Part one of the Ouch! series.
Today, my Facebook memories reminded me that this time last year I had just completed the one million steps challenge for Dementia UK. This involved walking approximately 11,500 steps a day for around three months. Although it was challenging, I completed the steps with relative ease.
One year on, I’m not convinced I’d be able to finish day one of the challenge!
So, what has changed?
Last November, I started to experience significant pain in various joints, my sleep was impacted and I felt tired all the time. I booked in at the GP convinced that the time had come to inherit my Mum’s Rheumatoid Arthritis (yes, I know that’s not how it works)! As the tests, scans and Consultant appointments progressed, I had pretty much accepted that an RA diagnosis was on the way.
Instead, I was diagnosed with a condition I’d never even heard of…fibromyalgia!
Those who know me will not be surprised to hear that I immediately started reading up on this mysterious illness. Thanks to the ‘Mayo Clinic’s Guide to Fibromyalgia’ I discovered that the symptoms date way back to Biblical times and are evidenced throughout the centuries.
Apparently, it was good old Job that kicked off the fibro trend as he cried out to God in pain.
17 Night pierces my bones;
my gnawing pains never rest.
(Job 30:17 NIV)
Now, personally I find this Biblical link a little tenuous but who am I to argue with the wisdom of the Mayo Clinic? The other fun fact I discovered is that fibromyalgia is exactly the same age as me, gaining its official title in 1976.
Isn’t that smashing!
Apologies for the sarcasm as I know it’s not an endearing trait!
I’m just a bit grumpy about fibromyalgia as it makes no sense at all.
It’s always a good sign when most of the literature connected to a condition reassures you that it is in fact a real condition and not in your imagination. It kind of gives the impression that there are a lot of people out there who think it’s all a bit made up. I have to say that those who know about my diagnosis so far have been understanding, but it’s clear from one google search that this isn’t everyone’s experience. In fairness I understand those who are sceptical. Fibromyalgia is one of the most random things I’ve ever had to deal with. With just a few months of diagnosis in the bank, there appears to be no rhyme or reason to the time, duration or intensity of the symptoms. The pain management system of the brain goes into overdrive, turning up the pain volume and sending random messages to various parts of the body. I can be doubled up in pain one moment and right as rain the next. The pain relief strategy that works one day is totally ineffective the next, sometimes making the pain worse than the day before. I get why people find this condition difficult to grasp.
You will see me dancing and singing as I lead a Praise Party at the Yorkshire School of Christian Arts…but you won’t see me hobbling around and sneaking extra naps the next day.
You will see me leading Youth Chorus rehearsals, full of energy and life…but you won’t see Lyndon helping me out of my chair the following day because everything hurts.
You will see Bible Studies, essays, and hopefully blogs, posted and submitted on time…but you won’t see my frustration at not being able to remember a sentence I’ve just read and constantly losing my train of thought.
I don’t want to miss out on things when its a good day just so that people believe me on a bad one!
The way I’ve handled this so far is to enjoy the moments I’m feeling well and find a way to navigate the moments I’m not.
This last point is the reason I’m writing this blog.
The days of brain fog and pain are starting to get me down, mainly because they stop me doing what God has called me to do and I find that extremely frustrating!
There have been hardly any blogs from me this year as I couldn’t see the point of writing about this and definitely couldn’t see what purpose it would serve (I’m still not sure I do now)! Having said that, I feel prompted to share as I’m finding the more people I speak to about my story, the more comfort it brings them that they are not alone. Whether it’s fibromyalgia, chronic pain, long covid or any situation you’re in that you don’t want to be in, you may be able to relate to the next few blogs.
At this stage, I am naively determined not to let this health condition determine what I can and cannot do. Tomorrow I will join a group of fellow ouchy people for a nine-week pain management course. I don’t know what I will learn or how it will be relevant to this blog, but I felt prompted to finally start talking about this pesky illness from a faith perspective.
I respectfully ask that you avoid suggesting various lotions and potions that might help the condition.
I’m not at that point yet. The nine-week pain management course is more than enough for me to get my head around.
I less respectfully ask you to avoid at all costs using my counselling trigger phrase “be kind to yourself” as I won’t be held responsible for my actions.
Obviously I'm joking…or am I?
It still feels self-indulgent to write this, but who knows, maybe it will help me process what's going on and, more importantly, maybe someone reading this will feel less alone.
Closing Prayer
Dear Jesus,
Please don’t let them make me do yoga!
Amen
Kay Moorby
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