A Good-Bad day: A week in my disabled life as a motivational speaker :-)

Monday. I'm in agony, sickly and dizzy; todays a good day. I wake up to my phone alarm. Pain rattles through me. I’m going to be sick. My husband, also my carer, lifts me out of bed, carries me to the toilet & helps me wash. He takes me to the sofa & settles me down there as comfortable as I can be for the day. Once he sits me down, I won’t likely move.

We hug goodbye, safe in the knowledge that our love will get us through whatever the day may bring & he goes off to work. 

I struggle to stay awake. Laptop on my lap, I try to work. I have speeches on Friday & so I desperately need to work. My body and mind doesn’t let me.

45 minutes later, I’ve projectile vomited twice, fainted four times & had countless seizures. But I’ve done some work. Not enough. No where near enough, & no where near good enough quality-but some work is better than none? 

The pain spreads it’s in my ankles today… so every time I move my foot or leg or core it feels like the bones are grinding together, as if they're sprained, fractured, crunching and breaking. It’s in my toe joints too, I can feel them, aching, stinging & hot, wriggling in my super soft compression socks.  

It’s in my knees too, grinding, pain spreading hot & cold, clammy, burning, spawning & cramping all down my calf & up my thigh. White hot. 

My head hurts & I’m so exhausted I should go to sleep.

My back screams at me every time I move.  

It’s in my finger tips burning & tingling, my forearms itching & cramping as if I pulled all the muscles in my arm & shoulders. It’s on my elbow, shoulder and neck too, bone on bone, calcified. Yay, chronically high calcium...

However…

Today’s a good day. I can’t waste that. I have way more energy than usual, AND although the pain is all over, its only agonising in two places, which is better than it being agonising ALL over, ALL the time. Today is a good day.

I stand up, for the first time that day.

I stumble to the kitchen, re fill my hot water bottle, get myself some electrolytes to drink & settle back on to the sofa to rest with a film & soft blankets. My body screaming at me as tears shriek down my face, shivers run through my spine and I gasp and plead for mercy.

Today’s a good day, but I still can’t do much. 

Hours pass, & I am still able to move! I stand up hobbling around the flat to the reminded promoted jobs my husband left for me. I do several chores (because otherwise he does all the chores all the time & it’s not fair on him). 

I do half of the dish washing by hand, & collapse, I wake up, & then crawl to the sofa to rest. An hour later I take my wheelchair back, & I wheel back to the kitchen to do the rest of the dishes with my hands raised above my head, unable to see much. I clean & finish the few dishes remaining proud of myself & my efforts & exhausted. Arms now agonising painful that I can’t move them. I struggle to move my wheelchair back to the sofa to rest. 

I sleep. I can’t stay awake. 

Todays a good day. 

My darling husband comes home & we embrace & he immediately fills my world with light & colour & laughter & fun. He looks after me & thanks me for my efforts. He helps make dinner even though it’s my turn that day, & we eat in comfortable giggling silence on the sofa where it’s more comfortable for me to sit. I can’t speak all that well & he lets my thoughts rest, knowing I faint answering questions or asking. Perfectly in sync & perfectly together, we link.

We parallel play that evening, quite happy & content existing close to one another on our separate journeys.

MY legs have stopped working again & I start screaming in pain because my arms aren’t working either. 

He carries me to to the toilet, helps me wash helps me emotionally regulate & eases the agony. 

He makes me a bath for pain relief, makes it safe for my access, gets all the regency things to stop me drowning, puts the grips & comfortable things to lay on & the but twisty thing to help me transfer in & out of the bath. He picks my up & I scream & he kisses me gently on the neck as I cling on to him, screeching & gasping & crying in pain, & he slowly lowers me onto the side of the bath & helps me slide in the soothing hot water. 

Todays a good day, but today I did too much.

Now I can’t do anything tomorrow even though I want & need to.

Tuesday.

I wake up crying to my husbands alarm, instead of waking up to make him his work lunch, I can’t move. He carries me into the toilet, carry’s me into the lounge & onto the sofa & sets up my den for the day so I don’t need to move much. So tender, so loving & in tears of pain, still giggling through the pain at some silly little thing he says. "Don't make me laugh!" I giggle agonised positivity - crying - "It hurts so bad when I move my face & chest! " But we are both helplessly giggling now.

Helpless, but never hopeless. Hope exists, sparkling on the essence of agonised positivity & pain. 

