I've been awake since at least 4 a.m. after tossing and turning for hours on the warmest April night since I don't know when. The temperature remained above 21° C (70° F) overnight which is unheard of, for this time of year.
Easter always heralds beanie and scarf weather for me–why are we getting summer nights in autumn?
When I wasn't alternating between 'too warm under the covers' and 'too cool without', I was writhing with discomfort and pain–yes, I know that medical people think these terms are interchangeable but they actually are different things–thanks to Mixed Connective Tissue Disease (MCTD) doing its thing so I couldn't settle at all.
So here I am on a Wednesday morning with grand plans to get on with things and all I can do is gaze bleary-eyed across the room, going over the list of things I could be doing and realising that I'm too tired and groggy for any of it.
Meanwhile a headache in the distance is waving and trying to grab my attention as I do my best to ignore it.
On my list are basic things like household chores and then more desirable activities like:
- finishing the baby blanket - can you believe it is still not done?
The slippery satin fabric is doing my head in! - finishing items for Gallery M (thank you to the lovely customers who purchased scarves of mine recently - it helps local artisans)
- preparing my patterns for publication and sale
- making plans for Maker Faire Adelaide
(Save the date! 5 November 2017) - preparing an Etsy shop (named Lupey Loops, naturally!)
- planning a project to enter into a local show
(already I missed the boat on one this year!) - developing the burst of creative ideas for future projects, and
- blogging it all, of course!
When my body and brain are tired, it all feels too hard.
"What was I thinking?"
"Was it too ambitious in the first place to even think I could achieve these crochet goals withMCTDmctd (don't give it the honour of capital letters)? It sits there, waiting in the wings; waiting to swoop in, just as one is having a good time, to put a stop to the fun; just to remind everyone who's boss (or who wants to be boss)."
"Am I asking too much of myself; to want to do more with my life;
to expand my passion for crochet; to follow those interests that make me 'me'?"
"Should I retreat to the drudgery of doing 'not-a-lot' in order to avoid flares and 'stay out of hospital' (and suffer the boredom from social isolation)...?"
"...or should I pursue the activities that make me feel like I am properly 'living' and participating in my community, despite the physical consequences?"
As the self-doubt lingers, I reflect on my predicament and thoughts turn into strings of words and sentences.
Well! If this blog post is going to write itself in my head, I might as well type it and that's today's blog post done!
I know it isn't the latest crochet creation, tutorial or news but this little rambling stream-of-consciousness blog post is an example of what it is like when chronic illness interferes with my crochet adventures.
Adventures…
adventure:(noun)*
3. a bold, usually risky undertaking;
hazardous action of uncertain outcome.
3. a bold, usually risky undertaking;
hazardous action of uncertain outcome.
Hmmm... can't argue with that; it sounds like everyday life is an adventure when you put it like that, trying to find the right balance between energy expenditure and rest to avoid trouble.
Take my "train-wreck-Tuesdays" for example. They are the reasons for getting so behind in my activities.
It seems that every time something comes along that I need to do lately, it happens on a Tuesday. This coincides with a very physical afternoon of hydrotherapy.
With mctd, anytime I do anything that requires physical effort, the body will respond by 'collapsing in a heap'. It starts with breathlessness and then my limbs go weak. The fatigue is like nothing else–not mere tiredness, no!
This fatigue will grab you and smother you, knocking you unconscious for its own predetermined time, until it is ready to loosen its grip.
"There is no resistance."
So there it was: another Tuesday afternoon spent as a rag doll, dead on the sofa after a morning taken up with an impromptu, unavoidable circumstance that dragged into the afternoon, thwarting my planned rest which was supposed to happen in between that and the compulsory afternoon therapy session.
Now it is Wednesday: the day I like to keep clear for me. It's my one 'day off' in the week where I don't have appointments, support workers or other people in the house. That's just as well since this particular Wednesday was shaping up to become another "wasted-Wednesday" in both senses:
- a day spent totally exhausted and broken and physically 'wasted'
- a Wednesday with nothing to show for it, having time to do things but no capacity to do them, an entire day's waste of time.
That's why I still haven't finished the baby blanket (I was going to sew the backing on today with the good morning light but my eyes cannot focus), still have other crochet works in progress, and not much news on the blog about a bunch of newsworthy topics. (I hope they still will be newsworthy by the time my brain is sharp enough to publish them!)
Can you read my frustration between the lines? Oh well, no one ever said that adventures are smooth sailing all the time. If they were, they wouldn't be adventures, now, would they?
Looking at the other definitions of adventure, it is clear that I have chosen the adventurous road so far.
adventure:(noun)*
1. an exciting or very unusual experience
2. participation in exciting undertakings
or enterprises
or enterprises
3. a bold, usually risky undertaking; hazardous action of uncertain outcome
4. a commercial or financial speculation
of any kind; venture
of any kind; venture
5. (obsolete) a. peril; danger; risk. b. chance; fortune; luck
Now all I need to do is work out how adventurous I want to be (or can be).
I'd better sleep on it. Wake me on Thursday!
Tell me about your adventures!
Tell me about your adventures!
You are welcome to leave your thoughts in Blogger's comment boxes below or email jodiebodiecrochets@gmail.com
I'd love to read them!
