Blog -38 – The warm wind of friendship

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I am in Dorset after a six hours journey, it was uncomfortable as I haven’t got a bottom! The first night we stayed in a yurt, it had a clear window in the roof, we had a view of the cloudy night, no stars unfortunately but the wood burner kept the atmosphere cosy. In the morning we had we changed to a Finnish wood chalet. We are situated in the middle of a field with a view of horses and sheep. The farm is busy …. they have Guinea fowl, a bad tempered, ugly turkey, randy cocks beside sublime hens and geese, they waddle around the farm like a illustration in a book with bright orange beaks and milky feathers and a peacock, he has a extravagant display, showy eyes of turquoise and emerald to the peahen.

The first day we went to Lyme Regis … Ruth pushed me along the promenade beside pebble beaches,sand beaches and a harbour, she learning to handle me in a wheelchair around the narrow lanes with art galleries and teashops.We sat in striped deck chairs for a while as I watched bathers, parents and grandparents with their children building sandcastles, families tucking into a picnic, couples holding hands as they brave the sea, groups of teenagers eating fish and chips.I felt I was ghost observing the living.

We went to Chisel Beach, a 18 mile spit of pebbles, I couldn’t reach the sea but I managed to walk on the beach. We sat on the small, shiny and smooth stones of very colour,. The warm breeze was cuddling our bodies. Ruth is so kind as she walks with me everywhere so I don’t fall, and she gives me choice about my decisions. It must hard for her as she eats alone, drinks alone, she can’t chat to me and I can’t help her to pack and tidy up the chalet. She is always there for me and she doesn’t complain.

When we have enough sun, we winded our way on drover’s narrow sunken lanes to the farm. As the sun was going down the brilliant light makes the green leaves intense. I love the end of the day, it feels relaxed, but we had a vibrant noise from the back of the car when we stopped we found the exhaust had fallen off. So the next day we had no car, we had a sedate day ,,,painting, watching a film and viewing the scenic view. Ruth went out but she brought me a posy of red campion, bindweed and vetch. Sadly I can’t read as the print in my books, is fuzzy, that’s the side effects of the medication, eyelids are weak I struggle to blink and when I close my eyes I really have to focus to open them. I didn’t know MND would affect eyes but it can affect every voluntary muscle in the body.

Lord Falconer’s Assisted Dying Bill will be debated and maybe voted tomorrow. A potential change in the law for terminally ill patients. If the bill is implemented , people like me would have a choice of when they want to die. It would mean I don’t need to struggle with loss of dignity.. I have no speech, my hands are getting weak and have a battle to walk and dress ….I will be soon locked in, all my dignity will go as I have to have carers to get me on the toilet, change my knickers and clean my teeth. I can’t communicate unless I have eye gaze technology. If I want to end my life I have the choice of suicide on my own and it might not work and if I don’t succeed I might be in a mental health hospital with my colleagues and former students observing me everyday or I can go to Dignitas in Zurich away from family and friends or can stop fluid and food . I would interested in your views on this …you can reply to this blog and maybe we can have a debate !!,

Blog 37 -Awareness Evening of MND


Blog 37 – Awareness Night of MND
Last Saturday we had an awareness evening for MND, my friend Angie and her family initiated and did the work. Her dad died of MND , she has been a true friend as she has experienced the MND road before. Her family is so creative, her sons did a 24 hour sponsored computer game !!!! her daughter made so many bright coloured bracelets, her mother produced so many paintings and craft items with cushions, make up bags , purses and covered notebooks, her husband and sister did the raffle. Our friends did a BBQ, and brought so many delicious cakes with tea. We had 100 pebbles from Anna, as last year but they were so beautiful. We had art tables, count the sweets and a beautiful mosaic of the MND cornflower, lanterns and a hand massage corner. All evening we had musicians,and we ended with film “I am Breathing”. .. As a team we raised £1650 for MND research
The midnight walk raised about £ 2500 for St Anne’s Hospice. So we are a special team and Angie is the brightest star !!!

When we parked up at the venue and the first person I saw was Anna, an old friend from my catering days, she had been in contact with my blog but I haven’t seen her for 30 years , she came from Anglesey. What a surprise ! I really wanted to communicate with her but I was in the chair to massage hands and I had oil in my hands so I couldn’t type on the iPad . So we sat in silence and I was massaging her hands… How odd we wanted to say everything but actually we communicated by touch. I communicate with gestures and hugs and silence but people know what I want to show and my emotions . I read people’s faces rather saying “how are you ?”. I recognise a awkward silence , a angry silence and calm silence and a anxious silence. Words can disguise people I practice mindfulness when I meet people and get the vibes.

