Lost for words….so frustrating and very sad for me ….



Ever found that your sentences can just disappear, like someone stole your words??

Someone or something just cut the tongue right out of your mouth ….

For me it’s not old age or stress…I wish it was !!!

For me its Multiple Sclerosis  ….

It’s a bit like the ‘walking into a room’ and wondering what  the bloody hell you went in there for  !!!

forgetting things and words are highly annoying ….

we have all done it ….

whatever age, sex ,creed or religion whether we are tall, short ,small or large  ….

We are only human after all and very busy human beings at that ….

I’ve done my fair share of ball juggling over the years as I’m sure you have too ….

For me I knew that If my brain is full of ‘stuff’ or if I was ‘stressed’ then  I was screwed.

We all lose the cognitive ability to function methodically and with an element of control when the brain is busy busy busy !!!…..

but MS….hmmmm,  well it just cuts the wires …..snip snip snip …

Lesions …..the little buggars …. They short circuit us….

We can be  fine one minute and gone the next  !!!

I was chatting to someone last month as they were putting on their face cream …way to much I will add lol and the absorption was crap ….

Me ” god you look like “……

she was laughing …..

but I couldn’t finish my sentence ……

My thoughts were at that point ….’arghhhhhhh this is happening way to often’ !! ……

I was only trying a bit of banter …an exchange of a joke …a bit of a giggle and nothing really that important   …

but I left her hanging in mid sentence .. I was dumb founded yet again at the lose my  words….

So the words that left my lips were

” ummmm ohhhh I can’t remember what i wanted to say ….oh it doesn’t matter …..my words are completely gone ….”

I would normally look to Chris to pick up that thread …finish off my sentence …knock me back on track ,but he wasn’t there to do it this time …

She said in a chatty laughy kinda way

“thats alright ….I do look funny don’t I ” …..

It was her way of reassuring me that it didn’t matter that I couldn’t take my conversation further ….

but I was left feeling

1) stupid

2) sad

3) frustrated ……

This happens more often than not and I also find myself losing the  thread or the actual point of the chit chat I’m trying to have ….

The bloody words just disappear ….

They vanish into thin air …. They do sit on the tip of my tongue …teasing me ….and  the frustrating thing is know I was telling a great story ….

I was a hairdresser and always full of chat ….so I never found  any kind of chat difficult ….

but nowadays …

Well is there a point in talking at all ??….

MS makes me feel on occasions like a muted voice  …a deaf person … and even sometimes blind …

All the senses that make us the person that we are, I can’t always access….

I’m not really blind, but I miss so much as I have to look at the ground to process how to walk …(proprioception)

I’m not really deaf, but if there is too much noise everywhere so I can’t break down what I need to hear  and process it accordingly …

and muted …. well I simply lose my words ……..

Sometimes I can function really well ….and then I can’t  !!!!

I short circuit …blip blip blip ….

People can’t understand what I’m trying to say … I go around about the houses trying to tell a story only to forget the ( I suppose what you would call ) punch line ….

People look at me confused by what I am saying …

I see in your eyes as you listen to me  your kindness …concern …compassion  ….

I know that you are just entertaining me, tolerating me, being kind to me  ….hanging onto the hopes that at some point in our conversation  I can make some sense for you to understand ….

and I’m truly grateful for your patience ….

But I also see it in your eyes …. the frustration… the sadness… the confusion…..

Lost for words takes on a different spin for me ….

The words “what was I just saying “leaving my lips on a regular basis my eyes searching your face for a clue as to what I was saying …..

I’m left exhausted from making conversation… that’s how it goes once I start to blip …….

So how can you help …..I mean really help …..

well ….I’m sure I’m speaking on behalf of anybody out there with MS ….

Please listen to an MS sufferer and help us communicate …Help us find our missing words when we get stuck …

Give us the time to compute …..don’t get cross if we misheard, misunderstood ‘got muddled or simply just didn’t Do !!!

Help us by encouraging us in anyway you see fit ….

But please simply understand that the time we give of ourselves to you is precious …

It is precious because we have to give our everything into being with you …

Our energy supplies deplete rapidly and recharging ourselves take so much longer than any ‘normal’ person …

Sounds crazy I know….

Everything we do takes our energy levels from full to empty and I hear you say “but thats normal for any person” ….

but how quickly that happens depends on an enormous combination of environmental stimulants like the wind challenging our balance or the rain on our faces… the sun causing a drain with it’s heat …. the noise around us , the volume of people, traffic going fast or slow ,lighting  in shops, the sun in our faces flash lights …flashing Christmas tree lights….and then the simple things like whether we are tired from all those stimulants  or whether we are experiencing an exacerbation or finally heading into a fun blown relapse   ….. !!!

Its tuff ….

but we are strong …

we have fight in us if we dig deep enough …

and if we can surround us with love and support from wonderful people then the whole world seems to smile ….and that smiling attitude is wonderfully contagious …..

So whatever your struggles …. Please keep smiling I’m passing my smile onto you wrapped in a big hug

lots of love kirsten xxx


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1 thought on “Lost for words….so frustrating and very sad for me ….

  1. Every moment with you is so cherished. Xxx I can see in your eyes the frustration sometimes to be unable to say what you want. Always here to help fill in. Xxx ❤️


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