, how could I possibly care for myself or his son? I always truck through, because I do like to believe that I am strong. But again, MH would rather fix it all for me. He constantly has to worry about how I'm going to be feeling on any given day. He recently told me (something which I never realized) that he can tell when I'm feeling better, because of how I clean or accomplish tasks: did I take shortcuts or did I pay attention to details? I never even realized this about myself. But it's true... when I am having a pain day or a POTSy day, I definitely don't do the details, such as cleaning things off of the dining room table, or dusting all of the living room furniture and cleaning the glass. I take short cuts, so that it's clean enough.
MH also constantly thinks about things like surgery and doctor visits... how will we pay for whatever insurance doesn't cover? How will I be able to take care of C and how will he be able to take care of both of us? He thinks about how I might get better or worse over time.
I am a constant source of stress and worry for him... and now he has a son to consider as well. He worked SO hard so that he could have a job that allows me to stay home with baby C - which is something I have always wanted - but also so that I can not have to work. Working before pregnancy was challenging sometimes. Working during pregnancy was sometimes excruciating. Now? Working a regular job really isn't as easy as it sounds. Even part-time. A lot of jobs require that you be able to stand for a certain amount of time, and/or be able to lift a certain amount of weight. I find it hard to stand longer than 5 minutes without needing to "un-straighten/un-stuck" my spine, or feeling like I might collapse; I can lift heavy items, sure, but probably not without slipping a joint or dislocating something. I know that MH sometimes feels like he needs to baby sit me in order to make sure that I don't over-do it. I can only imagine how stressful this might be on him, especially when he can't just be home to follow up. I try my best to do what I can to help reduce his stress, but the fact of the matter is that just like he can't understand my pain or how I feel, I can't possibly understand his stress or how he feels.
Still... MH takes care of me however he can. He works hard all the time. It's what makes me want to work hard at home. But sometimes, I simply can't; others, I do anyway. And he pays for it. Sometimes I wish that I could take this burden away from him and just be... better. But I can't. And he doesn't seem to mind. But I know that it's still a source of constant stress and, at times, sleepless nights. All I can do is be thankful to my "caregiver". He's also my best friend and true love and I'm so lucky to have him. I know he didn't sign up for all of this. I received all of my diagnoses after we had been together for quite a while already. He had no idea what he was getting into, and in all fairness, I never could have even guessed to warn him. I never knew all of this was coming. But my version of "normal" turned out not to be so "normal" after all.
Alright, well that's all for today. I hope that's not all too jumbled. I'm just absolutely worn from this yuck that I've got and I'm actually about to put myself in bed. I hope you all have a lovely evening and a beautiful week! But I want to know what you did for the long weekend? How did you celebrate Columbus Day? Did you and your kiddos have Monday off? Share the fun!
Zebra love and hugs,