27 April 2021

Let's start with an image from the garden. It's dated, more than a week old and we all know how spring races on.  Anyway, these beauties (wild tulips) are still flowering all over the place.

I am having a rough old time. What with side effects of this new biological while waiting for it to kick in to show me its promised glorious powers. (I am beginning to have doubts. My inner hypochondriac is having a field day.) But just for the record, four weeks of cortisone therapy, starting high and tapering down to almost nothing, have not only revealed glimpses of my former self - free of all the aches and filled with energy, I was in best form - but also confirmed once again the inflammatory nature of this autoimmune disease. Isn't it a pity that cortisone is such a toxic agent. I could get addicted to it. But for now and following doctor's orders, it's almost gone, I am down to 2.5 mg for another couple of days and the old stiff and tired woman has come shuffling back into my life. And that's not even mentioning the gruesome inflammatory bowel scenario.

Wisely , I postponed my appointment with HR until last week. Any day earlier and I would have thrown any offers of earlier retirement out the window. Me? I would have laughed, look at me, I am in great shape. 

Whereas now, I am stuck with the same old same old. Should I, will I, can I, etc. and on days like today, how much longer, and even louder: when?

 . . . the morality of illness is about seeking to do the right thing, but no single right thing is usually available. Thus 'rising to the occasion' involves living with a combination of uncertainty about what is being done and necessity to do something, since even inaction is a form of doing. The morality of illness means responding to the question: "How do I become the sort of person who has to live with a decision that I never should have had to make?"

Arthur W. Frank, Illness as moral occasion: restoring agency to ill people (in: Health, Vol. 1, No.2, Oct. 1997, pp. 131-148, to read the entire essay, click here)

Anyway, I have a bit of a time to think and throw the dice. A few more consultations with experts. 

Lovely music helps.


Colette said...

Retirement is such a hard decision to make. And your situation is even more complicated. Retirement is quite wonderful; however, one needs "enough" money in order for it to continue to be wonderful. Figuring out what "enough" translates to is the hard part.

Ms. Moon said...

I am glad you got a brief respite. How wonderful it must have been but how hard the crash down must be.

Anonymous said...

I am glad that you had that respite and so wish that Cortisone didn't have to be so limited in how long you can take it. Retirement is a hard decision. I hope you find peace and comfort how ever the future unfolds for you.
Lovely music. Thank you for that.

beth coyote said...

Dear Sabine-Much love and compassion from this side of the pond. Cortisone is so lovely but...I still can't quite retire, still hanging on. The money is helpful!


Allison said...

I am so sorry this sucks so much for you. Tapering the steroids is depressing, each day is worse than the last as the levels go down. I wish science would come up with something to help without the side effects.

My life so far said...

Chronic illness wears people down, erodes the soul. I'm glad you had a brief respite with the cortisone but it must make it all the harder to go back to life without cortisone.

I've decided to retire in 18 months. I'm worn out physically and mentally and I'm in the process of getting my husband on board with me retiring. He doesn't want to retire which is fine for him but I need a change.

I'm reading the essay but I wanted to leave a remark before I finished it. I had to laugh because the essay comes from the University of Calgary which is where I went to school. Small world.

ellen abbott said...

how cruel to give you your life back, to remember how it feels to be healthy and then to take it away again. maybe not cruel, perhaps a gift? I don't know. the ailments I go on about are nothing. I count my blessings. science produced a miracle of vaccines for covid. why can't it do that for you. oh, Sabine, I wish you good health.

Linda said...

"Rising to the occasion". it seems to me. is what we call living; at least for most of us. Always wishing for the best possible outcome but settling for 2nd or 3rd or 4th best.

I rise and drop and rise and drop and need to be ok with that.

Wishing for you relief and stamina Sabine.

molly said...

I hope the experts come up with something soon to get you back to some semblance of your best form that will be more lasting.
"...even inaction is a form of doing." Food for thought there.

Elizabeth said...

I can only understand your predicament in small part -- when my daughter Sophie's seizures subside for a while and then come back, it seems almost more difficult at first than any other time. That too, though, passes as everything passes. I wish you health and healing.

am said...

"... The personal and family history she uncovers is not an answer but is the ground of a moral future. The only resolution these stories offer is the achievement of personal resolve to go on living with the continuing excavation of complex suffering ..."

Thank you so much for the link to the compelling essay by Arthur Frank and the link to Padraic's story of being unwell for years after a viral illness. I was reminded that your illness began in a similar way to his.

You've been in my thoughts as you think all these things over.

Your wild tulips are beautiful.

Joared said...

That is a lovely wild tulip — never knew there even were wild tulips.

Wish you could have a med to give you more of your life. Wonder if anyone is engaged in creating such?
I recall when my husband appreciated the benefits of cortisone, especially the first shot, but he was only allowed 3 in total and the next two seemed less effective, he said. .

Secret Agent Woman said...

That's a tough decision. I am hoping I'll magically know when it is time.

(I have never even heard of wild tulips. They are lovely.)