* Source: Dictionary.com, http://www.dictionary.com/browse/adventure?s=t
Related Posts on Lupey Loops
"Save the Date: Maker Faire Adelaide 2017", 29 March 2017:
http://lupeyloops.blogspot.com.au/2017/03/save-date-maker-faire-adelaide-2017.html
"Blue Skies and Blue Satin", 18 March 2017: http://lupeyloops.blogspot.com.au/2017/03/blue-skies-and-blue-satin.html
"Silk Mohair Scarves 2016", 18 August 2016: http://lupeyloops.blogspot.com.au/2016/08/silk-mohair-scarves-2016.html
"Out of the Crochet Comfort Zone", 9 July 2016: http://lupeyloops.blogspot.com.au/2016/07/out-of-crochet-comfort-zone.html
"Introduction & Welcome", 22 November 2012: http://lupeyloops.blogspot.com.au/2012/11/introduction-welcome.html
http://lupeyloops.blogspot.com.au/2017/03/save-date-maker-faire-adelaide-2017.html
"Blue Skies and Blue Satin", 18 March 2017: http://lupeyloops.blogspot.com.au/2017/03/blue-skies-and-blue-satin.html
"Silk Mohair Scarves 2016", 18 August 2016: http://lupeyloops.blogspot.com.au/2016/08/silk-mohair-scarves-2016.html
"Out of the Crochet Comfort Zone", 9 July 2016: http://lupeyloops.blogspot.com.au/2016/07/out-of-crochet-comfort-zone.html
"Introduction & Welcome", 22 November 2012: http://lupeyloops.blogspot.com.au/2012/11/introduction-welcome.html
Other Links
- Gallery M, City of Marion, South Australia: http://www.gallerym.com.au/
- Lupey Loops, Etsy shop: https://www.etsy.com/au/shop/LupeyLoops
I SO hear you Jodie...those nights when sleep is intermittent or absent completely, and then the day afterwards when NOTHING functions. It's SO hard to be philosophical about them, because dammit, we want to be able to function. Damned diseases. I do hope you feel better soon, and can get back on track with your list of things to do. xx
ReplyDeleteThank you Kaz, your solidarity is appreciated. I wish that you don't have too many of these days and wish that this scenario didn't resonate with you but it helps to know that there are friends out there who truly understand.
DeleteI haven't been able to sleep all day but now that the day is closing and dinner needs to be made, the eyelids are getting heavy! Typical! A nap now and late dinner is preferable to setting the house on fire or burning the dinner so guess what I am about to do.
I've learned that there is no point in trying to push through this level of tiredness because, if I do, I will spend the same amount of time doubled tomorrow undoing the mess I make today. It's much better to just hold off until conditions are better and then I can achieve the same much more efficiently.
I hope you are having a better day and thanks so much for your support. It helps. Here's to keeping on track despite everything! xx
Hang in there! We both need to invent something that allows us to do six different things at once but only taking up the energy of one thing.
ReplyDeleteAt least right now it is raining and we won't need to water the garden if it rains enough!
Ooh! I like the idea of that invention, Cat! I realise in the light of a new day that perhaps my goals are a little lofty.
DeleteI am hoping it may be a case of "We can have it all, but not necessarily all at the same time." There are so many things that interest me that I would like the chance to play with them *all* at some stage. When illness limits opportunities, it leads to a sense of urgency and impatience within me because I want to make the most of those 'well' times.
The rain is most welcome, even though I need to go out in it today. This year, I have been well enough to pay attention to the vegetable garden and I know my zucchinis, capsicums and winter root vegetables will be loving the rain.
As we have a week of stormy weather forecast, I hope you don't get too wet in your travels this week, Cat.
Hanging in there...
Jodie x
I always remember that adventure starts with the word advent. Beginning. Just begin. Life is an adventure. The good and the bad. I do hear the frustration in our voice and I am here listening and cheering for you and knowing that better days will be in your future. Be gentle with yourself.
ReplyDeleteThank you so much, Mary-Anne. You have brought a new perspective today which reminds me of the adage, "A journey of a thousand miles begins with a single step." Already, today is a better day.
DeleteThank you also for the reminder to 'be gentle'. It is the perfect advice to calm the frustration (which lately has been tinged with mild panic) that occurs when I sense that the 'days are slipping away'.
You always know just what to say! Thank you. x
Once again I thank you for your honesty - It's so difficult to explain why sleep doesn't come at the "right" time and not to be angry about the lost time. I walked around my house today looking at all the projects I've planned to have done, half not caring. When I read your blog I do somehow gain strength in not being alone in the fatigue and frustration. Trying to capture the small victories is so important so that's what I'll try to do. Again, thanks for your ability to express what I so often feel.
ReplyDeleteDear Liza,
DeleteThank you so much for your thoughts and kind words. I'm sorry that you often feel the frustrations of fatigue as well. It isn't easy.
I'm glad that you can find strength in the knowledge that you are not alone in your struggle.
It is reassuring for me to know that my blog is helpful in articulating your feelings so thank you for saying so.
I sometimes worry about sharing my negative emotions on Lupey Loops because I am not looking for a pity party and I don't want my blog to come across as a "whinging space" but sometimes, life is what it is and it would be disingenuous to ignore those times. That's a reality of life with chronic illness.
Finding the words to express our feelings is half the battle in coming to terms with our situations and solving problems. If my words can help others, then that's a positive thing!
Thank you for your valuable feedback. You are right about capturing the small victories. Here's to the sunshine penetrating through the fatigue fog.
Hugs to you!