I have 15 days of my DMT left, and I usually receive my next delivery date when I have just over 3 weeks to go. I call the clinical homecare number;
“Oh, how strange. Let me look into that for you… ah, it seems we haven’t received your prescription from the hospital. I’ll chase the hospital, phone back on Friday if you haven’t heard from us by then, and we can see what status we’re at”.
“OK great, thanks so much”.
I open the clock on my phone, and set another alarm: Friday, 4pm, label: phone homecare if not heard.
It’s the fourth reminder I have primed for the appropriate day over the next week, all medically related. If my life were a stage-set, the backdrop would be a scrolling list of appointments to schedule, clinics to attend, new symptoms to keep an eye on, decisions to make, results or delivery dates to chase, stock amounts to be aware of, and now, in our current climate, preliminary phone-calls to make ahead of attendance.
It’s these unassuming drip, drip, drips of half-worries, to-dos and must-remembers that constantly fluctuate between the background and foreground of your mind, and are rarely spoken about in relation to living with a chronic illness. These are the easy things, the run of the mill administrative tasks that need no second thought – their true impact never fully recognised. Often even by those of us living with chronic illness. They become part of living, part of daily life, part of normal. But it’s these easy things that can chip away at your moments of contentment, your mental wellbeing; slowly, quietly, unrelentingly. They play on a loop in the hypothetical “what if” catastrophe-centre of your brain, until a real-life resolution is reached. They give you one more phone-call to make, one more thing to bear in mind, one more thing to keep on top of. One more thing to be held somewhere in a vacant head space, until it can be ticked off and replaced with something else. It’s these easy things that keep you ever so slightly distracted, not quite fully present, “yes, sorry I am listening, I just, …I might…, I’m just going to make a quick note of something”.
It’s these easy things, bubbling away softly, never reaching boiling point, that fill your days, and your diaries, and your dreams.
The low-level simmer of potential anxiety, combined with the never-spoken about mundane management of living with a chronic illness; that is what I find to be the most draining. As with computers, it’s the continual whirring of background tasks that depletes the battery quickest. The constant managing. It’s just so bone-crushingly boring. More than anything; more than fear, more than heartache, more than grief, more than hope, I’m just so blimmin’ bored of having MS.
At some point over the next few weeks, my 11-year diagnosiversary will pass. Sometimes I can’t believe I’ve been doing this for that long, and sometimes it hits me that in another 11 years I won’t even be 40 yet. I’ve got a long old slog ahead of me, with the easiest days behind me. That thought doesn’t necessarily scare me, but it does exhaust me. No wonder my waking hours are akin to that of a sloth’s.
Less than two hours after my call to the clinical homecare team, I receive a call back;
“I’m calling to arrange your next delivery, we’ve just received your prescription from the hospital. How is Monday for you?”
I allow myself a little smile, a wave of gratitude washes over me. Whether directly or indirectly, unconsciously or consciously, my life is littered with good people who are on my side, on my team, whether they know it or not.
I replace Friday’s alarm with a reminder about the delivery on Monday. Done. Check. Tick. What’s next?
My phone starts buzzing; “confirm tomorrow’s MRI scan” flashes across the screen.
Right. That’s next.