I’m a pretty tough customer in physical therapy. But, the other day my physical therapist said something very poignant that gave me pause. I’d like to share it with you.
He said, because I’ve had chronic illness for so long, I’ve adopted so many coping strategies to help me through. So many techniques and methods I call my own to get me from one day to the next. (And here he is teaching this old dog new tricks.) However, he was right when he asked me, “Is all of this still working for you?”
You start collecting techniques from the very first moment you hear the word, “permanent” or “chronic.” Our doctors don’t help as quickly as our own shifts and wriggles take effect. Soon enough, you’ve built a pattern for yourself that is keeping you going. Over so many years, and multiple conditions, you better believe I have some modalities and some definite patterns! Are they still working for me?
Could they be holding me back?
Adaptation is paramount with chronic illness. You have to be able to rebuild in order to find purpose again, to find yourself again amid your ever-changing body. But as your body changes, does the structure that you built change with it?
For instance, if all you were once able to do is use the computer or your smart phone, maybe you grew a strong online network which gave you purpose. You could have done nothing instead, but you were brave and reached out to others online. It was incredible how much your work online distracted from your illness and impacted your life and the lives of others! It may have even saved your life. But as your body changes, you realize you can do more tactile work like crafting. Is spending as much time on the computer still working for you? Or, could it even be holding you back from moving more?
I have to go over so many of the coping tools I use- all of the amazing methods which have helped me to this point and ask this question. It’s spring after all; time for a spring cleaning of sorts. Is it STILL working? It may have saved my life last year, but will it take me to my next goal this year?
So it has been 9 months since my husband and I parted ways. For us it was not a gradual thing. Well, maybe for him it was….
[I’m going to get through this without talking about his personal details.]
On my end, I knew he had been struggling all year, and I was trying to be uplifting. One day, I was texting him love messages, silly photos (which are now just embarrassing), funny videos, and anything to try to help him smile at work. The very next day, I was living at my parents’, confused, and unsure what happened the day before, or why.
I don’t remember much about that conversation after he got home. I do remember messaging a friend in a daze asking what I should take with me, and Google searching
: “what do you take in case of a fire.”
In some ways, 9 months has flown by, and in other ways, it has dragged on much too slowly. It has felt impossible at times for my heart to catch up to all that has occurred, the choices that were no longer mine to make, the quickly unraveling dreams that were out of my control. I was often reminded that I had experience with surrendering, and making peace with pain, and could do it again if forced to. (I think people with disabilities are resilient in that way, and though it feels like every day is a fight, we learn adaptability which is a gift!) On the other hand, I felt continually impatient. If you have ever waited for test results that would almost surely come back with an outcome you don’t want to hear, something within you cannot help but crave the knowledge of it, no matter how bad. Almost like the tree of good and evil. Waiting was like an itch I couldn’t scratch. A part of me wanted to know my future in certain terms, and with immediacy. The rest of me was at peace to wait a lifetime in limbo, however impractical that would be.
That afternoon was our last conversation as husband and wife; I didn’t know it was goodbye at the time. You may remember, I wrote A Season of Waiting just after. Now you know the inspiration behind the message.
And while so many months can seem like a very long time, with a new life emerging beneath me, there are still huge landmines that explode in my face when I least expect it. Several exploded from the mail box right after breakfast this morning. It was a hard day, but not the first, not the last, and I’ve certainly not seen the last good day either. The “process” ended just last month, but THIS process is only beginning.
I’m trying to grow accustomed to managing life on my own. …Without having someone to share these pitfalls and triumphs with. Loss and heartbreak is certainly not new to humans; and I will adjust to it better and better. I confide in God, and it is incredibly humbling to share my worries with the creator of the universe.
I’m thankful to be ending my day with you, eating bacon and drinking chocolate coconut milk. (I get to eat that kind of thing, because I have POTS… at least that’s my story.) That IS my story… at least part of it.
Have a good night. And avoid those landmines.
New page, Disabled and Divorced
PS, Check out the counter for my sister’s wedding at the bottom of the page. Getting close!
Breathe. Don’t pass out. Keep moving forward. One foot in front of the other. Pay no attention to your pain. Focus on your breathing. Focus on your legs not giving out. Don’t fall down! Ok, throwing up would be the worst right now. Here come the shakes… Breath girl! The light? Do we have to do the light? Oh no, there goes your head. I can’t see, I can’t see… This hurts too much. I can’t do this. I have to do it. Okay, let’s do it.
This was this morning in physical therapy. My physical therapist comes by once each week. Some days are good, some days are bad. Today was a great day, so we decided to do something I’ve never done before… at least not for almost 5 years: go outside.
