I’m so excited about so many things and I want to do everything. So, pacing is one of my biggest challenges. I still don’t even understand how beneficial pacing is with my particular condition(s), but I do know how much I dislike feeling like my body has hit a wall. And I hit many walls when attempting to do pretty basic stuff like going out to dinner and the like. I felt like I did pretty well with pacing over the holidays, but it meant so much time resting. Well, I knew the upcoming January birthdays were going to be another opportunity to learn about pacing, and I was right.
I have four family birthdays during the first half of January. They all decided to do a joint dinner like we have for a while now- it’s become a tradition at the local Benihana. It’s become something of a Capricorn Bash. I find evening activities to be the worst because I’ve already used my daily spoons before the sun has set. I wasn’t sure how to handle it because coordinating a lunch against tradition would have been quite the upheaval. So, I went along with it. I tried to get all the gifts in order, but it was kind of a mess in the end. When the time came to leave for dinner, I was so symptomatic that I just wanted to stay home, but I felt so much pressure to go.
My husband took me and we brought the wheelchair. When we got into the restaurant, our large party was mostly gathered and the waiting area was just swamped with people. I struggled to find a place to sit in my wheelchair out of the way. My aunt greeted me and attempted conversation, but I could barely raise my head to see her. I felt like I was watching us from far away, like I was a underwater trying to make out her words and figure out how to string together a sentence. She was very sweet and did her best, but it was strange to have her see me so out of it. We finally got seated and I was pleased to be out of the way. I ended up feeling better as the dinner went on and was finally able to engage a bit more. Everyone was happy we had made it and I received a few special thanks since they knew it was especially challenging for me.
The following day was an odd one. My husband stayed home from work (working from home) so that we could go to counseling together. We decided to go to lunch and invited my sister and mom (who would both have birthdays the next day). It was pouring rain and things started with our car accidentally backing into my sister’s (no one was in her parked car). My husband was driving, there was no damage, so everyone thought it was fine. Of course, I’ve had whiplash and so even the small bump had my head, neck, and shoulders hurting. I made mention of this and felt like everyone thought I was just overreacting and whining, which was hard for me because an uptick in pain like that is very real for me. I tried to just let it roll and tried to deal with the extra pain.
Due to the heavy rain, I left the wheelchair at home- we worry about it getting damaged. So, I hobbled into to our counseling appointment with my cane/stool and arrived out of breathe with my husband. The counsellor was obviously struck by seeing me without the chair, which I used for the previous visits. She asked me about it and it felt weird trying to explain. I thought I had already mentioned that I was a part-time wheelchair user, so I wasn’t really sure what info she wanted from me and it made feel oddly defensive as I tried to describe why I was still able to be there without the chair. The session seemed a little strange, too, because I felt a bit like she was putting my husband on the spot and making it sound like he doesn’t pay enough attention to me, which sees pretty harsh. That being said, I do welcome the opportunity for dialogue that may help me and my husband to bond more. And for me, I’m really into using positive language, so I think the counsellor’s approach was far more direct than I would have expected. And I do recognize that my positive communication style can leave people unaware when I talk about negative things- I can lose my message with tough stuff because of the soft language I use at times. So, the jury is out on how things are going with all this counseling. We go back soon to dive deeper. In the meantime, hubby has already been sitting with me more often and has been more cuddly and communicative. I am loving it, but feel like maybe this wasn’t the best way to get that result. My husband already does so much for me and this feels a bit like shaming him into doing more by implying he hasn’t done enough. And that would be terrible because he does a ton!
Yesterday was the much anticipated mom/sister birthday. I used to get so jealous because the birthday girls would do fun stuff together and I would feel left out. They’ve been more sensitive about this during my adult years and I have become more sensitive to their position as well. It is their birthday, after all. I had initially agreed to babysit my nephew with my dad’s assistance so that the ladies could do some fun stuff together like massages and pampering. Then my sister showed me the entire schedule for their birthday and my head just about exploded. My part of babysitting was scheduled for my most functional hours- midday, but then there were plans after that for inviting the family to go to a movie followed by a boat ride in the harbor that evening. I love boat rides!! And I wanted to see the movie. I expressed my interest, but explained that it was likely that I’d use all my spoons babysitting. So, I was tentative for the rest of the events and everyone was cool with that.
Babysitting with my dad was fun, but also much harder than I anticipated. My nephew was crawling the last time I babysat and now he is walking (running?). My dad was super helpful with cutting up food and stuff like that. And like before, I was on diaper duty. I change diapers on the floor with a towel or pad down as I am unable to safely stay standing at the diaper changing table. Well, that table has a strap that a towel does not have. My nephew kept flipping over and squirming away from me and taking off mid-diaper change! It would have been funny if he wasn’t so upset with me for my continued attempts to get him cleaned up and into a fresh diaper. I used so many spoons that I didn’t really have as I chased after him. I also spent a lot of time crawling around after him and now my knees are so bruised up. By the time everyone was going to go to the movies, I had already pushed myself too hard.
It took a lot of will power to know that I had to stop pushing and that I needed to go home and rest, but I still did it. I am proud of myself for deciding to rest when I knew I needed it. I had a mopey afternoon with too many moments of feeling sorry for myself. I was surprised I couldn’t cheer myself out of it. I just knew that my family was off celebrating and doing things I’d love to be doing with them. I was also in a lot more pain than usual. And, I was thinking about how challenging parenthood can be and was discouraged that babysitting my nephew had pulverized me so. I hadn’t even been able to see the birthday girls on their birthday or hand them their gifts. When my husband got home, I was so symptomatic and feeling lousy. I told him how I was feeling and he just held me for a while. Then he had some suggestions about helping my sister with my nephew to give me more exposure and to build myself up with the childcare stuff. I thought it was a great idea and his support just totally cheered me up and helped me to feel loved and optimistic about the future. I love him so much and I am so appreciative of him!
Now I am just trying to recover and rest. The rain has cleared and I wonder if the weather will let up and stabilize to the point where it’s not setting off my symptoms so much. I’m still a little sad about missing out yesterday, but I am focusing on all the good stuff. I got to spend time with my nephew and dad. I got to free up my sister and mom so that they could get some much deserved rest and relaxation in. I have an amazing family who I enjoy being around. I am getting better about pacing myself. I have a supportive and loving husband who is there for me. In fact, he just brought me a lovely lunch! And, it’s a beautifully clear day outside allowing for a view of a freshly snow-capped mountain.