chronic lyme disease with a taste of nut
Shhh… please read this quietly.
I can’t write a long post like I normally do. I can’t even stare at this screen too long. I had to write an update, however, because there is a LOT going on and I don’t have the ability to say a lot about it right now.
My brain is swelling. I’m having seizure like activity, convulsions, central nervous craziness.
Yesterday I went to my middle child’s middle school orientation – we’d been looking forward to this all summer; it was to be a parental highlight as a stepmom for me – and I tried, I really did. But when we had to do a building tour and when faced with the stairs, I decided to let her go on without me and I waited. Only we lost each other. Then the noise got to be too much. I had loaded up on preventative herxing measures, such as Alka-Seltzer Gold, Tri-Salts, Parsley, etc. Time ticked and my arms became hot, buzzy, heavy, numb, and I soon couldn’t lift them. Noise and light swirled around me as I began to twitch.
I finally found her and we met in the cafeteria for one of the info sessions. I felt like the speaker’s voice was directly in my left ear and the woman out in the hall having a conversation’s voice was directly in my right ear. The two conversations were clashing against my brain, causing all sorts of clanging and screeching and dizzying effects. I wanted to scream.
Luckily, I knew not to make a scene in front of my impressionable young stepdaughter. She had enough to deal with besides dealing with a stepmom slowly losing her mind next to her on the swivel chair. I texted my husband the SOS signal and he drove over to relieve me. I apologized to my stepdaughter and explained what was happening in a little detail. She could tell, anyway. The kids are all used to me having to abandon ship. I went outside, felt so much better to get out of the noise….but I was still twitching like mad; my brain felt compressed by two metal grinders. I made my way to my car and sat there and cried for a little while.
I wanted to be there for her. I promised her. I had let her down so often due to being sick and not being able to come to important events.
Once home, I quickly grew severely fatigued and intended on going straight to bed. But I was up again until 3am in much pain and insomnia.
Which brings us to today. I had a lot of errands to run with my oldest concerning the car she just bought. I drove 2 and a half hours total today. That is way too much for me. I had to drop her off at work but we were early so I offered to take her to Wal-Mart to buy new clothes she needed. I did tell her she needed to push me in a wheelchair, to which she excitedly accepted (she wants to go into the medical field).
Five minute into the store, my arms became freezing inside, then hot. Like hot or cold water rushed through them and weighed them down so badly I couldn’t move them. My head could barely stay upright. I began to twitch again, that familiar brain squeeze happened. There were too many people. Too loud noises. Too bright lights. People weren’t moving fast enough. I became dizzy and could barely speak.
Once out of there, my oldest helped me stumble to the car. I realized one of the worst realizations thus far:
It looks like I won’t be able to go out in a large public area anytime soon.
What will that mean???
I’ve already missed one week of church after having convulsions all during the service the previous week. That breaks my heart to think about not going to church.
And now? I can’t even take my kids shopping? How will I go shopping for food I need? Food for the family? How will I go to the parent teacher conferences? Big lists of “I can’t do this” hung like neon signs in front of me, mocking.
The worst this:
You are of no use to anyone or anything anymore.
Well, I knew that was a lie. But in the moment when you feel kicked and beaten, you will believe whatever lie comes into your head. And that is when you need to get your emotions under control. Take out that Bible and remind you who God says you are. Because, obviously, you are in great error if you’re thinking you’re useless.
I’m reminded of Matthew 6:26
Look at the birds. They don’t plant or harvest or store food in barns, for your heavenly Father feeds them. And aren’t you far more valuable to him than they are?
Am I not more valuable than a single bird? Oh, I love birds. But imagine – God loves me more than I love a bird. And He will provide for me, He will somehow sustain me, even if it’s in ways I can’t fathom.
I have much more to discuss on this topic, but I’ve hit my threshold on how much I can be looking at a screen.
So much of what I love is being taken away, slowly and quickly: taking my kids shopping, reading a book, writing on the computer, writing in a notebook, watching a TV show or going to a movie. Listening to long, overdrawn stories by one of my kids who can’t quite understand brevity. I want to hear those stories now! I want to be able to listen fully without excusing myself because the pressure on my brain is getting to be too much. I want to write poetry. I want to sign loud. All these things – suddenly taken away. My eyes are becoming cloudy and swollen, sinuses pained constantly. I am alone in my bedroom far too often. Isolation has become an invitation. Will it be to further destruction or will I allow God to invite me nearer to Him?
I’ll leave you with this article that explains neuro lyme and the issue of brain swelling pretty well:
In all this, though, I believe with all my heart that God has a purpose that I will probably never understand fully this side of heaven. But I trust in God because He is faithful. He holds me when I feel abandoned and lonely. He reminds me of who I am when I allow the lies to make me forget.
It is well, it is well, it is well with my soul.
— lymie out…
A Literary Magazine that gives platform to writers and artists with invisible illness.
Staying grounded while recovering from Lyme disease
A Blog About Living with Lyme Disease
Radical hope. Compassionate change. 501(c)3 non profit
My journey in getting treatment for Lyme Disease
Advocacy is FREE and its never-ending ripples spread awareness for all worthy causes!
A Lyme Disease Blog from Bruce county ontario
Recovery from Lyme Disease, chronic pain, and fatigue
How the light gets in.
My Journey With Bee Venom Therapy