Ending the week on a flat battery

Ever had that experience of coming home from a lovely relaxing holiday and being tipped immediately back into your pre-holiday life without time to catch your breath? That was me this week. 

I had to travel to run a workshop, a stressful one at that (senior people, poorly defined outcomes, high expectations); and the rest of the week was just one thing after another. 

Sunday morning arrived and I hit the wall. I couldn’t get going, then realised there was no need to. So I stayed in bed. 

It’s hard to describe this kind of fatigue. Very familiar to rheumatoid arthritis sufferers, it is a different beast altogether from “feeling tired”. When I’m tired, I sleep and I feel fine when I wake up. When I’m fatigued, getting out of bed to go to the bathroom takes a huge effort and thank goodness I can sit down once I get there. Fatigue is more like the tiredness you feel when you’ve got the flu: you know one night’s sleep isn’t going to fix it, it’s settled into your whole body, and you’re just going to have to stay in bed because anything else is an impossibility. 

The difference is that I don’t have the flu, and when I get up tomorrow I’ll feel like I’m coming down with the flu instead of having a full blown case. This will feel like an improvement. But it’ll be compounded by the weekly dose of methotrexate, a particularly nasty but effective drug whose side effects include fatigue (yes, more), nausea, and the infamous brain fog that leaves you feeling a day late and a dollar short. 

By Wednesday I might be feeling a bit perkier. Who knows, next weekend I might get to spend both Saturday and Sunday out of bed. It’s a good thing I’m comfortable with spending the vast majority of my time alone since fatigue is not much of a spectator sport. 

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A damp holiday

I didn’t take any time off over the Christmas-New Year break, thinking I’d go away once schools were back and the weather settled down. It’s been a miserable summer, wet and cool, and beautiful days few and far between. 

Two events coincided that pushed me to take a week off. My PhD supervisor and his wife visited for the first time in 17 years, so I took a couple of days off work to spend with them. 

The week prior, my colleague handed in her resignation, which meant I really needed to take time off before she left all the work to me. 

So I looked for places to stay in an area where it never rains in February and where, for the past few weeks, the weather report has consistently shown sun and warmth. I found what looked like a perfect spot: a “fishing cottage” about 30 mins out of town. I booked. 

When I arrived, I couldn’t believe my good fortune: this place was perfect. It really was (is) my ideal summer getaway. Rustic enough to be character filled but with sufficient mod cons to be comfortable. A view of hills and the river. Birds and no people. Heaven. 

And then it started to rain. It’s mean spirited of me to begrudge the farmers this because the hills were extremely dry and the week before a fire had ripped through destroying much farmland but fortunately no houses or people. But still. 

It’s rained for the past three days. The hills have just a hint of green about them once again. 

This morning I must leave my little idyll. On cue the clouds have lifted and blue sky is again poking through. The holiday weather gods have it in for me and I do not know what I have done to anger them. 

An Instagrammable life

I am a late adopter when it comes to Instagram. I shied away from signing up because I am a lousy photographer and I don’t think to take photos. It’s not instinctual to whip out my phone to capture the moment, being of the generation that used cameras to take photos, phones came with a cord, and time was what you looked at your wrist to find out.

I was also very reluctant to join up because, absurdly, I feared my whole life would have to go on show and I’d have to expose the gap between my professed goal of living a design-driven and minimal life and my actual, messy, mismatched and uncoordinated life. Instagram more than Facebook seems to be the place where your life has to be curated and you’re under obligation to meet some impossible standard.

All of which is rubbish of course. I never post anything to Instagram, but I enjoy following other people most of whom, it turns out, are photographers. There’s no requirement to post, and I’ve enjoyed being presented with a string of images that show me parts of the world I’ll never see in the flesh (penguins under the ice in Antartica).

I tend to steer away from the accounts that promote a curated lifestyle. Not that they aren’t beautiful to look at and the inspiration can be very welcome. But ultimately they depress me. As humans we attempt to make sense of everything by looking for patterns, joining the dots, and therefore we fill in the missing parts.  What we don’t see in a curated feed is the messiness of real life – random papers we tidied away before taking the photo, taking out the garbage in our slippers, the three failed attempts before we got a batch of instagrammable cookies.

For those of us living alone, Instagram can also breed social inferiority. “Acceptable” pictures typically involve obvious social gaiety – parties, glasses of wine, several people crammed into the frame obviously having a good time. It’s not particularly interesting to look at a photo of someone sitting in a chair reading, alone, even if that is their (my) definition of a good time.

None of this is to blame Instagram. It’s a great platform for photo sharing. It’s my choice who I follow and what I look at. It’s important to me, though, to keep in mind that what I’m seeing is just a snapshot of someone’s life, and only the best parts. Holding up my life to an Instagram standard is a recipe for dissatisfaction.

Feeling my vulnerability

I fell this morning. Writing that makes me feel and sound like an 80 year old (I’m 54). Fortunately I didn’t hurt myself, but it gave me a fright.

Yesterday I felt pretty good so I cleaned, washed the windows, and baked. That doesn’t sound like ‘too much’ but last night I slept badly, woke several times from pain in my hips, and the fatigue truck rode right over me. I just couldn’t muster the energy to get out of bed this morning.

When I finally did, I could feel that I was unsteady on my feet. Sometimes this happens when I am stiff in the mornings from the rheumatoid arthritis, and since my hips had been painful all night they weren’t moving very freely. Somehow I hit my shin against the bed at the same time as losing my balance. I managed to twist myself so I fell onto the bed and had a soft landing. I didn’t trip, I simply couldn’t balance, and realised I couldn’t stop my fall. My reactions didn’t seem to work.

I have wooden floors and steep stairs. Had I fallen onto the floor I would have hit my head and probably done damage to wrists, arms or shoulders trying to break my fall. If I fell on the stairs, the possibilities are more scary.

It could have been very different. It gave me a fright. I don’t generally feel vulnerable or fragile, and I perhaps underestimate the impact of this disease on my life and on my ability to take care of myself. Generally I am of the opinion that my symptoms aren’t that disabling – I don’t have the excruciating pain that some people have in their hands that renders them unusable. This morning was the first time I’d felt vulnerable to the effects of the disease in this way.

I don’t like it. Not one bit. I don’t want to start tip-toeing through my life for fear of falling (although, in that somewhat mixed metaphor, tip-toeing might very well be the cause of falling).

Perhaps I need to stop underestimating the impact of this disease and pay more attention when my body is stiff and sore. I knew when I got up that I was very stiff. I should have paid close attention to where I was putting my feet, and not tried to move as if everything was fine. Because pretending things are fine when they aren’t may well make things un-ignorably not fine.