Day 60 – Cog of a wheel

This Day 60 was a big event day it was the celebration of my friend reaching her 50 th year . Mu job was to take her son to a play in Glossop then bring him to party . So I made my way to the Partington Players theatre , what a wonderful building established in the 1950 s as a rep theatre , small and very cosy ! The players were brilliant !!!
We then made our way to the party with tinkly blue fairy lights , bunting and multi coloured fairy lights in the trees and a banquet of a meal for everyone .
This was a group effort of all her family and friends and what a marvellous night it was !!! . Although I felt very slightly nervous about going to a party not being able to drink , eat or talk it was easy just because people made it easy for me . They sat around and I was able to have many conversations with friends using my IPad .

When people get together to organise an event it can be very beautiful , people in a group with a focused can produce amazing things . I love it when groups adapt to the goal s using their specific skills and everybody seems to link up and it works !!! It can be a party , a charity event , a small company , a business , a sports day . Do we realise how wonderful we are in negotiating and working together.

When we have this awareness day in September I hope that people can celebrate their achievement as everyone is important as they contribute from washing up to developing a visually pleasing leaflet .

We are cogs in a massive wheel of our society and everyone is as important as the next one , sadly we don’t celebrate the ones in who clean the streets or collect the rubbish or the ones in the factory line who put microchips in components all day long. These are the people that make out life easy. So well done for the ones who are tidying up after the party today !!! Over the past year I have made more of an effort despite my speech difficulty of just saying thank and acknowledging people more …try it you get so many many smiles as we just don’t do it enough !!!

By the way I loved meeting Jackie and Helena it’s so good to put faces to the wonderful comments on my blog thanks you so much for taking an interest.

Day 62 -Climbing the stairs to the stars

Today as I watering the arid garden I was thinking about much how we care and nurture in our world. Care is not reciprocal we don’t care to get care back but we do get pleasure from nurturing and being there for others. I guess our care is to see others bloom and to see the pleasure in others. I have been so lucky as I have had the pleasure ogf giving all my life.
In these months it’s however me that I has received so much warmth and loving care , consideration and practical help . My friends and family have extended there hand out to me to support me and I hope that it’s not just me that has received the benefit from that .
I have learnt over the months to accept help to let others care for me but this has been such a struggle as it is a balance of relinquishing independence but as I become more disabled I must let others take that over some of my routine tasks . To reframe this increasing disablement I have come to think that it’s not my independence that is threatened but it is an opportunity to allow others to care or me and let them have that joy.

I think if you allow yourself and work out your thoughts every negative can be turned into a positive if you want it . It’s the mindfulness to consider how you can do that and it’s the force within yourself to be positive enough . Yes sure we will have low days , I have had so many of them but it’s turning the bad thought around by thinking and meditating on them and for me it’s by looking at the situation as an observer. You have a choice of ruminating on all the bad things that happen in your life or you have the choice of turning it around so you can learn from it. Could it be tht bad thoughts and negatives in life it an opportunity to lean about ourselves ?

A few days ago I took two photographs of stairs in an old house … I looked at it from two different perspectives ..the stairs going down and the stairs going up … The stairs going up were so much beautiful .

Day 65 – Weathered Away

Well the MND was certainly angry that it wasn’t allowed in and as a consequence bit me back . It was a hot night in our little apartment and sleep didn’t come easily . When I arose in the early hours my mouth was bleeding and sore from gums lying floppy against my teeth . The acidic breakfast of banana and passion fruit stung as did my tears as reality dawned with the sunrise.
I decided not to have food through my tube as it was a hot day and long journey and I didn’t want to feel nauseous too, so we packed up and said goodbyes to Sam who was returning to London . As he left I felt so very frustrated as I wanted to have a proper conversation with Sam about a whole load of things but I was reduced to a few words typed out, it didn’t really hit the spot. To allay my sorrow I slipped behind the driving wheel to focus my mind on th road rather than bad thoughts while I thought of Mica ‘s. mantra ..,” It ain’t no thing “.

