Finding time for self-care when you don’t have time for self-care | Brooke Pagé

Posted by Reeve Staff in Life After Paralysis on May 10, 2019 # Caregiving

Overwhelm.

This is the main feeling I have experienced a lot in the years following my husband’s accident that left him a C4 quadriplegic.

At first, it was the overwhelming feelings that came with our new life together - no sleep, emotional ups and downs, and having no clue how we would make it through the new challenges that were presented to us. The world seemed like it was against us in every way. I constantly felt like I was drowning, and unable to process anything properly because I was too focused on staying above water. I was too tired to think clearly; too sad to find reason; and both of us felt hopeless. My heart ached for him - watching a partner who was once your rock go through the type of depression that comes along with a sudden SCI is something I wouldn't wish on anyone.

I began to tell myself whenever there was a surprise hiccup, health issue, or fight between the two of us that “This too shall pass.” Sometimes when you are in the midst of chaos you have to tell yourself things you may not necessarily think are even possible at this moment, in order to mentally get through. This is what I did every single day. I grasped onto the notion that this would just be a rough phase, and as soon as the storms passed, things would eventually be ok.

As time went by, our new life together started to become less of a shock to both of us. We had his routines down to a science each day, were managing our emotions better, and slowly healing. I could feel the panic I had felt like clockwork each morning slowly get less and less, and although there were still plenty of daily struggles, I found myself being able to handle those setbacks better and better. Although things were evening out slowly in terms of his injury, I still found myself overwhelmed at even the smallest tasks outside of his care. I soon came to the realization that the overwhelming feelings and anxiety I experienced were caused not by the stress of his condition, but at all the other things I was left to handle. I had so many burning questions and not enough mental strength to find the solutions I needed to find balance.

How do you find time to clean, do laundry, take care of the dog, deal with medical insurance, do all the shopping and errands while still caring for your partner who is in a weakened state and not capable of helping or understanding what you are going through? How is it possible to maintain a social life when you feel so isolated? How can I do all the things I have to do in the day and still have time to care for myself and my own mental and physical health? How do I go out and do anything while he's sitting at home with his own thoughts? How could I talk to him about all of the heavy things weighing on me when he was struggling to deal with his new life of paralysis and health issues? His life had changed instantly, but so had mine. Yet, I was intent on hiding my feelings and frustrations because it was he who needed all my strength. How could I complain about anything or find any solutions when it was him who was suffering the most?

The guilt I felt on a daily basis was immeasurable. The list of things I had to do was never ending. My new role as caregiver and lover was something I wanted, yet, could I actually do it? Could I actually succeed in this life while balancing every single other thing that needed to get done? Would I ever find the time to do things that nourished my soul, helped me to feel better, and give me some peace?

Over the past five years since my husband’s injury, I have met many women who are in caregiving relationships like mine. To this day, the most prevalent issue we all seem to struggle with is the balancing act of caring for your partner, being their support system mentally and physically, while still finding and then making the time to do everything else that has to be done, and then magically finding some time for self-care. This can seem impossible, but I can assure you, it’s not. With the right perspective, mindset and proper organization, you can get to a place of focus, calm and efficient management of your time - if you want it.

Here are some of the tips I have learned over the years that have worked for me as a “Quadwife” in order to take some of the overwhelm off my shoulders and allow me to live my life on my terms with more time for self-care and reflection. It may not all work for you and your life as everyone is different, but if you can get inspired by this in any way, I’ve accomplished a lot.

Figure out what makes you happy. Do some deep self-work and really figure out what you NEED to feel content. I spent a long-time self-searching after my husband’s accident to find what I really needed to feel some true peace for myself. Learn what makes you tick, what helps you to feel productive and what can contribute to your emotional health. It may be reading an inspiring book, cooking, taking a class or learning something new. It could be physical like yoga or a new fitness routine; it could be teaching others or being creative - or taking up a new hobby. Whatever it may be, find something that truly makes you feel butterflies inside your stomach when you do it. When you're figuring this out, pretend like your partner’s injury isn't a factor in your decision making. This is about you. Find your calling. The “how” will come later if it’s what you really want to do for your self-care.

