Tonight’s post is different than my others.
I may regret putting this out there later, but right now, I feel as though I need to get it off my chest. And I promised to be real and share my story and struggles.
This is part of it.
Normally, when I feel like this or have exceptionally hard days, I stay away from blogging because I know that eventually the feeling will pass and I may think differently about the situation later. Or that “tomorrow will be better.” And I also know that reading a giant complain-fest of negativity is not helpful for readers.
But this time is different. I feel very much affected by what happened to me today.
Today was supposed to be great. It was going to be the start of a new turning point in my Lyme journey. I could feel it.
Last week, I started to finally feel like I was bouncing back from my most recent cavitation surgery. I started to get some of my strength and energy back and I felt positive and optimistic about the future.
I got my very first nutritional IV (Meyer’s cocktail) to help boost my immune system and post-op healing. And while it promptly wiped me out (I crashed as soon as I got home and slept for hours), I started feeling slightly better in the following days.
Pictured: Me trying not to be a wimp about the needle in my arm, attempting to distract myself by watching movies on the Ipad and eating a cheat treat – “Paleo granola.” It didn’t work. I cried. (I know, it’s just an IV. But I’ve always have burning pain in my veins and I’ve had HORRIBLE IV mishaps when I’ve been hospitalized… so getting IV’s are sort of traumatic for me. Okay, very traumatic. The mere thought usually makes me want to throw up. Plus I suspect I have nerve damage from when an ER nurse incorrectly put an automated blood pressure cuff over an IV site and left the room, while it failed to stop compressing and my dad had to rip it off me.)
For the first time in my life, I started to feel like I’m making actual progress in getting healthier. It’s painfully slow and happens in short spurts, but I notice the small differences. Like:
- Not needing as much sleep
- Feeling like I can get out of bed immediately some days, instead of waking up stiff, weak, dizzy and in pain
- Having more endurance
- Not having as much “painsomnia”
- Experiencing my old personality again – naturally being more silly and lighthearted and goofy
- Feeling a little bit more like myself!
But although I was feeling better after the nutritional IV, the “danger zone” was approaching. This is the 4-5 days, every month, when the full moon and my period occur – and all hell breaks loose. My Lyme symptoms and my pain flare up dramatically… and mentally, I crumble.
I do a pretty good job keeping my shit together, plastering a smile on my face, and thinking positively the other 80% of each month, but when my period and full moon happen simultaneously (as they always do)… I tend to loose my shit.
Lyme – 1. Lindsey – 0.
Lymies – you know what I’m talking about. Non-lymies – it’s a real thing. Google it. No one’s quite sure why it happens, but during your menstrual cycle and during the full moon, the symptoms of Lyme, coinfections and parasites etc. increase dramatically. And if your period and the full moon coincide, like mine always do, its a double whammy.
But I was optimistic that, for the first time in over a year, I would get through the danger zone unscathed. About a month ago, I saw a new functional medicine practitioner and one of the first things I addressed with her was my four week, cyclical decline. I asked her to test all my hormones (I have since done a saliva test) and to help alleviate some of the issues I have during that time of the month, she gave me St. John’s Wort, Chaste Tree (a progesterone mimicking herb) and herbal supplements for pain.
(So now instead of having about 47 pills/liquids to take each day I had 53. Awesome.)
Before, I just tried to mentally prepare and then muscle through the danger zone. Which – let’s be honest – never worked. But since seeing my new doctor, for the first time, I was armed and prepared with some tools that could help. AND – this time, all the infections in my jaw had been cleaned out. I was hopeful that since a big source of my toxic load had been removed from my body, my bad days wouldn’t be so bad.
This month, my parents had a business trip that perfectly coincided with my danger zone. At first they weren’t going to go, knowing how bad things can get at this time. But since I was doing better, they felt comfortable going as long as I was with someone instead of being alone at the house. (They won’t say the word babysitter – but it sure feels like it sometimes. Whatever, I’ll take a babysitter as long as I get to choose who.)