When I go to doctor’s appointments, I’m usually taken out from my bed in a wheelchair. I have a face mask on, ear plugs, a head set, and I keep my head down between my knees to keep my blood pressure from plummeting, so I don’t faint. If I’m in the seated position too long, over with my head down, I have to get out of the chair and lay down on the ground with my knees tucked to regulate my blood pressure, breathing, and head pain. (Laying in an elevator or doctor’s office waiting room hasn’t made me any friends-yet.) When I get to the car, I lay in the backseat under pillows and blankets for arduous the drive.
Today, I wasn’t going anywhere but the porch. It was a warm overcast day, and happened to be very quiet on our road. What better day than this to do an “exposure” to sound and light? I don’t have OCD or an anxiety disorder and I’m not in Cognitive Behavioral Therapy, but desensitizing your body and brain to stressors and pain are very similar in traditional Physical Therapy. My PT uses Cardiac Rehab Therapy and Pain Rehab Therapy with me to get me stronger and moving… and it IS working. My fatigue is lessening, I’m stronger, I can tolerate more sound and light than I used to, I don’t pass out like before, and I’m progressing in general.
But today, there was another sensitivity I didn’t expect to encounter…
I bent over my brand new walker, slowly moving out toward the door for the first time, swapping my eye-mask for dark tinted sunglasses. Because I was pretty much blinded by the daylight, I was trying to maneuver awkwardly out the front door. My brother had joined in with my physical therapist to help me on my pilgrimage. I was so focused on all of the physical aspects written in the first paragraph that it caught me so off guard when my physical therapist wrapped his hand around my waste and grabbed my hand to help me out. That’s the moment I choked back tears. That’s the pain that hurt the worst.
It wasn’t the horrible pain in my head, the ringing in my ears, the screaming sound of birds chirping, or my heart racing from trying to be on my feet for too long, it was the caring touch of another person that reminded me so much of my ex-spouse… that almost took me down.
Maybe that sounds creepy to you, but if you have a condition like CRPS/RSD in which people around you are unsure where and how they can touch you, so much that they decide it’s best not to at all, you understand the touch aspect of this. Or, if you are no longer with your once-significant other, you will understand missing supportive touch, like a pat on the back, or an outreached hand when they notice you need help down a step.
Today was 2 firsts. I went out onto the porch successfully. I knocked out another goal! Wahoo! I turned my low pain day into a triumph. It was also a day I realized how much I miss supportive touch. I really want to find ways to incorporate touch back into my life, however physically painful, so it isn’t this emotionally painful to be without.
“Touch has a memory.”
― John Keats
Today, November 13th is Caregiver Appreciation Day.
November is Caregiver Awareness Month. If you have a chronic illness or disability, you have carers. Even if you are not confined to a bed or home-bound, you are still receiving support from someone whether it be a spouse, parent, family member, friend, professional caregiver, online support, or your physician. Today, make sure your carers know that you appreciate the big and small things they do to make you more at ease physically or emotionally.
If you are a carer and feel overwhelmed at times, please know that you are not alone. Below is a quote from the book, The Mindful Caregiver: Finding Ease in the Caregiving Journey:
“Many caregivers share that they often feel alone, isolated, and unappreciated. Mindfulness can offer renewed hope for finding support and value for your role as a caregiver…It is an approach that everyone can use. It can help slow you down some so you can make the best possible decisions for your care recipient. It also helps bring more balance and ease while navigating the caregiving journey.”
― Nancy L. Kriseman
If you are being cared for by your spouse or vice versa, I highly recommend reading the book, Healing Together:
“In a relationship between two people who may be reeling after a trauma, a commitment means that they are taking an active and involved role in addressing the situation they are facing. It also implies a commitment to each other during the recovery of trauma- an understanding that no matter how rough it gets, the other will be there. You intend to face adversity together, with a strong commitment to each other and the future.” –Healing Together: A Couples Guide to Coping with Trauma and PTSD
If you are supporting someone through a chronic illness or disability, please check out one of the groups on Facebook to find support and to have that crucial outlet for yourself. Caregivers can feel as isolated as the person they are caring for at times, but don’t know who they can talk to. You are not alone, and there are people to share your burdens with.
We have so many events to raise awareness for our different diseases and create unity among people with illness, but we should also raise awareness for the plight of caregivers. You are so beloved to us. You deserve a parade! Thank you for being our silent partners on the journey.
Today we celebrate you.
If I Ask You for More: poem about the caregiver/patient relationship
I’m honored to share this from poet, writer, author Mary Jane Gonzales’s new blog: MyInvisibleLife.net
Once upon a time, in my real life, I had lots and lots of friends. Despite being handicapped, life was full. Even when handicaps grew to the point of disabilities and everything was more of a challenge, there was still an abundance of events to attend and activities to do.