Take some of the load off yourself. I realized that it wasn't my husband’s actual injury stress that was the real stress for me. It was chores, paperwork, money issues, and daily living tasks that were stressing me out the most and throwing me off balance. I found this out by imagining that I did not have anything else to do or worry about in life but caring for my partner. I would meditate and imagine what my life would look like if my partner was still injured but I had not a care in the world other than looking after him. I felt free. I realized I actually enjoyed caring for him - the act of that itself actually nourishes my soul. After that, I started to break down what was contributing most to my stress. Then, I started to think about what I could delegate to someone else to take something off my plate. It was the little things that made the biggest difference, and although we didn’t have an expendable income to throw around, I still could find the money to pay for small things to get done for me that had a huge payoff for stress relief. Here are some ideas:

  • Get someone to come in and clean your house - even someone coming once a month to do the heavy cleaning will take so much stress off your plate. And who doesn't love coming home to a spotless home! Find the extra money from somewhere to make this work - or get a friend or family member to come in and clean as a way they can help out. People are always looking for ways they can help and most don’t know what to do. Instead of bringing you a casserole, tell them to come and clean for a few hours. This will be so helpful and the right person will be happy to help this way. People who love you want to feel useful.
  • Take your laundry into the laundromat to get cleaned and folded. For $15-$20 you can get someone to wash all your clothing and sheets, fold them nicely, and have them waiting for you when you come back. This can be a huge stress relief because although simple, it gives you some valuable time to yourself back - and there is something incredibly luxurious about having someone else deal with the laundry for once. It may seem simple, but like I said above its the little things slowly getting taken off your plate that add up. Drop your laundry off, go home and read a book, or, go do something for yourself.
  • Ask for help from staff already there. If you have home care or nursing that comes in to help your partner, ask them if they would be open to adding in an extra minor chore to their workload each day. Most care aids and nurses are looking for something to do in the downtime or minutes they are waiting for things to “happen” - ask them if they can help do some dishes and tell them how much it would help you out if they did. Most are so glad to help, and you can even offer them something like a few extra bucks or a gift card or bottle of wine in exchange. If you source your care from an agency, when you request a new care aid put on your list of requirements “light housekeeping like laundry and dishes when required.” This means you will get someone who knows that you need this as a job requirement. Aids are trained to assist their patient, and if you weren't there, they would do things around the help to assist your partner. So, you’re part of the household too and that is technically part of their job. If this is important to you, find someone who is open to helping you with this.

Organize your time more efficiently. Reorganizing your time and making your life more efficient is key in stress management. I found that I was all over the place all the time mentally and having things in the back of your mind to remember adds more stress to your life. Take advantage of organizing yourself better, writing things down, and getting in a habit of “noting and forgetting” with your smartphone (writing things down in your phone or organizing things via an app with reminders then putting the task out of your mind and relying on your phone to help you). It seems silly but using your phone as a virtual assistant will take a huge load off of you. That is what they're designed for anyways!

Organize your time with Apps. There is a bevy of apps available for your phone and computer to help you organize your life - use them! Take some time to research apps that help you to stay organized and efficient with your time. Schedulers, receipt organizers, etc. are all available - you would be surprised about what is out there now! Use things like the Habitica app to organize your task list so you won’t feel like you have to remember everything. It turns organizing tasks into a more of a game, so it doesn't seem so daunting. Use a period tracking app so you know when your time of the month is coming, and you don’t have to be surprised when you feel more emotional before your time of the month; Use apps like Headspace and Talkspace to remind you to meditate for even 5 minutes a day and give you accountability for your own mental health. Download the best meal delivery apps and be on the lookout to FREE delivery deals on apps like Door Dash and Foodora. This will save you time and money when you just don’t have the time to cook. You can also order in and make an at-home date night with no cleanup. Monitor your time spent online and on your phone with data tracking apps like Quality Time so you can see how much free time you're actually spending on your phone. Look at that, then adjust it so you can take some of that time out of the house for yourself instead of doing something more mindful.

Using apps can seem stressful in itself, but, I promise you that once you learn how to use them and put effort into organizing your life on them, it will help you out so much in the long run once you're used to it!