We wound our way to our first stop ….a Herb Garden centre , my throats was cramping , my soul was in bits and I was desperately tired . I found a little garden and lay down and rested , then my finger started to moved on its own accord. Fasciculation in the large muscles I am used to but in the fingers it was a little disconcerting . It so hard being positive when you are cramping , tired , hungry , thirsty, sore gums, dribbling away , hard to swallow and strange things happen you that you are just not prepared for and most of all, I cannot express myself , it is a feeling of all my emotions being locked in. I guess that’s why this blog is so important to me as it’s an expression .

Ruth came and found me and knew instantly were I was emotionally as I scribbled a few words on the back of envelope , I shed some more tears and then got myself together again . I have to be harsh with myself and gave myself really good virtual slap on the face ……Live in the moment Lindsay !!!!!! don’t waste your time !!!!! stop being self indulgent !!!

I then went to the cafe and format refreshing thick drink … I sadly choose a milk shake with cream it was like drinking liquid sugar !!! Our next destination was Kenilworth Castle. When we arrived the weather was perfect , we ambled around the grounds at a steady pace. The old chamber walls were spectacular as we viewed age old graffiti from the 17th century, dining rooms from the 15 th Century and an adjacent Tudor house with the deep smell of dark wood from hundreds years of use .

I found an old sandstone wall in the grounds , it was was weathered away by acid rain but still standing, it was interesting how it became so much more interesting by just being there and accepting it’s fate , I felt a great sense of affinity with it. Bu this time I was winning the battle with my emotions as I lay and rested as Louise and Ruth went for lunch.

When arriving back at home we then had a meeting ,with Angie , Tracy , Ruth and I and made plans for our Awareness Day for MND … A good focus positive move to celebrate creativity and life , and I tumbled into bed after a long hard day with MND certainly letting itself be known and realised the days are dwindling away time goes so fast and so so slow at the same time .

Day 75 – Creativity opens the door

A creative day as I relaxed and painted with Ann , a drawing of a door … Very apt as later we opened the door as I tried a feed again. The hours we spent just painting was so wonderful as I just become totally absorbed in creative energy whirl , being productive. Using my imagination and painting with a real passion to produce an image for someone special. Stretching the paper out and preparing the materials is like organising a venture. Mixing bright colours and choosing the brushes and making the first marks on the heavy virgin white paper . Being bold , experimenting with colours , techniques, and over the hours real concentration and total commitment resulted in a picture emerging.

Tendinitis created another problem as a bruise appeared in my right palm but nothing was going to stop me as I was lost in the ecstasy of my own world , alongside a good friend which allowed silence to be comfortable .

We stopped for a while so that I could have my initial feed lf the day , it didn’t present any big problems as the art was more important , although feel bloated and had no appetite for normal foods .

When we completed our pictures an amazing sense of fatigue drowned me so I stumbled up to bed and went into blissful sleep. This is the routine of the day these days which I worry about as I guess these sleeps will be longer and longer as I get weaker and weaker . On waking the dread of another feed crept into my head , I embraced this task myself but this time an acute sense of nausea submerged me as like a black cloud as I syringed the white sickly thick liquid into my stomach .

Today made me very conscious that this drill is going to happen three times a day , so I am very conscious that I must get a balance of my days to gain some pleasure to make unpleasantness worth it. I guess that we have this maintain this balance in all our lives. We always have to do things we don’t want to do, taking the dog for a walk in the rain , emptying the rubbish, cleaning up the plug hole in the bath of residual hair , commuting to work in heavy traffic. When you do these things they are not that bad really compared what others have to go through such as having to sit on a commode or have stranger shower you, or to undergo painful exercises, it’s all comparable isn’t it . I guess am still independent and I should acknowledge that my bad thing isn’t painful and it could be a lot worse !!!

So these bad things we do in our day at least makes the pleasant more worthwhile and the balance is so important , you need the bad bits , so when you are you dreading a task turn it round as cherish it you need to do these things !!!! So I will open the door next time with relish as I can get the pleasure of when it’s over ….

