Wednesday, February 12

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.”

Wednesday, February 5

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?