When chronic illness flares up or just even when new medical hurdles arise, it’s crisis mode. Time to bring in the paper plates and disposable silverware. Something so simple and yet so helpful. It’s not time to dig one’s heels in and insist on fine china!
The roles have been reversed lately at my house. This mama who was a caregiver for years, now finds herself being cared for after carpal tunnel surgery. I have not been the most gracious patient and have given up responsibilities kicking and screaming. I’ve been asking myself why. Stubbornness? Pride?
I’ve seen that I can be very, very determined. Or is it pride? I don’t LIKE to ask for help. It might take me twice as long, but I can do it myself. But then I began to see those things I CANNOT do myself. I HATE asking for help. Yep, probably pride. At least my cat puts up with me. That’s because I feed him.
This healing passage reminds me that nobody WANTS to be a burden. Nobody would choose to need help. But just as care-giving is a learned skill, relying is as well. I had to learn to allow others to care for me. Day one, I was determined I could care for myself if I could just figure out how to do things differently. If I could adapt the process, I wouldn’t need to ask for help. Do you know how annoying it is to watch someone in desperate need of help and because of stubbornness, refuse to ask for it? As I was learning to accept help, those around me were learning to provide assistance. There were times I knew they were getting tired of doing the same tasks over and over but they continued to do so out of love for me. They had to be patient with me and I had to be patient with them. Caring for someone and leaving dignity at the same time comes from a sacrificial, PATIENT heart. A compassionate caregiver is invaluable. If you are a care-giver, know that what you do day in and day out matters greatly.
As the patient, I had to learn that allowing others to help me was a blessing to them. It allowed me to conserve my energy when my husband washed my hair, when my daughter put my hair up for me, when my husband cooked a meal as I gave him directions. For times that I was able to adapt my method, it showed me that my brain could re-wire, that my left hand could learn to use a mouse, that I could do dishes by using a sponge instead of my usual dishcloth. There was so much I could still do! I was able to plan meals and shop online! I could pray for others. And my family was capable of so much more than I imagined. Who knew my husband could fold laundry?! I think he actually enjoyed cooking with me!
More than anything, I learned to give myself grace. I am exceptionally hard on myself and it felt good to say, “It’s ok. Back up, Bossy. Be easy on yourself. You are still healing.” I had to lower the bar of perfection. It might not be as clean as I would like it now, but it will do for the time being. I am so grateful to be living in the age of FaceTime. Seeing my family members just lifted my spirits like nothing else. It reminds me that life is more than what I give to others. It is a circle, a dance of give and take, of loving and being loved. As life happens, it gives us a different viewpoint from which to give thanks.
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Lately, I’ve spent a fair amount of time with an individual who has really been struggling with anxiety. I have noticed myself feeling rather irritated with what appears to be ridiculous behavior, and my patience has begun to run thin. I have felt so annoyed on more than one occasion that it took everything within me just to keep my mouth shut. I was praying for God just to help me to be nice.
And then one day, it hit me. This was ME in the past! I closed my eyes and put myself back in time to remember for a moment how anxiety had once crippled me. I was so controlled by fear that I could hardly function. It was controlling me until…
Until what you ask? Until I completely surrendered everything to God. The moment I did that, I experienced tremendous peace. I learned that nothing in this lifetime would separate me from God’s love. Nothing could happen to me or my loved ones that would ever destroy my eternal hope. Romans 8:38-39. And lest you think that my anxiety was miraculously gone forever, let me be the first to say that it still creeps in from time to time and I must deliberately hand it back over to God... AGAIN...and AGAIN...and AGAIN!
I suddenly realized that I had been missing the opportunity to show someone else how to surrender to God amid crippling fear. I felt ashamed that my approach had been one of irritation. Knowing it is never too late, I searched back in my phone at all the bible verses I had bookmarked on fear and anxiety and I started to write them down for this person on note cards. These verses had been a healing balm to my mind; they healed me over time. It was now my responsibility to not keep that to myself but to share it with someone else who needed it. And when I finally did just that, this person was so grateful. It’s going to be a process with this individual because trusting God amid fear takes time to learn and we never arrive at perfection in this lifetime. I know I must check my attitude each day and choose to see people the way Jesus sees me.
