I hope the long holiday weekend brought great food and even better company.
My holiday weekend was spent trying to find a happy balance between working and recovering. I am now two weeks back to work and I feel stronger each and every shift. It is such an amazing feeling to notice a difference in your energy and ability to do more. Last year, the day where I would wake up and go to work with little pain and a little energy seemed like it would never return. I may be one of the few that actually get a little excited to go to work.
Adding work to my recovery has shined great light on a theory that many chronic illness sufferers are familiar with called the "spoon theory," If you have not heard of the spoon theory, you are probably thinking- "spoons? What does that have to do with recovering and chronic illnesses?" The spoon theory is a great way for those suffering from a chronic illness to monitor their activity and try to avoid over-exhausting themselves. Whether you are fighting an illness or recovering from surgery, over-doing it can have serious repercussions on your health. Often times we do not even realize how much energy everyday activities really take. The spoon theory highlights those activities and relates them to the lower amount of energy that those battling a chronic illness or recovering have.
Someone recovering or battling a chronic illness starts each day with specific number of "spoons." On a good day, a spoonie may start their day with a few extra spoons, however, on days where their pain is greater or they are flaring, they may start the day with less spoons. Here are a few daily activities that most healthy individuals do not even think twice about, but for someone with limited spoons, can be extremely daunting and exhausting:
1 Spoon Activities
Getting out of bed
Getting dressed
Making breakfast/ lunch/ dinner
2 Spoon Activities
Putting on makeup/ style hair/ shave
Doing laundry
3 Spoon Activities
Showering
Driving
Walking the dog
Going to a doctor's appointment
4 Spoon Activities
Cleaning house
Socializing
5 Spoon Activities
Going to work
Grocery shopping/ shopping in general
Without even realizing it, someone starting their day with less spoons due to a chronic illness can completely deplete their collection, leaving them tired, in pain, and even hampering their body's ability to heal. Over-doing it can even cut into the next day's spoons- yes, you heard that right. The pain, fatigue, and other effects of over-doing it can carry on to the next day, leaving the spoonie tired before they even get out of bed.
It is truly a fine balance for those battling chronic illnesses or recovering from them. From planning several "recovery days" after a day full of spoon-depleting activities to having to reluctantly back out of plans because you are just too tired.
(I love to wear this spoon necklace to remind myself to be gentle with my healing body).
I have applied the spoon theory to my life since the beginning of my illness last year and have found great comfort in knowing why I am so tired after a "normal" day. But as with any challenging time, it does get better! It will not be overnight. It will not be over the span of a week. But slowly, you begin to notice a little more energy than the day before and that once daunting task is not quite as daunting anymore. When I came home from my first surgery last August, I remember a simple walk down the hallway to the restroom completely exhausting me. It was undoubtedly frustrating at times as I limped down the hallway with a cane in one hand and my mom's hand in the other. But slowly it got better. Slowly that walk down the hallway no longer exhausted all of my spoons for the day. Slowly I started moving around a little more.
But even now, over a year later, I still follow the spoon theory closely, careful not to overdo it. Despite my efforts, though, I find myself overdoing it from time to time. It is hard to slow down when you finally, after so long of being sick, start to feel healthy again. I will never be able to quite describe the feeling in the right words. Instead, all I can say is that I am endlessly, endlessly thankful. Thankful for each beautiful day on this Earth that I am given.
My recovery is progressing very well. I am now almost 8 weeks out from my reversal surgery and my once gaping wounds are now closed and transforming into scars with stories engraved within them. I have learned (for the most part) "safe" foods that agree with my gentle new digestive system and keep a food diary to keep track of foods that do not agree. My diet is still relatively bland, but hey! Food is food. Over time I will be able to slowly introduce new foods into my diet. For now, I am just thankful to be able to even eat.
I am still battling pain from adhesions and nerves waking up, but as with everything else, those too improve each and every day.
One of my biggest concerns throughout the last year and after the removal of my Hickman line several weeks ago has been dehydration. Now, more than ever, I am prone to chronic dehydration without a large intestine to help absorb the water and nutrients that I put into my body. The nature of the j-pouch welcomes chronic dehydration also, meaning that most days I feel comparable to a fish. Water, Gatorade, and Drip Drop Hydration Powder have become staples in my every day routine.
This is all a completely new learning experience for me that can be both challenging and rewarding at times. But even amidst my challenging days, I am steadily improving- and that is all that matters.
Next week brings a follow-up appointment with my primary care doctor for blood work to test my iron, B12, and other important vitamin levels and talk about scheduling a DEXA scan to check my bone density. We do not know the damage that a year of extreme muscle and weight loss as well as biologics, immune suppressants, high doses of oral and IV steroids, and other medications to decrease inflammation in my large intestine did on my body yet. As I become more active in exercising and working, my body has begun to fight back slightly with joint pain and swelling. It is better to be safe than sorry! Additionally, I will be scheduling an appointment with a Gastroenterologist in the state to form a patient-doctor relationship in case I am ever in need of treatment for pouchitis or other complications with my j-pouch (fingers crossed I will never need to go).
I hope everyone is having a wonderful week and keep an eye out for a new blog soon! Stay healthy and never take your health for granted.
"Trust your journey."
- Kristen