Someone on my Instagram recently said “I’d love to hear about you and Dan’s relationship with him as your caretaker” (see comment on this post), which made me realize that I really don’t talk about that much. I think it’s difficult for me to talk about, simply because it feels natural to me. However, I will try to explain things the best I can.
How Dan Became My Caretaker
Three months after we first started dating, I collapsed in my dorm room. Luckily, I collapsed halfway in the hallway, so I was actually found rather quickly. That morning, I had woken up and thought I had severe food poisoning; it felt like I had the runs or needed to vomit, but nothing was coming out. I expected to eventually get sick, and then feel a bit better, so my roommate went to class. Returning from the restroom the second time, I blacked out right after opening my door and then realized I was on the floor and my abdomen hurt! It seriously felt like I had been punched in the lower part of my abdomen. Eventually, one of the girls that was in my morning class saw me and got the right people, and I ended up riding in an ambulance to the hospital (did I mention there was a foot of fresh snow on the ground thanks to a blizzard the night before?) and was there alone for about nine hours. Why alone? Because Dan was trapped downtown and was having a very difficult time getting to me, it took him about three hours when it should have only been about one. It turned out I had had an ovarian cyst rupture! The cyst had bled into my abdominal cavity, and was causing pain. However, I also had a second cyst that needed to be taken care of because it was pushing on things. I went to an OB/GYN and started tricyclic birth control pills. Unfortunately, the pills did not help and the cyst grew from a small thing to over five centimeters (more than two inches) in the span of three months! We wouldn’t have normally waited three months, but we thought my gallbladder may be having problems so we had to wait to coordinate with a GI before I could have surgery. Luckily, my gallbladder didn’t have to be removed. (Collapsed late March 2009.)
During the three months I was waiting for surgery, while the second cyst was growing, we spent a lot of time in the ER for uncontrollable pain! When we weren’t in the ER, I was on either Dilaudid or Percocet, which rendered me helpless. If I missed a dose by even 10 minutes, I would wake up and start screaming in pain. Dan was going to class, figuring out my schoolwork, helping me do my schoolwork, and taking care of me. He would leave school, come wake me up, feed me and get me to take the pill, and then go back to school. I can’t actually tell you much, because I don’t remember what happened, I just know that I somehow passed all my classes thanks to Dan and I survived! He actually had to leave the day after my surgery, for a summer internship, so a friend took care of me all summer. (The surgery was June 2009.)
Then, things were going alright for a while. I have always needed some taking care of, usually just reminders or help with heavy things, and Dan never hesitated. Then, I started getting severe foot pain. I had never worked retail jobs before, had been working two of them in the summer of 2010, and knew that everyone complained of foot pain after work. Honestly, my feet had been hurting since the end of summer 2010, but I thought it was normal; after all, I was on my feet pretty much all day every day. It became obvious something was wrong when I would yelp or fall or start crying when I tried to stand/walk. We rented crutches from the grocery store (they used to do that), and I was hobbling around, expecting things to heal. Nothing got better, and I ended up at a podiatrist. When he did the ultrasound of the bottom of my feet, he exclaimed, “How are you walking?!” All I did was point at the crutches that were leaning against his wall. It turned out, I had almost completely severed both plantar fascii (the connective tissue that forms the arch of your foot; it actually runs from the ball of your foot all the way up into your calf). This was the first time I had ever needed to use a wheelchair for anything. I would use the crutches when I couldn’t get a wheelchair, but used wheelchairs for all my shopping. The doctor ordered me to stop using my feet as much as possible, so I would wheel myself around work on a desk chair, using my crutches like oars. Luckily, I was able to almost completely stop using my feet (crawling to the restroom from the couch, or to the kitchen) for quite some time, and they finally healed. I needed a lot of care. From the moment Dan came home, I stayed on the couch and he would do everything for us. Unfortunately, because it had been so severe, I now have chronic plantar fasciitis because of the scar tissue; if I’m on my feet for more than 15 minutes, I can feel the pain start, and it won’t stop until I can be off them for a significant period of time.
