chronic illness · chronic pain · crps · disability · lyme · mental health · writings

learning the language of letting go.

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I have been oscillating as of late between being ok with where things are at in my life and then all of sudden really not ok. Although I have been sick for a few years, things have taken a sharp detour off the tracks for the past 5 months and I am dealing with some things I haven’t had to deal with before.

I have never lost my mobility before for this long for one.

When I was dealing with my Lyme Disease and would have Herxheimer Reactions I would sometimes lose the ability to walk well for a day or two because my joints were so inflamed. My husband and I would deal with it head on as best we could. He would set me up in the bedroom with multiple heating pads, feed me as well as help me drink water because I couldn’t bend my arms, and assist me so I could get into my infrared sauna . The “herx” would pass in usually 24-48 hours if we did everything right and then I would be back on my feet.

Since February I have once again lost the ability to walk well and sometimes I have lost the ability to walk at all. There’s been some really frustrating periods of crawling to the bathroom and going down the stairs on my butt. thump thump thump I go. I broke down after a few weeks of being bed bound and asked my husband to rent me a wheelchair. My pride became less important than getting to leave the house. As things shifted again at the end of April, I have since asked for a shower chair to help me take longer luxurious showers and a walker per a recommendation of a CRPS specialist who had concerns about me falling when I do try to walk. Now I am finally giving in and buying a wheelchair as the rental one is a transport chair and way too heavy and clunky for everyone who gets to heave it in and out of the car. I am hoping for one that is light and allows me to wheel myself around so I can go where I want when I want.

None of these purchases are things I thought I would be investing in at age 31.

Before all this started I was a runner. It was something I fell in love with later in life and though I wasn’t very fast when I started, it was something I really loved. I loved to run early in the morning when the world was still asleep and I could watch the sun rise above me. I loved to train for races because it challenged me mentally and physically  to find the perfect mix of training to achieve the goal time I wanted. I loved the burn of my quads, hamstrings, and calves as my legs took me mile after mile after mile. When I developed CRPS I had to stop running because the nerve pain was excruciating every time my foot hit the pavement. I tried working out still until I got sick with Lyme and then I pretty much had to give up on running, spinning, and weights. I grieved that loss for quite awhile and still get pangs of longing when I see people out running in my favorite types of weather.

I had to let it go though, maybe just for now. Maybe for forever.

I am now dealing with some bigger things that I may have to let go. Things that I hold so dear that I have lay awake many a night asking the universe to not let them happen. Things that I have latched onto, believing that if I lost them I would no longer be me.

One in particular is my job.

When I first got ill with the Lyme 3 years ago, I immediately had to stop working because it came on so strong and I was in not great shape almost immediately. After I got diagnosed and began my first of many rounds of antibiotics I naively believed that maybe I could start working again. I found a beautiful space and opened my own skincare and makeup business. I’m not going to lie, working while being in a lot of pain was really rough. Some days I had to cancel clients and some days I ashamed to admit that  I had to block myself off for the rest of the week so people couldn’t book with me because of how terrible I felt. Despite feeling awful a lot of the time, I managed to work 2-4 days a week and built a really popular business. My first year open I did 25+ weddings and quickly became one of the first businesses to pop up when you searched for facials where I live.

Work allowed me to feel like I was still a part of the world. At work, people often didn’t know how horrible I felt or how much effort it took to get me there. They just knew I was there smiling and ready to make them feel good about themselves. It gave me the ability to not get stuck in my head about being sick and in pain.

Sometimes though I think I let work become the only way I could feel good about myself. When I couldn’t go in I would beat myself up. When I had to back down from doing multiple weddings on a weekend I felt like a huge failure. My self worth became intricately intertwined with my business.

