I live with an autoimmune disease, a circulatory disease, and chronic pain. I am learning to not let them define who I am, but it is hard some days. It is hard and it sucks but maybe it is time to figure out how to live my life sick and try to be happy.
I am a spoonie, never heard of spoonies? A spoonie is someone living with a chronic illness. It mostly refers to physical chronic illnesses.
Spoonie actually refers to a metaphor that allows chronic patients to describe their illness and the challenges they face to another person. It can refer to any person who suffers from a chronic illness. The term “spoonie” originated from The Spoon Theory, a blog post written by Christine Miserandino.
Each day, spoonies have a limited amount of energy and ability. This energy is represented by a handful of spoons. Activities of daily living take away “spoons.” This makes it harder for chronic patients to keep up with daily tasks and responsibilities.
My chronic pain tends to flare at night or after spending too much energy. It is like having a stabbing fairing pain in one area. I will never resent a healthy person’s easy-going attitude. I can’t compare myself, my personal best to anyone else.
I was diagnosed when I was 22 years old, a year after my daughter was born. I did one year of daily medication and was in remission for 17 years. I didn’t take the disease seriously. It was briefly debilitating at times. Small flares here and there. I could and would forget it about it for months and years at a time. I knew flares could happen again but it didn’t run or control my life.
Since April 2017, I have been in a seemingly endless flare. I have good days, sometimes they are even in a row. I pretended that it wasn’t happening, that my UC wasn’t back. I last up until June 19th, when a trip to the ER for pain landed me a 3-day stay and a scope both ways. I can tell you that I am not in an Ulcerative Colitis flare currently, which is a very good thing.
The doctors and I think I also have IBS, along with other symptoms. I am trying a different GI doctor at the beginning of February.
Stress and Comfort
While stress doesn’t cause UC, it makes the symptoms and flares worse for some people. There are things can do to help ease the jitters if stress, such as wear something comfortable and makes me feel good.
Yeah, I am one of those people who wear leggings instead of jeans. Some days the confinement of jeans in the waist area is too much on my bloated stomach. Days when I find it hard to go out in the human world leggings are comfortable and easy.
UC has taken me from being constantly on the go to some days never leaving the couch. Those days are the hardest because I want to be productive but the energy is just not there. My spoons are all spent before I even wake up or get out of bed. I am in conserving energy mode. I am like California and I have rolling blackouts. My energy is not to be trusted or depended on in no way shape or form.
Where am I going?
I feel like my life is slipping away from me. I am too sick to have a job outside the home, hence DIY Squirrel. My panic attacks also keep me from having a job outside the house. I know this is a good thing, but building a business is hard.
Two weeks ago I was sad, defeated, and in a horrible amount of pain. When I get this way it always leads to a panic attack and one leads to another and sometimes I can have 4 or 5 in a day.
I start to feel resentful, “life is not fair”. This is not a helpful or productive attitude and I know it but I can’t help it. Pity Party of one, now seating. I get a few minutes into this party and I start looking for the exit. I can’t keep having the same pity party.
Change my outlook
I am changing my perspective from what my body can’t do to what it can do. I am finding the joy in the little things. I am going to harness hope and gratitude to embrace even on my darkest days. I am not going to forget about God and where I came from. To be committed you have to be thankful. I have to respond to receive God’s blessing for me. I have to position myself for his blessings, I have to be humble.
I am finding joy in my body’s bad days, which is not so easy. I am going to live life graciously. Embracing my good health if I am lucky to have it, even for a day or morning is my hope. If I have setbacks I will look for and embrace my small wins. Shifting my focus to what my body can do instead of dwelling on what it cannot.
Tuesday I am heading to a therapist because on top of everything thing else I suffer from huge debilitating panic attacks. Just trying to find my happy and less painful place in this world.
Have a blessed day, love the ones you are with, and remember we are not guaranteed tomorrow but we are guaranteed coffee today.