So it was decided that last Wednesday, after my physical therapy appointment and acupuncture session, I would drive to stay with my one of my best friends and biggest supporters through this whole Lyme nightmare.
I cancelled the rest of my medical appointments for the week, packed all my supplements and pills into a large bucket, stuffed a duffle bag full of clothes, threw some Pete’s Paleo meals and other Lyme friendly food into a insulated bag, and packed up my Biomat into a suitcase.
What happened in a nutshell:
- The full moon and my period hit the first night I was there, but I was determined to have a good time. I had horrible pain at first, but mentally I was doing quite well.
- I was able to do more in those four days than I had done in the last month!! It was almost like I was just experiencing a normal period, not a Lyme/Full moon period. I had forgotten what it felt like to have my period and still be okay. MAJOR WIN!
- Because this person is going through a stressful time due to experiencing a few life changes and working long hours, I spent the entire four days doing anything and everything in my power to help make things easier on them (including cleaning the place, house chores, laundry, errands, purchasing things needed, letting the person sleep when they needed, organizing bills and receipts, helping grocery shop and cook and prepare lunches for the upcoming week etc).
- Basically, I put my life on hold for four days and assisted this person. Since I was (miraculously) feeling better than normal, I saw it as an opportunity to devote my time and energy to a loved one who is stressed out. So even when I had low energy and wanted to lay on my Biomat and work on my blog, I forced myself to go out and run errands for this person because I knew they had a lot on their plate and that I could blog any other time. And that when they came home from work they would be happy that I took care of things on their to-do list.
- Except this person wasn’t. They muttered appreciative comments every now and then but they were grumpy and disconnected from me a majority of my visit. I sat and listened to their work struggles and acknowledged and cared for their needs while they were almost entirely self-absorbed for four days.
This person has been there for me through my deepest and darkest times with Lyme, and has been my rock in many instances. So I was happy to be able to reciprocate the support that they have given me before, but after 4 days, I was beginning to be upset by the dynamic. But I made a conscious decision to not overreact and to continue to support this person instead of pull away from them or create conflict.
Plus, I was having GOOD DAYS during my WORST TIME. I wasn’t going to let anything ruin my mood. I was feeling optimistic about my future and my health and I’ll be damned if I didn’t enjoy it.
Sooner or later they would apologize for being miserable and stressed and thank me for all that I helped them with.
But that never really happened. So I drove back home, disappointed and feeling used. But at the same time, I was feeling good about my health. Hopeful for the first time in a while. Once home, I pulled out my gratitude journal and spent extra time listing all that I was grateful for, and then eventually, I ripped out a blank page and made a plan for the upcoming week.
I wrote at the top: “THIS IS THE WEEK! Things are changing for the better.” And scribbled down things I wanted to accomplish (like continuing to go to bed and wake up early, walk or exercise every day, find time to volunteer at my aunt’s occupational therapy clinic again, finish half written blog posts, work on my resume etc.)
I laid the paper next to my bed so I would read it in the morning, set my alarm for 8:30am, and went to bed excited for my life to continue to move forward.
But, for some reason, my body had other plans.
I had been waking up before my alarm for a few days, and yet this morning, I could barely open my eyes long enough to find and turn my phone’s alarm off. I felt like molasses had been poured into my brain and I was in a half conscious state, not quite dreaming anymore but not able to wake up. When I was finally able to come to, it was noon and I had slept for over 13 hours. I was drenched in sweat, my body ached, and I felt hungover.
And no… I didn’t drink. Frankly, I wish I had, a glass of wine would actually be amazing about now.
I over did it.
I pushed my body way past it’s limits, again, by willing myself to be normal for a few days.
It took me over an hour to get out of bed to go downstairs due to weakness and dizziness. I took a paleo meal out of the freezer and ran it under hot water to thaw, and returned to my bed upstairs. Four hours later, I hadn’t moved and hadn’t eaten. I did not have the strength or energy.
Depression set in.
