Blog 8

Hi Everyone!

Blog 9 is imminent, but for the moment, here is Blog 8 – the shorter one!

Last Friday, MND Scotland bravely (and possibly foolishly), gave over their Twitter account to me for the day. The idea was to reflect on one patient’s day living with MND.

Before agreeing, I kept thinking: but I’m only one person; I’m nothing special; why me? And my form of MND (bulbar) is only one of the many facets of this cruel illness. But I was persuaded finally that this was to help supporters to understand the disease during awareness week and so I  said Yes!

Being a Twitter virgin, I got valuable technical help from Niamh Callan, the Communications Manager. But the biggest challenge of all was to keep to the limit of 140 characters for each tweet. Not 140 words, but 140 characters, including punctuation and spaces! As an ex English teacher, summarising should have been easy, but it wasn’t. However, once I got into the swing of it, it became fun, trying to balance the serious messages with some humour. As you know, it’s my way of coping.

The idea was to post regularly between 9.30am and 9.30 pm and try to reflect experiences, problems and solutions across the hours of the day, from getting up to going to bed. In that not everyone is tuned in to Twitter, I thought people might find it interesting to see what I managed to tweet within the given limitations. So not my usual blethery self!

In the end, I tweeted 14 times. There was a good reaction and many messages were re-tweeted. Hope some of the ideas got through as part of Awareness Week.

·         I’m Liz Ogg. MND from 3 yrs ago. Bulbar form - can’t spk or drink. Can still eat - just. Use app 2 communicate. Wish there was sarcasm app!

·         Not great night. Arranging pillows at 4.00. Saliva flowing. Legs weak today – accessing shower a pain. Don’t want husband in shower too!

·         Usual b’fast: hot choc, pain au choc & banana. Liquids & meds thro tube. Scan MND Together on FB- much activity! Plan imaginary sky-dive.

·         Friends coming pm. Husband helping with hair –ulp! Good to feel part of world. Would kill for glass of chilled white. Not same thro tube

·         Want 2 know more about me & MND? Check out my blog on lizoggmnd@blogspot.co.uk. Personal, down to earth & practical with a sense of humour

·         Lunch soup & trifle pureed. Food more difficult. Hard 2 move tongue & keep lip seal. Saliva thins food. Jaw clenches. Just want toasted cheese.

·         Great time with friends! Used app 2 have my say. Used my posh voice. All very aware of me typing & let me speak. Wish I could still laugh

·         Socialising great but smile muscles ache. Feet swollen too. Husband now wants me on exercise machine. Great! Found my swearing app in time

·         Using zimmer to walk, but with hub balancing me from behind. Much as I love him, miss free movement. Maybe after skydive, try rollerboots.

·         Dinner: lemon chicken/mash & crème caramel. Mouth/tongue tired but managed maj. Riser chair a boon as watch TV & try not to fall asleep.

·         Lovely nightly phone with family. Keeps me centred. Grandchildren positive force. Helps me forget. Muscles tired – can’t keep eyelids open.

·         In this last hour, thank you to MND Scotland for this great chance to post. And thanks to Niamh for all her support, technical and moral.

·         Looking forward to nightly routine – NOT! Thank heavens for stairlift. Need help getting undressed. My own Brexit! (exit from bra).

·         Palaver getting to bed, so tired. Sink in pile of pillows. Another day 2morrow. Thanks to all for reading. Good luck to all on your journey!

Thanks for reading. See you soon in Blog 9

Liz