Blog 42 – A solitary tree

I went to Richmond, Yorkshire, it’s so beautiful, crystal waterfalls, quaint shops with delicacy from Yorkshire and grassy ruins. We rented a cottage with a clear view of the Norman castle …the stone is yellow ochre and shines in the twilight. Joe and Alex took me to the dales, it was dressed with purple heather and rosebay willowherb. I saw a solitary tree, wind blown and defined and I engaged with this tree, sometimes I feel isolated as nobody knows my combat with MND.

We saw the returning waves of the sea on the east coast in the village of Runswick Bay, which was full of houses with red roofs and a wide sandy beach. We went to Newby Hall near Ripon I love that garden as it has a river through the gardens and it’s so exotic and it has a peace within it. It’s only 90 mins from Manchester and it’s child friendly, as they have boats and a large adventure playground and Zimbabwe sculptures. Sam brought me Downton Hall and we watched it together, it’s a good researched series as it incorporates the social history and it defines the gap between the social class. It was good to have a day with Sam and Joe we went to Saltaire, it’s was a sunny day with a breeze which make the trees bustle we went to the Salt Mill and viewed the Hockney and browsed art books while I smelled, spicy trumpets stargazers liliewhich was abundant every corner of the mill. I am overjoyed that have lived the past 18 months to see Sam get his exams, see him graduated and see him enjoy creative activities. He has been committed to his friends in Manchester and London and they are walking beside him. Joe is set up a business and renovated the studio and he has for confidence, he is a sincere partner, compassionate father and faithful friend.

I haven’t written for a while as I am struggling with MND. It’s take an hour to have a shower and another hour to feed my monster tube. I try to focus on the moment and keep my heart open to appreciate every day but I have been very unstable as my both legs are wasting, they are like poles with no muscle and my hands are like a claws when I flex my fingers they cramp. My consultant said I have weeks or months … That could be two weeks or 12 months !!!! MND is a sword of Damocles, it’s foreboding like a sword in a cover and it’s maybe come out and kill you anytime.
When I walk I get breathless but I can still enjoy the moments, the smells, the fresh air and by family and friends who visit who help with chores.

I need alone time too, to process my thoughts and meditate to rise my mood and reflect on the reality of my life. This illness is so long, while I was functional I managed the speech loss and inability of eating and drinking but my function is going down a dark , grim tunnel . I come out of the tunnel at occasions, we had a indulged evening with massage, nail varnish and henna and fragrant candles. I thought my friends enjoyed it but after I go down the tunnel and it’s deeper and deeper and soon I can’t come back into the air.

So appreciate the life on the surface before you go down the tunnel I am in. Smell and taste the food you eat, take the pleasure of swallowing comforting hot drinks and refreshing cold drinks. When I am a public cafe or restaurant I realise people don’t taste the food they just stuff their food into the mouth as I used to do. Observe the seasonal time notice the vegetables, fruit and trees. When you speak consider your words, speak positivity process your anger, and make people smile. When you exercise, pleasure yourself you can stretch your muscles when you walk and hold your head up and appreciate that you hold objects to look at the beauty.

Blog 40- Open the door to your mind

I had a wonderful weekend living with MND ….. Ruth came around on Friday and we watched a film, cosy with candles and foot massage. I got up late and Pete texted me to go Liverpool to see the enormous puppets …….I was in a dilemma as I am so tired at the moment but I am living so I gave a deep sigh and I got ready .

It was easy journey but warm as the sun shined on us .. We sought a car park and I got into the wheelchair and Pete pushed me to James Street where the three puppets were assembled from different streets. We were waiting on the traffic island for about 90 mins but the marshals cleared the island!!!!! Pete pushed me across the street and met Frenchman from the company directed me to a prime place where the press accumulated. While we waited everybody was excited the children were jumping up and down, and the talk was animated and the friendly Liverpudlians were chatting with Pete to inform of the puppets last night.