Day 76 Planting for the future

Today the clinicians trudged in and out of my home . I can’t believe that so many professionals have to be involved in enteral feeding ( feeding tube) . The speech therapist offers wallpaper paste to put into my drinks…. No thanks !!! The nutrition nurse organises the syringes, the dietician provides the food and weighs me and the district nurse looks after the feeding site and finally the radiologist replaces the tube. So many professional for one intervention!!
The door to feeding from my tube has closed shut again but while it has shut I have lost about a stone and the professionals were not happy at all !!! I kept in mind my approach of not feeling ‘ill will’ to the professionals. I always get down when I meet the professionals . I guess when they talk to me about MND and the effects it always makes it more real and that have a knack of getting me to look around the corner which for me is a ‘blind corner’ until they come. I don’t envy them having me for a patient !!!

So today I have to open the door but open it a lot wider as I have to get a lot of food in my body which will take up considerable time in the day. When they all left the rain poured from my heart but a couple of friends Ann and then Jane entered and distracted me and we went to buy plants. The rain also poured outside as we we in silence towards Lymm . I think it’s hard for people when we are in the car as no conversation is not possible , but I guess they get an insight of what it’s like to be with someone and wanting to talk but can’t.

We bought an array of beautiful scented plants , I have never loved gardening so much as now . I imagine the garden in two or three years when it’s mature and wonder who will get the pleasure from my productive work today. That is a thought I have often . What can I do today to make a difference in the future whether it’s getting rid of rubbish , writing my books for the boys , painting a picture for my sister , sorting my bills out …. There is so much to do.

My sister talks of ‘footprints’, is that one reason for our existence to leave a legacy for the future generations . When I consider the people I know we leave so many footprints for others but we don’t reflect on that much . We should celebrate our contributions to the world more than we do, not just as eulogies at our funerals. So many people in these days have told me how i have influenced them since I have been ill and that has been so very very important to me and I have cherished those comments … Thank you from my heart !

So I have decided that I shall also make a point to return that sentiment to others and maybe you can also tell your friends and family how they have contributed to the world NOW and so they can get the pleasure and confidence in themselves, make a list for yourselves also. It not something you reflect upon in mid life in the midst of your everyday thoughts.

Day 81 – Shifting Sands of Time

Today was a day of recovery and reflection as I spent the morning resting and contemplating about the last few months and the shifting sands of this illness .

As I trained to be an occupational therapist we spend some days in a wheelchair , being blind and deaf to gain an insight what it is like to be disabled , this was facetious as you know at the end of the day you can  park the wheelchair and just get on with your life . It is true that it is helpful on the empathy levels but is impossible to embrace a disability without the emotions the anger, frustration, sadness and hopelessness.

I think have been through those emotions when I was diagnosed with MND the shock of dying young , not seeing my boys mature, the experiences planned that I cannot even contemplate now. I grieved my loss and accepted my fate but then the speech loss came along thick and fast another challenge . Again I adapted enough to remain independent and socialise and enjoyed life and as I retired and filled my shortened life with holidays, walking meditation and art. The next level is now swallowing and I am still battling that now as I watch others enjoy their food and drink and count my blessings I can still enjoy soup everyday for now and maybe I need to open the heavy door of the feeding tube which seems to have shut again.

But as this next series of symptoms are kicking in now….. as my legs muscles are desperately trying to make any connection with my brain as they are flickering and twitching all night and starting to wither as the physio said my “buttocks are wasting ” !!!! my back painfully cramps up and I can’t cough up the phlegm produced in my lungs as a consequence of choking . My saliva drips down by chin mixing with tears …… sometimes I just think enough is really enough ?

I guess spending time in the wheelchair last night was more profound that I thought it would be , accepting various gradual disabilities so far has been hard but sitting in a wheelchair being pushed was another completely raw dimension. As I sat there I felt I had nothing left, people looking down at you , no control about whether you can stop or go , taken in any direction with no words to express any opinion. My heart was seared in two I am not giving give in to this yet , no matter what pain or fatigue I have to endure .