I lay down on the sofa, a bin and a commode next to me In case I vomit or can’t move but need the toilet.

Today’s a bad day.

The giggles resolve & I find my self slurring. Today I cannot talk, without worthless syllables stuttered out, drunk & disorderly. I can’t express my thoughts or communicate & it’s frustrated & upsets me.

My husbands seems to know what I am saying. What I mean. He’s amazing like that. 

He lays me down & sorts out my pain relief. 

The morning is okay. I scream & cry & whimper & groan with every tiny movement because every joint every muscle ever bit of skin & every organ feels like it is cramping & pulling & grinding & searingly painful that any tiny movement makes me scream. The door bell rings but I don’t process what it means & my poor mum waiting outside to come in & check on me cannot gain access to me even though I need her help today. 

Today I can’t move, unless I take my wheelchair to the toilet. But in my my flat I can only use the wheelchair in the lounge & kitchen the hallways & other room s are too small & too narrow . Not to mention we live upstairs with no lift but that’s a whole separate issue!

Mum tries to help me, she rings me but I can’t pick up because I don’t process what my phone ringing meant. The vibrating noise makes me faint. I try to text her back once I realise but my fingers are clumsy & drunk. It’s too painful to hold my phone.

I choose whether to rest or do work, & I have no choice to choose rest because if I choose work, tomorrow will be a really bad day & I need to get better for work delivering a speech on Friday. 

Everytime I blink I feel like I fall asleep & I find myself trapped constantly in that sleepy limbo of just verging on to sleep where you’re neither awake nor asleep- yet having to function through this whole new level of exhaustion in a world where no one believes you’re tired because you don’t do anything. Calcium somnolance where you’re trapped on the verge of sleep forever - & yet never feeling rested - is not something most people relate too. 

Today I sleep all day. Today I had no choice. Today was an average day. 

My husband comes home & suddenly, it’s a very good day indeed.

Together we find love, in a helpless place.

Wednesday 

Today’s a really good  day.

I wake up, in pain & groaning & moaning I hobble out of bed, I walk to the toilet, I toilet & wash my hands. I haven’t showered in 7 days (I have nightly baths instead) but today I can clean my teeth without aid. maybe tomorrow my husband can help me shower. depends if I am able. 

I hobble to the lounge & my office & set up my laptop, I do some work. It goes really well & I only faint twice in that precious hour of capability. I fret my speech isn’t good enough, I feel myself panic at the lack of time & start to seize. 

I close the laptop after an hour of work.

I rest. unable to stay awake, in recovery of work. I wake, and choose whether to do chores, or whether to do self care. 

I choose chores, in an effort to be a better wife. I stumble around the flat limbs screaming at me to stop as I bend over & pick up laundry; muscles shrieking & taring as I start the machine. 

I choose whether to rest & recover, or selfcare by trying to shower. I choose recovery because I knew I couldn’t shower or get dressed & feed myself or work later if I need to. 

I settle on the sofa pain making me whimper & cry & I am able to distract myself with a film, the pain isn’t below a 6, but today’s a good day.

Today I’m capable. 

Today’s a great day.

Thursday.

I wake up & my husband Mac helps me walk to the toilet & he helps me wash. He helps me to my space in the lounge & settles me up so I can work or rest. 

I work for an hour & every time I blink I fall asleep. 

I can barely move any of my limbs without screaming & passing out or projectile vomiting from pain & sickness. 

My husbands helps me shower in the evening & washed my hair & body because I can’t move with crying & shrieking in pain. 

Todays a good day.

My good days don’t look like other peoples.

...and yet, my amazing days don’t either.

Friday I wake up cautiously excited for the speech I have that day. We get ready together, my husband helping me as well as organising & packing everything he packed the night before for me, & my mum & I get into her car, all my pain relief travel components in with us. I sit on a vision, hot water bottles & compression socks wrapped around various body part in an effort to have me not screaming in the car.

We drive for many hours only stopping for my toilet breaks, because my renal function is a bit off & I need a wee every thirty minutes because of my high calcium in my rare diseases.

We struggle back into a car, & I scream & all the strangers stare, the same ones who frowned & were judgmental when we pulled into the disabled space now shaking their head in disbelief that I am not in hospital.

They don’t get it.

Todays a great day.

I can’t go to hospital on a great day! 

