Sometimes the Best Thing You Can Do Is Give Up Hope

I had a phone appointment with Julie, the nurse-practitioner at the rheumatology clinic this week. She wanted to see how things were going.

I’d switched meds yet again a few weeks back and the old ones wore off before the new ones kicked in, triggering a frantic call for help and a trip to London for cortisone shots. Fourteen needles later, I went home with the hope that this would tide me over until the new meds could do their stuff.

It lasted six days, during which I was so dizzy I was afraid to get out of bed.

I had a blood test on Monday and my numbers are pretty good. I’m not anemic and my inflammation marker is well down.

And then I told her that I’m still in a lot of pain and we regrouped.

“You’re probably never going to be pain free,” she told me. “I think the best we can hope for is to get your pain down to manageable levels while keeping you free of anemia.”

That’s a hell of a thing to hear on a Tuesday morning while lying in bed in your underpants.

But I’ve come far enough on this particular path that it sounded OK to me. It sounded like a good goal.

I won’t be getting better. I won’t ever be pain free. I won’t be going back to work at the bakery. Or anywhere else that requires me to put on shoes and stick to a schedule.

So. Now. How shall I live?

I’ve done this before. This isn’t the first time life has said nope. I went through the same process when I had to face up to never having children. And yes, it IS unfair that I have to do it again and yes, I WILL cry about it. You get to grieve your losses.

Back then, I sat down and thought, “Why do I want to be a mum?” And it was mostly about having love to give and wanting to look after people and I was able to transfer that love and care onto family and friends.

This time, the question won’t be, “Why do I want to be healthy?” The only reasonable answer to that is, “Well, d’uh!”

Instead, I’m asking, “How do I live this life?” The one that was presented to me over the phone earlier this week.

The thing I realize about having hope and giving it up is that when you have hope, you’re waiting. Waiting to get pregnant, waiting to get better or for your ship to come in or the right partner to come along or whatever it is you hope will happen.

When I give up the hope, I become much more present, focusing on making what I can of what really is, not what I hope will be.

I’ve spent the rest of this week puttering around, tidying and working on small projects as my strength allows, having heartfelt discussions with Alan and making tentative plans for a Substack newsletter (would you subscribe?) I even went for a walk with Alan for the first time in months.

Because – because I wanted to and because I’m no longer trying to spare my energy for the great healing that was never going to happen. I can expend my energy, day by day, on the things that seem most important in the moment.

Somehow, accepting that I will always be IN pain is helping me to learn to live WITH pain. Of course, the CBD gummies and cannabis cream my friend Leanne sold me and the over-the-counter stuff Julie recommends are really helping with that. I’ll basically be off my tits most of the time for the rest of my life and I’m fine with that.

It’s possible that I don’t fully understand hope, that I’ve been doing it wrong my whole life. Maybe accepting what is while leaving the tiniest door open for the possibility of something better is how hope is expertly done. I mean, if ever there is a cure, I will gladly take it. But I’m not going to waste any more time waiting for it.