This is a blog post by Elizabeth Joly on Porcelain Fibromommy.
If an outsider were to have been looking through our window on Mother’s Day, I’m sure they would have come away with the conclusion that I was a selfish and unappreciative daughter. Saturday night, I went to my sister’s 30th bday party. That meant I had to be social which is highly draining and seriously tries my social anxiety coping skills. I wore this bangin dress and cute (but not obnoxious) heels…. (I left the 5 in stiletto peep toes at home). Plus this was my first time away from my new baby more than a quick run to the store – add more anxiety. Come Sunday morning, I was in a full Fibro Flare and the minute I walked in the door my mum saw that. To my dad and brother I had to tell them that this was a No-Touch Day. Instead of helping prepare dinner, set the table or help in general, I sat in Papa’s recliner and simply rocked with the baby. Once dinner was ready, we all gathered around the table and Mum took little Findlay from me and put him in his bounce chair which she moved closer to my chair. Other than helping with clearing the plates and prepping the dessert, I didn’t help. I sat in a comfy t shirt, leggings and sweater in my dad’s chair. I recovered. My family was very much okay with that.
We each have to be a little selfish when it comes to our health. We simply don’t recover and bounce back like a normal person does. I do as much preventative care as possible so that I can do things like going to my sister’s bday party and then attend Mother’s Day lunch. Its really important to me to continue living life. I’ve said it in several of my posts. Here’s how I make Living Life work for me:
My health is My priority. Its been a priority since I was 16. I see my doctor every month, and when things are going really well I get to go a whole 3 months between appointments. At these monthly appointments we discuss how my medication is working, or in most cases, not working. The migraines, the depression, the pain, and even the children. Not only is my doctor awesome, she’s a mum of 3 (2 are boys) and so she gives me advice or simply reassurance that I’m doing ok. We’re constantly trying new medications, retrying medications that we might have tried 5 years ago, tweaking medications. Plus she listens to me about what I’m trying naturally at home and makes sure that its also safe and works with the medications I’m on or that she’ll be putting me on. I’ve been using the Medication Reminder and Tracker on the Health Storylines app to track my medication usage. It is super helpful for medications you take regularly. Just put in your medications and when you’re supposed to take them. Then on your phone or tablet, you’ll get a reminder notification to take your medicine. It will give you 3 options in the pop up “skip” “postpone” and “taken”. The postpone gives you 15, 30 and 60 min options and you can postpone multiple times. Since most of the medications I take are as needed, I use the postpone button a lot on my Norco and if I don’t need it I can hit “skip” and then choose the option “not needed”. But I use it on the dot every night for my other medications that are better taken at the same time every day. If you skip a medication it gives you a list of reasons why you chose to skip it so that you can later track it. Totally wish my husband would use this app simply for that feature……… maybe I should add his medicine to mine so I can remind him. hmm. that’s an idea.
Take Me Time. I put my health first, and it does consume a lot of my thoughts and energy. But I’m still human. I’m still a woman. I have dreams and desires, wants and needs just like any healthy person. I am still making my bucket list even though I don’t know how I’ll be able to do some of the things on the list (like flying in a squirrel suit). So realistically I’ll never get to sky dive and swim with otters, but I can still get that cute comfy outfit so that I feel feminine and cute while I’m stuck on the couch. I recently took the time to get a professional hair cut, my first in 7 years. It looks great up in a pony tail as I sit on the couch, and even better on the rare chance I actually do it to go to a party or on a date. Something very important in my Me Time, when I’m feeling able, is to be sexual with my husband. My husband is amazing, no doubt about that, and he never pressures me into having sex if I”m not feeling like it or able to. But he takes the time to make me feel beautiful when I’m flaring, and when I am feeling well enough, I make sure to treat us both to some R rated time together. I need it just as much as he does. Granted, it doesn’t happen as often as he or I would like, but that makes us treasure it all the more. Sometimes that Me Time is leaving the boys with hubby so I can go browse my favorite bookstore for a new book to lose myself in after they’re all in bed. If I don’t take Me Time, eventually my body forces it on me, and not kindly. Often its a week long course of migraines, or sometimes its several weeks of depression during which I basically function enough to take care of my children and the pets and that’s it. I’m not one who’s much for all those inspirational messages, yes, they can be applicable and noteworthy. But they’re not going to cure me or change my life. But if I liked those messages, there’s a cool Tool on the Health Storylines app that is called Healthy Doses. After you click on it, it pops up with 5 clickable buttons: Gratitude, Optimism, Love, Funny and Mindfulness.
Keeping Active. Often with Fibromyalgia the last thing I want to do is move. But sometimes, the absolute worst thing I can do for my body is to NOT move. The pain makes me want to curl up in bed or on the couch and hide from life. Sometimes I need to do that, but I can’t let myself stay there. Having kids usually keeps me moving. With this nicer weather, each night after dinner we walk to the school playground that is near our house. Its slightly uphill on the way there, and thankfully slightly downhill on the way home. Once we get to the park I pretty much just sit on the bench there and watch the boys play. Then after an hour or so we walk home. I track my activity level on Exercise Diary that I was able to add to “My Tools” on theHealth Storylines App. By tracking how much activity I do, I’ve been able to see how a moderate even level of activity typically allows me better days following. Any extra activity however, typically means I’ll have a worse day or two following. I knew that, but its nice to be able to show my doctor the results.
You should check out the app though, there really are so many cool features and it seems fairly comprehensive and customizable. I’m still learning it, but I keep adding more tools to my “My Tools” list so I can track everything in one place.
What do you do to Take Care of You? What is in your Me Time? Leave a note in the comments.