The grandmother came in a wheelchair and she took a letter of prose from the dog the Frenchman read the details of World War II from a Liverpool perspective. The gestures and expressive was so real. I felt the grandmother was reading my countenance. The dog ears were propped up and his tongue went out and in.
When they went down the street they were enormous at a scale with the buildings . I was so excited and my smile was broad. I hate the wheelchair but it can take me to lovely things.

On Sunday we went to the jazz festival to see a choir, the last performance again I was at the front. It was lovely to be out and about. When I got home I was exhausted but Sam came home it was lovely to see him we just chilled out with Joe and Alex. Wonderful weekend but I paid for it !!!

When you have decided refuse things in life and you justify your choice and it sets in your mind. I have to change my mind when I am tired, my days are short so I need to relish every moment. I have to have courage and spend fun time with people I love. So when you decide and it’s firm look out of your door of your mind and see the world outside and be brave !!! Life is for living not to be timid and stay in your mind.

I am writing while the I am listening to the WW1 ceremony in Glasgow, so many died in young years, in love with girlfriends, respect for the parents, close comrades, loved siblings, new parents. Many people was missing and hope for them to come home and days and days the light of hope diminishes like a in coming tide but the tide turns and it withdraws like hope.

I think of Gaza, children have died who have no idea of politics, appalling deaths in hospitals, schools and refugee camps. It’s disgusting that the bombs are killing infants, children, teenagers and young mothers.. When was it acceptable to kill children in war ? I can’t understand the sorrow and anger when your child dies, I am fortunate that I haven’t witness the death of child. I know friends and family that have have buried their son and daughter … I light up a candle today for the parents who have lost their children and today I will give will give the thought to them and loving kindness.

Day 1 – The end of the road

I have leant a lot through this 100 days, I have so appreciated my life left to live. I have grown to accept my fate but I have not given up to strive for my independence as long as possible . During these 100 days I have had so much support, love and empathic care which has helped me to have courage to face this cruel illness and become strong and resilient.

I have exposed my feelings to all who are interested in viewing this blog, I do this because it the best why to be communicate in my silent world, i have so many thoughts as my mind is full of energy and I need a channel to communicate these thoughts. I also want to share how life is with MND for those who might be diagnosed now or in the future. It has been comforting to read others experiences who have MND as I don’t feel alone so this blog to a contribution to others diagnosed.

I guess it is also a legacy for the future maybe to Sam and Joe as they get older and maybe the next generation, so they can perhaps know what I was thinking. Everyone who reads this log will face death in the future and you might also be feeling like me one time. I feel my life has been hard as a widow at 40 yrs and facing my death at 52 yrs but I have no regrets in my life , I have been so privileged to have had a life of comfort , experiences and most of surrounded by loving people, life could have been so much harder if I had loved in another era or in a developing country.

I guess my main message on this 100 days it to relish your life , sow seeds for her future but don’t presume you can plan the future live every day as it will be your last . We are on the earth to experience life to not to have a purpose, be kind to yourself and give time to enjoy the world.

My last experience of my 100 days was with my mate Chris she took be to her sport club to experience the spa .. When I slipped into the pool I struggled to swim as I got a sharp pain in my chest … I tried again and it came back ..I thought I would never have the experience swimming again, I wanted to cry as I didn’t relish the last time I swam. Fortunately there was a jacuzzi, the heat i helped to relax my tight muscles and when I tried again I could swim easily. So it was good to retry things that don’t work out the first time. When I swam I relished the experience of stretching my limbs out, I relished the light on the water as the ripples broke up the luminosity. The mist above the water was surreal as I bathed in the warmth of the water while I could breath the crisp fresh air. We then went in the sauna and the deep heat felt it was touching my core muscles and I felt so relaxed . Chris was just beside me and didn’t demand anything of me , the silence was frustrating , it’s hard to share an experience but I couldn’t communicate to her my pleasure .

So that is the end of a 100 days …. But sadly not the end of the MND that will carry on for sure …

Any ideas to carry on would be gratefully received and I hope those of you who are coming tonight will enjoy …..

