Updated: Oct 13
Nights are funny for me – they’re never the same. I’m always dreading the morning to come, feeling threatened by the day ahead. The questions remain - what kind of face do I need to put on today? Will my batteries last me the day? I try to start the day with some fresh air, just what I need to wake me up, followed by some breakfast and I’ll be ready to battle. Speedbumps, motorways, roundabouts – I’ll be sure to hit each of these in the day, the question is, how ready I am for it?
TODAY IS THE 12TH OCTOBER – TODAY IS WORLD ARTHRITIS DAY!
Though Arthritis is one of the most common causes of disability, studies show the majority of the population are unaware of this, and fail to understand what arthritis can mean.
Education is key, and World Arthritis Day is a great way to spread awareness!
In honour is World Arthritis Day, I thought I’d do a little ‘day in the life’ post. My RA affects me so differently, day to day, that it’s going to be a little tricky to actually demonstrate a ‘typical day’, but I’ll give it a go…
Waking up – it’s not the best part of anybody’s day, is it?!
Sometimes, I wake up with a momentary feeling of relief - finally my knee swelling has gone down, I can bend it, it’s a miracle! Alas, not a lasting one, as soon as my foot touches the floor, the swelling will come back.
Even when I’m not experiencing a flare-up, I still wake up feeling stiff as a board, the weight of the duvet is heavy and painful, rather than comforting like it used to be, so the only thing to do is get up. The feeling of standing on nails when I first get out of bed is far from ideal, but I know that if I stick it out for an hour or so and manage a few stretches and I’ll soon be good to go. Anything under an hour is an absolute bonus! Some days, it takes hours to come round, only feeling good just in time for the afternoon slump!
I have found that my worst time to get up is between 7 and 8. For a reason I cannot fathom, I seem to find it easier getting out of bed any time before 7 (any ideas on why that might be?) After 8am, I feel I’ve definitely got my 8 hours in, so naturally I’m more awake by then anyway. Truth be told - and as my boyfriend, Dan, constantly tells me - I do better in a morning and throughout the day when I get up earlier.
Recently, unless I’ve got somewhere to be in the morning, I get a wake-up call (or a shout up the stairs) from Dan asking if I want to take the cows back out after milking. Of course, I never turn it down – as much as I love my bed, I know I need to get up and get moving, and there is no better sight to wake up to than cows! Then we finish off any other jobs he hasn’t had time to do yet and go in for breakfast, so I do get time in the morning to put my feet up!
What I’m unsure of is if my ‘rest’ is proper rest? So, as writing this on Tuesday, I have decided (with some forceful, loving encouragement from Steph, my sister) to do 3 or 4 days PROPER rest, to see if rest does help and I’ve just not being doing it right. It’s a struggle for me because I just get so bored and fed up and feel so useless. I’m also considering Mikhaila Peterson’s carnivore diet – I just need to research a little more and wait to see what happens with the methotrexate yet. Anyway, I digress, I will be sure to do a separate post on all these little experiments!
So, what’s next?
I either go to work (massage therapy or my care job), have a Uni lecture (online now), do some Uni work, some blog writing or website admin (which I’m still getting the hang of!) To try break up my sitting and screen-time, I walk the dogs, go see my family (bit off and on at the moment due to Rona) or I go with Dan doing whatever on the farm (tractor jobs, sheep, cows, building work – you name it). I can’t complain about the variation, or the ‘office’ views!
Sometimes, it doesn’t matter how much I do in a day, the energy tank always seems low. The general consensus is that if you do regular exercise then you have more energy, and if you do nothing in a day you have less energy. This may be true, but for me, it’s only the case when I’m at my best. Recently, my best hasn’t been the case, and even though I’ve just sat doing nothing, the energy required for a flare up feels like I’ve been on a big run or being doing sheep all day!
Even on better days, just sat doing Uni work absolutely floors me. The mental exhaustion and fatigue take over. Fatigue is not just tiredness – to be simply tired would feel lovely compared - fatigue is in every bone in your body. When you’re fatigued, the energy required to drag your body and mind to do something is just unbelievable. I really don’t want to sound like I’m making it out to be the worst thing ever, but I do want to express its impact. It’s like when people say the fatigue you get when you’re pregnant is nothing like normal tiredness. With that in mind, I have a pending post on experiences with fatigue, thanks to the help of some followers, so if you’d like to be involved too, please just message me!
By the time teatime rolls around, often I’d rather it be bed time. Sometimes I think that isn’t helped by the kitchen we have - very old and very much due an upgrade we haven’t quite gotten to yet! But, we’ll get there – and at least we have a kitchen!! I do feel that if I were living on my own I would often just go to bed without tea, which wouldn’t be healthy, so it’s good that I’ve got Dan to think about too - he’s always in need of a good, hearty and healthy meal after a hard day’s work. As much as this sounds very old fashioned ‘housewife-y’, I wouldn’t change it. After all, it’s what makes me look after myself!
During and after tea, watching tele, it is not uncommon for one of us or both of us to fall asleep. Worryingly, I feel like I’m turning into my Dad – but at least I never fall asleep at the table and wake myself up by snoring and dribbling – or in a pub or behind the wheel (pretty much anywhere – even stood up when drunk!). It’s not a great feeling you get when you suddenly wake up and you’re downstairs on the sofa with the dogs and you have to drag yourself upstairs. By the time I actually get in to bed I’m wide awake and can’t get to sleep again!
There’s one thing that I’m unsure if it’s just me or a fatigue thing… I prefer to watch things that I’ve seen already (such as B99 on repeat) or at most, another easy-viewing comedy. I like programs that don’t take a lot to follow and act like a pick-me-up. When you’re laughing you just feel better in general, and I’d much rather watch something that gives me something to smile or laugh about. I’m keen to hear your thoughts on this? Is it common amongst sufferers of fatigue, or more of a personal preference?
In all honesty, I feel I’m actually very lucky when it comes to sleep – I know a lot of people who really struggle when they’re in pain, and can’t get to sleep until the morning, or are just generally bad sleepers. Not me, I could sleep through anything. Sometimes it takes me a couple of hours to get to sleep due to pain or being uncomfortable or itching (thanks to my eczema). Sometimes I will wake up early but I can always get back to sleep. I feel that it is a talent! Most people I know say they have to get up at least once a night or first thing in the morning for a wee because they can’t get back to sleep, but I could wake up, know I need a wee and sleep for another 8 hours. My sleep in the mornings isn’t fabulous, it’s either my knees, feet or (primarily) my hands that ache, but I just toss and turn and sleep the best I can. We just got a new mattress too, so I’m determined to stay in bed for as long as I can hack it and get our money’s worth!
As always, I would love to hear everyone’s stories about your ‘typical day’; anecdotes, tips, confessions, anything. I look forward to hearing from you!
Thanks for reading,
Magic, our kid!