MS really doesn’t like you having fun, does it? A day out yesterday, then a late night working on a little poem (I had to seize the moment of creativity), then I wake up today feeling like I’ve been cross country running all night. It’s like being punished for living life!

I suppose I need to be disciplined. Observe a fatigue management plan. Have a quiet day. But isn’t that sometimes so frustrating?!

I suppose I should remember to be grateful for what I can still do. Or more to the point, what this beast called MS still lets me do.

I shouldn’t personify MS. It isn’t a malevolent being. It’s no one’s fault. I should make my peace with it again and stop wasting energy being angry with it.

But -

I’ll go and have a cup of jasmine green tea, breathe deeply then sit in the sun for a while.


It certainly keeps fearing it’s ugly side, just to remind us it’s still there…as if we need reminding!

Have a restful day, tomorrow hopefully will be kinder.

Pam x

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Yes, I’m sitting here trying to be good after going out twice this week. And I’ve just completed a 10,000 word thing for a local memories group on face book. I love writing but it comes and goes with energy. That’s a lot of fizz for the poor befuddled brain of the MS warrior. I haven’t done any poetry lately but maybe soon. ~It can get almost too personal if we see the MS as a conscious force. We could get into all sorts of levels of blame and self-worth. Still, every day is new. (A knackered new Sometimes.)

Best wishes, Steve.

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That’s one thing the writer was definitely 100% correct in saying, MS is an “Awkward B**ch” - I’ve cut back so much on social stuff now as I just can’t take the pace.

On the plus side, if I don’t plan too much, I don’t sleep thru occasions I want to be present for With the last couple of weddings I’ve been to, I’ve managed to arrange a haircut the day before so at least had one major bit sorted at the right time.

I’m not sure I’ll ever get used to it but I just make sure I’m clear around important events so I don’t run out of steam too soon.

Sonia x

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I think we never really get used to “pacing” ourselves! Over the years I’ve always pushed beyond my limits, just sadly the limit becomes less and less! There’s also a considerable amount of satisfaction in doing something that you really know is beyond you! Sometimes it’s worth the consequences!

I hope you’re back on track now Lapwing?

Nina X

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l had a phone-call at 4-30am - my mum’s lifeline people - to say she had fallen and the paramedics were there. lt did take me 25mins to get round there. At that time in the morning l found it difficult to even think straight. l quickly clean teeth washed and dressed - in case l was going to be at A&E all day. lt is easier for me to get to my mum’s house on my scooter -as l can get right up to the door. Thankfully, she is OK - and was back in bed when l got there. But l did feel guilty - and tried to explain to the paramedics that actually my mum is safer on her legs etc. at 92 - then l am. Had to assure them that she was fine at home and not to take her to hospital. The rollator ,l bought her, was tucked away in her spare bedroom. She said she does not need to use it. Although l do when l am round there!. She is completely deaf -so cannot use the phone as she can’t hear it.

Sat there with the paramedics filling in their forms it did give me the chance to take in how clean and tidy mum’s bungalow is. She insists on doing all her own house-work. Not a biscuit under the sofa!! - Couple of patches of dust where l can see she can’t see to reach. She has a strict routine with all she does all day - which obviously is working.

Been back since - and she was sat eating her muesli - smiling away. lnsisted on coming and saying hello to my dogs - and giving them a biscuit. Husband has just called in to see her with the newspaper - and she has completely forgotten what happened.

Now l do not know whether to go back to bed or not. l shall be tired later on.

Eeee Frances!

What a to do…there`s your lovely ma, 92 and still battling, bless her!

I see you wrote this a few hours ago, so did you go back to bed or what?

If your mum is deaf, how does she summon help…care line?


I did recover, thank you - although I had a lot of “catnaps” the following day!

Today I’ve been out in the garden building a little rockery. I got plenty of energising sun and fresh air, so feel fine. The weather is to be bad tomorrow, so I will have a day of rest.

Hi Poll, l have been round a couple of times since. Just taken her a smoked salmon sandwich - to try to tempt her to eat a bit more at tea-time. And OH has been there today planting up her tubs.

l am shattered now - but do not want to go to bed too early. Yes - she has a life-line button - and thankfully did remember to press it - although she has forgotten all about last night!!

SJ your mum sounds lovely, I wonder do you get your determination to get on with it from her? Sounds like it to me.

Jan x

My mum is one of an amazing generation. She joined the WAAF 1940 - learnt to drive heavy goods vehicles - lorries/ambulances/fire-engines etc at 17. She worked with bomber pilots - loading the armoury onto the planes - and seeing the planes off - and crucially, saw them back in - often on fire - or with landing gear not working and having to crash land. She put out fires and dragged injured pilots from burning wreckage. She lost her hearing - because of the explosions and general loud noise she worked with. No ear defenders then. We have never managed to get compensation for her deafness. Did try.

She has been such a wonderful inspiration to everyone who meets her. Always worked full-time but still found time to teach dog obedience classes - started over 60yrs ago. My father also taught at different training classes up until his death. Mum used to do dog trials - competing with armed forces and police with her Rottweilers. Her dogs being brilliant at search and rescue. She loves to see my dogs - we call round everyday on our way back from a good run. Reggie - my rescue rott who is trained PAT dog and 3 other rescues. They all sit nicely for her to give them a biscuit.

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