As time goes I realise my limbs are wasting so I want to walk while I can, so I have been out and around … I want to write while I still can ..I apologise for my messy writing but I want to say messages to my precious family and friends. I want to cook, paint and clear out my mess of life. Time is going too soon. I realise I have wasted days when I am sleeping . Next week I am going to Dorset with Ruth around Lyme Regis, I want to find fossils on the beach , walk on Chisel Beach, paddle my toes in the sea, paint the sea and photograph the beauty of the world. We are going to a chalet in a field on a farm , sounds sublime ..

As I end my blog Sam has just called me and he has got 78% in his last exam !!!!! Its so hard and I am very proud of him !!! I can’t say that, so I just clap and he recognised my pleasure !!! Yesterday Joe made a new page of his website JosephrigbyPhotogrsphy.co.uk. I like it, it’s very good …look on My Work, and People and tap on Martin Minshall face !!! Ava is blooming, all is well !!!

Blog 35. – T he Northern Star Team was shining

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We had a wonderful team for the ‘Midnight Walk’ for St Anne’s hospice around Manchester city centre. We had 32 individuals donned with the shining star hats for the Northern Star team and the wheelchairs were donned with lights (thanks Angie). We met at my house and we had drinks, pizza, and we lit the fire in the garden and lighted the candles in the balmy night, no clouds and stars were shining down on us.

Chris bundled the wheelchair in the car and we are off !! When we got to the G Mex arena and we met additional friends and we put on our radiant yellow t-shirts. Our team was dancing and I wanted photograph them but I was in the wheelchair I realised I can’t photograph like I used to. When I stand up I need to have a walking stick to balance. I need three hands to take a photograph, the pusher was moving and I couldn’t say “stop moving” ! That’s a loss I have to accept but the atmosphere was filled with excitement and I didn’t dwell on my fuzzy photographs.

We left the arena and I remembered I got upset last year by the back of the t shirts which had the wording … ‘We are walking for ……….’ most walkers put the name who had died. I didn’t think I was here last year but I am but I don’t think I will be there next year. I noticed a team who had a photograph of a young teenager who had died, she was so beautiful and vibrant …so sad. As we left the arena we were a river of yellow in the city.

We strolled to Spinningfields, modern offices and upmarket shops. They had a band in a marquee and trendy restaurants with trendy bars with tables outside. I miss going to a meal with friends and chatting as I used to. I was a voyeur like a homeless person who can watch but never eat there. As we left the area a few young women were dancing framed by the windows of the club , they were dressed in tight dresses and high heels, they faced the walkers like prostitutes in Amsterdam. We walked along the canal old buildings and neon lights reflected on the water like Venice. We strolled by Dimitris where I celebrated birthdays, the smell of the food absorbed my senses, then we ambled around the Museum of Science where we went as family in the 90s when the boys were young and we saw aeroplanes, moving dinosaurs and enormous bubbles. The memories of Streets Ahead festivals where we were dancing to the samba band in the streets and the memory of my 36yrs birthday was crystal clear as the bomb descended on Manchester ..we were in Castlefield and Tim went to get my jazz shoes for my birthday gift I didn’t know if he would return ! We stopped for a minute while the walkers lighted the candles for remembrance. We walked past the Band of the Wall where I used to participate to jazz classes and the pub where we met after the Manchester samba band practice.

Pete was a good pusher but the pavement of Manchester is not easy going as they have cobbled roads and Annie was by my side all the walk, as she chatted to me , it must be hard having a monologue for hours but she stayed there and she got words as a reply on my iPad. At halfway my hands were so cold and they went rigid as they were cramping, so my friend Angie had gloves which was better but I couldn’t type on my iPad.

The last leg passed the gay village I young boy was lying on the pavement completely out of it but all his friends were taking care of him, we went to the university campus where I studied, worked as a lecturer and socialised in the cafes and bars. I have just lost my office which was wonderful, it was on the sixth floor where I daydreamed, worked into the night, enthused students on their dissertations, gave lectures to hundreds of nursing students and collaborated with my close colleagues. We passed the swimming pool where I took Sam every week and we had a pizza as I treat. The Midland Hotel where I wished I had an afternoon tea. We got back to the arena about 3am, Chris took me home and it was dawn and sky was becoming lighter and the birds was singing a lullaby to me.

