What’s a Day With Fibromyalgia Like?

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!

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7am: First Dose of Meds

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!

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8am: Coffee and Breakfast

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.

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9am: a Painful 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

My family would tell you that this shower is not “suffering in silence”. In fact, for much of the last two months or more, my wincing is very vocal. I do not have enough superlatives that express just how much Fibromyalgia hurts. But the shower does help. After the first half I can finish washing, am generally quieter – and usually wifey and NJ have both left the house too.

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10am-11am: Housework

My first responsibilities after shower is to do housework. I am the one who does the vast majority of cleaning and laundry in the family. I’m the one who lives and ‘works’ at home so it makes sense, even if I wasn’t here due to Fibromyalgia. I have tried to use Trello to plan which house jobs are and on which day. The reality is, however, down to which part of me hurts the least. Here’s why:

• 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

However some jobs must be done even if I’m in terrible pain.

• 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.

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11am-12pm: Reading (and more coffee)

Once I figure out I’m too tired, or cannot push through on jobs any more, then I get another coffee. While too much coffee is bad for Fibromyalgia, I need it to survive brain fog. Fibro Fog can sometimes persist all morning, and occasionally all day. However, if I need (or want) to do anything productive, then caffeine helps dispell some of it.

Reading

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.

Language Learning

Because I clearly don’t have enough going on, I’m currently learning Spanish. Most know that I, to some degree, speak French. But I never had the option to learn Spanish at school and it’s a language I love the sound of. So, using the free app Duolingo for about ½hr I am slowly learning that language. Reading and language learning are ways to try to wake my brain up more. Often it works, but not always. Pain can shout too loudly and drown out any attempts to do anything.

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!

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12pm-3pm: Blog Work (Maybe)

Midday is a crucial time in my day. It’s decision time.

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?

Decision time here is whether I try to do something ‘productive’ and if so, what? I’ve had to stop streaming recently because my pain levels make putting on a show nearly impossible. But I still have a range of things I can try:

• 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.

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3:30pm-5:30pm: Attempts to Rest

If I’m being sensible and have not lost track of time, I try to use this timeslot to rest. Usually this means playing a game but not for content production purposes.

‘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.

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5:30pm-8:30pm (Ish): Dinner & Family Time

My wife gets home from work shortly after 5pm. NJ (my small daughter) arrives back from 7pm. She is looked after by my in-laws so that my wife can work. I can only look after NJ alone for two hours without falling into unbearable pain levels. So I am very grateful to my in-laws for their vital support of our family.

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.

Gluten-Free

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.

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8:30pm-11pm (ish): Gaming and Attempts to Wind Down

Once I know dinner is done and wifey is happy to take over playing with NJ, I get to retreat to my desk to rest. As NJ is in a phase of preferring physical play, or at least playing some game or other on the floor, I nearly limp back up the stairs. Usually my legs now hurt and getting to my office is doable but massively painful. At this time all of my pain is nigh-on unbearable.

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.

11pm-Midnight: My Lowest-Pain Hour of the Day

After an entire day with Fibromyalgia, where it affects everything, I reach 11pm. NJ and wifey are usually both asleep by 11pm. Fighting pain for 15+ hours with very little respite is unforgiving. I am usually pretty tired by 11pm, however this is currently my lowest pain time of the whole day. I’m not normally on Twitter at this time (or I try not to be), I’m not trying to do anything and I don’t have any obligations.

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.

Midnight to 1am (ish): Reading and Supper

Before midnight, I take my last dose of meds, most of which are related to anti-depressants and anti-anxiety meds. I don’t take sleeping tablets, but these types of meds can and do make me drowsy, while helping ease my depression. So this is a logical time for them.

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.

1am-7am: Sleep, Kind Of

Thanks to meds and being thoroughly exhausted from battling pain all day I do usually remain unconcious through the night. It takes me a fair time to actually get to sleep, as it’s been 5-6 hours since my last huge meds dose. Sometimes I can’t sleep because of pain, something called Painsomnia but since my pain has been so high, I think the tiredness takes over at the moment.

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.

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