My 22nd birthday, shortly after my feet healed, we went skiing. Just standing on the side of a slope, my right knee started killing me. I’ve had knee problems since I was 12 (or even earlier, I can’t remember exactly), so I’m used to my knees hurting. However, when I tried to ski, I realized it was more than just a little pain and I immediately went to the base and sat down. I rolled up my pant leg and it was bruised, so I left it exposed to the cold air while Dan and my friend got in a few more runs. When we got home, I just put on my knee brace and continued on with life. After a little while, it just hadn’t healed and still hurt often, then I slipped and locked out my knee catching myself and it really started hurting. I finally went to the doctor. After the scans came back that my knee was fine, I was sent to physical therapy. The therapist was awful, so I got a different referral and went to a different therapist. This second therapist was fantastic! But then, one night, I started crying in excruciating pain that was all over my body! It felt as though my body was on fire and swollen and that ants were crawling all over me! When I told my therapist, he referred me to a rheumatologist. After more imaging and lots of bloodwork, I was diagnosed with fibromyalgia. Dang! That was my first major chronic illness diagnosis. This diagnosis also came just a few months before my wedding (Dx was January 2013, my wedding was June 2013), so I was worried I wouldn’t be able to enjoy my wedding! Thankfully, I was symptom free on my wedding day! After a lot of research and discussion, we realized that Dan was going to have to completely take over a lot of the stuff I had been doing, or I would never have any hope of managing my condition. There were definitely arguments and fights over things, but we came to an understanding and worked out a functional routine.
Since then, I’ve had many more diagnoses, and the same thing happens each time: we get the diagnosis, we determine how it will impact my life, we figure out what types of things I can do and can’t do now, we figure out a way to get things to be manageable for Dan and myself, we buy anything that will make life easier that we can afford and need, we fight and argue until we reach a mutual understanding of our “new” life, and then we fall into a routine that is more or less manageable for us both. Some days, things are far rougher than others, and sometimes I just plain can’t do something. Sometimes, Dan has to walk me to the bathroom like he’s a walker. Sometimes, I need to be “boosted” up the stairs to go to bed (he gets behind me and I kind of “sit” in his hands so he can take some of the weight for my tired legs). Sometimes, things just don’t work out well on a day and we fight horribly, but then we make up and things are better. It’s not perfect, but I can’t imagine having anyone else helping me through this. I’m a relatively private person, and I would be extremely uncomfortable with someone else coming into our house to do things for me/us.
I am working on a second part to this. For the second part, I want to go more into detail about what it is that Dan does. I was thinking, a “day in the life” type of thing. What kinds of things are you wondering about the most? My thought was to do one post with “two days” in it: a weekend day and a week day.
Comment below: What do you want to know about? What details would you be most interested in learning about? Is there a different format for “part 2” that you would like to see?
10 thoughts on “When And How Dan Became My Caretaker”
Love this. It might be helpful for him to post some thoughts – how does he care for HIMSELF too with all this? I think caregivers would be able to relate….
He won’t write… I’ve asked before 😛 He’ll do interviews though, so that’s why I want to do that! I figure it’ll be his perpective a bit better, but I won’t have to fight with him to write a post!
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I love this post and cant wait for the next chapter ,I also have fibromyalgia and just became my husbands full time care provider due to a stoke and other problems so I find your story very interesting-thank you so much for sharing
I had wanted to get part 2 up this week, but alas, I had a weather related flare-up 😦 I’m hoping I can get it up next week!
Hi, great to find you on CIB thread and I’ve shared your link on PainPalsBlog regular feature “Inspiring Blogs for You!” – great to follow your social media, share and connect Claire x
Thank you! ❤
Great to connect with you as well!
You are welcome xxx
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I loved this blog post! Thank you so much for doing it! A question I wonder about is, how do you function as a couple with one person being the carer. As someone who is also chronically ill, I wonder about the implications one person having chronic illnesses has on a relationship, and how you work around the difficulties. Also, what are the best things that have come from a marriage with chronic illness? I’m thankful for your willingness to be vulnerable for the sake of helping others and spreading awareness! Btw, I think a day in the life blog would be fabulous! :))
Aw thank you!
I will do my best to answer your questions in the next parts of this mini-series 🙂