Day 2 – Finding the light within

Woke up this morning with a painful mouth as my facial muscles are sagging in between my teeth and I bite my cheeks , it is so painful as my mouth is full of ulcers and wounds from biting. I was up and about early making bacon buttties for Joe and the decorator Lee. Cooking bacon is one of the hardest things,

This morning I spent time in the company with my friend Ken, autumn cleaning at the Buddhist Centre . While i was polishing the furniture I was thinking about how Russel emphasises that when you do a chores like cleaning , it is good to do it with care and concentration . So I tried this today and I relished how I was still able to clean and make a pleasant environment for others. This is a new role and we all need to roles in life my role isn’t a patient yet !!! My role has changed dramatically but I still feel like I am still useful . I felt I had accomplished something useful today but I was tired and had a rest when I returned home for a couple of hours.

When I entered the art group late the artist was already instructing the group to draw in a specific style , a useful session drawing with a continuous line. we all set to work with full concentration again? . Somebody sat next to me who I had never met before. As I was drawing I couldn’t just chat to her while I was drawing. Sometimes I just get so very frustrated and weary with tapping everything out on an iPad . I miss the discussions I used to have with people, my company must be so hard just using sounds, typing and mime.

I was tired, so I didn’t really bring our my iPad and I felt like an outsider to the group , I think the tutor suspected I couldn’t talk and his only communication to me was eye contact with me when he said “sometimes people learn to paint with their lips” , not me, my lips have gone!!!. Sometimes I feel like I am in a dark place and looking out on the world but I always remind myself that when I am in this dark place it is rare that I can enter the brightness from the elements outside of the door, things external to myself.It is within myself that needs to change, my internal world , my thoughts and feelings about the external world. So I need to look around my world and catch the joy, not to rely on the world bringing me joy …if that makes sense ? So in my darkened room I must find the joy there and then let myself out to appreciate the world .

Day 4 – The last trip of 100 days

Another trip to Liverpool with Louise we went to the Open Eye Gallery to see an exhibition by Tim Hetherington , who died in the Libyan civil war in 2011, He wasn’t just a photographer he clearly engaged with people like, by other favourite photographer Don McCullin . He depicted hard soldiers when they were sleeping like little boys . I felt very moved by the exhibition as he documented the boy soldiers with hardly any clothes , weapons or freedom of choice. The trauma they must have witnessed at such an early age.

We then went on the Mersey ferries , we were basking in the autumn sunshine one minute and then soaked with heavy rain . It was strange going on a tourist ferry as when I lived there it was just a passenger ferry , I remember going over for a party one evening and coming back with the first ferry with a heavy hangover as we joined he first shift workers going to the city from Seacombe .

It was a pleasant day but I was tired and when I arrived home I went to straight to bed for a well needed rest. The rest of the night I trawled through my blog to choose which days I was going to display for this event. As I went through the days I was amazed with what I have done over the last 96 days. I have been so active and travelled far and wide. I am so lucky to have spent time with so many people in so many places.

I have been to Croatia where the seed of the idea of 100 days was planted and celebrated with the lanterns over the sea with my family . Then we celebrated my sisters birthday and later my own. We did the 10k and raised over £2,600 for St Ann ‘s Hospice. Then I started the venture with my garden and had many nights with the fire and the garden lit with lanterns including Joes’s 21st. Travelled to London to celebrate Sam’s graduations and met Alice’s family , stayed with Helen, Mark and Betsey while visiting the Academy Summer show and Betsey’s performance.

We visited Pam’s pottery which was a treat, then traveled to the Cornbury festival to see Van Morrison for the weekend , celebrated my friend Chris 50th party and then a weekend in with my sister Ros going to Bognor to see my niece and her family. I then rushed back for the Tatton Show. The next weekend back down to the south coast again Brighton with Louise to the Mermaid festival and meeting Stuart from the US.

We then went meet Ali in Buxton with Ruth , followed by a weekend with the boys in Edale roaming around the hills. On returning I then joined my friends, Sam and Alice for a week in Cornwall. Back home for a week and visited Liverpool again with Ruth, and attended my appointments before setting off to France and Geneva with the boys. I concluded the travelling with Louise today but with a trip to the Isle of Harris with Ruth in a VW van to plan.

