Category 4, and messages to my husband

Ben is a perfectionist, and he married a perfectionist, which is a recipe for marital harmony. I think. Except that I am a handicapped perfectionist.

One trying aspect of living with me (for Ben, and myself) is the floordrope. I began using this horizontal space in favour of the vertical 5 years ago, the first week that Energy walked out.  Our dog took advantage of it and ate lots of precious underwear. I’ve had to stash my pile of clothes under the doona when the realestate agent came over unexpectedly, and we generally do house tours which exclude the bedroom. Sometimes when the mound was dreadfully high I would lie in bed, and Ben would hang, fold and wash the masses of items. That was love. I find a tidy bedroom absolutely delicious, but the reality is that I can’t have it all. Ironically when most women talk about having it all, they mean 'career and family'. I just mean tidy and well.

If I have energy this is where it goes:

1.    On personal care – showering and eating, and spending time with husband.

2.    On cleaning and tidying living area and bathroom, for sanity.

3.    On life enrichment activities in the form of social interaction and crafts/education.

4.    Usually I don’t enter into a fourth category. It is an AWFULLY rare occurrence. It includes non-essential jobs, hospitality, paid employment, and meal preparation.

Anyway, clothes-putting-away is in Category 4. And the clothes are currently away.

What I have come to realise is that being able to indulge cleanliness desires is a luxury.

I am chuffed that yesterday I put on a whites-load, and hung it out, and today I’m doing blacks. I volunteered for two hours today. I don’t have a floodrope at the moment. I went to the supermarket yesterday – even though I walked past the corn chips four times, and nearly called Ben to ask where on earth the olives were, it was exhilarating.

Ben receives very excited, and terribly boring texts from his me while he's at work:

“I cleaned the bathroom today! And now I’m practicing.”

“Just went to the supermarket J”

and his favourite of all:

“What’s for dinner tonight?”

Each day with this illness is such a tremendous struggle, that I can scarce believe it is true when the burden is lifted a little. I am so thankful to be able to venture into Category 4.

The improvement in my quality of life is so delightful that I struggle with insomnia because I am too hyped to fall asleep. I know, it’s ridiculous. I find tears on my cheeks because this reprieve is excruciatingly nice after all the pain.

The excited, boring text Ben got today:

“It’s amazing to have the stamina.”

something incredible happened today

It is both a blessing

And a curse

To feel everything

So very deeply ~ 

Lately my health has been  bipolaresque. I’ve never been through such a volatile and erratic stage in these five years - this is brand new territory, just to keep me distraught entertained and out-of-control. One day I have severe ME/CFS, and the next I am wondering what to do with my new found lack of malaise. My mental equilibrium is seriously disturbed, as all the flies on my wall will tell you. Can we just decide which I am, so I can get my head around it? All I want to know is whether I’m dying or thriving. I wake in the morning, with not the slightest clue what my day may hold.

Yesterday I was a wreck because I got my hair cut and coloured, and this vain procedure took 2.5 hours. It was insane. By the end, holding my head up without my hands was becoming quite an issue. Driving home was mission hazardous, as cars kept appearing out of thin air, terrifyingly close to my own, and my head was hazy with malaise.

Today, however, I bounced out of bed and off to the Animal Welfare Society. My job consists of climbing up and down ladders, cleaning cages, dealing with diarrhea and vomit - and sometimes kittens. I had no intention of working past my 1 hour 20 minutes. I have a feeling that getting to snuggle ten different fluffy kittens majorly boosted some energy-giving chemical in my body, because 1 hour 30 minutes arrived and I still wasn’t fatigued or sore. It was at 2 hours that I started to feel weary – but when I realised the time, I wanted to spin those cats around in joy.

Two hours – in light of this arduous journey, going out and working for two hours is one of the happiest things that has happened to me in months. I am writing here to restrain myself from running down the street yelling this victory to every human and animal on my path. I worked for two hours without pain!

Just maybe maybe maybe I won’t always be ill?  

Found

feelings

Today my dear blog, you are going to pretend to be an empathetic listener while I pour out some...feelings.

