Friday, 20 December 2013


Major pain + fatigue day 
1:00 p.m. came and went and I was still in bed, after drifting between dozing and daydreaming.  It is after 4:00 p.m. now. I’ve managed to get myself to the couch. 

Teen walks through the room: “Now this is a turn of events–normally it’s me still in my ‘jamas’ at this time of the day!” 

I reassure her that I’m not going anywhere.  Couch is fine; although I feel like there isn’t much choice when the pelvic pain has me weighed down right here.

At this busy time of year, I would rather be doing other things. There is so much to do! It’s the 20th of December already with no cards written or sent; or presents wrapped, made or bought yet!  It feels like such a waste of a day, until I remind myself that taking care of oneself is important and never a waste.

Perhaps the joint pain etc. is a reaction to this crazy week of 40˚C temperatures, rigorous physiotherapy, trying to do too much (which is not as much as one might imagine) or perhaps I was too quick to celebrate a week of feeling relatively well and spoke too soon. The mere mention to a friend of "feeling well lately" might have jinxed it.

Ah well, it follows that after a mad year of intense activity, some downtime is required.  I completed the last crochet project (the sneak peek one) on 12 December and decided that there will be no more crochet for the rest of the year to give my arms, hands and heart a break; time to recover, take stock, sort things out and prepare for Christmas and the New Year.

As I write this, I look at my hands and arms and notice the skin on my right arm looks like “crocodile skin” right up my forearm and just past my elbow. “Is this part of the scleroderma side of my MCTD*?”  I wonder as I notice the left arm still looks relatively young and smooth. (The latter observation, a slight comfort.) Scleroderma literally means thick skin, except the thickening caused by scleroderma can cause all sorts of other health problems. 
 My hands keeping warm in fingerless mitts (September 2013). Warmth eases joint pain.
 Pattern: "Easy Crochet Wristers" by Kim Kotary (Red Heart)

Crochet is one of the ways I keep my hands moving to try and counteract the effects of MCTD.  Lupus can cause joint inflammation, resulting in painful and stiff hands and fingers.  This year I have had occasional inflammation of my knuckles. At other times the skin over my knuckles has become raised, thickened and hard. It was very scary earlier this year when the skin on my right wrist thickened up so much, I was barely able to bend my wrist at all.

There seems to be no rhyme or reason to it, but fortunately it settled down and I can move again. It is hard to know how much is caused by stress on the immune system; e.g.. doing too much activity, exposure to sunlight (lots of driving errands this year), not enough rest etc. or how much is just plain getting older or MCTD doing its thing regardless.

The forecast today was for 38–40˚C (the third day in a row). I got through a lot yesterday including some grocery shopping early in the day, household bookwork, cooking, dishes and some Christmas shopping late in the evening (after 10:00 p.m. when it is cooler yet it was still 28˚C!).  Yes, I feel I have earned some downtime and today is a good day for it.
The garden during milder weather.
My dwarf fruit trees are being lashed by heat and high winds today.

I look outside and notice the wind picking up; some clouds; the cool change is arriving. The vicious wind that is battering my fruit trees and drying out my vegetable garden will bring an end to this week’s searing heat.

Tomorrow will be cooler and just right for household chores and Christmas preparations. Yes, that’s what will happen tomorrow.  But for now, I am giving in to the pain and fatigue; I accept and appreciate…



Links & Further Information

Fingerless Mitts

My fingerless mitts were crocheted with a 3.00 mm hook, using approximately 136 metres of Moda Vera "Noir" in Black Mix (Col. #80251598).

I worked from two skeins, one for each mitt.  If you want the mitts to have matching stripe patterns, start each mitt with the yarn at the same point in the variegated colour pattern.

Make sure you are working both skeins from the same ends; e.g. both from the centre or both from the outside.

Easy Crochet Wristers free pattern (no. LW1919, WR1919):

Kim Kotary's website:

Kim Kotary on Ravelry:

Red Heart:

Autoimmune Disease

Arthritis SA:
Lupus/Scleroderma/Sjögren’s SA: A Branch of the Arthritis Foundation of SA Inc., 118 Richmond Road, Marleston  SA  5033.
Lupus/Scleroderma/Sjögren’s SA Facebook page Lupus, Scleroderma, Sjogren's Support - South Australia:
*Mixed Connective Tissue Disease (MCTD):
Scleroderma Foundation (USA):
Scleroderma Society of Canada:
Scleroderma Society (UK):
Further information can also be found in the links of:

No comments:

Post a Comment