Warning: contains GIFs
A lovely reader (Hi, Naomi!) suggested I conclude my Dummie’s Guide to ME/CFS with a “day in the life”, to illustrate what it is like to live with this illness. I won’t lie to you: this piece is long, mundane and tedious, but so is living with chronic illness. It is boring. There are no breaks. And the little things that you wouldn’t even think about, like showering, watching TV and leaving the house, form the greatest challenges of my day.
Unfortunately, my health has deteriorated significantly since writing this piece, so it isn’t an accurate reflection of how I live now. Rather, it stands as a record of what was probably one of the most “well” and functional periods I have had in the last 6 years, and serves as a goal for me to aspire to. I’ll update with more on my relapse when my health has stabilised some. (EDIT: you can read more on my relapse in my post, Relapses: Fear and Loathing in Chronic Illness.)
My mornings start at 6.30-7am, when my exhausted body resists any attempt to drag myself awake. I used to be a morning person: up at 6am every day to power off for a walk, before doing weights and yoga. Now, my body aches, my throat is swollen and sore, and my head is in the vice-like grip of a constant headache, bordering on migraine. Words come stilted or not at all. The light peeking behind my block-out blinds burns my eyes, and my brain tries in vain to decipher the words swimming in front of me on my iPad. Sometimes, I lack the strength to draw a full breath, and always fear that one day, the weight of the blankets will pose too great a challenge to my weakened body and I will be unable to extract myself from my bed.
Somehow, I sit upright, and gradually get up. I have to move slowly and carefully in case my BP and heart rate decide to play silly buggers, meaning I am often in the process of passing out as I make it to the kitchen. Managing tasks while in pre-syncope is something of a speciality: I usually try to make as much of my breakfast as I can before lying on the kitchen couch and passing out.
Breakfast is eaten at the kitchen table – it must be something simple to prepare, eaten in complete silence, alone. This means my family is in the lounge room behind closed doors, and we must carefully schedule our mornings so as not to run into each other. I am so sick in the mornings being around people is one strain too many on my poor body.
What follows is probably the most physically challenging activity of my day: taking a shower. It’s mentally taxing, too. The sound of the fan, the coldness of the air, the sting of the water on my body all combine to make a toxic sensory cocktail. Meanwhile, I have to expend a lot of mental energy to follow the complicated (to me) sequence of events involved in bathing myself.
Since shaving my head, my maintenance has become much easier, leaving me to focus on the basics of showering and dressing. A shower chair is essential – I could not clean myself without it, and there’s no way in hell I’m having someone shower me again. (You’ve never really experienced indignity until you’ve been showered by a coterie of nurses, all the while trying not to slide off your shower chair from weakness.)
I sometimes attempt a bit of yoga after my shower: it is mostly prone poses to help recover from being upright for so long. Then comes the horrid act of dressing. “But you love clothes, Siobhan!” you cry. Yes, but my body does not.
Clothes are too tight or too loose, too itchy, warm or cool. Pants cut into my waist, but I don’t have the energy to negotiate skirts and leggings. It is warm outside but my body wants to cover up as the air burns my skin. I’m like the princess and the pea, minus the princess part. (And the pea. Mmmmm, peas.)
My psychologist tells me that clothing problems are common in those with sensory processing disorder. “Just wear what makes you comfortable,” she says. Except I can’t ever be comfortable, or pain-free. I might have to cycle through a few outfits before I find one suitable for my body on this particular day – what I wore yesterday may cause a crash the next. Shoes, too, are limited to soft and flexible flats with good support – usually bought secondhand so someone else has broken them in for me.
So – it’s 9am, I’m dressed and ready, and I’ve used most of my spoons for the day. I collapse onto that same fantastic kitchen couch to sip my coffee and recuperate. I catch up on all the US blogs that updated overnight, then sit and stare into space for about an hour* as I recover from my shower and contemplate my day.
Each day is much the same as another: my disease leaves no room for spontaneity, and anything out of the ordinary can send me into a tailspin. “Fun” has been out of my vocabulary for a long time. This makes finding motivation to get up and do exactly what I did yesterday especially difficult.
