I’ve been meaning to do this forever: give you a glimpse of my everyday life with this disease. But then I wasn’t sure how much info was too much info. And then I never got around to it. And now I kind of regret that… because it would have been interesting to look back on how things were a year ago or two years ago… Oh well. I’m doing it now and we’ll see about how much info I want to share.
I should start by letting you know, I’m always tired. Partly because I don’t sleep so well. But mostly because I need a lot of Baclofen to control the spasticity in my legs. Baclofen is a muscle relaxant, and relaxed and tired kind of go together. But the spasticity was so painful and took so much energy, that I’m grateful for this medication, which works really well for me. But I’m always tired. Oh well. I take 2 tablets 4 times a day, roughly at 6 and 12.
So. That’s pretty much how my day starts: I wake up around 6am, get up, pee, take Baclofen and the nurse (or my dad, if we don’t have a nurse) sets up the nutrition IV. Depending on the size of the IV, it runs 9 or 11 hours. And yes, that means I have an IV attached to me all day. Everyday.
After that I go back to sleep and usually wake up some time between 10 and 11am. At this point, my main motivation for getting up… is the thought of my next nap. And maybe “nap” isn’t the right word… Ideally we’re talking 1.5 to 2 hours of deep sleep. But not yet. First I have to get up and pee. Without going into too much detail, I want to mention 2 things: Waste products from the nutrition IV are eliminated through the kidneys and bladder, so… I pee like a racehorse. And I can’t go to the bathroom, I have to use my toilet chair and… it takes forever. Well, not forever but when a healthy person goes to pee really quick, that takes, what, 3 minutes? For me, my butt has to be placed on the toilet chair, then my feet on the footrest, my hands on sticky pads and a little cushion between my knees. And then I can pee. And then to get me back into my comfy chair takes time as well, so my quickest possible trip “to the bathroom” takes 10 minutes. And I pee like a racehorse. ALS can be such a waste of time.
So, I’ve gotten up and peed, now I need some water, miscellaneous drops and a powder to support my digestive system, some Sativex (cannabis spray) and I’m finally ready for breakfast, about an hour after first getting up. And hopefully I don’t feel too nauseous to eat. But either way, I can’t eat much. Half a banana, mashed, is about it these days. Takes about 45 minutes. After that, it’s usually 12 o’clock or later: time for Baclofen. Then the nurse brushes my teeth and then… nap time! Ideally. Sometimes I have physical therapy at 12:30 or 1pm. In which case I have to wash, get dressed, do physical therapy and then… nap time!
I also want to mention that my capacity to hurry up for an appointment is very limited. Virtually non-existent. For example taking Baclofen: 2 tablets, cut in half, so 4 little pieces, usually takes about 5 minutes. I just can’t do it any faster, I need a break after each piece and that’s how it is. And if I choke or a tablet triggers my gag reflex or something like that… well, then it takes however long it takes. Nothing I can do about it and if that makes me late for an appointment, so be it. That said, I do my best to be on time for appointments by eating less or sleeping less. That’s all I can do. I have to get up earlier or be woken up from my nap (which really hurts) or I can’t eat as much.
Back to my example day. I’m gonna make it a Saturday, my favorite day, no appointments. So, after brushing my teeth… nap time! Ideally, I take my nap in my bed, lying on my right side. At night, I sleep in my recliner, which is more comfortable for sleeping all night, but lying in my bed, curled up on my side… wonderful! For 1.5 hours if I’m lucky. Then my right upper arm/shoulder starts hurting or my right hip/thigh. My internal alarm clock. I get up and wash and get dressed. Well, I get washed and dressed. No details, sorry. It takes about 30 minutes.
At this point, it’s some time between 3 and 4pm, time for lunch. Something mashed or pureed. Usually takes about an hour. After that, I finally have time for some fun: a visit from a friend or to play with my eye thingy (the eye tracking system that allows me to operate my computer with my eyes). And Baclofen, of course. And sometime around then my nutrition IV is done and I get some other IVs, vitamins, minerals, stuff like that, takes another 2 hours. And then I need a little nap to recover, half an hour or so.
And then it’s time to start thinking about dinner. Since I had my lunch so late, I usually can’t eat before 8 or 9pm, usually more like 9pm.
And then the evening routine: a trip to the bathroom to wash my hands, then brushing my teeth, my last dose of Baclofen (ideally around 11pm), getting changed into my pajamas and then it takes at least 30 minutes to place me in my recliner just so. So I can sleep until 6am. Ideally. But anytime after 5am is fair game for getting up, peeing, Baclofen, the nutrition IV…
So. That’s basically my day. During the week I always have appointments: physical therapy, speech therapy, osteopathy, psychotherapy. For which I have to eat less or sleep less. Or have less fun, I can’t have visitors during the week. But that’s ok, my appointments are worth it, I really enjoy them. And I clearly need them.
I’m glad I finally wrote this down because things are about to change… I’ll tell you next time. Hopefully soon.