I guess walking the 10k was an example of setting a goal , a challenge , I have talked about that before and my goal is now to keep that wheelchair firmly shut and locked in the shed for the rest of my 80 days at least in order to carry on with life. …. So sorry I few more blogs still to endure and now the busy weekend has passed I do intend to write to all your comments individually and I think I need more photographs too !!!! So up and on Lindsay !!!

Day 82 …A wonderful team

So the big day of the 10k walk at midnight in aid of our local hospice , which I have to say has been so supportive of me service during the MND journey. So I packed up and left London and arrived home to sort out the evening , clearing up and shopping. A rest was out of the question as I was so excited !!!

Friends arrived Louise , Pat from a hard day at work and then Joy my lovely neighbour , Nicola my ever supportive niece, Cheryl from a day at work and putting her twins to bed, Fiona and Angie with cakes , puddings and the product of Angie’s creativity with her daughter, our northern star halos.. Brilliant !!!! Then Chris from work after sorting out her boys , she arrived with gusto and hugs as she packed up the wheelchair and finally Tracy with a still warm baked cake … We left after our faces were painted with stars and flowers to meet Lynn and Pete in the arena as drove past a heavy full moon.

We arrived at the venue to music and excitement , fancy dress and so much enthusiasm to support lost loved ones , employees of the hospice and people like me receiving the services of the hospice . I felt a lump in my throat as the back of the shirts stated ….” I am walking to remember ……. ” to be filled in … I thought that will be me soon !

We left the arena into a balmy night with a light breeze to a city centre of brimming with parties, celebrations , graduation balls, young couples, raucous night outs . We walked through the trendy bars, chic apartments over bridges of the canals, past the closed down shops though the night .

I managed to keep some limited conversation for a while with my iPad but mostly just listened to the chatter of my close and wonderful friends with a frequent wave of my hand as they suggested I get into the wheelchair which was our bag carrier !

The raindrops started to become heavier about 3 Km into the walk which was pleasant to start with, refreshing but then it become heavier and persistent as we approached Blackfriars. My back muscles were aching , hips grinding and fatigue levels overcame me so I relented to have a 15 minute ride in the wheelchair. This was a first time for me and just not acceptable as I became another person while I was in there.

We then approached Ancoats , 7Km as I passed the familiar venues I would have been drinking in a few years ago I was reminiscing and my thoughts drifted ,communicating at this stage was difficult as the rain was to heavy to use the iPad but I had got into a stride as my everyone was entertained me with monologues. I become so aware of the city at night as the hours wore on cuddles on the way home, people walking with stumbled strides, munching on burgers after a beer filled night like it was first meal for weeks , chatter about how to get home, young girls with summer frocks and smeared make up in the rain .

It was 8k as we approached the University of Manchester and my gait was heavy as I struggled to lift my foot up and decided on another 15 mins power rest up the hill as Pete pushed me, but it was cold as sat so I got up again and walk but that’s was fine as I had rested. As we approached the homeward leg I tripped over my laces and went flying but recovered quickly . By this time we were all totally soaked it didn’t really matter how much it rained at this point and no more rain could have absorbed into our already soaked clothes , our northern star halos were drooping around our heads . But I still felt vigour in my heart and the challenge was my fuel as MND was NOT going to get the best of me tonight !!! I was so determined. As we covered the final 2 k we all fantasised about our bed, hot baths, cats curling up next to us. We arrived around 2.30 sopping wet , aching and exhausted .

For me the main reflection of the night was the overwhelming support of people close to me, supporting me in my venture and the overwhelming generosity of family , friends and people I didn’t know at all but were inspired my blog or have heard from my endeavours from others . We have raised over £1650 and still more is coming in …….

A good cause but more than that for me it was a challenge, I am not going down defeated , this is just one of my fights while I can still walk but there will others fights too… As crawled ( literally) in my bed I had a warm fuzzy feeling about my ‘ team’ who are helping me retain my courage through this journey…. Everyone out there … Those walking with me and those supporting me , the generosity of time , thought, feedback and funds ….. Yes !!! my team are truly exceptional ! I shed a tear of joy as I went into another sleep of the hard journey and another day disappears from my grasp.