Most of my time is spent at home – on average, I can go out about 30-45 minutes a day. Visiting shops and cafes form an essential part of my health management, to ensure my body maintains tolerance for stimulating environments and physical exertion. It might sound like a pretty cruisey type of treatment, but what would be considered relaxing or fun for able bodied people is my equivalent of climbing Mount Everest, blindfolded and with broken legs.
It’s hard to enjoy yourself when you feel like you are going to slide off your chair at a cafe, or pass out from the artificial heat. And although I am more adept at taking myself places now, the fear of collapsing in a public place and being unable to get myself home is always present. The fact that it has happened quite frequently in the past, and is therefore not an irrational thought, doesn’t do much to allay my dread.
My body is so weakened and my sensitivities so heightened that finding a suitable venue for an outing is another challenge in itself. Choosing a place to shop or have coffee is a complex decision, based on how busy they get, the type and volume of music they play, proximity to home and the temperature of the environment. I’ve narrowed down my “safe places” to friend’s houses, a few op shops, and precisely two cafes that I know won’t have the local radio blasting.
But the sad reality is, most of the past 6 years have been spent at home. Trips out of town, dinners at restaurants with friends, shows, parties, concerts, holidays – these are all spheres of living which have been denied me the course of my illness. Even now, the number of places I feel I can go out to is rapidly diminishing.
Sounds exhausting, doesn’t it? Between you and me, I’m fed up with the daily grind. For most people, it’s work, home life, extra curricular and social activities, but for me it is an endless anxiety about what environments and activities will and won’t make me sick. It is just so exhausting. For one day, I wish I could just relax, not think and do precisely what I want to do.
And what happens if I do venture into an unsafe environment? It happens fairly regularly – the world is a stimulating place, and I am not well enough for this world. I might venture into the Salvo’s and they have John Williamson blasting, or construction work is going on in store, so shoppers casually browse around men angle grinding (this actually happened. Really). What happens next: if I’m by myself, I try to keep it together so I can somehow make it home. Otherwise, dad will drive me home as I start to melt down in the car.
I lose all sense of space, time and perception of external stimuli. All I know is pain. A million fireants fill my skull, digging out my brain. My whole body is on fire. I want to rip my skin off in sheer agony. I can’t tolerate any more stimuli – words attack me, like jibberish fired straight at my brain. The room moves around me. I cry, and cry, and cry.
Sometimes, it is my physical ability that is affected. Difficulty breathing, vertigo that makes me slam into walls as I walk, nausea, and extreme muscle weakness are pretty much par for the course after a big day. Sometimes I collapse as I make my way around the house, leaving me lying in a puddle of my own drool until someone finds me. Cool party trick, amirite?!
So that’s being out – what about the 90% of the time I spend at home? Like I mentioned above, most of my time is spent sitting at my computer, staring into space. I am fortunate to be able to do this as I’ve had long periods of not being able to tolerate screens or sit upright. Most of my time is spent alone as I find the presence of people so exhausting. Being extremely introverted makes this easier, but I still get lonely.
Otherwise, I sew. Again, I’ve had times of not being able to sit upright at a sewing machine, but now it is a fairly low-moderate spoon activity. I save the cutting for high-energy days – I use a giant cutting mat with a rotary cutter. This is the only way I can cut fabric as my hands aren’t strong enough to use scissors for very long.
I sew as much as possible in one go, before overlocking, pressing and moving on to the next task, sometimes with a sitting rest in between. Employing industrial-based techniques such as sewing without pins and using smaller seam allowances improves efficiency, and therefore my ability to sew. There is no way I could sew as much as I do without Janet Pray’s excellent Craftsy classes.
Once or twice a week, weather and spoons permitting, I take a walk. This achievement is a huge point of pride for me: I built it up with blood, sweat and tears, from shuffling to the letterbox for 30 seconds to a 40 minute walk. It is curious that I can walk so far when I might not last 10 minutes in a shopping centre, but I suppose the lack of strain on my body from other sources (lights, sounds, people) allows me to achieve more physically. This doesn’t mean my body won’t act out! Perhaps the most amusing symptom I experience on my walks is when the communication between my brain and my legs fails, and my attempts to move my spasming legs looks like a scene from Monty Python’s Ministry of Silly Walks.
