I’m not a doctor and I don’t play one on TV. I’m not here to convince you of some cure. In this post I’m not even going to do what I often do, which is provide helpful tips to help make things more manageable or at least bearable. Today I am just going to tell you a bit of a story about some of my experiences, so that, especially if you are new to Fibromyalgia, if this resonates you will know you are not alone in going through this.
Pick your own battle
I don’t know about you, but I find there are contrasting problems with Fibro, and if I help one, it makes another worse. Here are a few examples.
- If I use my nicely contoured pillow, flat on the bed. It is best for my head, neck and shoulders.
- If I use that pillow without another pillow under it, I get post nasal drip problems throughout the night, causing coughing and sniffling.
- If I use my wedge pillow I remove the post nasal drip but I struggle to get my head comfortable.
- The contoured pillow on top of the wedge pillow slides down the minute I lift my head and also is uncomfortable.
- There are benefits to both early and late nights.
- I have one strength of prescription painkiller. So the options are nothing, over the counter or prescription.
- As throughout each and every day and night contrasting symptoms come flying at me, decisions have to be made around medication.
- I need to have sleep but is complex sleep a blessing or a curse!
- Is it ok to give in and become nocturnal?
The tale of two nights
Night One
On a Sunday night, as I went through my little night time routines. Checking I had logged my days food, logged my media consumption and also my basic bullet point diary of the day. I was really aware of a bad pain in my elbow. It was radiating down to my hand and up to my shoulder. It came out of nowhere and I hadn’t injured it.
I usually distract myself at this point with some relaxing games on my iPhone. Even the gestures of tapping and swiping on my screen was causing me agony. To the point I was wondering if I would have to go to a walk in medical centre the next day. I then moved onto watching some YouTube on my iPad and I struggled to find any comfortable position. At this point I had taken a dose of my prescription painkiller about two hours before, so I had nowhere else to go.
After watching a video I read my Kindle for a while before trying to get to sleep.
Trying is all I could do. Every time I got close to nodding off, my elbow (or some random other problems) kicked off and woke me up, and so it went on. Altogether I was awake until gone four in the morning before I finally was able to sleep.
I woke properly, (not counting all those brief wake ups I do all night long) late morning. The elbow of course felt more or less normal, like there had never been a problem at all. After lunch I dropped off again. Really easily this time – go figure. I was finally ready to try and face the day at about 4pm.
Night Two
On a Monday night, that most amazing thing happened. I was actually able to get to sleep at eleven odd pm. Even though I had slept much laster into the day. This was a big deal. Even though I am usually (not always I admit) in bed by around 10pm. It is very rare that I go to sleep before midnight, On a good night it is around 1 am, 2 am if I am pushing it.
Guess what? The amazement wore off. I woke at about 3am. The elbow was a bit sore again, not like the previous night, but noticeable.
However, it was impossible to get comfortable. I had my pillow flat and started coughing. I put another pillow underneath which resolved this but started causing a headache. I was on my back, then I was on my side. I rolled over onto my front and hugged a pile of standard and v pillows. This was great for a short amount of time then I was uncomfortable again.
From about three am until six am I played the game of can I get comfortable. I relaxed myself with calming videos. They helped me to get to the point of nodding. Then as soon as I stopped watching I was both wide awake and uncomfortable again.
I finally go myself in a position I could sleep, and again slept until late morning.
A typical situation
These two nights are both typical of and completely different to every other night. In much the same way that the days are similar in one way but completely unique in others. The reality is that I live with sleep problems.
Unintentionally Nocturnal
So, bit by bit these various issues have lead me to practically become nocturnal. Thankfully, since the early days of living with Fibromyalgia, I have always booked things like appointments for the afternoon. The logic being that if I wake up feeling really bad, there is the time to rearrange the appointment. Now of course an afternoon is always necessary as there is a good chance I will be asleep during the morning.
Things that can help
I have talked about sleep before in my post Inconsistent Sleep with Fibromyalgia Now, so much later down the line I have learnt a few things. Things like a good quality mattress and topper do help. Ours are both coming to the end of their life and waiting for the financial ability to replace them.
Things that don’t help
But also, things that are often talked about like not using tech last thing at night, make zero difference for me. In fact an app is often needed to help me get to sleep, even though there is a good chance it won’t be for long.
Tracking it all
It is almost amusing when I look at the sleep data from my smartwatch. The graph showing the different stages of Deep, Core, REM and awake jump up and down like a jack in the box. I also consider myself lucky if my deep sleep exceeds an hour!
Non-Restorative Sleep
If you don’t have Fibromyalgia and are reading this out of interest. It is worth highlighting that people with Fibro tend to have non-restorative sleep. In other words, that sensation of waking up after a good sleep and feeling great for it, is something we no longer experience. In fact we usually wake up feeling worse than we did when we went to sleep.
The crux of it
Perhaps, after all, this is part of the crux of it. If I am feeling relatively good before I go to sleep, maybe, at some subconscious level I don’t want to go to sleep, knowing there is a good chance I will wake up feeling so much worse for it.
Until next time,
Gentle Hugs,
Susan
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