What about you? What lesson have you learned that could help someone else? Are you feeling annoyed or are you seeing people through eyes of compassion?
“Search me, O God, and know my heart! Try me and know my thoughts! And see if there be any grievous way in me, and lead me in the way everlasting.” Psalm 139:23-24 ESV.
One of the most useful approaches I have learned for caregiving is the idea of detaching with love. I believe this can apply to even caring for quite young children. It will protect your heart in the long run and help you to cope as a caregiver.
I learned this from a very dear friend who has since passed on and I am so grateful she shared this idea with me, so I pass this onto you, EDS Mamas, in hopes that it will make a lasting, meaningful impact in you. As caregivers, we have thoughts about what our child or loved one should be doing and not doing, everything from medications, to therapies, to school, to activity, and to social interaction. When our loved one chooses a path which is different than what we feel is best for him or her, we feel frustrated. Sometimes the choice our loved one makes will have consequence for us, impacting our time and involvement, or perhaps we believe it will have a negative impact on his or her forward progress. It is hard to know when to give our verbal input, when to express disappointment, when to offer suggestions, and when our help for them is crossing over into enabling poor decisions.
I have seen that when I separate out my emotions and focus not on how I feel, but on what are the goals of my loved one, then I feel at peace. I can become an instrument in assisting this person to attain his goals, not mine. I must accept that my goals for him may not be his goals for himself. He or she may not even have any goals and then I can become that spark of setting goals.
Once I detach with love, it is my responsibility to allow my loved one to accept the consequences of his or her decision. I cannot be an enabler where I try to lighten those consequences. It is those consequences following decisions that will help that individual change, form new goals, and ultimately cope with reality. Learning to assist without crossing over into enabling helps me to create healthy boundaries and ensure I am making time for my own goals and well being. I can make sure I am putting God first in my life (not another person), focusing on what HE wants me to be doing, and not trying to fix somebody else’s situation.
Living with a person who has EDS, I have learned many coping mechanisms because, yes, the whole family is managing, not just the person with the condition. My daughter will often say, “Tomorrow I am going to do this or that.” I’ve learned that what that means is, “Tomorrow I would LIKE to do this or that, but that’s likely not going to happen because when that time comes, I probably won’t feel up to doing that.” You may think that sounds harsh or unloving if you haven’t walked in my shoes, but this is how the language of EDS is translated, my friend. See, my daughter still has desires to accomplish things just like you and me, but to finish those things is another matter. The brain and heart say yes, but the body says no.
This coping mechanism of mine is the result of dealing with disappointment. Think about it…if your friend says she wants to go shopping with you tomorrow, both of you look forward to it. Then, the next morning she calls you and says she can’t make it because she’s not feeling up to going. You feel disappointed and maybe even a bit hurt. It feels like a letdown even though you realize it’s not her fault. You might even take it a bit personally.
My youngest son is a junior in high school now and this lesson is hard for him to process. The other day, he had made plans to go do something with his sister, only to be disappointed the morning of when his sister told him she was not feeling well enough to go. I could sense not only discouragement in his voice, but also some anger as well. I sympathized with him a bit because I, too, have felt these same emotions. I am older and have learned how to not take it personally which helps me to process these emotions in a healthy way. In time, he will become more understanding and realize the chronically ill sometimes don’t have a choice with what they can and can’t do.
I have to say that my daughter became a bit offended by his response. She thought that he ought to know by now that this is how life is for her and that he should have shown more understanding. I think she was a bit surprised when I explained to her how it actually feels to look forward to an event, only to have it cancelled at the last minute. That does not mean there is any blame to assign; it’s just a process to learn how to cope with that which takes years of practice. Even after all these years of living with EDS, we are still learning to communicate our feelings and look at the other person's perspective. So, I can lovingly say to those with EDS…don’t get offended when others sound disappointed when you cancel your plans with them; take it as a compliment that they still just want to spend time with you.
