From time-to-time people send me encouraging Tweets saying that I do a lot despite fighting Fibromyalgia. Although I do share about how bad my pain levels are, I really try to make sure it’s only a small percentation of what I say is about that. So, I put my thinking cap on and decided to share in more detail what a day with Fibromyalgia is like. I’ll share how my ‘work’ days (Monday-Friday, usually) roughly pan out. There are some margins of change, so my days are not strict. Here’s an insight into FJ’s life, so I hope you’re ready!
Interested In a Particular Part of My Day?Show Timeslots
- 7am: First Dose of Meds
- 8am: Coffee and Breakfast
- 10am-11am: Painful Shower
- 11am-12pm: Reading (and more Coffee)
- 12pm-3pm: Blog Work (Maybe)
- 3:30pm-5:30pm: Attempts to Rest
- 5:30pm-8:30pm: Dinner & Family Time
- 8:30pm-11pm: Gaming and Attempts to Wind Down
- 11pm-Midnight: My Lowest-Pain Hour of the Day
- Midnight-1am: Reading and Supper
- 1am-7am: Sleep, Kind Of
7am is the first part of my day, usually. It depends on whether I am woken up beforehand with pain. This does happen sometimes. The reason is that it has been at least seven hours since I last took medication and definitely twelve since I took my strongest tablets.
The Importance of the Banana (Seriously)
At 7am, my first ‘med alarm’ goes off and I force myself to sit up and take my meds. Although I’m not on anti-inflammatories, I still eat a banana with my meds. A few years ago, I had a stomach ulcer which resulted to time in hospital, caused by the meds I was on at the time. I don’t wish to repeat that!
My wife does an amazing job holding this family together. Nearly every morning, she brings me a coffee at about 8am, which usually involves breakfast. This is not a luxury however. The risk of me not getting out of bed soon enough is high without being woken up; being in bed too long can make the day much, much worse. I get 45-60 minutes to go back to sleep after my meds and give them a chance to do something. The coffee here forces me (again) to sit up and not lay back down again.
What Pain am I In?
Often when I wake up at 8am I feel vaguely alright. But within half an hour my body tells me that is usually not the case! I drink my coffee and, if it’s been possible for my wife to do it, eat breakfast. At the same time I load up my phone and read the news. The main reason is not because I’ll understand what I’m reading in my brain-fogged state! Screens can help wake the brain up (or keep it awake late at night). Once coffee and breakfast are done, I drag myself up to have a shower.
The next stage in my attempt to start the day is a shower, which hurts. I don’t have a bath, because it tends to lead me to longer-lasting, worse neck and head pain. My showers are 15-30 minutes roughly. The first half is me simply getting hot water on my body, but especially on my shoulders, collarbones, neck and head. That’s because the largest portion of my Fibromyalgia symptoms manifests here.
Very Vocal Pain
- If my hand pain bad, then I can’t realistically do hoovering.
- Hoovering and mopping cannot easily happen if my shoulders or back hurt too much.
- Any job requiring scrubbing (including hoovering the stairs) simply won’t happen if I cannot control my hand pain
Pushing Through Regardless
- Tidying: I get mentally stressed if rooms are really untidy. As a father of a small daughter, mess is part of her life. But during the time I’m alone at home I need it vaguely tidy. So the lounge and the kitchen are tidied.
- Laundry & Dishwasher: Having clean clothes to wear and clean plates to eat off is not a lifestyle choice! So I do my best to keep up with these two tasks. Loading/unloading the dishwasher seems easy, but bending down usually makes my shoulders hurt even more. Sometimes it hurts my back also.
- Feeding the Cat: Or at least, giving him his food. He usually ignores it, but doing this during my morning routine is important.
As a wind-down from housework, I do two things at the moment. Because I have a personal faith (which I’m not pushing here, but there’s no reason to hide it either), I do my daily Bible reading. I have a few daily plans to choose from: if I’m still really struggling with pain then I read something a bit easier to understand.
A Most Painful Hour
Usually by 11:30am my pain levels rise again. I’ve not been without pain, however, and my meds usually only make me hurt slightly less. It’s been 3-4 hours since my first dose of medication. Technically my meds work for about four hours, but it’s usually less. However, the doctor has set a maximum dose for each day (as is right and proper). But that number means I can’t take them more than every six hours. This usually means 2-3hrs of every 6 being more awful than normal!
