Friday, 22 April 2016

The 'R-word'

The 'R-word'.

Don't even think about it!

(It's dangerous.)

A few weeks ago, I was standing (yes, standing!) at the stove, stirring the dinner, my senses revelling in the steamy, spicy fragrances of a favourite curry dish - a moment to savour; exhilaration and joy; an example of finding small pleasures in every day.  These moments make life worth living.

Enveloped in this blissful epicurean experience, I took a moment to celebrate the sudden realisation that I was actually standing to cook dinner, not sitting (or worse, being unable to cook at all due to disabling fatigue).  My mind wandered back to the activities of recent weeks and reflected on how well I had been. 

It had been a busy time, as raising a family of three children always is.  My days had been filled with taxi-runs, trips to the city for appointments, therapy sessions, after-school activities, gardening, home administration and maintenance (catching up on years' worth of neglect due to severe illness) and shopping for items that have been longed for (like clothing) but without time or energy previously to go out and get.

Not only that, I somehow managed to have some energy left over to take in some Fringe* performances!  Wow!  That hospital treatment last year has done wonders. Compared to where I have been on my illness journey, it seemed incredible. I wish I could describe the improvement as miraculous but there were enough reminders about the underlying medical condition to stop me from becoming totally  carried away with euphoria about my new abilities.

Yes. The medical condition. Oops - conditions (plural):  mixed connective tissue disease, lupus, sjögren's syndrome, raynaud's phenomenon, addison's disease / hypoadrenalism, adenomyosis, endometriosis, asthma, etc. the list of diagnoses kept growing ... (and I refuse to capitalise any of their names as a sign of disdain.)

I remembered that most of these conditions are relapsing and remitting by nature and allowed myself to yearn:  aah...Remission! I wonder how that is defined in my case; what does it look like?  Could this sudden burst of almost-normality be the beginning of an extended Remission?  "After all," I reasoned, "I lived a very amazing, active life for plenty of years at a time in my younger days. Maybe,
since it's theorised that I had been born with this broken immune system, those good times were periods of Remission?"

Remission. Oops! Don't even say that tantalising R-word ... I dared to think it.

Oh no! STOP IT!

"Haven't you learned not to go there, Jodie? It always ends up in tears!"

Well, that did it!  I knew it was too good to be true.  Within a week it all came crashing down and I found myself bedridden for 8 days.  I couldn't even sit up in bed. Any vertical postures had me reeling.  I couldn't read, crochet or think straight or do anything but remain horizontal in my bed.  What a frustrating waste of time!

Is this my punishment for wanting to get a slice of my old life back?  Was I too hopeful?

Thank goodness, I am recovering slowly (and carefully) now but the lingering fatigue and weight loss have swung my pendulum of thought the other way and I lament whether I've 'done my dash' with the recent energy boost.  Do I succumb to the limitations of chronic illness again (as if there is a choice)?

It would be easy to follow that line of thought but I strengthen my resolve with the hope that if I had experienced a significant improvement once, perhaps it can happen again.

Always hope.

... and curse the R-word.

(Don't even think about it. It's dangerous.)

*The Adelaide Fringe Festival

Related Posts & Pages on Lupey Loops

"A Secret Crochet Confession", 18 February 2016:

"A Quick WIP Round", 22 October 2015:  

"Lost Without Lists", 2 September 2015:

"Hooks, Needles and Nurses", 23 July 2015:

Lupus (SLE) Resources page:

MCTD Resources page:

Scleroderma Resources page:

Sjögren's Syndrome Resources page:


  1. I hear you...!!! I'm starting to wonder if my bio is starting to fail. Trying not to have it be my main focus 24/7, but at the same time need to monitor what could indicate long term changes... Also trying not to think about the possibility of having to face another big drug change, with all the uncertainty that can bring. It's a bloody rollercoaster!!!

    1. Hugs to you, Karen. It's a great source of energy consumption, always trying to second-guess what is really going on... that might be the subject of another blog post shortly! No matter how much one tries to ignore it, it is always in the back of one's mind. I try very hard to appreciate each moment while I am in it. Like riding a roller-coaster, if you pardon me using your metaphor, sometimes we just have to hang on and experience each twist, turn, rise and fall, not thinking about what is coming next because it might be too scary to contemplate!
      I appreciate your moral support very much! xx

  2. we have to celebrate the good days, persevere through the tough ones and know that there are good days ahead. Always more good days. I hear you about the R word, or god forbid the C word (cure). Hoping your days are getting better bit by bit, stitch by stitch!

    1. Hi Mary Anne! Thank you for your kindness. Seeing your message here is a comfort because I know you have struggled and learned so many coping strategies. A C-word would be fabulous - I'd be first in line!
      I love your way with words, especially the 'stitch by stitch' - another good metaphor. It will take me some time to catch up on blog reading again but I am trying to get back to a more sedate pace and hoping to get more stitching in again. Thanks for your online friendship. xx

  3. Oh my dear friend, so much to think about in this post. I am sending you positive thoughts for a life free of these worries. I was diagnosed with adrenal fatigue many years ago after cancer treatments, I found out I had probably had it for years before that too. I have kept it at bay most of the years since my diagnosis but every once in a while it reminds me it is still here. Nothing like you are going through that is for sure. Take care of yourself my friend.

