Day 25 – In my Liverpool Home

This three quarters through my 100 days now, I wake again to a tender right hand , I ignore it as we having a day out to where my heart beats faster, Liverpool. I have always wanted to go the Museum of Liverpool and this is the day . We have a lazy morning and breakfast of sloppy eggs and set off . I drive as I can and we arrive to the sight of the Mersey with a breezy sunny day to appreciate .

We started with global influences of Liverpool on the ground floor with a local band playing all the Liverpool folk songs such ‘ The leaving of Liverpool ‘ and ‘In my Liverpool Home’ as ambled around the artefacts. We ended on the top floor which detailed the numerous artists of Liverpool including authors , musicians, poets, playwrights and actors . We finished off the day with a ride on the wheel overlooking the city as the sun was dropping from the cloudy sky.

Ruth drove home and I made some fish dish again and we sat and relaxed but while I was typing on Facebook my hand suddenly gave rise to an acute pain ! I couldn’t move without putting myself in agony … I can’t believe this !!

My good mood plummeted, as I read my new blogger friend Stuart recent blog, check it out : ‘ Drinking through a straw’, he writes so well and it is so good he experiences my experiences , it is like somebody understands . I feel trapped like him. I fear that my right hand is going next , this such a cruel combination. I managed to give myself fluids with my left hand with a struggle with the syringe and my tube …. so I am still independent!
I stop myself from crying as my breathing gets difficult then. Ruth, my mate is beside as I type my thoughts out with my left hand and decide to brave and trudge on as I take my very painful hand to bed. I just wish that breathing muscles kick in soon before anything else goes, I don’t mind dying but this is just torture before the inevitable!

Day 88 – Liverpool makes my heart beat faster

I was excited today as we were all making a cultural visit to Liverpool. As soon as see the Mersey and the familiar Scouse accents my heart beats faster. The city where I was so happy. Returning from late night parties on the ferry, meeting Tim under the particular blossoming cherry tree in Sefton Park ( we didn’t have mobiles then) , nights in the Casablanca club painting our faces with snakes and butterflies, cycling to college with the lovely Helen where we learnt pottery, art, printing, gardening and of course basket work. Demonstrating against the National Front , Mandela being imprisoned and the Guildford Four with massive paper mâché heads we made of Thatcher and Reagan. Being so proud of my Tim as I went the opening of his photography exhibition at the Open Eye Gallery of photographs when he twinned Liverpool with Corinto in Nicaragua.

Sorry , so memories flood into my mind at the moment it’s like I have to capture everything and share it while I can . On arriving we ventured to the Walker Gallery and as soon arrived I just had to dash into the room I love and just be there…. absorbing all the marble sculptures and the chaos of creativity and history in one room . We then went to view my contemporaries ;Rankin’s ‘The Face of Death’, an honest and intelligent, creative exhibition of people facing their final moments . It was so refreshing to witness a display of a subject we hide away from but I can’t I felt comfortable and accepted amongst them strangely .

In the sunshine and the wind we then made our way to the dockside in search of the Chagall exhibition at the Tate passing Liverpool grandeur of days gone by . I refused to let my aching hips, tired legs and numb foot get in the way of my pleasure of seeing this man who had so many faces of vision , colour and ingenuity . It was five o clock when we our thirst for culture was satisfied, but hunger for food was not. Ruth sorted me a chocolate mousse but I was so hungry for real nourishing food!

The evening concluded with a return to the lovely Lebanese restaurant , I managed to eat but I noticed the difference from Day 97 when I went with my sister . Every mouthful was filled with anxiety of choking and I was conscious of getting the food in my mouth rather than smeared on my lips as my lips and tongue were just not rousing to the challenge. The white wine I enjoyed then was no longer a pleasure, more of a risk and my hands were so much more stiffer as I tried to keep up with conversation. I learnt then not to try and repeat the good times in my 100 days as the deterioration becomes more prominent.

The day concluded well with my lovely sons and long suffering victims of friends, but we smiled broadly at old photographs as more memories gushed in while my sons mixed up a White Russian, my favourite cocktail in the knowledge that my drinking days are very nearly concluded.

Day 90 A heavy door to Pecha Kucha

My day started with my friend Anna who helped me push the heavy door of my stubbornness and reluctance of taking food through my gastric tube. She was a very efficient OT as she encouraged me to play relaxing music and sit overlooking the garden to focus on good things while I managed to syringe in the straw coloured banana flavoured goo.

So anyone reading this who fears the moment of feeding through a RIG or any other intervention be reminded that the fear and reluctance is the biggest hurdle and allow yourself to that fear for a while but it has to stop at some stage . The fear was totally psychological as felt so wrong to eat through my stomach but as Anna reminded me that breast pumps are equally unnatural. I managed a whole syringe without crying .

I made my mind up by separating myself from the personal dilemma by asking myself … What would Lindsay do ? When I asked that question I knew instantly that I wanted energy to enjoy my next 90 days (or more … . ) . A very useful concept for times when decision are hard . . So I have opened the door with the help of a good friend to give me that push and now just need to keep going through it and passing through that door has enabled me to enter a new phase of living.

We then listened to a recording of us singing ” I can see clearly now ” which we recorded in Liverpool studios 22yrs ago !!! We sounded totally dreadful but it has made us laugh through the years …So anxiousness , fear ,acceptance and laughter in the morning but my biggest challenge has addressed.

In the evening I entered into a whole new world of Thursday evenings in The Manchester Art Gallery. On arriving I was overwhelmed as we entered in a room where women were sitting making costume clothes while they were listening to a barber shop quartet , everyone was bustling around in a gleeful way , I felt I had stumbled into a whole new world of energy and creativity . My intention was to attend a night of a pecha kucha night. .. This is a style of presenting art, design or anything really but only having 20 seconds for 20 slides. It was so wonderful as the subjects were so varied from proteins to Arthur Dooley , a wonderful Liverpool sculptor presented by my friend Bob, we also listened to a presentation of watching birds and natural colours, and a singing introduction to a picture by Nash. It was so entertaining as people with a passion presented with such pride, vigour and energy. One of the presenters did a slide show on Creativity, the message from that I would like to share with you is to do something that you normally do , but today,  do it differently … I am waiting for your replies !!!! I expect you to make me laugh I will report tomorrow on mine .

So another positive day with to round off the 90th day with MND.