Spending Spoons like a Drunken Sailor

For most of us in the auto-immune world, the Spoon Theory is the language we use to communicate our energy levels and how exhausting it can be to have a chronic disease. I've not used it much, but it's a powerful metaphor for how we get through a day and try and allocate our energy.

I've been on a new biologic, Xeljanz, for the past three months. I've also started back on Leflunomide  around the same time and am still taking the ever-present steroids. And throw in some form of pain meds as and when needed - more often than I'd like, but a girl's gotta live.

I'm approaching this blog entry slowly, tip toeing up to the topic, not wanting to disturb anything. Because I may actually have some energy back. Maybe. I may be taking less pain meds. I may not have super swollen feet 24/7 that are hard to walk on. I may actually be feeling a bit better. Possibly. But shhh. Don't tell anyone so I'm not jinxed.

So, of course, I'm spending spoons like a drunken sailor!

Why not? I've been feeling pretty crappy for - frankly - several years and this is the first time in recent memory that I don't have to meter out my energy worried about how I'm going to make it through the day. I can make it to the end of the day, and still have some spoons left. It's like I'm almost a normal person. Almost.

But I'm an over-doer. I try and cram too much in. And I'm paying for it this week. Work has been busy with lots of stress, long hours and weekends, with no real relief in sight. Home is busy with hockey time two, competitive swim schedule, dance, homework and trying to feed everyone and ensure that they are in the right place at the right time with the right equipment (trickier than you think!). However - I'm not as bad as I've been in the past under similar circumstances. Again, don't tell my body that. I'd hate for it to revert back to it's usual state of flare.

As every good Canadian knows, Gord Downie, lead singer of the band the Tragically Hip, passed away last week. The Hip were an integral part of my musical life since high school. His poetry, expressed through song, provided support, meaning and insight at various points in my life.

One song that stands out in light of this post is "Firework". It's my go-to Hip feel better song (apologies for the language). It's about how temporary things can be - they can last as long as a firework. I'm hoping upgraded spoon allotment is more permanent.

The reason I write

Oh, it's been a while. Like a year and a half. I've been busy being a mom, full time HR guru, Parent Council President, hockey mom, swimming mom and working through all this with a very flare-y arthritis-ridden body. It's been a roller coaster of flares, prednisone (up to 50 mg per day!) and failing out of 3 biologics. Goddamit. I'm crying just writing this. 

I'm trying a new style of writing with this re-invigoration of my blog - less editing, more stream of conscientious, more raw honesty. We'll see how this goes. 

We had some people over on Saturday - hockey team parents - for a get to know you gathering. Nice people, good event. We talked about kids, work, hockey and then started discussing where we went to school and what we studied. I have a writing degree and someone asked if I write outside of work. Well, I offered up that I had kept a blog chronicling my RA journey. 

One of the ladies eyes lit up at the mention of Rheumatoid Arthritis and launched right into all the diet changes she's made that have taken her off all her meds and now she has no symptoms for her Psoriatic Arthritis. I commented that I had tried that path with limited success. She pursued the conversation.

Sigh.

I tried to find my grace as a host and a human being, but I’m sure a trace amount of annoyance came through as I felt needed to defend my health choices to a total stranger, in my house, in front of my guests. I used words like “nine shoulder surgeries” and “severe rheumatoid arthritis” and “26 years”, but no – apparently diet changes and going gluten-free are going to solve all of my problems and get me off all of my meds. 

This is why – for years – I didn’t tell people about my RA, didn't write about it, didn't Facebook it. Nothing. Nada. I don’t have the energy or patience to educate or explain my disease to strangers who really don’t get it. Nor should I feel the need to defend my health choices to complete strangers. But I did feel the need to defend my choices. This conversation upset me so much, I’m back at the keyboard looking for some therapy.

I have tried alternative and traditional therapies, diet changes, supplements, acupuncture, laser therapy, massage therapy, a complete elimination of all grains and dairy – all with minimal to no success. The effort required was not worth the minuscule improvements I saw in my health. And - frankly - it's none of anyone's business how I approach my health.  

It's four days later and I'm still frustrated by how much this has gotten under my skin. One of my favourite songs from the past year has been "Float On" by Modest Mouse. It's about moving on despite setbacks you might have. That's me. Trying to float on with my RA.