chronic illness · chronic pain · crps · disability · lyme

what if you can’t go back: musings on chronic illness and identity

cantgobackbig

 

I have been thinking a lot about identity and who we all become after chronic illness and pain has changed our whole existence. It’s been on my mind a good deal these past few weeks. As always, I began to write about this if only to sort out my own thoughts. Ironically enough two poignant blogs (here and here) that I enjoy reading also touched upon about this very issue.

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When I first got sick with Lyme but didn’t know what the hell was going on, I believed that this would pass and I would go back to “who I was”.  I was sure that whatever insane reaction I had had from the cortisone injection in my back would somehow get figured out and then I would be better. I was convinced my left foot hurting was just a running injury or part of my back problems. Every night I lay my head against my pillow and asked whoever could hear me to please please please just let me go back.

Please let me go back to my healthy body, the body I existed in for 28 years.

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photo by Purple Fern Photography. A few months before I developed CRPS and a year before the Lyme took over.

Just let me be her once more.

That desire for my old body and old identity stayed with me for the years that followed. I cried many tears wishing for some shift or change, some way back to who I was before. I longed for the days where I only lay in bed at night or to take a nap. The days where I never felt nauseous from drinking water, never knew the bright burst of nerve pain from just placing my feet on the floor, and never struggled with putting on clothes because my joints hurt too much.

Before the CRPS. Before the Lyme. Before the chronic nausea.

Surely there had to be a way for me to feel EXACTLY as I had before. In the early stages on “being sick” I held on to that belief and felt certain this was the only way I would be happy. I would accept nothing less than being 100% better and running, working full-time, and doing whatever I pleased whenever I wanted. This was the reality I dreamed of and one that kept me living day after day. Surely I would get fixed and then I could be HER again.

Time moved on. A year passed and then a few more.

I slowly adjusted to being sick that first year. It no longer was a new reality but the one that had been happening for many many days. Feeling like crap from the moment I woke up was no longer strange but a given. Our lives shifted and my husband and I built a new life dictated by how badly I felt each day.

We accepted that some days I wouldn’t leave the house and some days I would. My nausea dictated our menu and Sean became accustomed to me not eating dinner with him. Often my nausea would drive me into our bedroom so the smell of food didn’t make me throw up. Dr appointments peppered our weeks. Sometimes I needed someone to drive me because I was in too much pain and sometimes I could drive myself. There was never any consistency besides the fact that I never ever felt 100% well and usually 60% at very very best.

I did my best to keep working, holding tightly to the belief that this ability allowed me some sense of normalcy, of occupying the faint reminder of who I was before. It was a multi-layered decision and with it came both good and bad. I only was able to work a few days a week but working often meant my pain got a lot worse. By Saturday afternoon (which in the spa world is typically our busiest day) I was completely spent. I would cry on my way home and crumble into bed. Sunday and Monday were always my rest days and each week I would just lay there and lay there and lay there. I prayed come Tuesday I would be able to rise up and go back to work, beginning the constant cycle of pushing myself too hard and then paying the price.

Work gave me a purpose and kept me from completely being shut off from the world but looking back I am not sure if the added stress and physical exertion exacerbated my illnesses.

Being an esthetician and makeup artist is surprisingly physical work. You stand for long periods of time doing makeup and waxing and even though you are sitting doing a facial, your arms are always moving and there’s a lot of getting up to grab products and massage feet and hands.

vieveatwork
photo by R. Gonzalez Photography

Pain meds kept me going but they were a quick fix. When they wore off I was right back where I started. To make things more complicated, I also wrestled with the side effects of the many medications I was on to treat my Lyme and Bartonella.  Lyme treatment means feeling way worse before you are better, this is called a Herxheimer reaction. Sometimes it would my joint pain would flare up so much that I would lose the ability to walk for a few days relying on Sean to feed me, help me drink water, and dress me after holding me up in the shower.

Looking back, I have no idea how I kept going.

How I stood doing 8 makeup clients back to back or how I worked from 10-5 with a few minutes to spare, shoveling a cliff bar in my mouth and praying it wouldn’t make me throw up. I cried a lot at night when the pain was at it’s peak from a long day at work. Sean and I sometimes had to debate whether an ER visit would be worth it. Some days I worked too much and paid for it. Some days herxs kept me from working days at a time.

