Month: January 2020

Travel and HD

Mastering The Decline2 Comments
ball shaped blur close up focus

My thing is really old human-made things (big and small), other languages and countries, and sometimes people.  My plan is to jettison from the comfort zone for months at a time over the next few years.  On a budget.

It Always Sucks The First Few Days

I feel like I’m on carnival rides for the first time. I don’t know which way to lean or where the handholds are. I can’t speak the language. The big, impersonal city hates me. I am in tech hell trying to figure out new carriers and wifi. I don’t know how to ride the bus or pay for groceries. I may eat peanuts and fake pringles the first day because I landed on a holiday when all the stores are closed except that one gas station.

It always feels like wtf have I done? Why am I here? It gets existential pretty quick. This time I’m also on the edge of depression. It’s rainy and cool.

I thought I was traveling because I wanted to see things I hadn’t. Before I can’t. But it’s really become an exercise in dependence/independence, acceptance/rejection. How much help will I need? Will be offered? Will I ask for? How will people react? It definitely felt like I was crashing a party once or twice. Overall it feels good.

Upside

It’s in line with the philosophy: if HD makes it harder, do more of it.  So the cognitive struggle is real.
It’s often gorgeous, this planet, no matter the weather or location.  Even if I hate the rain and grey and cold.
I have met some incredible people who ‘get’ me, HD or not.

Traveling Checklists for Me

Timing.  Every other day is a rest day. Especially each side of a travel day. This means minor issues can be worked in and you don’t feel like you’re rushed to visit something.

Organize.  When you’re having a particularly clear day, figure out the packing list and pack in advance.  See if you can manage the luggage 🙂 Put everything in a backpack and a carry-on size suitcase (with wheels) to check. More than this is not manageable.

Research.  Search attractions, neighborhoods, and transit in that order.  Then book them in reverse. Shared rooms should have at least a private bath.

Apps.  Maps with transit, banking, and safety apps like vpns, emergency numbers list, and safe-neighborhood lookup (traveling solo). Screenshot a description of HD in the local languages.

Downsize.  If I own 2 pair of scissors, I can’t find either of them.

Redundancy.  Personalized things like glasses, retainers. Physical copies of docs and also encrypted versions both cloud and device.
Bring an old and new phone but don’t worry too much about extra cables or converters.

Emergency.  Masks, minor first aid stuff, solar/crank chargers, water purifiers. Brita bottle (which I need in Alabama, too).
Bring OTC meds, they differ by locale.  Anti-diarrheal is Rx in Brazil, for instance.

Relax.  I’m practicing this one.  Right now. 🙂

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Sensation

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How Huntington Disease Is Affecting Touch, Satiety, and GI Sensations

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I don’t hear much about loss of proprioception or sensation. And even less about how it affects GI issues with Huntington Disease. So here goes, though it may be TMI. You were warned.

Sensation: What I Feel (Or Don’t)

My hands and fingers will sense, when touching my leg or arm, that I’m touching someone else’s extremity. Once I see blood I know I’ve cut myself (again) trying a mani/pedi.  I have to floss in the mirror to be able to tell which teeth I’m between. 

I’ve lost sensation in all the nether parts, too. For the last decade or so it’s been hard to orgasm. I can’t tell if I’m peeing (and can’t feel wetness), which can lead to some really awkward situations. I poo perfectly normally except that there’s no advance warning – once I feel I have to go, I have minutes, at most. Worse yet, I can’t hold it. I’ve lost a lot of underwear to public bathroom wastebaskets.  

Satiety

Is my lack of satiety related to other sensory issues? I haven’t felt ‘full’ after eating in years. At least a decade. I can literally eat and drink until it’s hard to breathe or lie on my stomach. And still won’t feel full.

Hacking the Situation

Since I can’t trust my appetite, I rely on timing and visual cues for portioning. I kegel and qigong tap and do proprioceptive and balance exercises. Wait to leave the house until the morning poop. Keep wipes tucked in my bra, since a public stall is no place for my shit coordination to rifle through a bag. I postpone eating if I’m leaving the house for more than a couple of hours, eat out only if I can get home soon after, and fast all day for air travel.

I know this will get worse, it’s HD. But for now I’m mid stage and looking to function as close to normally as possible.

Photo by Hafidz Alifuddin on Pexels.com