Fighting Fibromyalgia is a daily battle and one that often feels like being on the losing side. Here is my day in the life of a Fibromyalgia Fighter – taking one day recently and walking you through what that looks like. I have tried to explain things as best as I can as I fight chronic pain, do my best as a father and attempt to be productive. I’m happy to answer questions, here or on Twitter. So let’s launch into the day – and see, for me, what a day of living with Fibromyalgia is like.
8:15am – First Medication Alarm
My day revolves around my phone triggering alarms to remind me to take medication at the right time. This enables me to (mostly) not forget, but also not to take them too soon either. The first such alarm is 8:15am.
I wake up in substantial pain every morning. My shoulder muscles are very tight and the joining tendons between the shoulders and collarbones are very painful. As I was slightly later to bed than my wife last night, I couldn’t see to put my night time compression gloves on (see Fibromyalgia and Hand Pain). I did manage to lather them in Iburprofen Gel, but that’s temporary relief. This morning, my neck pain was also sending pain signals to my head. But with Fibromyalgia, the pain in the morning is horrible.So, I force myself to sit up in bed and reach, bleary-eyed, for my pillbox. This first dose is currently 11 medicated tablets, 2 Magnesium supplements, one Vitamin D and one Vitamin C. Magnesium is important for Fibromyalgia Fighters (there’s a lot of ‘opinion’ posts on the web, so I am not linking to anything here). Vitamin D is helpful for my depression symptoms, especially crucial in Autumn/Winter months when we have very litle daylight.
9:30am – ‘Attempt to Wake Up’ Alarm
My 8:15am meds tend to send me back off to sleep, but I can’t allow it to do so for long. Too long in bed and my pain gets worse, from being in the same position for too long. Usually between 9:30am-10:00am my wife brings me coffee and breakfast. This is much earlier on days she works. ‘Breakfast in Bed’ is not a luxury. The coffee helps me to pull through some brain fog, and the food helps me not to have all my meds sat in an empty stomach for long.
10:30-11am – Painful Shower Time
Baths don’t work for me. Some Fibromyalgia Fighters will say they work well because they make them relax. In my case baths hurt my neck (and by cause-and-effect, my head) due to where the edge of the bath rests. I have showers instead, and they easily last twenty minutes, sometimes half an hour. The first 5-10 minutes are really painful, even with my medication in my system. The hot water on my shoulders and hands hurts badly, at least initially. Once I can get the temperature up however, the heat relaxes those muscles and I can enjoy it a bit more.
11am-11:30am – Family Time?
This doesn’t happen every day, but as my wife and daughter were going out, my wife had to get NJ’s things together, so I had her for a wee while. I helped her to walk between rooms. This hurts a lot – either I have to stand on my feet and bend over, hurting my legs (and to a degree my neck), or I can shuffle on my knees behind her while she tries to walk, but that hurts my knees. NJ is becoming more mobile, and getting strong now. So doing pretty much anything with her hurts me physically. I’m her father, so I will (and I want to) do things with her, but with Fibromyalgia any physical activity can hurt. And this is one of the hardest things about living with Fibromyalgia at the moment – doing parent-like things hurts, and I just want to enjoy it.
11:30m-12:30pm (ish) – Household Chores
If I have house stuff to do I absolutely have to do it first because
- If I don’t, I am likely to forget about it. I then get annoyed at myself later in the day for having forgotten.
- Once I sit down, I lose all energy for doing anything.
The tricky thing about this time slot is that by 12pm, my 8:15am medication is starting to wear off. I really notice this is my hands, especially. Anyhow, today, I emptied and re-stacked the dishwasher, did some hand washing and wiped down the kitchen surfaces. Then my hands really hurt so I stopped. But these things are often my jobs at home so I need to do them.
I also have a real problem settling to do anything if the room is cluttered or dirty. So if I don’t do these things, then my home environment is much less relaxing.
1pm Medication Alarm
At 1pm I take what we refer to as a ‘normal dose’ of medication: Ibruprofen × 2, Nefopam, Muscle Relaxants and Shortec. That puts me on a tally of 20 tablets by 1pm. I have also had a bunged up nose for about 2 months so sometimes at this slot I have a cold remedy (which has Paracetamol in it, but doesn’t clash with my meds). Because my pain’s been getting worse since 12pm, I won’t see relief until nearly 2pm.
The reason I have to take my Fibromylgia medication so frequently is that they typically last 4-6 hours (which means 2-3 hours of potential relief). The doctors have tried me on longer-release tablets but they basically didn’t work. When I’m in very high pain now I need relief now, not in a few hours time.