    1. Oh dear, Meredith! Adrenal fatigue is not good. I am sorry to learn that you have first-hand knowledge of that condition. Major adrenal failure is the complication I most fear because it is life-threatening. That, combined with the connective tissue disease, turns me into a rag doll.

      How do you keep adrenal fatigue at bay? What are your reminders? My reminders are episodic weakness, breathlessness and sudden or extreme fatigue. Avoidance of that scenario is my no. 1 motivation in life and I balance my energy expenditure very carefully most of the time - until the rules change and I start to feel so well and capable: then the line between confidence to do more, and overextending oneself disappears!

      Should I be pleased that this post was thought-provoking or should I say sorry for it being burdensome? There was no intention to worry anyone! Sorry if I did. I thought it would be prudent to explain my recent absence from blogland but also shine a light on the issues affecting chronic illness sufferers.

      I'm glad you have been so well for a long time. You must be doing it right. :-)

      Take care. Hugs! xx

  4. Oh I know what you mean, life is like a roller coaster. I climbed out of a hell-hole and peeked out into the sunshine. I got so excited and wanted to live all the people I saw. But then I slipped again, fell back into my dark bag of diagnosis and my body seemed to go to pieces again. Pain is hovering around me like a thick fog....but through it I can just see...that pile of sweet glorious fabric on the desk. It will wait, and I am going to hope and trust that better days will come again and I can play with it and create. So sorry to hear that you are having tough times, better ones will come again. I shan't mention the R - word...only think it. Hugs and blessings, Pam in Norway xx

    1. Dear Pam, Thank you for your beautiful sentiments. I am so sad that you are suffering at the moment. Your ability to use the fabric as a beacon of light is important. That ability to disassociate from your pain for even half a minute to find something positive to focus on, something to look forward to, will get you through the dark days. May the better days come around soon! Healing Hugs xx

  5. Oh Jodie, what a disappointment to crash back down and so hard too! It's just so difficult not to take advantage of the good times and do too much, there's just something that wants to kick back, pretend things are normal and do all those things that NEED doing. Sending you very gentle hugs and I hope you pick back up really quickly this time. x

    1. Oh Sharon, you 'got it in one'! I can totally relate to your words "pretend things are normal" - that's a dangerous but thrilling game: a bit like footy except there are no umpires to tell you when you have gone too far! The good news is that I am regaining my strength and mobility quickly but fatigue continues to hit hard. At least the good times lasted long enough for me to get a lot out of them. Thank you for your gentle hugs. Hugs to you in return xx

  6. Thank you all so much for your beautiful words. I am really touched by everyone's kind and caring responses. It truly is a comfort.

    I respect that you have (had) your own battles and yet still have positive energy to share. Tough times have given you wisdom and a special perspective; your insights are most appreciated. I'm sure your comments will help more people than just me!

    I am lucky to have the sweetest set of blogging friends.

    Thank you!

  7. Dear Jodie, I am so sad to hear that you've felt all bad again. But don't give up. There will be better times to come again. I am pretty sure of this. You have to believe in your strengh! My thoughts will accompany you these days. Take care, Viola

    1. Thank you, Viola, for your kind strengthening thoughts! :-)
      Don't worry, I'm not ready to give up and you are right about the prospect of better times. How we define 'better' is a matter of relativity though! ;-) Right now my batteries are approximately half full (ranging between 30-50% on my own wellness scale) where before the recent crash I felt like I was operating at a fabulous 85-90% of what I'd consider 'pre-illness' levels. Three steps forward, two back, but ultimately continuing to move forward. Best wishes and hugs to you, Viola xxx

  8. What a journey you are on, I can only imagine what you are going through. I care for my elderly parents my father has COPD and a great list of other things. My husband has RA and stills disease we have learnt to live one day at a time and enjoy whatever life throws at us. I pray for pain free days for them both. Take care of yourself. Thankyou so much for your visit and kind comments.

    1. And you! :-)
      'One day at a time' is a good mantra.

  9. My dear friend Jodie,

    I am sorry to hear that you have been unwell lately, but I do hope you will soon bounce back with more energy and wellbeing. I'm sending you love and get well wishes.

    I answered your request for more details about the books and magazines I bought - today I wrote a new post! Hope you like it!

    Thanks for telling me about the problem with the pinterest widget, I will try to look into it. It's not good if it sticks out, is it?

    Have a nice weekend,
    Ingrid xx

    1. Hi Ingrid,

      Thanks for your lovely message and good wishes. I look forward to finding out about those magazines. I haven't had much chance to get online, just quick flying visits,but am looking forward to taking a slow Sunday to catch up on all the news. Thanks for letting me know about your new post. Good luck with the Pinterest widget. I wish I had some answer for you but I am afraid I am not that technical when it comes to blogging.

      While I don't feel that 'bouncy' or energetic (yet), I am working hard to regain my fitness. I worry that maybe the infusion from last year has been all used up!

      The weekend is here and the sun is shining beautifully but expecting rain later. Good for going out in the morning and good rain for the garden too. Enjoy your weekend too.

      Hugs and love,