Post-Stroke Balancing Act

It’s rather strenuous to balance life post-stroke. I admit before my stroke, I generally didn’t have it altogether, however I had the impression that I had a good grasp of things.  I started my day like most ordinary people do, grab some coffee, get ready for work, drive a long commute, work, come home and unwind and repeat. The weekends were sprinkled with commitments with friends or enjoying time at home, running errands, doing laundry. It’s repetitive, but all these actions were balanced effortlessly. It made life easy because I knew what my day to day looked like. 

Enter stroke, ruptured aneurysm, hydrocephalus. My carefully constructed life was tossed outside the door like garbage. To add insult to injury, recovery time hijacks balance because you must keep adjusting according to your life situation. After my first surgery, it didn’t seem like a task. It was easy because I didn’t have a schedule to stick to other than get some rest and get healthy. Becoming a newly unstructured person, I did make myself a little schedule for normalcy. I made sure I woke up at a certain time, got myself dressed, did some spot cleaning, and then laid on the sofa like a vegetable. I still don’t get that saying. Why a vegetable? My life seemed to make sense after I became accustomed to my routine.  So begins the pieces-  Post-Stroke Recovery Balance: I had my stroke around the end of Jan and didn’t go back to work until mid-April. During the grueling time of recovery, I didn’t have much to construct. I had to feel normal somehow so after my first surgery, I began a routine of simply getting out of bed and moving to the sofa. I got all my things gathered that I needed. I made an eating schedule since I was on medication that required me to eat and I was told in the hospital that I could stand to gain some weight. I found my TV shows that I liked and watched them every single day. My mother would come over around 10:30 a.m. and make sure that I was ok and kept me company. As time went (very short), I started to get dressed like a normal person would and not rely on my pajamas.  Enter my second surgery! My garments turned back into pajamas and I felt restless and returned to the sofa. Once the pain subsided, which was awhile, I got back to dressing up, getting involved in some activities as mentioned in other blogs. I went on walks, and eventually I found that I had some semblance of balance in my life. Granted it’s a rather boring balance because COVID19 it didn’t allow for much other than staying locked up in my home and weary of who came over. Also, I didn’t have obligations in place, that would require me to figure out how to juggle of the balls.  I could wake up, take a shower, eat, go to bed at my own discretion.  Post-stroke Going Back to Work Balance: I was thrilled to return to work. I thought this was the opportunity to introduce more structure and balance back in my life. Yet, after the first week it began to slack off. Suddenly I didn’t have control over the amount of sleep I got or the leisure to get ready when I wanted or do activities. I had a ball thrown in my hand that I couldn’t catch. I had obligations, and those were not negotiable. It’s funny how the body will wake up bright and early when you don’t need to but when you are required, the body doesn’t want to wake up. Getting Ready:  Knowing that I had to be accountable, made my early mornings hard. It was hard to balance the amount of time it took to take a shower and get ready. Before the stroke, I could hop in the shower quick. Now taking a shower requires additional time because I can’t let the showerhead hit my shunt. I take a pitcher and pour water over my head to wash my hair which added time. Putting on my makeup was effortless, now it takes a steady hand and a bit of time to get that look. When it came to selecting my outfit, I’m thankful I’m the type of person that steams my clothes on Sunday for the week, so selecting my outfit did not add time.  So, I would grab another cup of coffee and sit at my table and plug in to start working.  Due to COVID19, my type of work allowed me to work from home. I can’t imagine how life would all look if I had a commute. As the weeks passed and I was healing more, it was increasingly hard to feel energy. In fact, that lack of energy translated to a desire to sleep all day. Work/Life Balance:  My initial week back at work, I had to reaccumulate back. This was easy, because my work knowledge never escaped me, however, my brain was moving a bit of a slower than its usual rate, I had to make sure I balanced my projects timely and figure out what transpired during my time away. I had a bout of feeling insignificant because I missed a lot of things but that went away as I found my way back.  With my job I’m not obligated with a start time other than not surpassing 9 a.m. I couldn’t utilize this time allotment because as time went on, I noticed stroke fatigue would set in around 3 p.m. To hit my 8 hours, I had to wake up at an earlier time to meet my 8-hour goal, so I could sleep at 3. This was beginning to take a toll on me. The balancing act initially made me grumpy and not in the mood for much else. It seemed unfair, not by work, but that my own body had to find a morning balance to allow time for a nap in the afternoon.  Enter physical therapy! Around May my physical therapy team called me and said they were ready to see patients. I was thrilled to get my body moving around and regain the balance that I lost. This interrupted a lot of things for me, however. I was scheduled twice a week around 3:15 p.m. Not only was I tethered to get up extra early to make sure I made my appointment, but it interrupted my sleep fatigue nap. I felt tired, but I knew that I had to suck it up in order to balance this or it would take over me somehow. When I started my physical therapy, I sucked. Not only because I was weak but because I was overly tired. I didn’t want to do it. As more the sessions continued, I could feel this overarching hate for it because I just wanted to sleep. To add a dash of salt to the wound, the physical therapist ordered more appointments. I screamed. I just didn’t have time to balance all of this. I knew it was necessary, but it really got to me.  How do you balance, work, stroke fatigue and physical therapy all in one day? I really haven’t found an answer to that yet, but I had to change my mindset to accept this. I drank a lot coffee through the day hoping that would do the trick. It worked, but then when physical therapy came, I felt like my heart was going to jump out of my chest. So, I cut my coffee consumption around noon and made sure that I ate bananas and drank enough water, to physically make it. After I was done with physical therapy, I would come home and immediately fall asleep and wake up around 9 p.m. This shaded out a piece of my life out that should be with my husband. More and more I felt my balance drift.  Next, social obligations:  When COVID restrictions relaxed, social events began. Generally, I use my weekends to recover, but I couldn’t hide in our place forever. I went out to some dinners, celebrated a few birthdays, had friends come over. I felt like failure because my engagement level was not normal. I felt over stimulated, tired, brain fog, and sometimes tuned people out. For me, I wanted to crawl on my sofa and wrap myself up in a blanket and sleep. My inner self said you can’t be like this. You must figure a way to balance your whole world together. In time, I didn’t allow my fatigue to hold me hostage to see friends, that I desperately wanted to see.  Psychologically and physically it’s taxing, yet I’m still trying to figure that part out. I surmised it would be in the form of seeing people every other week, limiting time out and giving myself permission to leave when things become too much.  Next: The Dreaded Cleaning When I was recovering, it was easy to spot clean, even though it was advised to keep my movement limited. I’m a neat freak and I can’t relax unless everything is in its place. When my normal life returned, I just couldn’t find the energy to do all the things mentioned above in addition to cleaning plus doing laundry. My husband helps the best that he can, but there is a certain way I like to contain things. Since I’m working from home, everything in the house was within eyesight for me to see. This added to the list of not being able to work unless my house was balanced. This all seemed too much for me, and I had self-talks with myself about letting some things go, but I couldn’t. Perhaps it’s OCD, who knows. All these things were starting to add up and I’m feeling overwhelmed. I keep thinking that this can’t be hard, why am I allowing it to control me.  Next: The Art of Balance While I don’t have it down to an exact science yet, I had to pause and think about the can’s and cant’s and how those all play a role in balancing my life. Behold my list! I admit, I don’t stick to it, but it’s a map of what I strive for.