1pm-3pm: Living with Fibromyalgia but Trying to be Productive
At this point in the day I am physically very tired. I’ve been awake a while and done my physical jobs around the house. So I have to crash out. The afternoon is most commonly when my wife and NJ are out the house. So if I want to do any digital productivity, this is the timeslot I have to do it in, even if I’m tired. What’s ‘digital productivity’?
- Catching up on @FibroJedi and @lotrofamily Twitter Feeds.
- If I have a sermon for church coming up, then 1-2hours of preparation for that.
- Blog post or Fan Fiction writing.
- Video editing/recording (I can’t do that with a loud baby!)
- Helping my wife keep on track with her self-employed work
Most of that list involves typing. So today I’m going to stop typing for a while, and do some video editing (I have written this post over two days). I have a problem with multi-tasking, in that I want to do something productive, but then there’s Twitter, an energy crash or a desire just to get in-game. Trying to do just one thing can be really hard sometimes!
What happens in this timeslot is very dependent on my pain levels, but also what I’m needed for, family-wise. Today was unusual in that my wife and NJ were both out during this slot. This enabled me to play some LOTRO. But it wasn’t the easiest of gaming sessions because my hands were really hurting. So I did some questing, but then also varied it up with some crafting (which is hands-on in LOTRO, see here). I also really wanted to talk with Kin-mates but after a while the typing became too much so I had to stop. Even in this game, I have to alter how I play depending on my pain levels.
7pm Medication Alarm
As with the 1pm alarm, my 7pm one is also set up to remind me to take medication. With Fibromyalgia it is possible to forget to the take the medication you need. A doctor once asked me how this was possible. Here are the main reasons:
- Not having a drink nearby and not having the energy to get up and make one.
- Timing of things at home can distract me – NJ needing me, meal times, a random phome call.
- Sometimes pain itself gets too much for me to think so that can be all-consuming, sometimes making me forget to take them.
- Just having good old Fibro Fog, with my brain not in gear!
7pm-MidnightToday probably isn’t representative of a normal day, but with our baby badly teething this could be a pattern for a while. All I had wanted to do was to decorate the new SWTOR Manaan Stronghold. What actually transpired was NJ didn’t want to sleep and when she did it was for a few minutes before waking up and being very noisy. My wife had barely slept for a couple of nights so ran out of energy and went to bed (I can’t blame her for that). I ended up going AFK, timing out, relogging back in – multiple times over a four or five hour period. This was because although NJ can self-entertain, when she’s feeling ill she doesn’t want to.
So I did my best to play with her, pick her up, walk with her and do whatever else I could.
Although this massively helped my wife out, I ended up in unbearable pain from the exersion. But this is unavoidable – call it self-sacrifice for my daughter. Doesn’t make it easier to handle though.
Midnight to 1:30am Or thereabouts
Bed time is a…fluid concept for me. Unless I’m tired enough to sleep there’s no point trying, because if I lay down awake, I don’t rest. In fact it generally makes my pain worse. If NJ goes to bed really late and I feel stressed and physically tense as a result, I have to wind down. Writing this after the event, I can’t remember exactly which game I logged and what I did. But that varies day-to-day.
What I have to do however, is not go straight from computer to bed. This can disrupt sleep even more. So once I’ve shut my machine down, I make some supper, have a banana (high in Magnesium) and have my nighttime meds, which are different from the 1pm/7pm ones.
- Mirtazapine – an anti-depressant.
- Amitriptaline – a veyr mild anti-depressant. So low a dose as it’s not for depression, but for nerve pain.
- Quetiapine – technically an anti-psychotic, but at my dose is also to help manage pain
This combination should, and sometimes does, make me sleepy. But not always, and more recently, not often. So sometimes I have to stay up longer than I want to, in order to make myself as sleepy as possible. When I eventually fall asleep, it’s very restless sleep, both because of chronic pain and nowadays because NJ is waking up every couple of hours in the night.
TL;DR What Living with Fibromyalgia is Like For Me
Once I get to sleep, I’m ready to restart the whole cycle again. A cycle that never breaks. Living with Fibromyalgia, each day can look very different but the fight is the same. I’ve enjoyed writing this blog post but my hands really hurt. I’m blessed with a daughter, but practically doing anything with her causes a lot of pain. Gaming is the perfect escapism, but even then I have to abandon ideas of group content, challenging missions and sometimes even ‘normal’ questing. Are there good things in life? Absolutely, but fighting Fibromyalgia can take a lot of the enjoyment out of it.
But I keep waking up, so while that is still the case I’ll keep on fighting. Even if many days feel like a losing battle.