My business was new and I was desperate to succeed but people told me again and again to slow down. I didn’t know how because I was so convinced working was my only tether to the outside world. I eventually I ran myself down so much that I had to take a 3 month break Dec 2013-March 2014 after doing a series of aggressive Hyperbaric Oxygen Treatments which somehow set off horrible muscular pain in my hands so extreme I couldn’t grip my tweezers.

Sean became resentful of my job because I put work above all else and my days off were all spent in bed or at the drs. We rarely went out to dinner. When we did we often had to leave early because eating had made me sick to my stomach. People stopped inviting us to get togethers. It was a difficult time in our brand new marriage.

Then things shifted again  and we slowly adjusted to my CRPS taking center stage and with that, I shifted into becoming a 31 year old disabled woman complete with her own wheelchair and shower chair. It is our reality and one that over time we have figured out, though not without some growing pains.

 For most of 2015, I struggled with the idea that maybe I wouldn’t get better. Quite a bit to be honest.

I began my “every day in bed all day” starting in February when my CRPS went moderate to severe overnight. I couldn’t walk at all, couldn’t ever wear shoes. Then over the month of May the CRPS spread up my leg to my knee and then into my right pinky toe and bottom of my right foot. It would spread again up to my left hip a few days before Thanksgiving.

I watched my nerve conduction studies and brain scans get worse and worse. Though my brain damage is mild (thank you universe) it was CRUSHING to hear that the abnormal perfusion had spread to both frontal lobes. It was equally crushing to hear my small and large fiber nerves had worsened in my right foot and almost matched my left foot in terms of severity and that I had nerve damage in my hands.

Bad news about my body was constant.

One day I looked at my Mom and said “Im not sure I am going to get better. How do I live my life in this wheelchair Mom? How in the world do I keep living this way?”

“How do I live a life in this much pain?”

She came over and held me in my wheelchair while we both cried.

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I realized that I could never go back to who I was before becoming sick.

Getting ketamine treatments and having some occasional relief has pushed me out of living in the belief that I would never get better and move into this place of “maybe it is possible“. That being said, I have realized and made peace that I will never be who I was at 28.

Anything we go through in life changes us.

New jobs, falling in love, having a child, losing someone we care about. Illness. Divorce. Death. All of it molds us and we shift. We shift and shift and shift as our lives move through good and bad periods of time. We are who we are at our core but life pushes us in new directions and we flow through each change.

Even if my pain goes away, my nausea goes away, and I walk around like a normal person, I will NEVER be the Genevieve that existed before all of this. I have experienced too much to reside again in a place of ignorance about chronic illness and disability. Just like my struggles with mental health issues, I am forever changed.

I will never be able to take walking for granted, never assume that my legs will carry me anywhere I want. I will never forget what its like to literally not be able to eat even though I am starving. I will get in the driver’s seat of a car and remember how I couldn’t drive for almost 2 years. I will never forget that a body can fail you at any moment. I will be out in a store and be reminded of when I couldn’t leave my house for 16 days straight.

Yes, these memories will soften and move backwards in my brain but I know that at some random time or place, I will be reminded of this period of my life.

It’s strange to think of who I might be when and if I feel better. What will I achieve? What will define me then, when illness and pain are no longer at the forefront of my existence? I fight to not be defined as being JUST a sick person but it certainly makes up a portion of Genevieve.

How can it not when how much pain I am in and how nauseous I am dictates anything I do from something minute like taking a shower to things like working a job or driving for 30 minutes.

I will also never be who I was because for the rest of my life I will be at risk of this happening again. Lyme can come out of remission and so can CRPS. I will never be cured of those 2 illnesses.

I will live a life knowing that it could all go away and I will be back where I am in some shape or form.

It’s scary but it’s the reality. I am lucky to even have remission as an option as some people don’t. A friend of my fathers has MS and her life will never ever be the same. This is just how life is sometimes.

