⚠ Warning ⚠
I’m not feeling well at the moment so this isn’t a particularly fun post.
Like living with a chronic illness, this post is a result of a culmination of little things. Hearing a colleague describing a flare that had me off work for a couple of weeks last year as “he’s got a bit of a bad back” or a different colleague telling me that he was unable to put his socks on yesterday because he pulled his back. (I’m feeling a bit guilty about my reply that this is my standard setting and the reason that I wear “invisible socks” that only cover my toes and heels.)
Thinking about it, it’s probably more a reflection on how well I disguise the true effects of Ankylosing Spondylitis. The medication and stiff upper lip together helps to show that having a disability doesn’t necessarily mean that you’re completely out of the race. But it takes its toll.
Ever wonder why I jokingly turn down social invites? Sure, part of it is that I’m actually quite antisocial (but I’ve learned how to fake interest for work purposes). And another part is that I’m an introvert working in an extrovert’s job (again, I’m a bloody good actor!). But the big chunk of it comes back to the spoon theory. I literally throw all of my spoons at work. Then I borrow a chunk of tomorrow’s spoons to get me to the end of the day. And tomorrow? I’m borrowing from the next day, and so on. Then I get to the weekend and I have to pay back my debt.
Fatigue isn’t sleepy tiredness. It’s a malaise that runs through your whole body. It’s that feeling after you’ve been to the gym and run for miles, and rowed even further. But without the endorphins you get from exercise. It’s that dull, throbbing ache that runs through your arms and legs, across your back, even through your buttocks.
This is the payment that we make for living a normal life. You don’t see me when I get home and collapse onto the sofa. Every. Single. Night. You don’t have to watch as I finally muster enough energy to grab a sandwich or other snack instead of dinner because I don’t have enough spoons to cook. And neither should you have to. (My partner on the other hand does – but he’s a saint and amazing and definitely the greatest thing ever to happen to me – apart from managing to get tickets for the Kylie Showgirl Homecoming first night!)
But then, every other weekend, I take my Humira. This is the drug that actually allows me to get up and do the day to day. But for me, it gives me my Humira hangover. So every other weekend when I’m trying to recover spoons, I’m killing the inflammation part of my immune system and coping with the physical fallout from that.
So, if we think of the “feeling well” scale as a number line from 0 to 10 (and feeling unwell as 0 to – 10) a chronic illness (in this case AS) automatically takes you to a minus number. For AS we have a handy scale to transpose onto it, the BASDAI. My average score since being on Humira is around 3.5 to 4.
So, my base line is -4. I consider my “normal” score to be -4. It’s my equivalent to 0. That’s not bad compared to others that I know. Now we throw in 4-5 days of full time work (technically 40h, but I regularly do more). At the end of a long working day how would you feel on this -10 to 10 scale? Let’s say -1, -2? I’ll go for -1, so I’m now at -5. This weekend was injection weekend, so let’s chuck a further -1 down as my injection and immune system fight it out (which gives me a terrible hangover, and I can’t drive!)
This weekend I found out that I’ve got a viral infection (I found out by taking my injection… Whoops!). Nothing serious – just the usual vomiting, nausea, headaches etc… But enough to say it’s a -2. A -2 but now with a compromised immune system. So let’s bump it to -3.
Sure, it’s just a viral infection. People get them all the time. A -2 for someone without chronic illness is an inconvenience. But add up the maths. An average person with a full week’s work and a virus, -3. Inconvenient, uncomfortable, enough to legitimately whinge about? Sure. But, with a chronic illness you’re at -4 to start. So that – 3 or -4 extra pushes you right to the bottom of the scale.
We don’t (well, I can’t speak for others…) *I* don’t want thanks, or sympathy, or some sort of medal. But sometimes it would be useful for you to think about what it must be like to live with a chronic condition. We try not to moan, we put our best face on for as long as we can. But the mask slips, and when you look at what it’s covering, it’s probably for the best that the mask is there.
So the next time you have a bad back, or virus, or other infection, just think about what it would be like if you started at -4.