i’m usually very upbeat but recently (the last few months) i feel like my life force has drained out of me.

i’m moving like a battery operated toy which needs new batteries.

people who live on my road are commenting on it.

kind remarks like, “are you alright?”

to be honest i am terrified.

hoping for some realistic advice.

thanks in advance

hey carole

what are you terrified from?

ellie x

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losing the life force!

i’m usually practical and it sounds very daft but i’m terrified.

i’m probably just being a mardy arse but i’m scared.

no idea who to turn to.

so i’m sorry for putting it all on you lot.

thanks ellie for replying

carole x

no prob carole!

i feel so out of control sometimes but…

hang on in there-everything is constantly changing.

ellie x

Aw Carole

I think this is a bloody terrifying disease. And there’s no reason why you can’t suddenly be scared of what’s happened and is happening and what’s to happen in the future too.

In fact it’s surprising that we don’t all admit to being scared more often.

And sometimes it just shows in our faces. And our bodies. Just the general worry about it.

Me, I’m scared about my brain. The fact that no one but me seems to think there’s anything wrong with it. My 78 year old mother thinks her aging brain has the same problems as my middle aged brain. My neurologist thinks it’s OK, because I come across as OK, and honestly who cares if you can’t remember the plot of the novel you read last week? Apart from me.

I’m scared about my declining physical mobility.

And I’m really frightened in case my husband gets ill and I’m left alone. I keep telling him he’s got to outlive me.

So I don’t think you’re alone. You’re never alone while you have us anyway.

Sue x

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Oh Carole, You know you can turn to us about anything. We’re the one’s who really understand MS. I’ve used exactly the same phrase quite recently - “Like I need new batteries.” feeling. I don’t think it’s anything to be afraid of and I’m sure we’ll be back on form soon. It’s beer o’clock down here so, until next time … Yours, Anthony xxx

thanks all of you. AD is right, we will be back on form soon. (soon is pushing it a bit- i’ll settle for next week) thank you ever so much. when you don’t know where to turn, this is the place! love you all up to the moon xxx

I know exactly what you mean. I (along with others I assume) get completely terrified, scared of absolutely everything - the present and the unknown future. I take a deep breath (& glass of wine!) and think how lucky I am compared to some. I’ve got 2 legs, 2 arms and a reasonable brain, they don’t all work anything like they used to but I’ve got them. Sadly some folk who have brilliant health etc get involved in terrible life changing accidents. No-one knows what the future holds so I try my damndest to think positively, enjoy the wine and avoid oncoming double decker buses! I CAN DO IT!

Tippy x

thank you everyone who replied.

amazing how things can get better really quickly.

i’m the eldest of 3 girls, the middle one was really horrible to me a few weeks ago but the youngest has invited me to hers this afternoon.

lunch of sandwiches, salad and copious amounts of gin and tonic!

her garden is a proper sun trap so i’ll be getting a hefty dose of vitamin D.

feeling lucky now!

Me to. I hope if I lose it I won’t even know about it. Mind scares me more than physical.

I don’t want to forget or not be me. Sometimes I look at my daughter, hold her hand, look at Mr FB and stroke his face and will myself to remember how they looked and felt forever.

Much like Ssue I am terrified Mr FB will not be able to look after me.

Hopefully someone will turn the lights on and we will all see that it’s all okay and just a bad dream.

You’re not alone Carole. If my cognitive goes I’ll be happy away with the fairies so I won’t be frightened if you won’t x

hey thank you all for coming to my rescue.

it means a lot.

however i have had the most perfect afternoon with my youngest sister.

had a shedful of vitamin D.

feel a bit of a fraud, starting off so depressed and now i’m all smiles!

you are all heroes!

Phew! I am glad to hear that! Does that mean that this scary thread can go back into the depths?! It’s quite scary here … brain fog was more appealing and I don’t mean the thread obviously that’s always appealing… x

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Hi Carole I am glad you have had a nice day. I guess it is best to try and deal with one day at a time, easier said than done I know, but I find the future too daunting. Sending hugs, Sue x

that is not being a fraud, stuff changes and how we feel about things also changes. If I become too consistent my wife worries that i am ill.

Delighted to hear you had a great day with your sister.


i just had a massive wobble.

for the time being i’m just my usual unsteady self!

thanks again to my heroes and good friends.

carole xxx