Feeling No. 1

I do not like days where strength evaporates in the night, leaving me no note to explain WHY. I find strength's long unexplained departures obnoxious, and I know deep down that this is not a relationship I should rely on for my happiness. But every time he returns, I'm besotted and become emotionally entangled. He departs, and I'm re-gutted. It's very complicated.

Feeling No. 2

I am bored. Not in the six weeks of school holidays way, but the 156 weeks way. I am bored of trying to quell my boredom from dawn {not literally} till dusk. I have been trying to un-bore myself for years but the lack of boredom results in the lack of health. We go round and round in this dizzyingly slow manner and I just hope I don't perish of it. Actually, my thoughts on perishing wax and wane.

Feeling No. 3

I feel trapped in my body and I have asked many skilled physicians to let me out, but no one on earth seems to have the key. I just hoped I'd be out by now, and yeah.

Feeling No. 4

I run out of positivity at times. I say, "I am tired of continually striving to be upbeat and motivated. I want out." And then I cry and cry because out isn't on the menu.

Found

Found

muttering in public

Today I was sitting in the car with Wolfgang my pup, our windows all the way down to prevent us from melting. I saw a six foot man with a protruding tummy coming down the street. He was wearing a polo shirt tucked thoroughly into faded navy track pants. The trackpants were pulled almost up to his chest, with the cords hanging out. I could see that he was talking to himself, and as he passed my window I caught what he was saying.

“My disability.”

Then there was silence. A few seconds later,

“My disability.”

Silence.

I just sat there feeling stunned and sad. I wished he had been singing to himself, or muttering about the beautiful weather – but he was pondering his and society’s perception of himself. I wanted to go and tell him that he was great just as he was, that he didn’t need to sweat it. I wished he didn’t even know he had a disability, that he could accept himself without a label.

I found it hard to forget him, hard to see him so internally disturbed by this view of himself. Then it was dawned on me that I was just like him. In my head, a hundred times a day I mutter,

“My disability.”

I say it when I wake up and face the day at home, and when I get weak cleaning the bathroom, when someone asks me what I do, and when I send another message saying ‘no’ or ‘less’.

I’m painfully acutely aware that I am abnormal, and that people aren’t into abnormal. I absolutely dread that moment of discovery in conversation: that I am disabled.

I wished most for the man not that he was able bodied {I do wish that too}, but that he could walk down the street unconcerned by difference or disability. I just wanted him to embrace being him without all the fear. I wish that for myself. I see all the ‘can'ts’ and ‘no longers’ and ‘abnormals’ and the thought that my life is less valuable than another’s is like a load of lead. Just imagine if the whole motley bunch of us mostly ailed humans stopped adding the requirement of seeming ‘normal’ and simulating ‘ideal’ to our diverse issues.

I think if I lived within the boundaries which allow me to function somewhat pain free, and let go of all the “Help, I don’t have a career!  Help, I’m a social failure!  Help, people must judge me because I can’t do things!” I’d stand a chance at less misery, more joy, more living. I want to live the life that I lead at peace with the path I am on. Enough with the muttering, more of the appreciating, loving, giving and receiving grace.   

the chronically well and incredibly successful

found

Be gentle,

always delicate

with every soul

you meet,

for every single morning

you wake up,

there is someone

Wishing,

silently

and secretly,

that they 

had not. 

Tyler Knott Gregson

An old friend wrote," Wishing you all an amazingly productive and and incredibly successful 2014."

Amazingly productive and  incredibly successful. I tilt my head to the side, and think about these alluring words. 

Resolutions are plastered all over social media at the moment, and some of them bring a wry smile to face.

Eat more dinners at home.

Go on more road trips and adventures. 

Loose weight.

Dream big. 

Change the things you don't like.

  

I hope to stay peacefully put in my quiet home, to gain some healthy kilos, and to let go of this detrimental desperation to change my situation. I want to stop comparing my life to the amazing producers and the incredibly successful and the chronically well - because that's when my simple joy is zapped and discontent stabs me. I wish to endure the snail pace and hype free without bitterness and envy. To etch 'wait' on my heart.

