I know that I am getting old…I can feel it. Days start to roll by and the months add up. But when did my life get so mundane? While recovering from my hellish year of medical challenges… Ha! Can’t keep a good girl down… I noticed certain patterns. When your life is chaotic, and everything seems out of control, naturally we seek out ways to cope. My coping mechanism… besides using humor with a dash of sarcasm… was to find routines that helped keep my mind heading in the right direction.
An example of this was clearly demonstrated when I had trouble keeping a ostomy bag on after enduring major abdominal surgery. I was expected to change my bag, maintain its seal to my body and prevent any skin breakdown. Now this might not sound too daunting, but toss in the inability to manipulate objects in my hands, the double-vision, absolutely no control of my Parkinson’s symptoms, cognitive impairment from the anesthesia… oh, and don’t forget, I live alone.
My mom, who is brilliant, devised a system of changing my bag. My family has always been artistic and crafty… now you see where I get it… so my mom went straight to the craft store and purchased a tote that would hold everything needed to change out my ostomy. With her help, we created a routine that I could use to remain independent, which ultimately gave me more control over my life.
But what happens when these routines get in the way of living our healthiest self? Example you ask? Now that I have been on medical leave since September, I have experienced anxiety about leaving my house. My house has become my safe zone. I can control everything, from the daily schedule… that my dog Crash must abide by… what movie I am going to watch, what food I will have in my refrigerator, to even when or if I will shower that day. Hey! This is a judgement free zone. You try showering ever day when you have an ostomy bag, an IV picc line, and multiple incisions to contend with… not so easy, eh?
I am happy to announce that I am officially going back to work next week. I had my IV picc line removed and my ostomy reversed and am feeling stronger by the day. But there is this nagging dread of leaving my routine. Let me explain in detail by telling you what my average day looks like…
8:00am: Get out of bed and feed my animals (my dog, Crash and my canary, Dexter)
8:30am: Eat breakfast (same frosted mini-wheats I eat everyday)
9:00am: Catch up on the news shows
10:00am: Decide what I will do for that day, i.e. run errands, hang out at the office with my friends or maybe another Doctor’s appointment.
12:30pm: Eat lunch from whatever restaurant I am binging that week, i.e. could be a sandwich, maybe some sort of chicken.. who knows!
2:00pm: Go home, turn on some recorded shows and take a nap… Crash’s favorite part of the day.
3:00pm: *This is critical, if I don’t get Crash out for his afternoon walk by 3:47pm, the local schools get out and my apartment complex becomes very busy.
4:00pm: Take Dexter out on the patio for fresh air, I will read a book as Crash will lay on the bench next to me, occasionally barking at the kids walking by.
5:30pm: Make or order dinner… eat.
6:30pm: Watch a movie, seeing as I have every cable/streaming option available
9:30pm: Take Crash out for his last potty, get ready for bed
10:pm: Crawl into bed and read until I’m falling to sleep.
8:am: Do it all over again!
Just writing this blog has me thinking… Wow! My life is boring… I am defiantly not thriving. I know deep down inside that going back to work and breaking out of this “recovery routine” will force me back out in the world. I know that it will be good for me, but when do routines become hurtful, not helpful?
I have a feeling that if you aren’t aware of her already you would enjoy getting to know @gretchenwilson
I think routines are very helpful. When I was feeling disorganized and was losing details, I devised a few steps for me to follow when I got in the office every day. It really helped me make sure I was getting things done that needed to be done and preparing for future things coming down the road. It got me back on track.
PS I saw your Twitter post and great to see you back to exercising!
Gretchen, Yes I’m back to exercising and work! Feels a bit surreal! Thank you for your comment!
I try to change routines and habits literally every day. After a while you might just notice you have gone weeks on your new routine without realizing how hard it was to maintain at first. I like to keep track of my habits with something called HabitHub. It’s pretty good, seems ineffective at first, but after a while of seeing your habit data, you begin to get encouraged.
Paul, what a great idea! I will check it out! Thanks for the comment. Hope you are well!
You are a inspiration to Parky’s. I am stage 4 and having more trouble with mobility. Some days are good, most days the symptoms are getting worse and ganging up on me. I can’t physically do the things I used to do.
Congrats on going back to work! I understand how hard it can be to break out of your safe zone.