I was disappointed on multiple levels. Having good days and then being hit with a difficult one, while not unexpected, is still hard to deal with. The grief of not being able to live the life you want, the life you DESERVE, is hard to deal with. Your body betraying you when you desperately want to participate in life is hard to deal with. Watching other people carelessly take for granted the things you’ve been hoping and praying for is hard to deal with. But none of these are things I hadn’t dealt with before.
What I haven’t dealt with before, is betrayal from my biggest supporter.
Because when that person called me today, and I explained that I was having a rough day… they eventually responded with this:
“Sometimes, when I call you and I can tell you’re having a really bad day or your in a lot of pain, it really brings me down. And I just make excuses to get off the phone because I just can’t handle it. I just don’t even want to deal with it. I don’t want to even talk about it. “
And “Honestly… Every time you talk about Lyme, or even Lyme related stuff – like the MTHFR mutation or whatever – I’m just SO drained. It sucks the energy out of me. I know this sounds bad but I’ve been feeling this way for months. I just don’t have the energy anymore to be there for you, or to be in your life like you need me to be.”
To say I was deeply hurt and utterly shocked would be the biggest understatement of the year.
And just to clarify: I get it. What this person was saying is valid. I can see why they would feel this way – at certain times. This person has made sacrifices due to my health condition and has probably suffered from a variation of “caregiver” burnout during times I was really struggling.
BUT NOW? When I’ve literally dropped everything to help you? When simple tasks are twice as hard for me, yet I push myself to do them to help you anyway? When I’ve specifically stopped talking about Lyme? When I’ve been sensing that you tune me out when I try to talk about health, so I’ve been fighting this battle on my own and keeping everything to myself? After I continually listen to all of your troubles and offer advice or sympathy? After I worry about your health and try to make things easier on you in any way I can? After I do the things you need the most without you having to ask? When you ignore me and my needs repeatedly because you’re too stressed or too tired?
Well guess what… You’re stressed and tired because of a job. I’m stressed and I’m tired because I’m fighting for my life and my health every single day. Yet I still find time to be a decent human being to you, and on my good days, go above and beyond for you.
I don’t even know what to feel.
I’ve developed thick skin over the years. You have to with a chronic illness, or you won’t survive. With certain friends, family, and acquaintances not understanding your illness, being critical of your medical needs or limitations, making ignorant and hurtful comments. judging you or your treatment choices, or just flat out abandoning you… You have to develop thick skin.
I’ve lost a lot of people in my life because I “changed” due to illness. I wasn’t the same, I wasn’t as fun, I was too much of an inconvenience.
Eventually you learn that there are a small group of people that you can count on, that you can share your struggles with, and the rest don’t matter.
But when one of those people… THE person… who has been there through it all, makes hurtful comments… and you know that they understand your disease and your struggle more than anyone else….
It’s absolutely life crushing.
And I’m beyond hurt. I feel alone. I feel abandoned. I feel like I’ve been lied to. I feel like the support and understanding I’ve relied on during the most difficult of times was fake. I feel like I have no one on my team.
I’m sick of people not understanding.
I’m sick of people being ignorant and hurtful.
I’m sick of being a burden to other people.
I’m sick of not being able to be independent.
I’m sick of not being able to be the person I want to be.
I’m sick of watching everyone around me do the things I want to do, and used to be able to do.
I’m sick of not being about to get a job.
I’m sick of feeling like everything I want is just out of my reach.
I’m sick of being scared that I’ll never be fully healthy.
I’m sick of spending a majority of my energy into my treatment instead of into LIVING LIFE.
But I am NOT my disease.
I am so much more than someone with Lyme Disease.
I am someone with many strengths who has so much more to offer the people in my life.
And if someone “can’t handle” the part of me that is Lyme disease, they don’t deserve any of the other things I have to offer.
It is NOT my fault that I have this disease.
I do not deserve this.
I am allowed to feel sad, angry, depressed and any other wide range of emotions about a situation that demands control of my life.
And I deserve acceptance, understanding, and love.