Late afternoon, I might have dad take me for a drive in an attempt to manage my vertigo. As severe as it is now, in the past it has prevented me from being able to be in a car at all – an imprisonment I do not wish to repeat. Though the motion of the car sickens me, I must maintain a certain tolerance for movement, and I find visiting the beach, wetlands and river soothing. Not long ago, I could manage a short trip out of Warrnambool, to towns that were, say, 5 minutes away, but once again this has been snatched from my grasp.
And then I’m done. After dinner (cooked by my parents – I’ve never managed to provide for myself with this illness, so it would be frozen meals** all the way otherwise), I’m into my PJs and the mental “shutters” come down. I would love to be able to go out for dinner with my friends, or have visitors over, but my sensory issues are so heightened that I can barely face going outside or even having the window open after 6pm.
I draw all the blinds – let’s just say I loathe daylight savings – and sit up with dad to watch some TV. I said before having a shower was my greatest physical challenge of my day, but this may well be my greatest mental challenge. TV is extremely stimulating to nearly every sense. I can’t tolerate it on during the day – even if it is background noise, it drives me to distraction. At night it is hard too, but if other stimuli (light, noise, most people) are eliminated, and I have my knitting to look down at rather than the screen all the time, it is just about do-able.
Choosing shows is another complex and completely un-fun task. Curiously, it seems most TV and movie creators don’t take people with sensory processing disorder and vertigo into consideration when making their programs, meaning most shows are terminated within the first 30 seconds of watching. I’d estimate about 70% of programs we start are unsuitable in one way or another, usually due to fast motion or a charming “handicam” effect which makes me want to chuck my guts.
Old shows like Doctor Who and Star Trek (yay!) are safe as they didn’t have the technology, or budget, for fancy camera effects, so I can sit down comfortably and watch them while I click-clack along with my knitting. Considering the amount of shows we go through that are deemed unsuitable, all I can say is thank glob for Netflix. (I can’t watch regular TV due to the ads.)
And that’s my day! Exciting, I know. I head off to bed and read a little on my iPad before going to sleep. I generally can’t hold a physical book up for long enough, and sometimes the print is very difficult to read in “3D”, as it were. Even if I just browse forums, it helps to maintain my reading comprehension, which has been so low in the past I couldn’t understand a single written word.
If I’ve had an exerting day, my body might decide to play up at night. Horrendous vertigo and nausea are the norm – I usually feel like I’m on a ship in high seas as I lie in bed at night. Not even in a cool, I-might-meet-Tim-Curry-as-Long-John-Silver way, but an I’m-going-to-throw-up-but-I-can’t-move-I’m-so-dizzy way. I often experience fevers with violent shivers and shakes, sometimes bordering on convulsions (I usually pass out the morning after this happens).
And the next day, I get to do it all again.
Wasn’t that a wild ride?!*** I hope I’ve given you a bit more insight into the world of an ME/CFS sufferer. Everyone’s experiences with this illness are different, of course, and I’d encourage you to read other accounts of those who have ME/CFS (see below). I didn’t mean to sound ungrateful in this post, as I am aware there are many, many ME patients for whom sitting upright, talking and feeding themselves is a far away dream, let alone leaving the house, walking and having a hobby. I’m currently very jealous of all I used to achieve, and shitty with myself for taking so much for granted. Guess you don’t know what you’ve got til it’s gone!
Other ME/CFS sufferer’s experiences:
Emma of Blonde Voyage opens up about her condition
A day in the life of a mostly bed-bound sufferer from Hannah of Super Pooped
Another day in the life from Meg of Meg Says
Chloe from the Chronicals of Chronic Illness shares her experience of living with severe ME and associated auto-immune disorders
A Sudden Illness by author Laura Hillenbrand, a must-read for anyone who wishes to understand ME/CFS
What it’s like to live with severe ME, an article about long-term severe ME sufferer Naomi Whittingham
*You’ll find that sitting and staring into space is a recurring theme here.
**Bought by a generous benefactor, because I can’t go to the supermarket that often.