The weight feels like water, running over and down and around and under me
It twists my perception until I no longer recognise up
This invisible drowning, choking my mind and my soul
My thoughts turns to water, all liquid with no train to grasp
I see land all around me and it teases me with a veiled normality
My limbs twist and ache, heavy with memories of movement and ease
I reach for a branch, a twig, a leaf, anything to keep me floating
I know that swimming is forever beyond me, that tide has turned
And again today, I fight the call of the depths
Where there is no weight, no water, no pain, I strive just to float
All the time invisibly drowning
Swapping Exhaustion for Sanity?
OK so one day last weekend I achieved. I wrote this later that day.
I had a plan in my head for the morning I knew would be a struggle. Firstly because it meant getting up, secondly because it involved some small physical exertion.
In essence boxes into car, drive to car park, unload car, sell stuff, drive home. 2 hours tops. Simple.
In practice I mentally shoved my incredible fatigue to the back of my mind behind a cupboard, then grabbed the incipient pain and closed the door on it before it started showing off too.
By 10.30 am I had been up for an hour, had sold most of my stuff and was begging myself for Tramadol (This is a mental battle I’ll go into another day).
I was determined to have a “normal” today, so I pushed on, met a friend for a drink at lunchtime then hit my local for one of their fabulous roasts. This is where it really went wrong.
I nearly cried as I struggled to cut up my food, my hands were agony. It ruined most of my enjoyment but I was there, I struggled on. I wanted the tramadol more and more but I won’t take them and drive, so the pain crept on.
By the time I got home I was ready to collapse, but some inner stubborn demon made me unload the bits from the car, empty the cat litter and put the rubbish out.
OK. Hands up, seriously rookie mistake day. I am now in pain everywhere. Joints throbbing and burning, hands on fire, muscles aching and screaming, and my lower lumbar is beating it’s own tattoo.
So down go the tramadol (finally). And as I lay here waiting for relief and monitor which body part is screaming loudest I am pondering this… I actually feel quite positive. Despite the agony (no exaggeration) some small part of my brain is happy. Satisfied. It’s actually jumping up and down and yelling FURA!
My worry is that this is not a healthy ‘high’. It’s great that I feel achievement, but it really sucks that the only way I can do that is by literally ignoring every pain receptor in my body until it screams stop. I suspect my good mood will drop as the pain increases now I’ve stopped moving.
My mental health is as important as my physical, feeling well is a holistic challenge and must be treated as such. I guess my lesson from today is pace and limits. I suspect my poor body will remind me of this incessantly for a while.
Why me?
The first question has to be why. Why start to blog, why me, why RA, why now? And dammit now I’ve asked I have to answer. This requires a little self analysis, but it’s my blog, indulge me a little?
The why’s are actually all one question, and the answer is Rheumatoid Arthritis. Diagnosis day Tuesday 10th March 2015. It feels like that should be bigger, maybe with banners and fireworks, though not necessarily pretty ones. Very much a D-Day. More on that later perhaps.
I started having obvious symptoms around six months ago, and my standard method of processing things is to write. I will think them over, but will then start making notes, run them past friends, whether in person, online, by text etc, I read, I investigate, I gain some comprehension, then I process by writing. Or typing. Semantics. In it’s essence writing down my thoughts is my filing process.
I have been very fortunate to have discovered a couple of great groups on facebook who have not only put up with my sometimes very wordy posts but made me feel welcome, and validated.
And that leads me to here. RA is a demon. Make no mistake, it’ll enter your life oh so quietly, and then overnight it becomes your every waking thought. It provides pain and aches and stiffness and inflammation and itching and pins and needles and that’s before you get started on the medication. But above all it brings what has currently become my nemesis, fatigue. And this is where validation has been a literal lifeline – the fatigue has had me on the floor, and without the online RA community I would have felt as if I was going mad. It leaves you feeling so isolated and alone, as if no-one understands. Except they do. Those beautiful fellow RA’ers, they get it, in spades.
So, blogging. I’ve attached a wordcloud of my brainstorm when I was thinking of doing this blog, key for me is having somewhere to connect, hopefully inform and share, occasionally (or maybe more often) vent, but mainly to remove the isolation. I know I am not the only “single rheum” out here, and my hope is this blog will become a virtual room where connections can be made, or sometimes just validation sought.
We are NOT alone.
singlerheum 