So when I could no longer work this year, it really broke my heart. In February when things first got rough, I just canceled my clients day by day because at that point I hoped the flare up I was experiencing would pass. By the end of February I got tired of having to reschedule people over and over and over because “that day” of feeling better never came. I blocked my schedule off and hoped for the best. By April I sent a message out to all of my clients explaining that I had to take some time off to “focus on healing”. I changed my voicemail with a heavy heart . Instead of working, I lay in bed day after day watching the cherry tree outside change, a reminder that the world kept changing even though I felt like I was standing still.

And now it’s June.

I really don’t know when I will be back to walking and standing normally. I don’t know when the insane amounts of pain will die down allowing me to drive or go grocery shopping or work on a client. I don’t know when I will be able to do a lot of things that matter to me. My doctors unfortunately don’t know either. It’s hard to keep going “downhill” and have both your pain management dr and neurologist be unsure as to what in the heck is making things continue to get worse.

My room is still sitting there prepared for the client I thought I would have the next day before everything blew up.  The warm yellow walls, the hardwood floors, the pretty quilt I bought on sale when I first opened, the smell of lavender from all the steam towels I made. A buddha hand statue that my mother in law owned that I placed in my room for good luck. All of these things just sitting there gathering dust. Sometimes it makes my heart feel a little less sad to know its waiting for me. But time doesn’t stand still and it can’t just keep sitting there logistically. It doesn’t make sense to put it on hold for months and months and months.

So I may have to let it go.

Another loss I will mourn. Another thing being sick has taken from me. But I find myself not so acutely hurt by the thought of closing my business. There was a time where just the thought would bring tears to my eyes and leave my heart feeling like a branch about to break after a long ice storm. Time has soften the blow. My husband told this to me in the car today in fact, reverberating the words inside my head as he often does. How incredible time is in it’s the ability to allow us to slowly accept the things we didn’t think we could. Each month passing I am trying to be more accepting of what the reality of my body is. I call it my new new body, different from the one I had before I got sick and yet very different from the body I have had for the last few years.

I am trying to be positive and certainly trying to find other things to define myself by. Just because I can no longer work doesn’t mean I don’t have other gifts to share with the world. It doesn’t mean I am lazy. It doesn’t mean I am a failure. It just means I have to dig a little deeper to find a new purpose while still grieving what could have been.

You can do both.

You can do both.

I can do both.

I am slowly learning the language of letting go.

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what are you learning to let go of?

xo,

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7 thoughts on “learning the language of letting go.

  1. You’ve given so much to so many people’s lives. Someday you will be back in action– running with the morning sun and the early birds, perfectly invigorated for the day full of clients ahead of you.

    Thank you for writing and for sharing, Genevieve!

  2. Thank you so much for writing this. I was diagnosed with Lyme this year after being sick for years, and the loss of many things I took for granted has been one of the saddest parts of this whole experience. I found you through IG when someone tagged you in one of my posts. Take care. Sending love.

    1. Hi Esme,
      Thank you so much for checking out my blog. I really enjoy your instagram. Please let me know if you ever need to talk or want to have more Lyme resources. Hope this message finds you well. xo.

  3. Late to this post, but this is just beautifully put. I had to learn to let go of so much. When I had to apply for disability at age 26. When I won my case and realized living on $677 a month was my new life. Realizing that who I was was very different from who I thought I’d be. Over time, I learned to mourn and, yes, let go. Let go of how I thought it should be. Let go of what I wanted to be able to do. Things have changed for me quite a bit, but not for a while. For a while, that was my new reality.

    It was painful. Often, because I’m stubborn and would push too hard, humiliating. But over time I made my peace with how fatigue circumscribed my life. I hope you’ve maintained some of this peace (or at least grim realism) and introspection in this past year.

    1. Letting go and mourning are so hard and so necessary during this journey of having a chronic illness/es. Sometimes I feel like I oscillate from one to the other quickly and that I can bounce from one to the other multiple times a day. It is so humbling. Im glad to hear you have over time found some sort of peace. I know for sure without even knowing you that you are a better person today after all of this has happened. It takes a big heart and a brave soul to apply for disability and it also takes a strong spirit to be so young and have your body “fail” you. Hang in there <3

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