But over the years, an alternate life set in. And, strange as it seems, there were levels leading up to that point. Starting off normal, becoming handicapped, becoming disabled, becoming homebound, then becoming bedbound. Though I’m very grateful this alternate life occurred over time, rather than all at once, the fact remains it takes a lot of adjusting. And, in that journey, you’re very much alone. No-one is walking in your shoes – and, even those walking alongside you, who likewise grieve your loss, cannot relate to what you experience. And, sadly, the not understanding often leads to abandonment. Not that it’s intentional, but we live in a microwave society that expects quick results. They can’t comprehend (or tolerate) unresolved issues. Chronic pain or lingering illness is unfathomable to most; and would be to us if we weren’t living it. And loss of health is not the only reason for them (or us) to retreat.
Other reasons could be depression that accompanies chronic illness, maybe making us less positive, not seeing the glass half full as much as we had before. Or us not calling them as much as before because there’s nothing new or good to report. Unfortunately, that can be translated to them as a loss of interest. And them not calling us anymore feels like rejection or abandonment. So, for me and countless others, the new reality is lacking someone to visit us or someone to call for a favor. Instead, there’s a host of virtual friends who truly understand what you’re going through and may become treasured friends. Yet, the loss of longtime friendships is painful and the loss of visitors is lonely. I know that everyone’s at a different place in life, and some may not be here yet, just as I was not here yet.
But, though it’s taken much time for me to get to this point, I have arrived! Thankfully, I’m very blessed in so many ways. I have my family, my faith and a couple of friends who, though not nearby, love and support me. I keep myself busy with various projects and enjoy life as much as possible considering the circumstance. I can’t deny that an invisible life is a lonely life. Lonely being a relative term, you could be at the beginning stage where you can no longer work and are no longer in the mainstream of life. Or, you could be acclimated to being at home and still be receiving visitors.
Whatever point each of us is at, we need to be able to entertain or occupy ourselves, rather than expecting others to meet that need. So much is learned from chronic illness, with self-discovery being one of them. Though I would not have chosen this life of illness, neither could I have known that good could come from it. Despite the hardship or trauma of disease, in the end, I suspect that most of us have been made better by what we’ve been through.
Find her books here available on BarnesandNoble
I’ve started with a home health aid for the first time after considering it for a while now. Many people have asked me how it has been to have a home health care professional, so I will share a little bit about what the past two weeks with a professional caregiver have been like for me.
Nearly all of my doctors have suggested I hire professional help over the past four years of being bed bound from chronic illness, but both you and your family must be comfortable with that arrangement. Also, with my hypersensitivity to sound, light and worsening pain with speaking and movement, it might not have been conducive for minimizing pain when these problems were at their worst. Now that I can tolerate visitors at times and I am doing better with short, quiet conversations, I was curious to see how I would do with a professional aid. Also, I have needed more help recently, so I am very grateful to have an aid to assist me.
I have scheduled the aid to come in short shifts and she allows me to take lots of breaks, though I still end up sleeping for the rest of the day. I may start making lists for her the day before she comes so I don’t wear myself out or in case I wake up feeling too bad to communicate. I am still getting used to having someone who isn’t a loved one do things for me, but so far she has helped with things that I might not have asked for otherwise.
I was pleasantly surprised that my new caregiver walked into my room on her first day knowing all of my health concerns, special needs and requests. Even though I had been evaluated by a nurse prior to making arrangements, I assumed it would be a bumpy start- it wasn’t. She is certainly a professional! She is so sweet, kind, gentle, and very attentive. I liked her from the moment I saw her, and my family also likes her, which I was very happy to hear.
A professional caregiver can prepare meals, do light housework, laundry, help with bathing, dressing, run errands for you, take you to your doctor appointments, make phone calls on your behalf, or help you with special health needs you have arranged with them. If you are more mobile, they might act as a companion, going different places with you to make sure you are comfortable and have your special health concerns cared for.
Because this is a professional caregiver, I feel I have more independence and I am making more of my own choices again. For anyone who is being cared for by family or a spouse, you understand how important that is for your sense of self. With family members, my chronic illness issues and episodes can be distressing for them at times, and while I am so grateful for their willingness to help me, I hope that having an aid to help will also give them a bit of a break.
On the first day she arrived, she organized my room in a way that would suit me better, and moved a few things around for me (she is as quiet as a mouse). On the second day, she helped me with a sponge bath, put lotion on, and helped me change my clothes. Earlier today, she gave me a bath for the first time, changed my sheets and cleaned up my room. I was very anxious about the bath since that is one of the most difficult things I have to do apart from going the doctor, however she was such a great help. Aside from my usual after-bath fainting spell (which she handled like a pro), we both managed pretty well and got me clean! I have a lot more confidence going forward after today, and I feel she and I can conquer more difficult tasks together. The next time she comes, I’ve arranged for her to ride along with me and my father to my doctor’s appointment so she can see how he transports me from the bed to the car, then from the car into the Dr’s office- just in case she ever needs to take me anywhere.
I have big plans to get much stronger this year, so I’m hoping my new caregiver and I will be doing more and more things together. She is a lovely and compassionate woman, and I look forward to making her into a new friend!