I will do anything once and if I can I will continue until the next bad day ….
I’m a Duracell bunny always pushing forward, high on living life …well whilst I can ……
Or am I trying to cram a load of ‘stuff’ into my life so I can look back and say I can sit with whatever MS throws at me now because I’ve done X Y Z ….but there are stipulations and I’m not totally in control ….Tomorrow could be a very different day …and that is scary …..
People close to me still struggle with what MS is doing to me ….
I call it top trumping….you know …Ohhhh I’ve got that ….oh yeah I know what you mean that happens to me …..bla bla bla……
Others I have shared my frustrations with called it ignorance….and maybe their ignorance is bliss ,but it sure hurts me when I hear their flippant comments….
but I keep smiling ….biting my lip and on occasions losing my shit !!! ….I’ve given up feeding them literature I’ve given up using my spoons trying to explain the nature of this disruptive debilitating disease ……
Most ‘normal’ people struggle some days to accomplish what ever their load may be …..
But stick MS into the equation and watch a strong happy soul crumble…
So what do I do to make sure my soul is fed ,my heart is happy and my emotions kept as stable as they can be ….
1) Firstly We put a smile on ones face….. We do not leave the house without our knickers on and its the same with my smile …
A smile makes our eyes sparkle and in turn our mannerisms show us to be kind, loving and fun even approachable ..try it …. I have mentioned this before and hope you have spread those smiles around for they cost nothing ……smile at a stranger say hello spread some kindness and compassion …. !!!
2) I choose to do something to feed my soul every single day and It is normally the way I start my day a morning walk with Jackson amongst nature well a somewhat stumbling stomp in my wellies !!!….
I love singing birds… that’s just the best tonic ever ….
And then the next best thing is the half hour session at the feel good factory working on machines that assist my workout if I have the energy ……
Selfish perhaps some would say that I put myself first but I know its the most important thing for me …..
So we all know that without breakfast our body doesn’t function properly or as well as it could ,and its the same for our soul …
Our soul needs feeding to keep our mental health stable …….
You see if I choose to do all the mundane day to day stuff first then I wouldn’t have any ‘spoons’ left to do those nurishing feel good things ….
So that downward spiral begins …
and surprise surprise you seem to be staring at someone you do recognise in the mirror yet the soul isn’t shining ….your eyes don’t sparkle ….
Depression becomes your best friend consuming your entire being ….illness or no illness we forget to make sure our soul is fed……..
3) I use anything that will make my life easier and I’m not embarrassed anymore to be seen using my stick or parking in a disabled bay or even using any other piece of equipment needed to get me through a typical MS suffer’s day ….
I see people staring at me …
I can’t help but think that they are judging me, but to be honest I’m passed caring now ….
I know I’ve been called all sorts of things by the general public …and if the words don’t leave their lips I can see what they are thinking in their eyes I feel like I need to tell them wha my issue is …..
The latest label I was given was a
“small narrow minded disabled C*** ”
All because I parked on the road in front of a pathway (where there were no parking restrictions, no dropped curb or pavement for that matter and no yellow lines in sight)..
It broke my heart to think that someone felt the need to slate me on a piece of paper tucked under my windscreen wiper aimed at my disable badge that sat in my window, because I presumably blocked an opening that lead nowhere and it irritated them ….
On a lighter note, one thing I can include in making my daily life easier is Tena pads…. They are on my list of highly important tools in my very oversized MS tool box the tool box I’ve spoken about before on here…..!!!
4) I rest when I know I need too….
It’s a bit like that afternoon sleep you are made to take when you were younger if your parents are letting you stay up to see the New year in ….
Fatigue is hard hitting …
It leaves you heavy ….Like you are stuck in porridge….
Heavy legs and arms….
A spine that hurts to hold your body up ….
swallowing difficulties, shortness of breathe ….
creeping sensations, pins and needles, a headache ….
An extremely fuzzy brain and for me the ability to talk any sense !!!
I speak a complete load of crap when MS is doing its best to muck me up !!!
I don’t hear what people say correctly and oh boy am I craggy when they try to correct me !!!!
I am no use to anyone when I’m like that…..
So how do I keep going ?…
Well with gritted teeth and people around me that want to see me shine they want only for me to be happy …..
So a walk along the jurassic coast path looked something like the photos attached to this feed….
and then a big rest…
The right equipment to help me succeed and a lie down back at the van once we were done !! ….
and that my friends is how I fed my soul……
how do you feed yours ???
love and light kirsten xxx