Lyme and a Coconut

chronic lyme disease with a taste of nut

Should the Ocean Hit Me

scoopnest

credit: scoopnest.com @JoeJacobi

I went on a major field trip today. Walmart. Woohoo!

It was really quite the momentous day because I had just gotten a walker thanks to our local thrift store and I knew I’d need to be pushed around in a wheelchair once we got to that big-box store with the disorientating, nauseating fluorescent lights.

Woah, a walker? Wheelchair? How did we get there, you ask? I have no idea. I really don’t. I mean I don’t walk normally any more at all, but I’ve never mentioned the walking devices before.

Honestly, I just got fed up. I was tired of missing events. My two younger kids (12 and 10) needed new clothes and Husband was taking them into the city. I really really wanted to go with them. Not because it was Walmart because I really don’t like Walmart for above reasons. I wanted – nay, needed – to go with them because I couldn’t remember the last time I was able to go with them to anything outside of the house. Last week, I missed an event just blocks away because of my neurological symptoms as well as pain. I have to enlist a neighbor to drive Middle (middle child) to her confirmation class every Wednesday because I’m always on the outs, physically, during that time. I thank God for neighbors and friends like her. But it was very hard to ask. It was hard to admit that I couldn’t drive a few blocks at ten to six on a Wednesday evening. I’m also worried that I won’t be able to participate in Youngest’s new cub scout schedule.

I’ve been sequestered to my home for a long time, except going to work and my previous cafe-time before work in the early, early mornings. I’ve noticed that I’m at my most able-bodied earlier in the day. Once late morning hits and the earth does it moving-around-the-sun thing making day turn to afternoon and then evening, my health takes a quick nosedive. I’ve had spots of time where this wasn’t the case and I thought I was past this point, but it seems to have returned full force.

Back to today, when I was in bed feeling the all-too-familiar foot/nerve pain and knowing I wasn’t walking anywhere for a good long while, I told my family that I was tired of being isolated and stuck at home due to my illness while they went out and even if I had to be pushed around in a wheelchair, even if I had to subject my brain to the horrid lights and noise of a big-box store, I wanted to be with them. I didn’t care where it was; I just wanted to feel part of my family. I wanted to feel normal again.

That word – normal – is its own blog entry and I won’t expand on it now.

The kiddos were happy to push me around in a wheelchair. And so we went. It was a tough adjustment. It’s hard to see someone you love decline in this fashion. It’s also confusing for all involved because just this morning I was walking around fine; I drove to the big nearby city for my weekly Saturday morning meeting and although I had to leave early from sickness, I could still drive and walk and carry on a conversation. So it’s part of The Weird symptoms of chronic lyme – fine one minute, opposite of fine the next. We really need a handbook to explain all this.

Here’s how the field trip went: Once at Walmart, Middle and I split up from Youngest and Husband. Middle pushed me around like a pro – me in my Hollywood over-sized sunglasses resembling Jackie O. a bit too much – and I had a great time looking at clothes with her, learning what her style was because boy has her style changed! I loved every second of it. I didn’t care that I was in a wheelchair one bit. I was with my girl and she didn’t care about the chair either. We were both so happy to be there with one another.

The drive home was rough. Although I had the luxury of sitting in the wheelchair and didn’t need to worry about seizing while standing (remember, my seizures are Weird and not what you’d typically think of as seizures) nor did I need to worry about the dizziness tipping me over like a bowling pin or have me talk like a drunk person, something happened to my body; I don’t know what it was, but in the car my limbs lost all energy and I couldn’t move anything. I could only recline in the passenger’s seat and drift in and out. I was conscious, but it felt half-way. Like life was muffled, underwater.

It’s an odd sensation, like being helpless to watch a massive ocean wave overpower you. You have no choice. You have to let the water take you. You know you’ll end up on the shore eventually, but you don’t know how long or when it will be. But you always end up on the shore. And you stand up eventually.

I probably just looked grumpy, sitting in the passenger seat with my arms dropped on either side like a rag doll, my head tipped over to one side and my eyes closed. Maybe I looked like I was taking a snooze. Whatever, it didn’t matter. I’d rather the kids not know what this felt like, anyway. Or that I can’t really talk. Losing speech is pretty scary. So I just sat there, experiencing the waves crash over me again and again. Silent and trapped.

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credit: wired.com, Mark Tipple

 

I’m not ignorant; the kids know. Once in the garage, I had to ask one to help carry my purse and water bottle inside. Husband had to assist me inside. They know. My hope, though, is that no matter what happened to me after my big field trip out of the house, they enjoyed having me in their midst, that they felt like a family again.

I stayed in bed another two hours (I think; time becomes an abstract notion when I go into these states) and felt better around dinnertime. The bad thing about the standing-up-on-the-shore part is that because I feel better I then want to tackle the world. I had an idea for dinner and wanted Husband to help me make it. I wanted to make a special homemade apple cider, too. I wanted to apply to another job online and I wanted to clean up the bedroom. When you lose so much time you want to grab time and shake the living tick-tocks out of it.

Thankfully, Husband is here to remind me not to push myself. For that, I am grateful. I think that reminder gave me an extra three hours or so.

We had a good dinner; Middle even invited a friend to join us which is unusual because I’m often too sick to accommodate visitors. We had a great time and I even got to watch a show with Husband. It was then, however, that nerve pain shot through my foot so bad that I cried aloud and even scared myself. The zaps happened a few more times and the Weird brain stuff started. Husband helped me upstairs and into the too-familiar bed and I waited the ocean out.

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credit: twitter, @scarlet_leeper

Planning excursions is nearly impossible now. I can’t commit to anything or anyone. If I do dare to commit, I must add the caveat that I might have to cancel and to not take it personally. As I write this, I am thinking about tomorrow. Our sweet little town is having a ladies tea at the community center and Middle longs to go with me. I want nothing more to take her and I wanted to ever since I first heard of it happening. The tea is at 1:00, however, and Sundays at 1:00 is prime sick-time. It’s usually when I begin to get the worst symptoms. Lately, I’ve been somewhat-symptomatic at church and the half-hour drive back home has been very difficult with everyone, especially me, feeling pretty discouraged about the never-ending-ness of it all. So I’m trying to be strategic about this.

Tomorrow, w will attend a church in our own little town so we can be close to home. After church we’ll come back and I’ll take it easy until 1:00 when, Lord and body willing, I will dress up accordingly with Middle and escort her to the ladies tea. I already called and confirmed we could buy tickets at the door so I wouldn’t have to commit to going days beforehand. I also decided we’d sit near the exit in case we had to escape swiftly and stealthily due to any unexpected symptoms necessitating a quick getaway.

Middle knows what’s going on. She knows we might not go. She is the most understanding 12-year-old I have ever known, but I know even a mature 12-year-olds still gets upset and disappointed over canceled plans. So I’m going to do my best which is all I can do.

And if I do make the tea, if Middle and I do get to have this special time together, I will be so very grateful. If the ocean should hit me once we get home…then bring it on. The ability to be with my family is worth it.

 

 

outersparkle-wave-instagram

credit: instagram, @outersparkle

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