  1. Keep a consistent wake-up time that allows me ample time to shower and be ready for the day.

  2. If I don’t have ample time, then that ok.  Most people are working in their comfy clothes, so I shouldn’t be the odd one out from time to time.

  3. Take short pauses while working to move around and get the blood flowing. It breaks up the day, and if I need to start a load of laundry then I will. 

  4. Have my workout clothes ready for PT. I must release the dread of going. It’s an activity that is improving my mobility and a necessary action essential for the long-term.

  5. Take a nap at 5pm to 6 pm. This allows my body to rest, and not robbing me of precious time spent with my husband. 

  6. Before I go to bed, straighten up the place so it’s clean when I wake up.

  7. Activities with friends are important. Set boundaries which include activities that don’t over stimulate me and allow myself to leave early if it’s too much. 

  8. On Sunday, plan my week out by getting my clothes ready, look at my appointments, obligations. This allows adjustment. 

  9. Balance is crucial but it’s ok if it doesn’t work. 

  10. It’s a continuous learning process

Overall, it’ a dancing act finding my balance based on my life circumstances and changes. We all experience this even without a stroke or some medical trauma. We try our best to be habitual creatures (some are lucky and carefree) and when something doesn’t go according to plan, your balance is off. The best way to approach this is within the initial stages of your recovery to let things be. You need to naturally find balance and as your health improves more things can be added to the equation. After time, make a list to keep yourself in check, but don’t hold yourself to it because if something goes out of order, you might find yourself defeated and might not be willing to try again the next day. Reconfigure your list as you get better. This is a good indicator that normalcy is entering back into your life. Will it be the same life as before? No, but the silver lining behind this is that you can come out better balanced than you were before. You can be proud of those everyday steps that we generally didn’t care about previously because before it was normal mechanical behavior.   If you still find it impossible to find balance, there are plenty of resources out that can help you navigate yourself back. For me, I’m stubborn and tenacious and figured it out on my own. Well, I admit I still have improvements to make, but that’s fun in this-I get to set my own rules and change them at will.  I leave you with this last comment. Be proud of who you and how much you have achieved. Life is hard and it takes a special person to overcome obstacles that we have. We learn and adjust every single day. Not many people can do that. 

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