It sounds like your routines have been a great way to help you get healthier! I’m sure you’ll start to figure out a back-to-work routine too.
I’ll be thinking of you this week. <3
Thank you Steph! One day at a time!
I am glad you are back !!!
Allison, I continue to find your presence both an inspiration and a comfort to me. In particular, your going back to work. I’m 70 years old and in my ninth year since being diagnosed. I am still working full time as a college professor. Sometimes I feel awful and have periods of doubt. But through the emotional downs and tremors I am persisting because I love the work and wouldn’t know what to do without it (I should look at that I guess). For a while I thought my world was collapsing all around me, as I assumed progression of PD would lead to the end of my career, the end of travel, even the end of relationships. I thought I would it be able to work by now. And I’m going to Ireland with my partner and my 19 year old daughter in a few week. Have levodopa will travel! Discomfort will come along for the ride. I have declared it to be my last trip “home.” Your past guidance and current determination make me realize it ain’t over. When I feel awful I wonder about my future. But with a dose of determination, modifying my expectations, and models like you and MJF I will keep living my life. Thanks.
Garrett, trying to keep up with your normal schedule can be difficult, but there’s something about being out around people, that gives me positive energy. Even if I have to “fake it till I make it” some days. Thank you for your comment!
You hang in there until the moment you’re not enjoying it any more! Stuff other peoples’ rules, make up your own 😃 Personally, I’ve decided it’s time to work out what my ‘New Happy’ looks like – I’ve finally realised I need to let the past stay in the past & I can reinvent myself any way I want to & that includes a whole new understanding of what ‘happy’ looks & feels like 😊 Once upon a time I wanted my career, to sell a billion dollar deal, to have a big house, brand new black shiny Merc, very high heels, expensive handbags & beautiful jewellery. When that’s no longer an option I suppose it’s natural to mourn its loss. But after that you have no choice but to be a different person. And I wonder if a similar thing needs to happen with reaching an age – &/or having a crappy health condition – where the healthy thing to do is to really enjoy thinking about your own ‘New Happy’? It can be as simple or demanding as you like. It might be to spend every day in the sun, to wake up in a huge soft bed, to smell flowers every day. But it’s in our control, it’s ours to dream & nobody else can dictate it. I hope your New Happy is everything you wish for the next phase of your life – with life being the operative word! We owe it to ourselves to squeeze every drop of pleasure we can from whatever time we have & despite our challenges we still deserve to figure out whatever it is that makes us smile 😊
What? No Fro Yo as part of your daily routine?!…..Glad to hear that you’re going back to work 🙂
What, no Lucky Charms for breakfast? Oh, that’s right, you’re eating healthy.
Sounds delicious! But I must get healthy again….
I certainly believe it is a good idea to work on breaking out of the routine now and then, but not too much. Had a friend come over to paint with me for a few hours last week, which lifted my spirits for several days.
However, last night’s break out of routine, where I combined sharing a bottle of wine with hubby, while online shopping has proved a mini annoyance as we have both slept through the alarm and I am 2 hours late with my meds ha ha. In other words, I am moving like Penelope in Thunderbirds and can’t get much clarity in my speech. Hopefully the meds will kick in soon. The break from routine can be an uncomfortable, but rewarding stretch. But let’s face it, the days of comfort are over, any way.
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Vera, I feel you. One day of fun can bring on rough mornings.. but we’ve got to keep up with the things we like to do!
Routines are really helpful, even if they seem dull! (And lets face it, dogs adore routines 😉).
I can understand that getting back to work is both exciting and scary… you will have to develop new routines (or resurrect old ones) and I bet Crash will be mournful… he’s been used to you being home all day.
But so fantastic that you are so much better after your horrible year! 😘
Helen,
Soooooo true about dogs loving routine. He will be like a spider monkey on me next week when I am away from home for longer periods of time, but it will be good for both of us.
You rock. and Crash is proof pawsitive that there are those of us who relish coordinating our routines with exceptional canine carepartners. They’re fonts of unconditional love we share alike. Keep smiling.
Oh you’re so right. My wonderful doglets are my best friends, they just love me unconditionally, adore being told we’re going ‘snugging’ on the sofa & are always so delighted to see me – even if I just went out to get something from the car! 😆 I wouldn’t be without them for anything! 💗💗