Back in December I went through the most recent "health trauma" that ended up bringing a 2+ year "health battle" to a culmination. About a week before Christmas I was diagnosed with yet another, ever exciting, thrill-ride of an incurable illness- affectionately known as Rheumatoid Arthritis. I spent all of December feeling like I was being punished and not able to leave my house because of the pain and swelling and well, the not being able to walk. I started on a course of different drugs to reign in my immune system, reduce the swelling and inflammation and alleviate my pain. It was progressive therapy, slowing modifying my doses to try to find the cocktail that works for me. After about 8 weeks we (my medical team and I) decided that it just wasn't working.
Insert beginning of the new year, fresh starts, and commitments to myself and the world around me. I am a natural caregiver. I LOVE taking care of people and I honestly want to make the wold a better place, this is what drives me in life. For this reason I made myself a promise for the year. It was so much more than a resolution, it was a commitment to be true to myself- fearless authenticity. let's just mull those words over a bit.
- Fearless- without fear; bold or brave; intrepid
- Authenticity- the quality of being authentic; genuineness
- Authentic-(noun) not false or copied; genuine; real
- Authentic- (adjective) representing one's true nature or beliefs; true to oneself
- Authentic- (adjective) entitled to acceptance or belief because of agreement with known facts or experience; reliable; trustworthy
Those are intense words, so much to live up to. As per the usual, I feel like if sharing my story, the messy details that people don't want to talk about, can help just one other person on their journey; it is worth all of the icky vulnerability. This is the only way I have left to make someones world a little bit better.
This is the point where you decide; do I keep reading this; is she going to just complain? Do I check out here and get a few more minutes of puppy videos instead...? Hey, I won't judge. We all make choices, I hope you are happy whichever way you go...
Awesome, you stayed. Here is where the shit gets real. I'm so glad we are in this together.
I'm guessing that the number one reason you stuck in here was because you are dying to know how any person could literally hate naps. I assure you, its possible.
As I mentioned above, I have been on this journey for about 2 years. The majority of my days consist of me going to work and going to bed. I don't have energy for much else. It gets old. As the time progressed I slowly and reluctantly had to give up the things that I love. I am a busy person by nature, I can't sit still; never have. I LOVED that about myself. I have a ton of interests and I love actively pursuing all of them. I never felt overwhelmed or over scheduled; all of these things brought me joy. At first I told myself that I only had to give something up temporarily, that I would get better and things would get back to normal.
When I made the first round of cuts it was with optimism; I would be back at it in no time. I let go of spontaneous date nights, random outings with friends, the occasional late night...Then I realized, I'm still too tired and I'm NOT getting better, what else can I give up in the short term? The next round of cuts was harder. These were things that I hold near and dear to my heart; running & working out. This was hard, I use fitness to help process the challenges in my life, there is no better therapy than pounding out some miles with a kick-ass playlist.
The third round of cuts killed a little piece of my soul. I released things like cleaning my house and building my non-profit. I just kept telling myself that I was no good to anyone if I wasn't working to make myself better. I needed to rest and recuperate; then I could come back better than ever.
My diagnosis in December came with relief in some ways and an overwhelming sense of loss in another. I finally felt validated because there was a name and an identified cause for what is making me feel so awful. With it came the crushing weight of a lifetime of fighting another illness without a cure and the sinking realization that all of the things I have given up to make my health a priority may not come back into my life and if they did; it would never be the same. It also forced me to understand that this is truly the beginning and there will be more that I will have to let go.
I, like millions of others, live my life paycheck to paycheck. It's not something that I want sympathy for or feel bad about. It. just. is. It's a fact. For this reason, one thing that I cannot give up is my job. There are days that it crushes me. I'm not going to lie, the last few months have been unbearable at times. It's getting better now and I see some light at the end of the tunnel there and for the first time in a long time, that light isn't a train. However, regardless of how I personally feel about what I spend 40+ hours a week doing; I don't have another source of income... so, health insurance and a roof over my head have to be driving factors in the decisions I make.