I remember the conversation to this day. I was enjoying some time with a young lady who happens to have some mental challenges. I’ve always been inspired by her as I watch her work and volunteer. This day in particular I learned something valuable from her that I cherish to this day. As we spoke about her daily life, she very strongly replied to one of my questions with, “I don’t want to talk about that.” I remember very clearly how I felt at that moment. It was not that I felt shamed or even reprimanded. It was just a matter-of-fact moment. She had clearly drawn a line in the sand that said this topic was off limits. We changed the subject and simply went on to the next.
I used this same phrase on a friend of mine the other day. A short while later we talked about it and chuckled at its effectiveness. I wish I had learned to use these words years ago when I felt like I had to give an explanation to every question or comment I received about my daughter’s medical status. In the past if a conversation began to wander into territory I really did not want to talk about, I would feel my stress level increase and it would continue to grow as my brain raced, trying to choose appropriate words that would satisfy the other person’s inquisitiveness, yet still keep the conversation within appropriate boundaries where I felt safe. All too often, I would leave feeling like I had shared information that I really did not want to share in the first place.
That is the beauty of this little phrase! I don’t have to worry about all that anymore! I simply pull out these little words and the conversation moves to another (more comfortable) topic for both of us. I’m sure there will be those who think this is not a healthy way to interact and that in some way, it is a type of avoidance behavior. I say, “Phooey!” to these people. In fact, I would much rather respond with a pleasant, simple, non-aggressive phrase than to continue down a destructive path of people pleasing. Next time you are feeling conflicted, try utilizing these simple words. It requires no thinking whatsoever! Your stress level just might thank you.
You have a lot that you are trying to manage, EDS Mama, caring for your child. How is your relationship with your husband holding up under all this stress? Does it feel like one more thing for you to juggle? Does it seem like some days your husband makes things harder for you? Are you on a completely different page than him? Have you considered divorce?
Caring for a child with a chronic illness takes a tremendous toll on a marriage. I felt very alone through many years despite being married and I wondered at times if we would make it through or just be another statistic. This past summer we celebrated twenty-five years of marriage. My husband surprised me by taking me into a jewelry store to choose anything I wanted as a gift for our anniversary. I knew we did not have money to spend so I was shocked that he had extended this gesture! But we were so glad to have made it to this special marker in our marriage and we both just felt so grateful. I looked around the store and he refused to tell me how much I could spend, knowing that I do not like working without parameters. He enjoyed seeing me squirm! After browsing around a bit and trying different things on, the store owner asked if I had a cross necklace, which I did not. As soon as she mentioned it, I knew it was exactly perfect. What better way to symbolize the anchor that held us together not only for twenty-five years, but also through such a rough road that we had traveled for so long. She was a bit disappointed that I wanted the little delicate cross so I could wear it every day close to my heart, not for show, but as a reminder of God holding our marriage together. She chastised us a bit that it was suitable for a Christmas present, but not for a twenty-fifth wedding anniversary. I stuck to my guns though, saying that it was absolutely perfect.
I am amazed that we made it through these rough years with EDS. Humanly, we think sometimes that it would be easier to go our separate ways, but now we can look back by the grace of God and be so thankful that we still have each other. ALL of my praise goes back to God alone because I have been so weak at my effort in my marriage. Some days I had nothing left to put into it. I probably know all the things you and your husband are likely divided about, but I do not want to list them all here. This EDS Mama knows because I have lived it as well. Just be assured, sister, that the reward is great when you stay together. Keep reminding each other that you are a team even when you do not feel like it. I have learned to let my husband cope in ways that are very different than my ways and I have learned that only God (not my husband) can satisfy all the emptiness in my heart and be everything that I need. “Truly He is my rock and my salvation; He is my fortress, I will never be shaken.” Psalm 62:2