I’m Learning New Skills as I Adapt to Change
I was hospitalized the first month of this year, and I hope it’ll be the only time this happens in 2020.
After the hospital, I was sent to a rehabilitation center. It was the first time since my diagnosis that I did rehab at this level. When I was younger, I had chronic pain and went to rehab to get me back to normal, so to speak. This was different.
Lupus had caused me to lose an obscene amount of weight, and I was down to 99 pounds. For a woman of my stature, I found this alarming. I’m almost 5 feet, 8 inches tall, and I used to weigh 170 voluptuous pounds. Seeing my malnourished frame in the mirror was difficult.
Most of what had burned away was muscle. I could hardly walk and would lean on walls, benches, or anything else available to hold myself up. I teased the hospital staff that while I have no middle name, I was considering taking on “Eileen.”
The goal at rehab was to get me functional. To do this, I learned several traditional exercises such as squats, bending to pick up things, and walking up and down stairs.
To pick up things, sometimes I used an object other than my hand. When doing squats, I held onto something, unlike in when I did them in the past. Initially, my ego was bothered by these changes, and I felt much older than 50.
In the past few months, I have faithfully continued these exercises and have added a few more as I’ve gained weight. I’ve also gained a bit more energy and accepted that while I may not be an old woman, I am an older woman, and these types of changes may have been inevitable even if I were healthy.
For someone like me who is super independent, and even more stubborn, this part has been the most challenging. I never want to be seen as weak. I believe that this motivates me to do my exercises, even on days when my body hurts. I tell myself to do what I can as long as it’s something.
During my hospitalization, I got the feeling that while I am loved, I am in this thing alone. I can’t count on anyone else to take care of me. This drives me to push myself every day so that hopefully, I can stay strong and out of the hospital. I know it’s probably not a rational idea when chronic pain and chronic illness are involved, but one can hope.
I never thought my life would take this journey, which didn’t come with a manual to cope. So, I learn new skills.
Now, I must learn how to manage my daily life while living alone, when my body doesn’t want to cooperate. I also must learn to manage the emotions and mental changes that come with this type of lifestyle.
I don’t really complain about things I have no control of. Instead, I do my best to assess and adapt, which isn’t always easy. But I’ve learned that nothing truly worth it is easy.
As I learn new skills for living and coping, I find that even when my body may appear weak, my mind and spirit are strong.
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About the Author
Janice
I want to know how to talk to my daughter so I can be an uplifting spirit in her life.
Kellie McRae
Hi Janice,
I don't have much detail to be able to respond to what you requesting. I can tell you that from my personal perspective, I really just want to be heard. I don't require solutions or even pep talks often but all too often what we are missing is a true listening ear. People tend to listen in anticipation of what you will say or they think they can relate and that really is not helpful. My first word of advice would be to sit down and really hear what she is saying, what she is feeling and you can address those things that she is really feeling or dealing with. Don't be afraid to ask questions, it shows two things, it shows you are listening (or you wouldn't be able to come up with questions) and it shows you really care about what she is dealing with. Nobody wants to feel alone and even though you may not be battling what she is battling, showing her that you are truly there will show her she is never alone and for me, that feeling alone is uplifting. I hope this helps. OH! Also, if the situation is crappy, don't try to convince her that it will get better or things will be ok, we have a chronic illness and reality is, sometimes it is crappy and there is nothing wrong with that, allow her to feel what she feels, you don't have to feed it but don't diminish it either. I really hope this helps, it would help me but like I said, I don't know you or your daughter so it's really hard for me to say you should do this for her, it's just what works for me.
Brenda Donofrio
Kellie, that is really good advice. Good communication is key, when it comes to children no matter their age, or situation. Sometimes it's all they want is a hearing ear, or your support. No matter the issue! So I think it was good advise! I hope it helps her. My daughter and I have been bonding during this time away from schooling and work due to covid-19. We live in NY state and haven't been cleared yet. It's my daughter's senior year, so we have had alot of heart to heart conversations.
Kellie McRae
Thanks Brenda, I think listening is a lost form. I do believe this outbreak has really made many of us go back to our roots so to speak. Reflecting on things that truly matter and spending time with our loved ones. I've seen so many learning basic skills while spending time with their families. The family dinners seem to have returned with home-cooked meals, little kids learning to sew and parents playing board games. This is premium talking and listening time.
Rebecca Williams
Kellie, your post is exactly what I needed to hear today. I have been on a natural protocol for nine months now and 20 days ago was hit with a severe case of vasculitis that sent me back to seeking the best medicine. It can feel so deflating when you’re surrounded by all these awesome lupus warriors Who are plugging away and having great gains naturally. No one ever wants to need medicine, but we do what we have to. So nice to know that there is support here no matter which fork in the road we happen to be on at the moment. Thanks for The encouragement!
Kellie McRae
Hi Rebecca, thanks for stopping over and commenting. It really is it seems a never ending journey to figure out what works for each of us. I think we manage a delicate balancing act of what should be take vs. what can we do naturally. Hopefully at some point, we will figuree out our tipping point and stay away from it. I wonder how many of the warriors who are having great gains went through highs and lows like us before finally finding that delicate balance that helps them go further in between flares.