So many people are supporting me and feel very loved and cared. I want to thank everybody who walked as a team on night, it’s more then I imagined. I had a glowing light in my heart, my body is wasting but my soul is warm as the gentle kindness of people who walked with me and have donated money. We have £1585 on the team website but many people have donated on their own page. I hope you continue in the years to come. Life is unpredictable and you or your loved ones might need the hospice in the future years.

Blog 34 – The alternative birthday cake

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I am 54 now I didn’t think I would get to my birthday but I am still living with MND. My birthday was so special as Ruth had a idea to make me a flower cake as I can’t eat cake. It was made with vivid sweet williams,fragrant geraniums and sweet roses with candles and sparklers !!! It was brought to me around the fire, it was so beautiful, Pete got some fireworks which lightened the dusky sky. Sam, Joe was there, and Alex and Ava who made my birthday so special. My sister Sue came up and Ruth drove to the garden centre and we picked cheerful orange and yellow cheerful Japonica, golden Nasturtiums, delicate alpines and a blush red Clematis . The garden is blissful and am so fortunate to have peace and tranquility.

I am conscious of self pity and complaining about the losses I have to deal with. I need reach out and make myself strong and firm up. Self pity is selfish as I can’t see the struggles regarding my family and friends and I can’t support them if I lose control. It’s acceptable to be sad or angry when I have lost another function like my fingers muscles are wasting and I can’t write as used to, but if I go down the self pity street I will get lost.

We can all take that path as we can feel sorry for ourselves when we have chaos,losses, arguments and disappointments but you need to rise above the black water of melancholy and indulgence. Don’t drown in the misery, keep control don’t compare yourselves to others as individuals who have more misfortunes and people seem to have no adversity.. I think self pity is chained to self esteem, if

I have a short life now and I am can choose the victim role or happiness. I am responsible for my life. I have adversity in the past and I have come through it and I can win this battle too ..it my choice . So I am in control in my MND and I can’t decide what I want to do. Whining just makes me miserable and I make everybody miserable .and I put the control in others hands. I will inform you about my losses as you need to know what I can do and what I can’t do but it’s not self pity .

So tonight I am doing the walk if people will push me, can you volunteer to push me for half an hour as I don’t want one person to push me as it’s hard so I want to get a rota .. You can still walk as you can register at the venue under the Northern Star Team .I don’t know how much but you can ring the fundraising office of St Ann ‘s . If you don’t want to walk or you are busy you can donate to the just giving website http://www.justgiving.com/L-Rigby

We are having an Awareness Day on June 28th June at 6.30 pm we are showing the BAFTA ” I am breathing ” again and we are having a BBQ, plant sale , DVD and game swop, BBQ art exhibition , music and cakes I doing hand massages . The venue is Woodley Methodist Church, Chapel Street, off Hyde Road Woodley SK6 1NF

Blog 33 – Peace in the body prison

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Blog 32

I have been to Portugal which was a treat from my sister Sue and my niece Nicola. I had a good rest in the sunshine. I saw a couple of sunsets over the sea, I love seeing the river of light to the sun on the water. I walked in the white sand to bathe my toes in the Atlantic Ocean. Tasted stewed apricots from the tree and read books.

While I was there I recognised my body is a prison as I can’t swim now, I can’t walk far, as I fall too much, I need to be in the wheelchair more often. I can’t enjoy a birthday meal with my sister, I can’t kiss my grandchild and rock and sing when she needs sleep, I can’t take photographs as I can’t get where I want, I can’t support my friends with a chat on the phone. I feel like I am in bird cage and looking at the ‘freebirds’ as they soar around me. I need to look in the cage instead of outside and be grateful of the space…..as this space will become smaller and smaller as the MND crushes me. I have to lie down most of the day, but I can still write, read, meditate and paint as I still have muscles in my hands although they get tired I don’t need to write my eyes gaze.

When I reflect this time last year I was returning from Croatia and I decided to write a blog and I was so active I walked the 10 k for charity walk for St Anne’s hospice I had neck muscles and I was fairly active. I still now appreciate everything I have. I can watch the colours of the sky and clouds and smell the flowers and observe Ava when she has a smile. I can still hold the torch of life, I acknowledge that is not shining brightly in my body but it still shining in my mind. I have had a bright light all my life, maybe I have used all the fuel too quick but I don’t regret that.

