A 13Year old girl describes one of my illnesses in the following letter to the CMTA.

CMTA is Charcot Marie-Tooth Association. It represents a disease affecting about 200,000 people. I am one of the lucky 200,00. It is hard to describe to people but this 13-year-old girl wrote a letter to the National Organization describing how it affects the body. The disease does not kill but does make you not mobile. I have it from the waist down, some have it all over their body and it is inherited so they have not found a cure just some medicines to help relieve the symptoms.

THE BUGS THAT LIVE WITHIN ME BY HEATHER MACMICHAEL.

Okay, so I’m really tired, and I’m sure that doesn’t help but I thought it might be a boredom-killer to explain the bugs that live on and in my body, and it’s just my experience, so you can believe it or not. I don’t mean that I hallucinate about insects crawling on me, and I don’t mean the bazillion trillion whatever-illion microscopic bugs that apparently live on and around all of us. I will also clarify that I don’t mean the FBI type of bugs either.

I’m talking about the feelings I have on a constant daily basis, that I’m SO used to that it’s not really worth complaining about. Empathize with me here, nothing more, nothing less. Wear the shoes so to speak. And so, pardon me if I come off as crazy, but here goes.

1.THE ANTS

I feel ants running up and down my legs all the time. I look and there is nothing there. What is actually happening because of my condition is that my neurons (nerve endings) are sending messages, but there is a problem in the transporting of the messages, so there are false cues, which trigger a different part of my brain (or something scientific like that) which make my legs tingle a little. It’s rather annoying to try to remember not to be paranoid about it.

2. The Wasps

These are the ones I complain about. They SUCK with their random sting…wherever, whenever. Stretching doesn’t make them stop; neither does un-stressing, changing my body position, diet, etc. I’m starting to suspect the weather. The wasps are unrelenting, attacking at all hours of the day and night. Sometimes they get on my last nerve (pardon the pun) and I have a mini breakdown. I am afraid of wasps, both the real kind and neurological sort.

3. The Centipedes

The centipedes are interesting. They are actually under my skin as opposed to on it. They wriggle around and are fairly unpleasant. Sometimes there are ants walking on stop of the centipedes. They don’t really bother me, but sometimes are a little frightening.

4. The Grasshoppers

Everyone gets the occasional twitch-type of spasm once and again, and to me, they’re exemplified as grasshoppers. I get a LOT of these. Sometimes one spot is affected for hours, somewhere really random like one spot in my leg or stomach. These are not painful but again a little worrisome when they stick round for prolonged periods of time.

5. The Butterflies

These are just random tingles that happen kin one spot for moment that feels like a butterfly is fluttering its wings right beside my skin. They almost tickle and, of all of them are the least unpleasant.

Bonus: The Leeches

Yes I know I originally said “the bugs,” but the leeches live there too, so I’m going to explain them while I have your attention. The Leeches are suckers, but not bloodsuckers. No, they latch onto my muscles, and they suck the energy right out of them. After a few minutes of walking my legs feel like they’ve waked up about ten flights of stairs. I’m wearing heels or walking up hills. So even when you slow down to “charge” your energy, the leeches are still sucking. They never really stop. They suck all the time. So that wraps up my “bug” analogy. I’ll bet that more of you can understand exactly what I mean.