12-1pm: Meds Dose #2
My phone alarm goes off at 1pm to tell me to take my meds. In recent months I have already had them at 12pm. Taking them early does not mean overdosing as I don’t change the number of tablets I take in a 24-hour period. But I need relief as soon as I can.
Do I Work or Not?
- Blogging: Assuming my hand pain is tolerable, I can do typing. I could plan a post, or begin to fill out a pre-planned one.
- Updates: If my hands hurt a fair amount, then I can (and do) go through previous posts to make updates.
- Gaming for Work: I need to get back into this now, to be honest. A less hand-intensive activity is to play a game for ‘work’ purposes. This could be playing SWTOR to simply upload cutscenes, or wandering around in LOTRO for a maps project. I have a lot of options in this one. From late October or early November I hope to get back into recording my 20-30 minute LOTRO Warden videos.
- My Own Fiction: I’m writing my own standalone fiction story. In this timeslot I can do some writing, or working on my world maps to plan story developments.
If I Can’t Work
I am being more sensible these days, forced by near tear-inducing pain on an almost-daily basis. If I decide work is unwise, then I go slow in the afternoon. I may do more language learning, work on my fantasy map, or play a game, focussing on low-intensity content.
‘Which Game?’ is not a Simple Choice
My choice of game is determined by how much pain I’m in and where I hurt the most. SWTOR can be difficult in high pain due to it being nearly impossible to avoid combat. But if I can tolerate the pain this is the best chance in the day to play SWTOR. When the Small One is home, playing content that involves long missions or a lot of cutscenes is impractical. I need to be interruptible. However, I also prefer to play my main character in LOTRO while at home on my own, as I’m on “new” content (to me). I want to play such content without other obligations so I can fully enjoy it.
Meds May or May Not Work
During this time slot (after 6pm and no later than 7pm) I take my next dose of meds. How effective they are depends on the type of play NJ wants to do. If she wants ‘rough and tumble’ play then usually that cancels the meds out. Movement hurts. Having fun in a physical way hurts like crazy. Aside from wanting time to play with NJ, it has the dual effect of freeing up my wife to make dinner.
While I am not allergic to gluten, we found a few years ago that I am sensitive to it. If I have too much glutinous food it nearly-instantly gives me an enourmous, shocking pain spike. So for me, I know that having Fibromyalgia and being nearly gluten-free, removes an aggravating factor. So most meals wifey cooks are gluten free or low-gluten.
More Gaming, Really?
Yes really. Usually at this point I’ve had no more than two hours of true rest (if I’ve been productive anyway). Although rest is not always restful, gaming is my primary way to distract myself from my pain levels. What game I play is usually decided by hand pain and NJ’s needs. If she has a bath, for example, that’s noisy so I can’t play main characters or SWTOR story content. A good few evenings a week I play FFXIV as it’s my non-work game. But it is just as likely to be LOTRO, but again not playing new content or not playing my main character.
Sleep or Rest?
There is no point in me trying to sleep before my body is ready for it. My monitor is at this point using it’s blue-light filter is fully in effect. In theory I can sometimes sleep from 11:30pm, but if this hour really is my lowest pain hour, I try to enjoy it. If I turn my light out at 1am, I’m still in bed for 7 hours, so that’s still fine from a sleep time perspective.
I also have to consider meds for the morning – ensuring that my water glass is sufficiently full and my banana is ready.
Final Wind Down
I have a small bowl of cereal with yogurt for supper, most days. Going to bed hungry keeps me awake so I avoid that. Just before lights-off, I read a book. This time it’s a paper book or a Kindle book but with the blue-light filter fully engaged and on a black background. For the last year I’ve been re-reading Tolkien’s works but I’m currently re-reading Timothy Zahn’s Thrawn novel. I don’t read for too long but it means I have 30-60 minutes between turning my computer off and trying to sleep.
TL;DR Nothing Easy About a Day with Fibromyalgia
So this is roughly what a week day with Fibromyalgia is like. Weekends are another thing entirely. More time with wifey and NJ, more mess in the house, more cleaning because small ones are messy. And I can’t expect my wife to bring me coffee early in the morning (though she often does). But from the moment I wake up to when I try to sleep at night, pain levels determine nearly everything I do. And it has ruled (and does rule) out certain aspects on any given day. I’m keeping busy with various things to try not to be overwhelmed by my pain levels. It’s insanely difficult, but I keep going and I am grateful to the many of you who support me each and every day. Thank you.