A conversation between me and my friends about our upcoming plans:
Me, “That’s fine!”
Becky said, “I hate this phrase. Is it really ‘fine’ or like a ‘girl’ that’s fine. ‘I don’t want the last piece of cake’ anyways”.
Me, “Okay. I’m not fine. I feel like garbage.
I hate telling people that.
It’s just how I’ve trained myself to talk to people.
It’s how we train ourselves to answer.
We don’t want to seem burdensome. We don’t want to seem overwhelming.
So we downplay things.
I’m not fine. I do want the ‘last piece of cake’. Lol.
Chandler said, “So let’s rest and reschedule. It’s just us! And the pool isn’t going anywhere.
And we don’t count as ‘people’!”.
I do that so often, the ‘I’m fine’. It’s just easier.
I don’t want to try to give an explanation or listen to well-meaning but hurtful advice. As though, I hadn’t considered hydrating more, taking a certain vitamin, or trying a recommended oil. Because those well-meaning suggestions will not heal my broken and malfunctioning body.
I am a Spoonie. So my everyday living can be challenging.
I’m still working to figure it all out. But I am currently diagnosed with Lupus, Fibromyalgia, Chronic pancreatitis, and potentially other autoimmune disorders, that cause varying symptoms to include chronic, daily, pain, and fatigue.
Spoonies live by Christine Miserandino’s “Spoon Theory.”
It surmises how people with chronic illnesses measure their daily energy. Normal people have an endless number of spoons to use throughout the day. Spoonies have a limited amount.
Some days a normal activity will count as one spoon. Other days, the same activity will take two or three spoons. I never know what the day will bring or how many spoons I will wake up with.
Everything in my life is planned meticulously. I plan things for the day, week, month, and even for the year.
As I set my priorities, at the top of that list, is my family. This is to hopefully avoid running out of spoons.
My ideas and plans are always carefully calculated. There are so many little things I have to consider such as, chronic dehydration and photosensitivity, which are symptoms of Lupus and side effects from my medications.
I can only be in the sun for about twenty-thirty minutes before I begin to feel ill. So I plan!
I make sure to bring plenty of water, that there is shade, or that I will be able to take breaks indoors.
The rest of my day depends on how I feel after getting through the first part of my day. Most days, I need to take a nap. It is a necessity to be able to push through until the end of the day.
That’s how I live my life. Living from one day to the next, or one flare-up to the next.
I have never been a ‘Super Mom’. My kids have only ever known me sick.
I have been sick since giving birth to my oldest child, almost twelve years ago. When they were younger they didn’t understand this life.
Why I was gone, admitted into the hospital, or too sick to do anything. Now that my sons are older, they are more aware of my illness. I’m either in pain and down for the day or feeling well and able to follow through with our plans.
On my worst days, I teach and parent from the couch.
Living this kind of life teaches valuable lessons, not just for my boys, but for me and my husband as well. Being present for every moment.
It makes the time we do have together all the more priceless. My boys have learned how important it is to be independent, how to care for others, and how to ask for help. Because no matter how independent they are, if they ever need me, I am right around the corner.
We can sit together on the couch and figure it out together.
As I have parented from the couch and hospital room off and on for 11 years, I have sometimes felt like less of a parent.
My husband, thankfully, has been amazing throughout all of this. Because the thing about chronic illness is, it isn’t just about you! It affects everyone around you.
I feel blessed to be married to a husband who works full-time and then does more than his fair share of parenting and chores. But he is human and it weighs on him.
It can sometimes get in the way of our relationship. And having to constantly worry about everything leads to “compassion fatigue,” where a caretaker can feel burned out.
This made me want to work even harder to feel better!!
It forced me to be proactive about my health and to better advocate for myself. Even with being proactive, there is a funny thing about chronic illness and chronic pain; it always comes back.
It is hard not to focus on what you know may be coming but I really try not to.
It’s easier when you surround yourself with other Spoonies, people who just ‘get it’. They understand the last-minute schedule change. Don’t get upset about the multiple cancellations. Volunteer to pitch in so that you can have a break. Everyone needs a support system they can count on and that just ‘gets them’.
I focus on my good days. And they come somewhat easier now that I am being proactive and have a plan!
Moments spent in the sun on hiking trails.
In the kitchen baking and making meals together.
Laughing as we compete to win at a board game.
Snuggling up on the couch together watching movies or reading together.
And so sometimes I smile and say: “That’s fine.” “I’m fine.” “Let’s do it.” “It’s okay.”
Because although there are still aches and pains, I am present. I am present with my kids and husband. I’m present with friends.
I’m present while I volunteer and give back to our community. And now I am present while as I begin my journey in writing.
I will never give up. I will never stop trying. Because my chronic illnesses did change my life but I am trying my hardest to not allow them to define how I choose to live it.