I just want to slowly and gently continue, with a peaceful acceptance and no loss of hope. 

a day in the life of me

I often get asked how I spend my days at home, sans work or infants. This is an example of a pretty good day. Pretty good days come when I follow this simple routine for weeks on end, without too many outings/energy-using occasions.

I spend my days going slow, as slow as my eighty year old grandma. If I go slowly and gently, I can exist with minimal pain and actually improve a little. In the long run, I get can give and enjoy more by going this pace, because it fosters stability. I farewell the run, crash, run, crash cycle.

8.30 – I start to surface after Ben has kissed me goodbye for work. I just grunt ‘goodbye’ {this could also be interpreted by him as ‘I love you’} because I like to stay in my sleepy zone. If I wake up early, I have a guaranteed sick day.

9:00 – I slowly crawl out of bed, and start oil pulling. I swish a tablespoon of coconut oil around in my mouth to pull from it toxins which compromise my weak teeth and immune system. After 20 minutes of swishing, I go and brush my teeth. I detest the taste of toothpaste while eating breakfast, but oh well.

9:30 – I make my breakfast, and it is exactly the same every single day. Routine is a lifeline for me.

corn puffs

rice puffs

shredded coconut

chia seeds

linseed meal

nuts

rice milk

then I drink a large glass of luke warm water to keep my body temperature stable, and swallow about twenty tablets.

10:00 – Now I’m heading for a shower, and there is no rushing and not enough concern for water conservation. My dad would die if he knew I used heat lamps in the summer too. After I’m dressed and mascared, I celebrate my victory with a little sit down and no champagne.

10.30 – It’s time to deal with my postural orthostatic tachycardia syndrome {POTS}. A few days without exercise and my head goes black every time I try to walk. I drive to the gym – and depending on health, this is hazardous as my eyes struggle to focus and prefer to stay relaxed and blurry. I have a program of 20 minutes of cardio on the bike, treadmill, or cross trainer, and 10 minutes of stretching. I leave my fellows sweating it out with my speedy workout, and I feel the best I will feel all day while I’m exercising. I feel alive, but it’s worn off by the time I’m back in the car.

11:30 – I’ve arrived home and it’s time to sit down, sometimes with tea and some sugar/dairy/gluten free treat. Then lunch, where I try to stack on the carbs and protein because my body uses energy the same way I use shower water.

The afternoon is less structured. If I’m still functioning, I’ll do a couple of jobs. Maybe I’ll clean the bathroom, or fold washing, write an email, make an appointment, bath the dog. If I do too much, I get wiped out on the couch with a headache and dizziness.

I need to be restful, so I’ll also read books, make things, water my garden, and do all in my power not to fall asleep. Falling asleep sometimes happens accidentally, but it also brings on insomnia, so I have to very strict with myself.

5:15 – Ben arrives home from work! Wolfie the cavoodle goes psycho with yelping and jumping, because he knows he’s about to get a walk.  We drive to the waterfront or botanical gardens for some nature and catch up time. Then Ben cooks dinner or heats up left overs {he makes incredible food!} and I make a salad, or rest if I need to.  

The evening is eating dinner, reading together, and hopping into bed around 9.30. Ben usually picks me up off the couch and carries me to bed. Then I rest up for a few minutes, hop out and brush my teeth.

The day is done! My favourite days of all are these quiet home ones, where I can be so gentle as to keep the pain and fatigue at bay. Tiring days which escalate into accompanying symptoms are the ones where I catch up with someone, have to go to an appointment, have to go to the shops....those days usually aren’t ‘pretty good days’.

Thoughtful people wonder if going out for coffee with friends might help with boredom, not realising that this ‘boredom’ is the key to feeling ok. I have grown to be content in my own company and the silence of my home, and my body thrives on peace. Others envy my idyllic housewife life. And if I felt well, and could care for my home and see friends, it would be a most luxurious and lazy life. But to me this is a full day. Just as one person’s limit is a 40 hour work week, mine is a shower, gym and a job.