So what exactly IS Fibromyalgia?
Trying to explain it sometimes feels like trying to solve a Rubix Cube, which I must try one day!
My typical response to someone asking is; Google it. Not because I’m lazy, or ungrateful that someone has shown interest to ask but, because to me it means different things on different days.
On a good day, its a ‘thing’ that causes me pain at different levels in different places of my body. On a scale of one to ten i’ll be at a minimum of 3 on the pain scale. On a really bad day I’m hitting 10’s straight off. Not always all over, mostly in specific points. Today for example on the Painscale I’m averaging a 6 in my neck and left shoulder, 4 in both my elbows, 7 in my right wrist, 8 in my lower back and hips and a measly 3 in my ankles…pretty good going for a mild temperatured, nothing gone to plan Monday.
Other symptoms I experience at varying rates throughout a ‘normal’ week;
- pins and needles (mostly in feet hands and lower arms)
- Muscle spasms. Pretty extreme ones have been responsible for 3 smashed phone screens and near scalding of a friends face with my freshly brewed tea. (Soz mate)
- Migraines-thankfully few and far between.
- Toilet dramas. I’ll spare the detail but essentially I can’t (at all) or I need to go every 30 minutes. Number ones more than twos may I add.
- Insomnia- great for when I’m behind on a TV series but mostly (a bit) shit.
- Fatigue. Probably little to no surprise that my body just gives in now and again. When I hit this point I will not move or function at all for a minimum of 2 days. At these points my phone will feel too heavy to order take away, and the kitchen may as well be in Venezuela because I can not move (for toffee) to feed myself.
It can be a bit miserable to say the least but most of the time the above (bar the fatigue) is not the worst symptom of Fibro.
In my experience the worst part is the cognitive impairment, or what us fibromites refer to as Fibrofog. Catch me on a foggy day and I’ll look right through you, stammer, stop talking 6 words into a sentence, not realise I am suppose to respond to a question, forget how to open doors, not know where I am, forget what you said 30 seconds ago, not recognise my nearest and dearest in the street and seemingly not know the most basic of words.
Some stand out examples of fibro fog that have tickled me:
- Confusing Bleach bathroom wipes for face wipes
- Confusing liquid soap for toothpaste
- Storing my phone in the fridge
- Drinking a strangers drink on a train
Some stand out examples of fibro fog that have scared me:
- Crossing a road and narrowly dodging a moving bus…I knew the bus was moving at speed but I just didn’t register the risk.
- Leaving the oven on for 12 hours whilst I was out all day
- Being a split second away from mowing down a family of four because I didn’t register a red light at a crossing.
Fog for me is and has been the most embarrassing, irritating and debilitating of all my symptoms. I can’t drive (safely so I don’t at all), I can’t communicate effectively and I can’t trust myself or my judgements!