As I have started to live on the other side of cytotoxic chemo. I am in my next quarter of NEAD. It is interesting to live your life in 4 month increments. My hair is growing back. I am no longer on steroids so the water weight is gone and my hair is growing back, did I mention that? It must be important to me as I wrote it twice. So life should return to normal. I should be able to get back to the way thing things were. Having lived through the summer months, taking a vacation and getting back to work full time. I realize that thing will never be the way they were. I am now living with a terminal illness. It has changed me. Physically and mentally. There are many more doctor appointment and tests. I have to take medications every day. These meds have thrown me into menopause so I have hot flashes and joint pain. I also have significant muscle spasms and fatigue.
I am very blessed to currently be NEAD. I praise GOD for science and hope that new meds will continue to be introduced and I will have a TON more options and time. The longer I am NEAD the better my long term prognosis. I am totally owning my new normal and trying to see the positive of every three week infusions and not getting so caught up with the consequences and limitations that come with fatigue (see blog Fatigue is my co-pilot ) The issue is I now look normal. In fact, I have been told I look great and rock the faux-hawk quite well. I am glad that I can pull off a short do and that I "look normal." I am far from okay and the battle is hard to mentally come to terms with the new me. I live in my brain trying to tell myself to do more. To be what I was and then I collapse into exhaustion and I get a cold. I rarely get sick. The old me pre-C, rarely got sick. Man, I can't push it like before. I deal with lots of guilt from not doing it all, being super mom, super employee, super friend and super wife. I came across this article introducing the-spoon-theory. This made a ton of sense to me. It helped me to realize that I am not alone. It is okay to not be able to do it all. Even if I look "okay." It also gave me a visual representation to describe my fatigue, my new normal. Everybody understands better with visual, right?
Essentially, the spoon theory is that someone with a chronic illness wakes up in the morning with a set number of spoons and each activity required for the day takes away a spoon. You have to pick and choose how to use the spoons in order to make it through the day without falling apart. Sometimes you can 'borrow' a spoon from the next day but you might have to pay with double spoons or you might end up getting sick. You will ALWAYS want more spoons. As you were once healthy you had infinite supply of spoons. AND the things that you took for granted, for example, taking a shower and making meals cost spoons too. Daily routines cost spoons. EVERYTHING cost a spoon. Some days I can start with 20 spoons. Other days, like when I am fighting a cold I may only have 10.
I have been putting this theory to use. While on vacation. I needed to take carriage rides versus riding my bike or walking with the rest of the crew. Though I understood why I needed to do this and I know it was the best choice so I could enjoy each day; it was lonely. Beautiful and peaceful, yet lonely. Guilt is still there. It is hard to turn it off. Is it that embedded into a women's psyche? Guilt that I can't help more or participate like everyone else. Frustrated that I don't look sick wondering if my friends really 'get' it. And gosh darn it! Why do I care what everybody thinks? I conserve spoons by having an early bedtime. I usually go to bed between 8 and 9. No joke. It is the only way to get up the next day to be my best self and waking up the next morning is always hard. I use to pop right out of bed. Now I kind of roll out and stagger to the shower. My body just hurts. Making choices. Though I say yes more to fun and things that I enjoy AND no more to those things that eat up my time and energy that really don't interest me. I have been needing to say No more than I would like. Some days I have to pick and choose how to use my spoons. Support group meeting, no. I have to sleep so I can be ready for Halloween. Not taking my daughter to a trick or treat event the day before Halloween. It is hard. I still feel like a failure. Wondering if I should push more......... I am thankful for friends that have stepped in to help out. The kids are NOT missing out. I nap on Halloween just so I can pass out candy and have the kids' friends over. The choices I make, the things I have to let go. Having to count spoons sucks. BUT I am here to count the spoons and slowing down allows me to appreciate life more. To be more purposeful and intentional. To choose joy. I get the opportunity for everyday to be a self-care day. I am coming to terms with my new pace.
So if I tell you no, please don't take it personal. If I wait to the last minute to RSVP..... If you see me later looking fine and wonder why I did not do what you wanted...... It is all a juggling act with my spoons. Cue circus music.....I got this.
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