Living with Heart

Archive for the Sjogren’s Syndrome Category

I do it for Future Me!

I do it for Future Me!

When asked recently what motivates me to Get up, Dress up & Turn up every day – I had a moment where my brain and my mind were in perfect synchronicity and I said …”I do it for Future me – everything I do now, I do so I can do it in 20 years time”. 
It hit the mark. It hit the mark for the audience but also for me. And I was quietly so proud that in front of a few hundred peeps – I’d come up with the goods! Happy dance time.
You and I both know that the future is like a furtive weather system. At one moment its clear and calm and then – BAM. You’re thrown in the deep end and the storm is taking things from you.

But I really, firmly, absolutely like totally believe that there are things we can do everyday that will take back at least some of that ‘clear and calm’. Even in the most pain with major fatigue – when the storm is raging – there are still ‘things’ that can be done for “Future Us”.

So – what? What are these ‘things’ for Future Me? Well, for me they are the basic things that I try to do everyday regardless of how I feel. 

I do something for myself, 

I do something for someone else, 

I do something for my physical health, 

I do something for my mental health, 

I do something for my family/friends.

I do something for myself. This can be as simple as indulging in a square of dark chocolate, having a coffee in the sun, having an extra long shower, having a massage session. Basically, anything that is self-care. Sitting in the sun on my balcony, rubbing cream into my drying skin…

I do something for someone else. Nothing diverts me out of my pain/fatigue cycle more quickly than doing something for someone else. I admin a Facebook group for women living with Inflammatory Arthritis in Australia (Swell Gals) and I’m on the group every day in some capacity. Even just to like a post or to add a comment of support to someone having a worse day than me. This makes me feel connected, a part of something, like I have a purpose.

I do something for my physical health. This will take a different form depending on how much the storm is raging. On one day I may walk for 30 minutes as a ‘thing’ for my physical health – on other days I will rest and have a sleep. I’ve learnt to listen to my body and hear what it’s saying.
I do something for my mental health. This is a no brainer – or maybe a brainer (lol). Every day I meditate in some form. Some days I will do a formal mediation at night just before sleep. Other days it will take the form of several rounds of deep breathing scattered through the day. I take my breathing down to 4 breaths a minute and this centres me. It keeps me grounded. Other days I will do a visualisation exercise where I envision my pain as being surrounded by a bright blue/white healing light. As though the brightest ocean is bathing my joints with peace and calm.
I do something for my family/friends – my connections. Every day I connect in some way with family or friends. A text to my ‘moved out’ son, a what’s app message to my sisters, a call to my mum. A coffee with my ‘still studying’ daughter. A visit with friends or even just texts.

Thank you for reading this. Thank you for taking time to listen and to hear. Thank you for seeing my life through my joint perspective. 

He stole my water bottle – and other life props!



‘Could you please fill my water bottle up – thank you so much.’

I swear that’s what I said to the coffee shop dude. He must have been having a serious brain fart because he emptied then threw my water bottle out. He. Threw. My. Water. Out!! Who does that!

Ok, calm down Michelle – settle petal – it was a 3 day old water bottle. But…..water is my life prop. Other mythical ‘well’ people might have things like lipstick as there ‘must have in my handbag item’ life prop. Mine is water. And eye drops. And hand sanitizer. And pain meds for all types of pain. 

One of my first symptoms of inflammatory arthritis was dry eyes & dry mouth. Like eyes so dry that my eyelids would stick to my eyeballs (well that was hysterical the first time it happened at 3am…getting slightly old now). A mouth so dry that I would, could and do choke on food. 

These freakin’ annoying symptoms endure. They never leave me. It’s like we’re in a weird friendship where they make me crave water & I have to constantly cave to their demands. None of my drug treatments have really resolved these 2 symptoms. If they were friends they would be so in the frenemy zone.

So back to the coffee shop dude. I immediately asked to buy a new bottle (I do hate ruining the environment because of my need for water in plastic bottles – but what’s a girl to do?) “We only sell water in glass bottles here”. Oh holy stab my eyes out with steak knives – what form of derivative hippsterism is this???? My shoulder already aches from holding my bag – it ain’t gonna cope with glass. So I smile (wanly) and trudge away. 

I trudged around looking for somewhere that would sell me just a plain bottle of water. I had a busy day and this extra trudge had not been factored in and I would pay for this later. Well after 10 minutes I found a water bottle and lovingly stroked it as I antibacterialised my hands and cracked the top – and swigged away. Bliss.

This whole event really got me to thinking about how dependant I am on my little life props – the things that get me out the door and keep me within a reasonable level of comfort.

And none of the things below are luxuries – they are my essentials. My lovely little precious bottle of Hylo-forte eye drops are número uno – if I don’t have that bottle and a backup – well life as I know it ends and that’s it. I really need to have access to water because – throat closing up – not fun. Anti Bac gel – because I don’t want the germs I already have little alone your germs (sorry not sorry). Lip balm – dry lips are a pain. And then there is the pain meds – I have a lovely array for any occasion. Sort of like some people have an array of lip gloss in their petite hand bags – I have the equivalent in pain meds. 

So what are your life props? What’s your ‘must have in my bag’ items?

Thank you for reading this. Thank you for taking time to listen and to hear. Thank you for seeing my life through my joint perspective.