I’ve Decided to Face Forward with a New Outlook
It’s been an interesting couple of months. I have learned, endured, and accepted (I hope) a lot. I am always doing checks and balances with my mental health, working to find joy on difficult days, being grateful for another day, and looking for opportunity amid my adversity.
Following my recent hospital stay, I spent four weeks in a 24-hour rehab facility. It was a wake-up call for me. I’ve been working hard to keep my head right, but I wasn’t doing well at keeping my health right. I was telling myself one of the things that makes me angry when others say it: I can push through if I just …
I’ve been treating myself as if lupus were my fault and I could control it with my Jedi mind powers. But Jedis are a figment of a brilliant writer’s imagination, and my ability to control what was happening with my body was a figment of mine. I was not forthcoming with myself or my healthcare providers because I kept thinking I could push through. I’m just not trying hard enough.
February marks four years battling this disease. I’ve been through ups and downs, heard many optimistic projections, and had my hopes dashed. I believe that doctors have done what they can, and now it is on me. I will go forward with new limitations, a new diagnosis (lupus always brings new issues to the party), and a new sign of my disability.
Columnist Kellie McRae has new assistive devices to help her manage on her own. (Courtesy of Kellie McRae)
I now have a walker and an assortment of other devices to assist me with my activities of daily living. I must face forward and realize I can’t change the course of my disease with sheer will. My ego has to take a seat and allow me to work with my healthcare providers. I have to let others know when I need help.
Just because I am moving more slowly and needing more assistance doesn’t mean I am weak. After seven weeks in the care of others, I want to be independent. Sometimes, that means preserving my energy and accepting help. This is a new form of strength and I am doing my best to embrace it.
It is counterproductive to look back. Even if I were well, I am still aging. Lupus or not, my future likely would require some level of assistance.
Kellie has named her new walker the Butterfly Express. (Courtesy of Kellie McRae)
It was a blow to my ego when the walker was brought into my room. I told the person who delivered it that I had gone from 50 years old to 90 with the swing of a door. I cried. Then I thought about the park across the street from my home. I couldn’t walk there anymore, so I would look at it from my window. With a walker, I can get to the park. And if I use the exercises I learned in physical therapy, I will build strength for other lost activities.
I am facing forward, looking at things in a new way. I am hopeful and happy that instead of admiring it from my living room window, I will sit in the park once again.
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Note: Lupus News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lupus News Today, or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to lupus.
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Comments
Teresa Cavalier
Your positive outlook is refreshing. I alternate between positive and pessimistic attitudes
(I refer to the negative feelings as realistic). But actually I realize if I give into the pain I get weaker. I voice my gratitude for what I have what I can do every day. I make sure I get a minimum of 30 min exercise each day. I am doing my best to eat a healthy low inflammation diet. I agree food is medicine. These things keep me going. Thank you for your inspirational post.
teresa cavalier
What does moderation mean?
Kellie McRae
Not sure where I mentioned doing things in moderation but I do believe in that. I'd say moderation is a little at a time to where you can handle it. For example, for me, I try to work out things that overwhelm me in small chunks. I am working to get both my VA disability and apply for SSDI, it requires me to go through my medical records from when I was in the service and now. The requirements of each is a bit of a pain, I was trying to do it all at once but it was causing me great anxiety so I decided, each morning, I would only work on them for 15 minutes at a time. That has gotten me a lot of notes, I've gone through the records and now have substantial stuff in my notebook to help me move ahead. When I was trying to just push through, it was freaking me out but once I broke it down (started doing things in moderation) I was able to successfully get through. I hope that helps, so with everyone that "moderation" time line will be different, its just another one of those situations where you have to listen to your body and walk away when it becomes too much.
Kellie McRae
Hi Teresa, When people say they are being realistic with regard to things being negative, I ask does that mean that positive outcomes aren't real? I try to keep in mind that it actually takes a bit more effort to try to be positive because the world seems to feed negative but the outcomes of positive, as you have stated are better. Its not easy to pick the later when we see and hear so many bad things but good things are happening I think more frequently. I am working on getting up to 30 minutes of exercise and I'm glad you are realizing that giving in to that pain is not helpful. I will say though, that sometimes we get sad and that's ok, sometimes we need a good cry and even a pity party because what we deal with is a lot. We have no control over what these crazy bodies are doing and trying to stay upbeat at times is just not "realistic" so I say, embrace those times but not for so long that they become your norm. Unfortunately, the battle for our mental health is as tough as our battle for our bodies. Sending you gentle hugs and hoping you have more high energy, low pain days than the opposite.
Natasha B
Such an inspiration to us all. Each new day brings new possibilities. Thanks for sharing your journey. We're all fighting with you.
Love & Light
Natasha
Brenda Donofrio
Kellie, I was touched by your last couple reports. It's hard sometimes to have to deal with limitations, because of our illnesses. Please don't ever give in. Keep fighting!
Kellie McRae
Hi Brenda, I'm definitely doing my best to give it my best effort. Some days are harder than others but I am doing my best to keep my face forward. Thanks for the encouragement.
Christine M M Sanders
My dear sweet blogger Kelly;
I am sending you positive thoughts and a heart of love.
You are a constant source of insight . Your positive persistence is inspiring and motivating. Lupus has a way of surprising us consistently and not always in a way that pleases us.
That being said : you share so much of yourself that I feel I know you. My heart breaks for the changes you are forced to accept.
It has to be said; I am sorry for all you have lost.
All I know is that the ability to "push through" helps me to keep going when I am really tired of going on. I also must be careful not to ignore the symptoms that tell me : it is time to rest or stop the activity I so desperately want to do.
When I am feeling better I have a kind of "amnesia" . I forget I am a Lupi, I forget the recent pain and act "as if" my life is normal. Then Lupus surprises me and I start the process again. attempting to find the new normal.
It is the small things in life that give me the most pleasure:
The spring budding trees, flowers waking up, blossoms that suddenly appear on what we call"surprise lilies(they pop up and bloom overnight without warning AMAZING)
I hope that those of us who care and support you vicariously in some small way ease your life if only momentarily.
Hugs and best wishes,
Chris
Kellie McRae
Hi Chris, my word! You touched me with your words. Thank you so much for your encouragement and sharing with me. These first few months of the year have been quite challenging and knowing that I have those positive vibes coming from those who read my column and follow me on social media really helped me. So much time in the hospital and in rehab can be lonely as well when you are in a strange environment and trying to process the many changes. I am glad that my pushing through helps you to push through as well. Its always good to know that we are not alone, that others "get us" and that helps us to keep going. Thank you again for sharing with me, you make my heart happy.