When I try to rest I realise I have so many tasks in the house and garden but I can’t tidy up anymore so I need to get pleasure from sitting in the garden and listening to the wind chimes and the water and feel calm and not get frustrated as I can’t do jobs. I have been doing so many tasks all my life and guess you do that too … There is so much tasks to do in life and we never stop either work and leisure. I recognise that people don’t enjoy life they have to go to the gym, they have to mow lawn, the have to do another shift and what do they buy ? ……. more stuff in the house that needs maintaining !!! Put on your list to chill out for an hour a day for a week just relax and give you calm, peace and happiness.

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BLOG 32 – The tree of life

BLOG 32 - The tree of life

Blog 32
Everyday is a challenge
….not to get upset,
….not complain,
….not to get angry,
….not to feel sorry for myself
… and make people close to me feel comfortable.

Some days I need to be alone as am tired and I can’t put on a smiley face. I am sat in my room, on my bed looking at the rain patter on the window. I heard a story of a judge who had Bulbar MND on Saturday on the radio, BBC 4 ‘Saturday Live’ . She died two years ago, they were so many parallels she was a widow with two boys and a her work involved speech. It strange listening to a sad story and it’s me ! I meditate to find joy in my head, find space from the MND as I go into into my mind not my body and I search for the thoughts are destroying me.

I open my eyes and practice mindfulness. I try to be here and not in the future so I appreciate the moment. It’s twilight the torrential rain has stopped and foliage smells sweet, the clouds take a amber glow as they stacking up in the deep blue sky, house martins are soaring in the sky as they call over the dull sound of traffic in the distance. The trees are becoming silhouettes, branches are like stipples from an etching.

I recognise that tree before me is like my neurones but some of branches are bare of leaves and have no life, the disease is getting closer the trunk it might take months. I found out MND also damages the roots of the tree as the neurones are identical to the neurones of frontal lobe dementia. When I found about dementia I thought I can’t lose my mind as well as my body!!!!!!! Only a proportion have dementia but I am worried about what I forget and my mood changes. I reflect and I realise that I cannot control the MND, it like a cancer it goes where it wants I can’t change the direction and so worry is a waste of time.

We worry too much, worry is heedless as we can’t control our life, if we can change our life do it, but worry is like rocking in a chair you can’t go anywhere. We can’t alter our lives with worry we just become anxious and destroy the beauty of the world.

I need to tell you about the the four events MND awareness month in June

1.Clare Schilizzi is organising a run or a walk around Chorlton Park on the Saturday 14th June, at 10.30 am there will be cakes to buy …If you can go down and support us it would be really good . The funds are towards MND.

2.A bunch of people are joining the Northern Star team for the Midnight Walk on 20th June. The fund is St Ann’s Hospice . If want to support us join our team or go to website http://www.justgiving.com/L-Rigby

3.Helen Manning is doing a 5k run with her partner Mark and daughter Betsey on 21st June at Hackney you can go down there if you are in London Venue: Hackney Marsh, Homerton Road, London Borough of Hackney, London E9 5PF at 3pm. If you want to support her just go to the website http://www.justgiving.com/Helen-Manning1

4. Angie Wood, Brenda Stott and I are hosting a Awareness Day on June 28th June as we had last year on 28th June in the evening we are showing ” I am breathing ” again and we are having a BBQ, plant sale , DVD and game swop , music and cakes … I will send the detail about time and venue later ..

Blog 31

Blog 31

The moment of the last few days is when Annabel and Wayne knocked on my door from Australia, I haven’t seen her for years. Annabel was my dear friend back in the day we used to work together, dance together and brought up the young children as well ! It’s good we have social networks like Facebook as we can keep in contact. We had a wonderful week as Wayne pushed me a wheelchair in ‘English Gardens’ with heavy redolent blooms of bright scarlet azaleas, creamy mock orange,soft pastels of aquilegia and delicate Lily of valley and abundant bluebells.

I was let out of the hospice for the weekend, the pharmacist was wonderful as she gave me medication over the weekend so I could home and spend time with my family. The staff are so kind, what I appreciated they didn’t have opinions and judge me but they that thought I was gallivanting every day ..I wish I did!!! The hospice was a refuge for me, a haven for rest.. They have wonderful people who cut your hair, massage your feet,make coffee and supply pain killers and bring you fresh towels and nothing is too much. My medication was sorted out but I am glad to be home.

We had a ‘basket’ of Occupational Therapists’ around on Friday with the odd nurse learning our skill! ( I will get in trouble for that ). Angie was a star as she came with all the equipment and prototype for our hats for the midnight walk. It was a convivial night as we sat around the table, caught with close friends and. reacquainted old friends I haven’t seen for ages. I think crafty nights is the new dinner parties for me. We are walking for 10k on Friday 20th June,come and join us! if you can’t maybe you can sponsor our team it’s on JustGiving as Northern Star. We are meeting at my house and we will have a bit of party before we go.