I can’t go on a bad day either, because my disability & disease  is rare - hospital staff can’t treat it, they can’t even  give me pain relief & so I’d just waste a bed for a few days while they observe & realise there’s nothing they can do. What’s the point in hopping in an & out of hospital most days a week, when the stress impacts me so furiously that I would be stuck in a very very bad day for many days in recovery after I get home again?

No. Todays a great day. No ambulance or hospital for me.

We arrive at my speech, leaving an hour to park because disabled access is not guaranteed even when you sort it out in advance. 45 minutes we circle & eventually there’s a disabled parking space & we gratefully park.

We roll into the venue & I put my professional hat on.

Today’s an amazing day.

I’m smiling & happy & no one would ever know I just threw up into a bush.

No one would ever know I had to get lifted onto the toilet or injured my self in a  public restroom.

  No one would know of the agony riddling me. No one sees the sickness twisting my tummy, or the vertigo making everything I look at change shape, with overwhelm hallucinations settling in. No one sees my disability, in fact, if I am not in my wheelchair, many people would be forgiven for thinking I am not that Autistic or disabled or sick, after all. I am good at looking okay because my good days are bad days - I am just used to it.

I find my self on stage, and deliver a speech to hundreds of people, & the audiences applause rings out, heavy & appreciative whooping & cheering & whistling & standing ovations & I feel like I’m flying. They ask me question for half an hour after & I answer well - somehow able to access my memories & knowledge. 

I’m on top form. 

I have not done barely anything for self care or life skills, in preparation for this speech, so I could be capable. Now I’m shining! Queues of people tell me how I help them - some even say - eyes shining - that I change their lives … & I feel blessed that o was able to help other people just like I always dreamt of.

 Little old me, so disabled, helped them. I HELPED. This is all I have ever wanted...

It was worth it.

The bad days.

The good bad days 

The great bad good days

The weeks of awful awful awful good bad awful days that followed as I recovered.

It was all worth it.

  Its always worth it, knowing I can help people.

Saturday.

 I can’t move at all & I can barely process my own name, I can’t speak & am totally non verbal & yet there I lay, happy in the memory of their faces, relishing in the memories of answering questions and sharing my insights, content that I love my job & helping other people.

It was worth it

Sunday

My husband cares for me, he does everything for me, carries me, feeds me, hydrates me, washes me, moves me, everything. He carries me outside, so I can rest in beautiful surroundings & I lay there in the garden, in the sunshine, breeze on my face, glow warming my closed eye lids, unable to move but happy in the memories embracing me, as my body cries. 

It was worth it.

The rest of the week I am either on the sofa or in bed or in the garden but moving or just driving in the car to look at scenery & barely doing any chores or self care. Mostly bed or sofa bound in those two weeks following. 

Many bad days & awful bad days & good bad days…The harrowing agony & emotional turmoil & trauma is worth it. 

Today - like all the rest - is a good day.

All my days are good/bad days. Even the awful ones; because even through that I am happy because I am able to rest & recover & listen to my body’s screams & shouts & look after myself, with a loving support network that both physically look after me but make my career accessible to me too.

I have many good days, even among the worse days - They just don’t look like your good days. Even on my worse days I’m still happy - because why not be?

I still have so much love & compassion & care & kindness to give even at my worse. Even when I am in so much pain & so exhausted I literally can’t move a muscle to even smile, even when smiling is my natural state - I can still be happy, it just doesn’t look it, because my happiness can looks really miserable. 

Happiness isn’t about what you’re getting out of life, what you can do, it’s about what you give. The kindness you give. The love you give. The good intentions because with those good intentions you can learn to be happier even when existing is painful & miserable. This is a life lesson which is hard to tech people who could never understand that an awful bad day could still be a good day - or even that a good great day for me is an awful awful day for them. Most people can’t comprehend, & that’s okay there’s no shame in that. But we must not judge what we cannot comprehend.  

This is a week in my life, my reality, a snapshot that people don’t see when they see me in public.

This is my life, & it’s a life that makes me happy, because even still, I can spread kindness & care & love to those who love me, & I am content & fulfilled because I have been enabled to use my talents to help others in a way that is safe for me.

The pain is worth it.

The agony is worth it.

The despair & misery is worth it.

I am happy. I love my life. My happiness is not dependant on a cure from disability or rare disease, because I know I try my best - & that’s why today, like the other days, is a good bad awful awful good day. 

Take care friends, & I hope you discover the good in your days, too x