***

Yesterday at PT while walking up and down the pool, I asked my physical therapist if she thought I would run again one day. She sat there for a few seconds quiet and then said “Physically yes I believe one day in time with a lot of work you would be strong enough to do it. The question is it worth it given your history of getting injured. I think it would be better to find another way to do cardio that still fulfills you.” So today I have finally given up on running, after carrying that hope in my heart for several years.

I don’t know who I will be when my pain finally subsides and I am up and walking. I see my mother who went through two grueling surgeries to repair her Achilles tendon, a woman who had to relearn to walk too. It was heartbreaking to see her walk with a walker back then. I know my mom still deals with nerve pain still to this day, 10 years after the initial injury. Her left leg is still atrophied many years later. That being said, she has flourished. She works out 5 days a week but doing low impact exercise so as not to aggravate her injury. She is the most fit she has been in her life. She told me today when we talked about this blog entry that she is a better person for what she went through.

I know this is true for me as well. Maybe I will one day be 100% better. Maybe I will be at 75% and my feet will hurt some days after a long day. Maybe I will always be nauseous when I eat certain foods that aren’t good for my Gastroparesis.

Maybe maybe maybe.

The only truth I know for certain is that I will never be who I was before chronic illness and pain changed my universe. We can’t go back to who we were when we were healthy but that doesn’t negate that who we will become won’t be just as worthy as who we were before. I look forward to seeing who I become if and when I finally feel better.

**an abbreviated version of this can be found on The Mighty.

xogen

 

14 thoughts on “what if you can’t go back: musings on chronic illness and identity

  1. And again your words have brought me to tears. It resonates with me in so many ways. Although I don’t have a former healthy self to look back on, I do wonder with some trepidation who I would be if I were to truly “get better.” Thanks for the nudge to look at that possible future day with hope and anticipation instead of anxiety.

    The bit about running really struck a chord too. I’ve had to let go of things too and it never gets easier. I hope you find something beautiful and powerful and strong to do that doesn’t put you at risk of injury. Thanks again for being open with your journey, it makes me feel so much less alone.

    1. Gosh thank you for reading and Im very excited to continue to read your writing. You are an incredible writer. I always smile whenever I see you post a photo, Im very grateful Jewel could help us connect. Your life very much resonates with me on a number of levels. Sending you hugs and fist bumps <3

  2. Wow, what an insightful and relatable post. I can completely empathise with all you say and can see many similarities between your experience and what I have gone through too. I too held onto work because I felt like it was the only thing that kept me holding on to a normal life. I felt like slowing down was giving in. I can see with hindsight that it was flawed thinking because I didn’t have much of a life; I worked and then anytime spent out with work I was wrecked!

    It’s hard learning to let go of so many aspects of ourselves. I’m not quite there will accepting I won’t get back to the job I had to leave behind. I think your physio is very wise– even if we get to the point of being able to do something, is it wise to put ourselves in a position that previously made us sick? That’s kind of how I feel about my work.

    You are right when you say we will never be the same person, even if we fully heal. I sounds cliche but I know I am better person for what I have went through in some ways. I have such a different perspective on life now. I just hold onto the hold that whatever life has in store, I’ll find a purpose that will be just as fulfilling.

    1. The letting go is so painful and hard and humbling. Its definitely a transformative process. Im sure you are a better person going through the trials and tribulations that you have. Chronic illness comes with so many awful things but the longer I am sick, the more blessings I see. You have to squint and look for them but they are there. Hope today finds you feeling low pain and that you can do something nice for yourself!!

  3. I know the feeling. I started collapsing in college. Fast forward eight years and I have POTS, seizures, MCAS, and hypothyroidism. I’m never going to be all better again. I miss the person I used to be. The one who would leap on stage at a moment’s notice, who’d run all over the neighborhood and climb trees, who always had the energy to do a silly dance or burst into song, the one who never had brain fog make her look stupid. I feel like a shadow of myself.