Day 83 – Afloat Again …first times too…

Day 83 wasn’t amazing eventful but I needed to rest especially before the big day tomorrow but it was a pleasant day dozing on the couch while Helen worked. There is a something very special about being able to relax and be quiet with a friend, I have felt that tranquility with Helen. Later we ambled down to the very trendy Church Street for a latte while we considered holidays and our wish lists. Later in the evening as I was sitting watching her little girl in her school show ,the thoughts came to me that will never see her grow up , I might not see her next year in this show …but I have the choice enjoying this first experience seeing her up there glorious , beautiful inside and outside, being strong and overcoming her anxieties . I could just enjoy this experience instead.

I guess to be more positive I realise that as last times are very frequent new experiences are also bountiful . The time I have on this earth is an open book for new experiences, so I must make sure that I make them possible while I still can . The making of new experiences is up to me …. Every moment is really a new experiences rather than thinking of it as a ‘last time’ experience . I can make new experiences by planning a wish list of the things I want to do as well as making most of the things planned already in my days .

So to be optimistic rather than being complacent with life I reflected on my list wish which I will share with you :
Sleep in a leafy wood in the wilderness
Read a book while gently rocking on a boat watching the countryside go by
Attend a classical music concert preferably Sibelius
Go to Isle of Harris and photograph the colours at sunset
Ride a scooter and enjoy the sound ales through empty streets
Have a fire in my garden with all the lights lit and enjoy the cheer joyful faces
Learn to play summertime on the piano
Hold an open air movie night in the garden of the MND movie ‘ I am breathing”
Make a collage of natural materials
Ride a horse and cart through the countryside
To identify the North Star and send a lantern up to it
Do a graffiti
Dye my hair an outrageous colour
Write a poem about my experiences
Have a weekend just driving and seeing where end up
To plant a tree in a desolate place .
Throw a pot
Attend a daylong meditation
Row a boat
Visit Bilbao
Make the biggest sandcastle ever and pin a hundred sparklers on OT and set it alight .
Spend a night huddled up in rugs in a tipi in front a fire
Read Middlemarch

This wish list has been curtailed somewhat to make realistic in relation to my MND but post yours !!!! Just for the rest of the year ….

I guess my new experiences will also be MND related as the first day in my wheelchair , the first day using a cough assist machine , the first day in a hospice … I hope I will have the strength to embrace these as first moments too. Sadly I think this might take place tomorrow night as I know my body is weaker than my spirit and a wheelchair will be needed : (

Day 84 … Last Time ……

Day 84 started with the warm sun streaming through the windowpane as I heard cockney voices below. The plan for the day was that I would wait for my friend Helen in a coffee shop while she went to work for a couple of hours in Stretford . So I wandered along the street to find a coffee shop and settled myself in to write my blog and read .
It was a lovely moment, I was at peace with plenty of time to indulge in my thoughts , reflecting catching up with people and reading. I had a whole hour to drink my latte in a corner without stares or my own expectations . Sometime alone time is as precious and company.

Then we took the tube to the Royal Academy for the Summer Exhibition where we met my sister and Helen’s mum.. …. I was hungry at the time and we dashed into a supermarket but sadly all I could find was chocolate sundae that I could eat, so much choice for normal eaters but nothing apart from sweet stuff for the soft dieters , it’s just a good job I am not diabetic !!!

On entering the RA as usual, full of diverse art with an equally diverse range of people looking … I love people looking and I equally love looking at people looking. The Grayson Perry was totally the star of the show and made me want to read Rakes Progress .