Since I was discharged from the hospice I have been a ‘pain in the neck’ literally which means annoying or troublesome. It is disturbing as when I want do something like gardening, art or cooking the pain comes and I have stop to rest my head as it’s so heavy, I guess it’s all the brain cells ! I have to manually lift my head up or put a dark, massive neck collar but it holds my head up, not a good look !!!

Acceptance is the key for MND and let go of pride, perfectionism, and pleasing everyone. We need to accept ourself and not worry about judgements from others but I am still struggling to be a supportive friend and find it hard to let others do tasks that I can’t do !!! Sam, my son comes up frequently now and he is so supportive over the weekend but I need to be mum for awhile. MND is unyielding as I approach the challenge every day. Nevertheless I can still experience some pleasure as Chris took me the wonderful garden centre by the airport and I could choose unusual plants to fill my garden and vegetables to go in the raised beds, I can still cuddle my granddaughter,read in the garden and play games with people on line and chat to my wonderful family and friends. The little things are so important and we should value the normal things and not yearn for the big adventures.

Blog 30 – Facing reality

Blog  30 - Facing reality

It has been a lingering week as I have been in the hospice for 6 days now but first days took me by surprise. I know that I have a terminal illness but reality came from being admitted to a hospice, this pulled the flood gates wide open. I was being strong and chasing my thoughts out of bounds but the thoughts seeped into my emotions and stacked them up. The consequence was a disturbing headache in the first two days. I came from my hairdresser and art group where elderly women were battling with their cancer. Then I crashed when I got back to the ward, tears came down my face like a waterfall and the sobs was pounding on my chest. . I need to cry as I accept my life is nearly over, there is a need to grieve when it essential but I don’t want to stay in that place. I try to move on I think that I have had such happiness and so much opportunities in life. Luckily my sister Sue was there and took me home and hugged me and massaged my feet and we watched a film, ONCE by candlelight

I was better when I got back and reality was overground and I could see it and I wasn’t concealing the fatal blow.The staff in the hospice are really different to hospitals they chat to me and take interest, volunteers help out and visitors can come and go and I can go home out for a while. Flowers are allowed and they bring the sherry trolley before tea. Life in a hospice is focused about the patients wants. Generally we don’t focus on death too much as we consider it ‘morbid’, but I think the hospice staff have a excellent job as they are with people dying all day and they must cherish life so much more.

When I go home I try to tidy the house and sort the washing but I can’t do that now, fatigue is like a drug. I can’t bake cakes or make tea in one energy round I have to rest in-between tasks. I am so glad I have the garden and I sit there and watch the days , the cherry blossom unfolding and the wind scattering it like confetti, the tulips from a tight bud release body of colour in a couple of days and the birdsong competing with the endless electric tools around the neighbourhood.

David came up this weekend and he gives deep hugs if you know want I mean ! Ruth and David took me out to the Yorkshire Sculpture Park …we ordered a electric scooter, I tried to run them down and Ruth put on a fearful demeanour. We had laughs and we went to a couple of exhibitions the first one was a photographic exhibition by Jennifer Robertson and Lynne Fletcher, black and white portraits of Yorkshire people who have excelled in their careers. My favourite was Ursula von Rydingsvard she is was amazing as she makes sculptures from cedar and moulded banana paper, they are so tactile and sensual. Our last experience was a council flat from Southwark which was filled with outstanding blue copper sulphate crystals. It was like going to a real grotto shining in indigo blue … Why do describe blue as sad I think it’s magical !

It seems that world is getting smaller but I am still experiencing new things, I enjoyed the scooter and seeing the new sculptures was really special I try to balance my fatigue levels and my yearning to make every day memorable and distinctive for me and and those who accompany me. We are making hats and painting stones on Friday please drop in and register to our team for the hospice charity walk we are registered as Northern Stars.

