Putting words to the problems

Thanks to wonderful people, I’m getting help in my home. Holy hosannahs, people, it. Is. Amazing.

My part of the bargain is to get the state to step up to the extent I can persuade it to, hoping it covers the cost.

Ever since governments realized that keeping people safely at home is much cheaper and more productive than warehousing them, sensible states work to make that possible.

Naturally, they have checklists and formulae to determine what they’ll provide, based on neat cookie-cutter notions of disability, developed in tidy rooms by people with steady pay, good benefits, and a remarkable degree of job security.

I mean… I… ay, ay, ay.

TW: Describing the usually silent reality

Fellow spoonies can guess at the blind horror it was to climb right down into the mess of this life — where getting through the day requires me to gently ignore as much as possible — and blurch it all up, but thanks to an excellent psychotherapist who knows how to pull me off the ceiling, it happened today.

Mom, it’s okay if you skip this! It’s clever & apt, but grim in parts. Keep in mind that it’s not the whole story, just the relevant hard parts, because it’s written to the task of getting money out of the system.

I separated the “Why it is like this” from the “What it is I need” and I thought this might be helpful to share with others, since I’m far from the only one who has to do this. Hope it helps.

Letter stating what my helpers do

Dear Gate Keeper,

Here is a discussion of my needs and the help provided. Thank you for taking the time to look into this.

Cooking:

Diagnoses affecting my intake are numerous and often mutually contradictory (e.g., insulin resistance & gastroparesis.) Inadequate nutrition makes everything worse, as you know. Multivitamins can only do so much.

I mentioned “no shortcuts”: this means sauces, dressings, snacks, everything, has to be made from scratch, thoroughly cooked, and frozen fresh in order to be safe. This is largely due to mast cell activation syndrome (everything super fresh & clean) compounded by the inflammatory reactivity of fibromyalgia, CRPS, dysautonomia, and multiple food allergies and sensitivities which already existed (making the cost of failure high), plus gastroparesis (so everything has to be processed and cooked.)

Everything has to be frozen in serving sizes, because the mast cell reactivity and the downstream consequences of failing to account for that are so devastating. Then those many containers have to be washed and put away. Please see housekeeping about why this is such a big deal.

Shopping: pushing a cart is like holding onto a rail wrapped in barbed wire while every bump is like a blow to the frame driving the barbed wire deeper. Not having to go through that is important for being able to do anything else in the day.

Here’s what Person A does for me:

• Shopping: drives me there, handles cart, keeps us on task, remembers what I forget.
• Keeps kitchen clean, functional, organized.
• Keeps fridge and freezer ditto, which I couldn’t do for years (temperature, metal & glass contact; see below.)
• Works closely with me to understand dietary limits and possibilities. Much learning, checking, & creative thought involved.
• Preps, portions, and stores fresh food.
• Makes sauces, dressings, and desserts; stores them in usable portions for me to dress my meals with.
• Cooks main meals and snacks meeting my stringent needs.
• Serves me a fresh, hot meal every time he’s here. Everything else I defrost in the microwave.
• Portions and stores everything.
• Cleans the endless parade of dishes.
• Provides apt advice on how I can make my nutrition easier to access and more satisfying.
• Every bite has to be cooked (gastroparesis & g.i. disorders) so this means considerably more work and more dishes.

Housekeeping:

Anything involving contact with things that affect transmission of temperature and electricity is agonizing. CRPS and its peripheral nerve activity are essentially a matter of disrupted signaling, and these are hugely exacerbated by contact with metal, glass, running water, any water at anything other than body temperature, vibration (which is brutal – imagine a full-thickness burn happening inside your tissues down through the bones) and other sensations which would ordinarily not even warrant notice, but to systems like mine are limned, imbued, and soaked in pain. Not just ouch or even agony, but a pain that causes the motor nerves themselves to fail without warning of any kind. It’s very distracting and worrisome, as well as uncomfortable and risky. It can be dangerous, as the many glass objects I’ve broken in the past year attest. Dish gloves don’t work for me due to tendon problems and what the gloves are made of.

I’m a fall risk, due to the dystonia and the repurposing of motor nerves to carry more pain. (I can supply excellent peer-reviewed articles to support all of this. If I forget to provide them and you want to see, please let me know.) And, because of the many sensitivities and reactivities I live with, packaging and serving my food in glass dishes is essential. Cleaning them is mandatory. There are no better options.

Due to the combined effects of hyperflexibility, hyperreflexia, complex regional pain syndrome and the nerve damage and “windup” that goes with it, histamine intolerance and the tissue effects of inflammation, and other factors… movements beyond very moderate range have to be deliberate and controlled, or I risk injuring myself again.

This means that things like folding sheets, reaching, or making ordinarily repetitive motions put me at risk of injury, with disproportionately bad results and disproportionately long recovery time. Amidst all this, sensory sensitivity has developed across the board. (I was an emergency nurse, mid-distance runner, hiker, rock climber, and I liked the meditative nature of housework. This current reality is hard to live with, but it is what it is.)

Here is the list of tasks Person B does for me:

• Recurring serious attacks on dust and mold in the home. I havent’ been able to get treatment for these allergies to a successful degree, and they impair me badly. Dealing assertively with these environmental insults is key.
• Change bed. [I’ve deleted the bit about the worst incontinence. You’re welcome!]
• Vacuum floors (vibration, auditory, grip)
• Vacuum baseboards, corners, overheads vs dust.
• Move furniture to vacuum underneath.
• Damp soapy wipe down of baseboards, shelving, & all the surfaces vs dust.
• Wash curtains vs dust
• Mop floors vs dust in cracks
• Clean bedroom carpet and rugs in house vs mold and dust
• Deep clean bathroom, bedroom, and kitchen, to keep mold levels below functional threshold.
• Spot clean (I drop things often)
• Fold laundry
• Dishes all the time. They have to be washed really well, because of the mast cell issue.
• Errands: trips to P.O., pick up meds, get cleaning products, stock up on masks, and hopefully outings when it’s warmer.
• Reminders: get meds, fill med organizer, change towels, etc.
• Laundry: bedding, towels, clothes, rags. I have a small apartment washer that we have to use exclusively, due to horrible reactions to commercial cleaning products.
• Clean asthma gear & vital-sign gear.
• Equipment maintenance for air filters: changing filters, wiping down, checking seals, etc.

It’s hard to realize, until you‘ve been through it, how very helpful it is not to be tortured by ordinary tasks of daily life.  I appreciate your willingness to look into this.

Please let me know if you need any supporting documents.

Thank you so very much for your time…