As I wake up in my apartment in the city, I can’t help but think about this day 11 years ago. The day I woke up with a headache that didn’t go away for 7 years. The day they, unbeknownst to me, would change the trajectory of my life—for better or worse.
11 years living with chronic Lyme disease is a weird thing for me to wrap my head around. It’s taken me until this morning to write this because I couldn’t find the words and, honestly, I still really don’t.
While I’ll always have Lyme, I don’t live my life in the constant fear, depression and agony that so much of the last 11 years has been. Now, I’d say most of my issues are not the active Lyme and other tick-borne infection themselves but the after effects the infections (and years on hard meds) left on my body. That’s not to say I don’t have my bad days (or weeks) and have flare ups. In fact, I think that’s why this was so hard to write because I’ve been going through a bad flare for the last few weeks.
The difference now is, I kind of know what I’m doing. I know what to eat and what not to eat to help me. I’ve been gluten free for the last decade (insane!) and I’m still sugar free but I do indulge every once in a while. This is a big step for me too because two years ago, if I had anything that wasn’t in my diet I would have a full panic attack and think I was going to end up where I was 6 years ago—paralyzed, life on pause with no hope. I know the importance of balancing your hormones—especially as a woman in reproductive years—and the absolute havoc this can have on your body.
I know how to detox which, if you remember from previous posts, is one of the key things I believe has got me where I am today. For years we knew I had MTHFR (the mother fucker gene as we like to refer to it in my house) but I didn’t fully understand what that meant. I later learned, among other issues, it can make detoxing very hard for my body. You won’t find me going a week without either going in the sauna or taking multiple detox baths—something I have been doing for years now.
I can feel when I need to detox because I know my body so well (it’s my greatest super power). I know that when I eat sugar my knees will swell first then I will breakout on my chin. I know when I start to get little bumps on the backs of my hands or tops of my feet that I am toxic and need to detox stat. I know that I sometimes need to sit in a dark room and rest my eyes or else I won’t be able to function. Most importantly, I know taking care of my mental health is just as (if not more) important than the physical health.
This year I started with a new therapist who specializes in Internal Family Systems therapy and we have been using that to address some of the trauma I have been through over the last 11 years. Now, I’ve been in therapy off and on probably for 8 years but I made a deal with myself when I started with this new therapist and that was to be totally and completely honesty. In my first three sessions we talked about things I never told any of the previous therapists, heck, I barely admitted them to myself, and it has been so healing to work through these things. I still have a lot of things to work though but I did cry last week (for the first time in a year) and that’s progress for me.
However, one thing I have been struggling to work through this last year is that my body recovers differently than others, and that’s okay. In October of 2022, I had a hysterectomy. They took everything but my ovaries—my uterus, fallopian tubes and cervix. The immediate recovery from that was horrendous because I broke out in an allergic reaction across my entire torso and some of the incisions got infected as a result.
If you know me, you know the immense fear I have when I have to take antibiotics or steroids and after my surgery, I had to take both. At that point I was so desperate to stop the itching it didn’t phase me like it normally does and after I finished my bout of them, I didn’t backslide like I previously had with them. It felt good to see that my body is healed enough to the point that antibiotics don’t send me into a herx hell.
While the antibiotics didn’t send me backwards, my recovery has still been slow. No, I take that back, my recovery hasn’t been slow per-say, it’s just been a lot of three steps forward one step back. It took me probably 3-4 months post op to start lifting weights again and not feel pain. I also was able to start running again which is huge since even before my surgery I couldn’t run due to the endometriosis pain and bloating. Yet, I struggle the most with basic things like sitting. Sitting in an upright position without being in pain was the hardest thing to overcome—and I still have issues with it 6 months post op. It’s getting better but one thing can set me off—like stress—and my pain there flares and I can’t do much but lay horizontal for a few days and let it subside. While it’s getting better and the flares don’t last as long, I still get frustrated that this is my life.
I get frustrated that I have to continue to miss out on things because my body isn’t like others my age. I get frustrated that I have to pay out of pocket for all of my treatments just to stay functioning. I get frustrated that doctors still don’t believe me or have the answers when I ask. I get frustrated that my life will never not be impacted by my illness.
Yet, if I pause and think about Cassidy from 2 years ago, heck even 11 years ago, I wouldn’t believe where I am today. Once I got my Lyme diagnosis, I never thought it would be possible for me to have a “normal” life. I never thought I’d be living in a city, about to move into my own apartment, with a job that helps people, and friends that are family, playing recreational sports and happy. But, here I am. 11 years of uphill battles. I don’t know if I’m at the top yet, but I do know, I’m closer than ever before and the view from here ain’t too shabby.
Oh yeah, Happy Lyme Disease Awareness Month!
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