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Outing cut short, how to explain to friends so they won't stop asking to take you out

Hi folks

I could really do with a leaflet to show people the symptoms of MS, couldn’t find one on the MS site ‘Symptoms of MS’ so I’ve tried to make my own, by copying some of the headings and adding things they’ve failed to include.

Anyway, my friend’s husband dropped us off at a craft centre near to where we live, I was enjoying a cup of tea and was suddenly overcome with ‘the hug’, my friend (who does not have English as a first language) is keen to know how MS affects me ’ as I look so well’. I bumble some answers to her but would really like to explain properly and I stumble over words, thus the need for a leaflet.

I was upset that we had to ask her husband to collect us early as what with the hug and feeling unwell and was just too hot but am fed up with not getting many invitations out. I do think they will ask me again as I’ve sent my thanks on Facebook but do know that some family members have all but given up asking me out.

I wondered how others cope, am I to stay in this prison called home? going on MS outings and my buggy trips to town when the weather allows.

Iit’s made me feel quite depressed today, when I should be feeling good.

Wendy x

hi wendy

ms is like a naughty chld who you can’t take anywhere.

everybody knows a naughty child - i was one!

do you think your friends would get this one?

now shake off that sadness.

carole x

Wendy,

Have you ever heard of the “Spoon Theory” ?

It’s a very good explanation of how we (…or anyone with a neurological condition) need to budget energy output throughout the day, and helps others to understand how this aspect alone can have a serious impact on all areas of ‘normal’ life - areas that most people don’t even have to consider.

I very recently had a visit from an OT who was kind enough to let me have a printed copy to share with my own family.to help explain things to them (…and goodness knows it explains things a lot better than me !!)

Dom

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The spoon theory is pretty good, i usually also say that i use to be a duracell battery now i am a cheap pound shop one which needs recharging all the time

It is hard for folk to understand because symptoms can be so invisible

Thank you for the reply Carole, I have printed off a list of symptoms so when people are curious I can dish out a sheet.

I will use your example of a naughty child, as well it might add some humour to the occasion (I do wish there was a spell check on this site).

Wendy x

I’ve just read some of the spoon theory Dom, it is a very good explanation of how someone lives with a Neurological condition, cheers.

Wendy x

So true Trish, the battery example is nice and simple and makes sense.

Wendy x

also my son (who is an electrician) said i needed a rewire!

wish he could rewire my nerves!!