  4. It’s a great subject. For me I grew up with some strange things that hit straight from birth on and my family just over looked them because my parents weren’t wanting a 3rd child. They were getting a divorce and surprise it’s a girl. I keep having some healing problems and I got so sick that at age 6 I was in diapers and unable to eat, didn’t stop my folks from vacationing out in the woods for two weeks. I was totally unable eat and keep food down for over a month. No I was never put in the hospital. I finally got well. I got sick againe at 12, 15, 20. I made it through my first pregnancy , but my second was. I passed out, blacked out, had to pull over to lay down and wait till it was safe to drive! I also gave birth to twins. I had drop attacks, pain so bad I had to craw I couldn’t get up. Migraines had also started. Things settled down I went to work. When my girls were about 2, I got hurt a they found a hernia and a tumor. After surgery I had problems with my leg and they sent me to a neurogist and his first concern was my blood presserure was way to low and I was having signs of problems with it. My other doctor was not concerned and I didn’t know much about low blood pressure. Everybody said it was good? Now I know better and I live with POTS. It was a couple years and I got hit and it was bad, they removed my Gaul bladder but it took a lot out of me and I was a slow heal. A couple years I got another hernia. Same place. Hard time healing againe. Then in 2000, I just started going down under lying lupus is the first thing they said, then Sjogrens, then my MRI showed I had a Syringomyielia and my Syringo from my C-spine to the end of my T. And I went to Cleveland clinic and found out that low blood pressure was a life long disease, called POT’S. And it took me down like a pro! I have had to fight back ever day to try to even have a life. My Autonomic Nervous System is breaking down. I am heat/cold intorlerant , Fatigue, pain, and so much more I fight with. Everyday I try my best to do my best. That’s all I can do. Two steps forward three steps back.

  5. I absolutely loved your post. Mirrors my life perfectly except for changing a couple conditions. Your writing really touched me. Looking forward to more in my emails!

    1. Im glad you can relate even though it makes me so sad that so many others experience the multi-layer complexities of chronic illness. Sending you my best.

  6. Hi Genevieve,
    I read your post on The Mighty and followed it here. I’ve had Lyme for 18 years and identify with everything you’ve written here. I think a lot about chronic illness and identity, too. It’s informed my work, as well. I’m a PhD student who studies illness narratives written by chronically ill teens. (And yes, doing a PhD with Lyme is… I don’t even have the words). ‘

    I don’t post often, but my academic blog is sickscholar.com.

    1. Hi Leslie, thanks so much for popping over to check my blog out. What you are studying sounds facisnating. I can’t imagine trying to do a PhD while being sick. I tip my hat to you! I’ll be checking your blog out 🙂

  7. It was by complete random chance that I stumbled upon your blog today, but I am so glad that I did. I too became chronically ill at around 28 with Autoimmune disease (R.A and Lupus) which has completely changed my life. Thought I was not a runner, I feel my experience mirrors yours: my young family and I (husband and our 8 year old son) spend the past five years living in a caravan travelling (and working) our way around Australia. Every day was defined by sunrise beach walks, 10+ kilometre bush walks and climbs and hikes and kayak paddling. Our entire life was an adventure and every moment of it was physical – rough terrain, hard physical work, extreme climates etc. Until I became sick… I feel as though I have lost my entire identity to this illness. I turn 30 in less than a month and I walk like a 90 year old. I am in the “severe” disease category, I have never responded to the harsh medications (7 months on a chemo drug and then a few months on another drug), I have visible joint destruction and deformities in my hands but every joint in my body is afflicted. I use a shower chair because I cannot stand for long, most days – though there is the occasional good day where I can go for a small walk with my family – I am a shadow of my previous self. Like you, I kept thinking about “when I go back to normal” for the past almost 2 years of being sick – but “normal” keeps evading my grasp. I am trying desperately to be ok with not getting to be normal again – but even that is hard when its NOT just a matter of “not going back to normal” its also a matter of “progressively getting worse”. I have been through brief periods of empowerment and hops when I have started a new med and expected the best but at the moment I find myself stuck in a mostly dark place. I know things will be ok again though, I know myself and the mental strength i have and the things i have already been through that have failed to break me, so i have hope. I dont have any words of wisdom or anything to offer – i just wanted to tell you that I empathise with you and I found comfort in your words and your experience and I truly hope the best for you.

    1. Thank you so much for reading and commenting! I am SO sorry that you are also chronically ill and having to deal with numerous issues that stem from being sick. It’s such a hard road that we all travel. Thanks again for sharing your experience and empathy. I wish the best for you as well! Ill be checking out your blog!

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