A couple weeks back I was having a discussion with my partner when it suddenly hit me. I've slowly given up everything. All I have left is work and naps. I have no hobbies, I feel isolated from friends and family because I honestly don't have the energy to spend time with them. I go to work and I come home to go to bed. IT. SUCKS. It was with this motivation that I made the decision to start the next wave of treatment. I did my research and weighed the pros and cons and I went in scared.
Last week I received my first IV infusion. Yep, this girl that is terrified of needles sat through 5.5 hours in the hospital; a majority of which I was hooked to an IV. Truth be told; the actual treatment wasn't all that bad. I sat in a heated chair, my nurse was great and I texted and face-booked with some incredible women. The aftermath is still unfolding and it's been a relentless endeavor. I planned for the worst and hoped for the best... I landed comfortably in the middle.
Here's a basic rundown of each day:
Friday- post infusion nap resulted in being in bed for the rest of the day
Saturday- post infusion hang over- I spent almost the entire day asleep and when I wasn't asleep I had a massive headache and wanted to barf. Not pretty. Intense pain radiating from my knee, my hip and my left hand. neat. Seeing pictures of the amazing, brave, bad ass women in my life completing their races brought on alternating waves of motivation to fight back against RA and unexpected and powerful bouts of grief for the life I once had and may never have again. I was a disgusting emotional mess.. snotty and ugly tears for most of the day.
Sunday- I lost my shit from almost 2 solid days of sleeping and felt compelled to accomplish something; anything. I way over did it. Yeah... restraint, not my strongest quality. I'm not proud. My main fuel came from me figuratively waving my middle finger at RA and literally muttering obscenities under my breath telling it that I would NOT let it control my life.
Monday- WOOHOO back to work, can you feel the sarcasm? 12 hour day, not planned. Go directly to bed, do not pass GO- I suppose you can collect your $200- you did work all damn day.
Tuesday- Yep, still in ridiculous amounts of pain. New development- my hair is falling out, like in handfulls; ok, I read that hair loss is a side effect of the drug, it's ok... I can lose my hair. I'm a bad ass warrior woman and bald is beautiful. Wait. What the actual fuck? I have a bald spot in my eyebrow. What fresh hell is this? My eyebrows are falling out! This is NOT ok. This is my face. FUUUUUCK. *insert meltdown in work bathroom while I slowly remember that eyebrows are made of hair* not my finest moment but fearless authenticity....right?
Wednesday- I am tired as shit. Why does my body hurt so much...? ohmygod are they looking at my eyebrows. Lead powerhouse work team that will change the world? almost, we're pretty close. Save the world for one of my crews? you bet your sweet ass I did! Work for 12 hours again? how the hell does this happen? it's like I suddenly time travel and it'ts never in a good way. Home to bed. yippee.
Thursday- (today) the first message I received today:
I love Fellow Flowers and I am a proud member of FFCrew. These women are amazing and I am instantly reduced to tears upon reading this message...yep, it's going to be one of those days. I am drained. Drained means that pretty much everything makes my cry. like for real; everything...Is it Friday yet? Ok, let's just be real here, when does the hurting end? does it end? quick facebook check as I wait to travel between sites reveals that 3 women have sent me messages telling me that I inspire them? Wait, me?? **UGLY tears** lots of them... in a factory. I suppose this is all worth it.
This leads me to the answer to why I hate naps. YOU have been such a trooper to hang in there... I know it got a little dodgy in the middle.
1. I am a perpetually active person that truly loves being active.
2. I have officially given up everything that I can give up in attempts to make my health a priority. The craptastic part is that I have not forgotten what life was like prior to being "sick".
3. When I was a kid, time-out was a punishment. When all you have left is work and time-out you feel like you are constantly being punished.
4. ergo, naps = punishment
As I get myself ready for bed I reflect on everything that I have processed today. WOW. It's been something. I find myself once again in the messy middle of things and I'm just doing the best I can. I know that I will get this figured out. I will find balance. More than anything, I want any person to know that when you are in this position; you are doing great! Getting through the day is a success. You might feel totally overwhelmed and like you are a complete shit show, but remember; we're in this together.