I have been to this show for a few years now but while I was in the gallery I had an overwhelming thought of this is probably the last time now. I have a lot of thoughts about the ‘ last time now’ … Last time I will eat this maybe , last time I can drink a coffee or a wine maybe , last time I can get a train on my own maybe, last time I see this person maybe , last time , last time … It’s a bitter sweet feeling these last time moments as I want to savour every minute . I recall the last time I had normal meal out in a restaurant … It was in Wales with my friend Ruth and I ordered a lamb shank as I a thought it would be easy to eat and ordered lots of gravy … While I was eating this I part of me knew this might be the last time, I also recall waving my dear old friend from my Berlin days ,he visits me from Germany occasionally but when he got into the car I realised I might not see him again. I recall very very vividly the last lecture I delivered, I knew very well that was the last and although I struggled through it I am so glad that I knew so I could drink in the last moments . Fortunately the last therapeutic family session about a hear ago was equally cherished as I really fought with my slow voice to give advice to a struggling family as they patiently hung to my ever slurred word.

I guess that feeling might be in all of us terminally or not !!! Many of us will be having experiences every day that might be the last time , so they should be savoured regardless. It might be the last time your child holds their hands up to be picked up , the last time you can run a mile, the last time you smell the tropical air in a faraway country , the last time you share a day out with your parents, the last time you read a book by a particular author ….some may be trivial or significant.

For me the last times will get more and more frequent I know that but I have to learn not to want them back or feel bitter just let them go like the clouds pass by and accept .

I enjoyed the art because of that notion in my head, it didn’t make me sad but because I wanted to take it all in I did exhaust myself… The evening was quiet as I sat to a meal of lentil soup, cooked tomato and yoghurt thinking enjoy this Lindsay as it might be the last time I can eat anything soon !!! I guess appreciate what you have as it might be lost soon …

Day 85 Shipwrecked…

I was On Day 85  I woke up feeling shipwrecked after yesterday but I was on dry land … Like this boat I felt battered and worse for wear …. But I was also determined  fuelled by anger, I guess if I was to be honest !!! This is not going to spoil my  days … I intended to go London  for a few days …… So  I told myself to  get  up !!   get showered and wash yesterday all off  the pain … Cleansing is so powerful a fight mood as I tidied up the house and packed a bag but there was one thing left to do which was to give myself water through this new and painful gastric tube insertion …. It is interesting as my thoughts this morning were ” I can do this”.. doubt was not going to be entertained , if let doubt crawl in through the back door I couldn’t go to London and my days would be wasted….

I do find it so interesting that when I think I am going to do this…. it’s like confidence appears from nowhere …. Try it… It really really works . Think of something that you think you cannot do and say to yourself ” I can do this ” let me know of your endeavours . I know my niece has done this and I am so very very proud of her as she went from nowhere to enrolling to train as a social worker as a single mum and two children , one of whom is autistic , anything is possible if you believe in yourself .

I will let you into a little secret that will not please many of my friends or my physiotherapist but I am going to do a sponsored walk on Friday , a 10k walk and I am going to try this technique … I am going to do it … I will take rests and it may take me all night but I am going to prove to myself that if you want to do meet a challenge badly you can !!!!

So…… I went to London, the interesting experience was on the train … The carriage was packed with bright young people going about their life and again I felt like the shipwrecked boat again , left abandoned from life . I left that everyone else was just getting on with their life … Going to parties, renting new flats, getting on with their careers, talking about future holidays , planning new education courses, organising meetings … I felt that my life has somehow stopped.

I felt a big lump in throat, I swallowed but that was hard ,I spluttered and coughed and drew attention to myself as people stared … I was writing to my son Sam on my iPad and their intrigue raised … I notice sideline looks , I felt embarrassed with my hawking cough I wanted to disappear , to be submerged again.. Then I saw giving me glances but instead of averting my eyes I looked them in the eye and gave them a beaming smile . I was amazed with that smile the space collapsed between us , it disappeared as they gave me a smile back . I really don’t know what happened but I felt that they were on my side .

I arrived into London with familiarity of my friends house and her daughter who accepts me and my deterioration of the weeks without question… Children are so very accepting and we chattered as we always do … She is an amazing child she just gets how to communicate with me without any complication , and off to bed with a milk and Greek brandy, which brought some memories back …