Walking the Maze

Today I had some news that left me for a while feeling almost enraged.  I wanted to scream, shout, punch something, shout at the world and tear down walls. 

It’s a delay in my housing, which whilst frustrating isn’t the end of the world.  However my mind had got used to planning for moving in the next fortnight, now it could be over a month.  Hence the instantaneous combustion!

I know myself pretty well, so I just gave my head a few hours to shut down and process, I usually hit a TV show so on the surface I’m distracted but behind the scenes my brain does its thing.  I know the reason for my almost ‘fight or flight’ response, and it’s very simply down to a lack of control. 

I have spent a lot of time as an adult managing things, I naturally pick up projects whether at home or work and run with them, because that way I can influence the timescales, the strategy, the outcome.  Interestingly the same applies to my frustration with RA, it is the feeling of a complete lack of control that sometimes makes me want to just shut out the world and not deal, after all what’s the point if I can’t make a difference?

I could almost describe this last few months as being in a maze.  I’ve felt trapped and lost, taken turnings that have given me hope only to run straight into dead ends.  No wonder my poor mind just wants to hide under the duvet, this is hard work! It’s as if the walls of this maze are designed to give me tantalising glimpses of the outside world where ‘normal’ lives, just as I turn the next corner into a dead end or another junction.

However… I have no intention of giving up. Yes this has been tough, my housing is still unresolved and my RA still flares constantly.  I’ve had added tentative diagnosis of either fibromyalgia/ME, and as I’ve mentioned before I find the demon fatigue the biggest battle of all.  But my only option is to keep moving.  I make the decisions to go left or right, and if I run into those walls I turn around and keep on walking.  Every maze has an exit, I will slowly but surely find the way towards mine. 



Fighting talk!

I’ve actually been pondering this post for a few weeks, and just couldn’t think how to start it without sounding like I’ve got a severe case of sour grapes.  I haven’t, honest!

I am simply finding I get, possibly irrationally, annoyed at people on RA forums who do the fighting talk thing.  You know the ones, I saw a classic today, it went something like “well I’ve run two marathons, been skiing and worked all week, I’m not letting RA beat me, you have to fight!”.

On the surface you’d think that was great yes? And I’m truly happy for anyone with RA who manages to exercise well and live a comparatively normal life. 

Unfortunately, every time I see this kind of post I get cross.  The anger is a defence mechanism, because what my mind reads into the words “you have to fight” is a stream of unhelpful thoughts…. ohmygod I’m not trying hard enough, I’m too weak, I’m letting RA beat me, I’m just useless.

Because I’ve done some basic CBT (Cognitive Behaviour Therapy) I can recognise these thoughts when they happen, and I then gently challenge them.  So the conversation in my head goes something like this…

I’m not trying hard enough…... OK. You are taking your meds, you are following your doctors advice.  You are learning to pace yourself.  You are reaching out for help.  What else could you do? Hmm, yes, I’ve done my best! ✔

I’m too weak…. No, you have a diagnosed chronic illness, and an additional diagnosis pending.  Both cause chronic fatigue.  You’ve got this far, you can do this.  Hmmmm..  OK, one day at a time!

I’m letting RA beat me….. Hang on, this has been one of toughest periods of your life, you’re still rocking up every day, you’re keeping hold of your sense of humour and you’ve made some fantastic RA friends.  Hmmmm… Not exactly quit, have I!

I’m just useless. Not at all.  Since day one of your diagnosis you’ve worked hard to become an informed patient and an advocate for others with RA.  Strangers have thanked you for support.  You really are useful, and you can grow this as and when you are able. Hmmm patient advocacy is something that interests me!

What you need to bear in mind is that this all takes place in nano seconds,  the anger response, the gentle challenge, the positive replacement.  But it happens (or something like it) every single time I see an RA patient say  “oh you mustn’t give in, I do three jobs, raise the kids and run yoga classes in my spare time”

I’m hoping this isn’t coming across as a whinge, it certainly isn’t intended! I guess what I would really like is for people to be a little bit more careful with their use of language, and show some consideration. Something I strongly believe having talked with hundreds of people over the past few months is that every RA patient has to work to find their own new normal, within the limitations of their symptoms. 

So whilst I am genuinely happy to cheer on patients who have milder RA, and can still hop skip and jump, please bear in mind those of us who struggle just to sit up, get up and walk.  We are fighting just as hard to get through, just in different ways with different goals.

I’m trying too, honest!