Get your partner to help. He may have limited function, but he can help you out in his own way! Talk with your partner and creatively discuss how HE can help you out with more little things that would make a big difference to you. How can he contribute? Most men who are going through this injury look at all that you're doing and feel horrible that they are helpless. Help him to feel included, needed and valued by jointly discussing how he can participate more. You may be surprised as to how much he can do that he originally thought he couldn’t. Being in this unique partnership can be fun if you make it fun, and when he has something new to do for YOU it will make him feel amazing.

Take advantage of free time you DO have. I love to sleep in, but I also LOVE to get up early. The feeling I have when I get up early and seize the day, helps me to feel better about life in general. You may not be an early riser, but have you tried getting up earlier than your partner OR organizing having him stay in bed longer than normal to allow you some time to yourself? Get up early and go to the gym - find a reason to start a new early morning routine. If you're not a gym person what about a home workout routine that you can do before everyone gets up? Sure it may be hard at first to establish this, but those few extra hours you can give yourself can mean everything. Another idea - If your partner has an appointment that you don’t necessarily NEED to be there for, why not drop him off and go take a walk in the great outdoors? Go shopping? go have a coffee alone and read? Whatever you can get in when you DO have some free time, do it! I find myself constantly strategizing about the little things I can do for myself in the time I have to myself - even if it’s just 15 mins. It becomes fun to just do things because you want to, not because you have to.

Stop comparing yourself to others. Your life is different than everyone else. Stop looking at others’ lives and comparing yours to theirs. It can be so damaging to constantly look at other’s photos online when their lives may not even be as they seem. For me personally, when I stopped comparing myself to other couples I knew and lived my life for me and us - doing what I wanted and what worked for him and me - I stopped being so stressed in general. Life is not about comparisons, especially with this injury and this lifestyle. Focus on what makes YOU happy, DO YOU - and don’t expect to be like anyone else. People are generally unhappy with some aspects of their life, and always looking for ways to validate themselves by posting all their best moments online. Most likely these people are not as happy as they seem to be, so don’t let others lives influence yours. Create your life how YOU want it to be - doing what works for you. Find your own kind of freedom and realize that everything is possible if it’s what you really want.

Some of the “stuff” can wait. I have met women over the years that become extremely resentful when they don’t address their own needs or get any self-care in. I have found that that resentment can come from making excuses and not spending the mental energy needed to discover what they actually need to feel good. Spend some time thinking. Spend some time journaling if it helps. Don’t put this off - it’s all that matters. Getting in touch with who you are, what you need, and what will make you feel happy is all that is important. The chores can wait - whose time schedule are you both really on anyways?

Time Is all relative. Plain and simple, time is a construct of our own reality. The timeline we are on, the time we have to do things, the time we allot to a schedule, the time allocated in our day, the time we are expected to work with. It’s all according to us and our frame of reference. Take a moment to really truly think about this. Whose timeline and schedule are you on? If you’re unhappy with the time you have in the day, and who’s timeline you are on - try and think about ways YOU can change this to suit your needs. Try reorganizing things, or at least start thinking about your construction and view of your own time. If something isn't working for you, change it. If you feel like you can’t change it, re-think that. Are you in charge of your own life? Do you and your partner have the ability to re-think things and restructure your idea of who’s time you are running on? When you start thinking about things differently, things usually change. Work on thinking about YOUR time - it’s your life. No one can tell you how to live it regardless of how restricted you may feel. It’s up to us to put in the work to change things for our own lives. We only live one life - make it count on your own terms and what works for you and your partner. Build your own life how you want it. It’s empowering.

I hope that by reading this you can feel less alone in your battle to balance your life as a caregiver and a lover. It’s the little things you can do each day that add up and really help to make you feel less overwhelmed and more content. This life is challenging - full of twists and turns and unexpected surprises - but, I’m sure all of us out there can agree that living this life truly makes us better humans if it is what we want. Don’t forget YOU. Your soul matters.

I recently read a remark from one of our male followers online who had given his insight into his partners self-care. He said, “her self-care is my self-care.” Those words were SO powerful to me, especially coming from someone like him who has a spinal cord injury and a caregiving wife. When her soul was nourished, and she was living her best life, HE benefitted so much in many ways. When she was content and feeling happy, he was happy. This touched me in so many ways, and I hope you think about that next time you shelve your desire for getting in some “you” time. A happy, flourishing soul is the ultimate partner, caregiver and lover.

- Brooke, WAGS of SCI