Share. Connect. Love.

Staying Me

In February of 2019 I joined the over 1 million people in the US to be diagnosed with Multiple Sclerosis. This is my story from diagnosis to now, learning to live this un[...] read more

Latest journal entry

Posted 2019-10-21T18:05:36Z

Learning to Trust After a Flare

My first flare happened in May of 2019. Two pretty stressful things happened regarding my kids within two days that week. I then woke up on the following Monday morning, not feel great, but not terrible, I couldn’t quite figure it out what I was feeling. I knew I was TIRED, but also just felt off. It was a preschool day for my oldest, so I had a later start but figured I be feeling better after I had a more relaxing morning. We got ready to go, Coop got ready for school, I got Caiden all set along with myself. However, it took all of me to get everyone out the door. At this point I think I called into work saying I was going to take the morning, but I would try to be in for the afternoon. I took the kids to their places and went home, I remember thinking to myself, “stay awake, wake up, wake up” while driving home. Once home I napped till my alarm when off to go pick up Cooper and take him to daycare. Here’s the thing, I have NEVER been a napper in my whole adult life. I do like my 8 hours at night to function, but I can only nap if I’m sick generally. The fact that I passed out that easily had me worried, but I don’t like to not feel in control. It’s hard for me to admit and ask for help, so I got up.

 

I was groggy waking up, but got up, got in the car and went to get Cooper. It was still a struggle to stay awake and looking back, I am not sure if I should have been driving, that is how tired I was. I got him to daycare and went back home and slept more, after I called out to work again. I could barely keep my eyes open; it was like I was drugged. The whole day is a hazy, foggy memory. About 6ish Jake came home with the kids, who were SO EXCITED to see me and I couldn’t hardly get out of bed. I did ask my boss to drop my work computer by, so I could get some stuff done the next day (hopefully). She was nice enough to drop it by and just getting up, walking down the stairs to answer the door and walking back up was exhausting. I had to stop at the top of the stairs and lean on our kitchen island to catch my breath and keep me from falling. Needless to say, I went back to bed. The kids came in and laid with me watching a show, I remember having an arm around each of them laying there with my eyes closed feeling like the worst mom ever. Thinking back makes me tear up. It was a horrible feeling to not be able to function enough to just sit and watch a show with your kids. It was a different feeling then just being sick, because you know this can happen again, at any point, without warning. It’s not a bug I will get over.

 

The next day was better but I was still VERY tired. I stayed home and was able to get some work done between naps and finally call my doctor. I had wanted to call the day before, but it was overwhelming to even think about talking to anyone.  They said it sounded like a flare and not an attack since I was already feeling better. If it was an attack it would not get better and last at least 3 days (sounds freaking fantastic right). They said to listen to my body and rest, so I did. I felt good enough to go to the couch that night and hang out with my family, plus got about 4 hours of work done between naps. 

 

The next day was even better and I made it through a full day of work, barley and each day got better after that till I was back to my normal level of tired. There was however a lasting effect, I didn’t trust my body. I was so scared to overdo it, to over work my body that I pretty much shut down on the physical activities. I wanted to make sure I could work and I could hang out with my family. I started back to the gym a little bit here and there, but took at least a month off, I think. I went back because I had my first ever backpacking trip for my best friend’s birthday. She/we had been planning this for almost a year and I was determined, plus I bought all the crap, so I needed to use it! I figured I should workout at least a little before we left. So, I went, but only a few times before the trip in early July. I was trying to go 3 times a week prior to the flare up. It was just so hard to trust that I could still do my normal stuff, having your body betray you like that does something to you. Makes you question every feeling, every tingle, or itch, every time you are more tired than you think you should be, even more then I was in the months prior (if it’s possible). It took me a long time to “recover” from that, but if I am being honest, I still struggle with it.

 

That brings me to the backpacking trip! There were 5 of us, 4 high school girlfriends and one brave/crazy guy. He was the only one who had done anything like this prior, so he was in for an extra special treat with our crew. When we left, I tired to look confident, but I was so scared my body wouldn’t do it, that I would hold everyone back, and/or I would embarrass myself. Well turns out that all pretty much happened! The hike to the first camp was easy and we got to set up and got to play for the afternoon. This included bear hangs, collecting wood to burn, and playing at the river. Towards the end of the night we made dinner and everything was all fine and dandy…. until I started to feel sick. With no idea what was going on, I went to lay down about 6ish. I woke up about 8 and felt so sick I couldn’t move. No one could talk about food or even touch me without making it worse. I ended up getting sick in camp, which was not only semi-embarrassing, I also didn’t make it out of camp so I was worried I would bring the bears to us! I ended up getting sick a few more times and had to change clothing (not awesome with limited clothing) and crawl back into the tent and hope it was over. Thank goodness Meghan was there to help me, I know the other girls were around and helping, but I remember Meghan standing over me as I am throwing up and crying, helping me and telling me it’s ok the bears won’t get us, she will take care of it. My hero!

 

The next morning, I felt better, but so tired and weak. I had no idea why I got sick (later found out my mom got sick as well and we think it was food poising). We packed up camp and I was still determined to do this, but I the worry was much greater and taking over. As we started walking about .5 miles into it, I was done, my body was screaming, I was in tears. I stopped to rest and said I should go back through tears I was trying to hold back. My awesome friends nicely said no (of course I could have), they were support supportive of taking the time I needed. We all went on, I think we hiked like 7 or 8 hours that day and about 4/5 of those hours were uphill. I felt like I was holding people back, Jeremy already took a lot of weight off my pack, which was a very humbling experience, to help me out. Needless to say, we all made it. I don’t think any more tears were shed, but A LOT of swear words were left on that mountain. We made it to our second camp pretty late, but relaxed and had lots of laughs. We laughed a lot that weekend. I was proud my body did it without having a flare after and even more proud when I figured out I did it through food poising and eating very little. There are MANY more stories from that weekend that could be a whole post on its own, but it was hard, amazing, beautiful, and bonded us. I am very lucky I have such loving friends who also like to swear at trails. 

 

The moral of this story is that after your body betrays you, there is more to overcome then just physically getting back to your normal. There is a mental thing that happens where you don’t trust. To go from thinking you know your body and what it can handle to this unknown is a hard mind f*#& to get used too. I still struggle with it on an almost daily bases. Every time I am more tired than I should be, or a muscle twitches, or something random itches, or anytime anything feels off at all it triggers this whole new sense of awareness in me. It’s exhausting. Learning to trust my body again has been hard. To add to the “test” the week after the backpacking trip Meghan and I (plus my SIL and her BFF) ventured up to Canada and did the Rugged Maniac for our first ever obstacle course race. It was amazing, fun, scary, exhilarating and we are already signed up for next year.

 

I am slowly learning that my body is still mine, I just have to treat it differently and respect when it says no more then I used too. I am learning it’s ok to take naps, to let people help you carry your load, to express feelings, and so much more. Your body should be what you can trust more than anything and when you lose that it’s hard to come back, it’s also hard to explain.

 

Photos are from the backpacking trip and the Rugged Maniac. 

 

Stay in the know. Sign up to receive email notifications the moment new Journal entries are posted