It’s amazing that I have done all this without speaking , partially eating and feeding my tube monster with all the aches and pains of MND. I think having plans to be active has made me motivated and kept my mood uplifted. Now that the crazy summer has gone now I must plan to fill my days for the autumn , it’s will not be so busy as my fatigue levels are increasing but I will still try and keep you entertained !!!

Day 21 – Open the gate to new pastures

Day 21
Today was a very sociable day my friend Joy came around for coffee and then I visited a dear friend Ken . Both of these friends know me so well they are so natural with my iPad I feels so normal just having a conversation as we talked about our loves and frustrations. Then in the afternoon a couple of friends from work popped in and I let go of all my family therapy books . This was a good example of letting go of my former life …. I guess for me, my Phd write up is my way if holding on to my former self but I have let go of so many things now and my colleagues remind me of that world but I realised that I have accepted that now as it used to upset me when people talked about work but now I have let it go and accepted.

I have let go of my clinical work , attending lectures and meeting as an academic , supervising colleagues , walking the hills , eating out with friends , coffee in cafes , running , cycling, supporting friends , chatting on the phone to my family and numerous other things .
I think I have been graceful in letting go , it wasn’t really conscious ,but when I can finally let go of the things that need to go , it is a sense if relief and there is a mental space of choosing better things for me. I can think of many people I have spoken to that hang on stubbornly to the status quo to maintain safe routines. I know that is a comfort but maybe letting go is scary but then when you do it it’s ok … Yes, I still miss meals out with friends but I have gained nights in watching DVD s with friends instead . Yes, I miss clinical work but I am developing my skills in blog writing instead . Yes, I miss running when I am frustrated and tense but I have learnt to to turn up the music and drive out to the country instead.

I have lost a lot but I have gained so much too, deeper quality relationships with friends and an deeper appreciation of life , I am learning to ask them for help as my independence is the next thing I will be losing, but this will be replaced in asking people to support me and that could be a potentially profound positive change for me .

So if you are pursuing the old thing , routines on that marry go round … Stop it! change the passengers, change the music and enjoy the new ride of life. It was good to hear my friend Liz as she has turned her life around and brought in changes and the lovely Alice packing in job to a bright new era of her life ! I feel my life is not one continuous novel but a book of short stories.

Day 22 – Slow down and look

Day 22
Another day of rest while my hand is significantly improving as the inflammation is going down and I am certainly appreciating some more function in my hand now .. I can drive and type without acute pain . So I must learn now not to overuse my hand now as the muscles are wasting but the function is there if I take care of it.This is an important lesson to learn from me … I have always dragged my body around and not taken care and listened to enough .

I used to operate in the fast lane all the time now I am in the slow lane , I can listen to my body and my mind now. My deepest regret is that I didn’t get in the slow lane more often . Life was a blur as in the photograph in my blog a few days ago. I didn’t see the beauty of the world and people around me . Everything is so much more beautiful as I limp along , going slowly , not talking and listening and observing instead. As yesterday’s blog I feel the warmth of my friends and appreciate their presence so much more and this gives me so much more pleasure .

We are always encouraged to do more , go faster, pack everything in, but are our lives improving with this? I have neglected by body, neglected my family and friends, and neglected getting joy from the world . Ironically even with this illness , I think I appreciate living more in a technicolor way . I see things I never took time to look at. So if you are in the fast lane if life spend one day just slowing down, get the bus and look out of the window one day instead of the car. Spend more time cooking your meal and get all the senses going of the vegetables and herbs , feel your food and sit and eat slowly and enjoy. Take a walk outside at night listen to the sounds, the birds , the colour of the sky, the breeze on your shoulders.

If you take your experiences more slowly your senses become more acute and you can think more clearly . So my time out and taking the slow train and stopping frequently has done me good as I can be positive about my world and lose the victim role .

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 .