Blog 29 – Let go

 Blog 29  - Let go

Blog 29
I have just got back from the New Forest and Dorset. Joe was a star as he drove down motorways and busy town centres. I couldn’t do that when I got my license, I was too scared !! We met Sam at my sister’s for Easter. It was a relaxing time but we did something every day. We went for a drive around the New Forest and saw ponies and fallow deer grazing as the sun was blinking through Scots pine trees. The yellow gorse was highlighted at the woodland glade and majestic oak trees with a wide girth. My brother Ron and his wife visited us, and went to visit my niece Joanne and to see her wonderful children. Sue booked a horse ride for half an hour which was lovely listening to the cuckoos. Later in the week we booked in a B & B for a couple of nights near the coast. The time with the boys is so precious we chatted,chilled and contemplated the future while we drove around Swanage and Studland beaches. I love time with the boys but they are men now and I am so proud of them they carried my bags,took my arm to prevent me falling and included me they got a picnic so we could have the maximum time together.They are so sensitive, kind and live life to full. The journey back to Manchester was horrendous as we had a traffic jam and misty rain all the way home for 9 hours !!! Joe was really good and didn’t complain at all. I was so pleased to see Karma as she snuggled beside me all night.

The MND is advancing the worst is my dribbling as my mouth muscles are really weak, I hate looking in the mirror as I look ugly my mouth had dropped and my throat muscles are sagging. My fatigue is really ballooned, I can do a task for half an hour and then I need to rest. Just getting dressed is a big task. Sadly I can’t type for very long as my muscles in my forearm burns. So I need to type with left hand, so my messages on Facebook or emails have to be short.

I have decided to responsible and quit driving, I can’t do emergency stops abruptly and I can’t put the handbrake on. I loved driving as that was my independence and I could visit people and drive when people were drinking. When I was upset I used to get in the car and normal as I could drive out to the country. My world is getting smaller but I appreciate the things I can still do like reading and painting and watching a good film. My left leg is going weak and I do a little dance when I try to control my balance. I guess my body has accelerated in ageing, my muscles have aged in two years rather then forty years. I can’t manipulate as I handle objects and I drop things so often. I realise that everything is packaged I spend so much time opening things. The hard thing is my neck and hands have spasms which is painful but they don’t last long .

Most people with MND, about 70% lose their limbs but they have speech and ability to eat and drink and they can still socialise. The bulbar type means you die sooner before you lose your limbs but I seem to be losing my limbs now. My breathing sadly is stable, my wish that I would die before my body disintegrates. I am chocking nearly every day so maybe pneumonia will get me.

I don’t feel sad I realise that I haven’t got long and everyday I try to cramp everything,my blog, seeing friends and family, meditation, art and a book. These days are not hard I have adjusted to my limits and I want to see everything and I see the world in it’s intensity. I am fortunate to see these months out and I am tolerating the pain. I guess when the pain excels I want to have out. I have too much to do to die now I have a walk on June 20th and a awareness event on June 28th and another break with my sister and niece. I think it’s accepting life and death and making the most of what can do and don’t get upset about the things you can’t do. We spend so much time moaning and complaining about life. Do you wish you could change an aspect of your life ? Don’t moan about it just identify it and let it go and create a plan you want to do !!! It’s easy when you let things go. I have had good practice and it’s easy I have let go eating , drinking , alcohol, smoking, driving , walking , running , cycling , work, gardening, relationships and I have to let go of more in the future but I am on a run now … Practice the things you don’t want ..you only have one life …

Happy birthday Alison .. I will follow your blog, have a holiday of a lifetime !!!

Blog 28- Walking through the ancient forest

Blog 28- Walking through the ancient forest

I have just got back from South Wales … We stayed in a former tavern called George House in Solva which is brilliant cottage with so many antiques and interesting paintings, it is so old but the owners have made it so easy with updated appliances. We had a wonderful view of the sea and an olive tree in the back garden. I slept on the lawn and it felt like I was abroad. Solva is a brilliant village a sandy beach,harbour, good places to eat and galleries.

We had a good day out before we left, we visited the town of Narbeth first, it full of quirky shops and galleries. Then we went onto Tenby, I loved this town we went as a family in 1993 when the boys were toddlers and we were so in love, I was so happy then, I didn’t realise that the years to come would be so hard. If you are happy be content and relish the moment.

We went home via the little sandy cove where my fathers ashes were scattered, Cwm y Eglwys, it was a cold day and the wind is bracing. We went onto to Borth beach next, we went a few years ago and walked the coast with Ruth and Joe when I was well 2010, I realise I have memories before and after my diagnosis. I really wanted to return to see the the remains of the ancient forest which was uncovered during the storms in February.. Ruth was a bit reluctant that I could cope with the walk along the beach as the wind was so forceful and it took my breath away. I was so determined, I try to overcome obstacles and if I say ‘no’ and I can’t do the things I want, I might lie down and give in to MND. She supported me and I am so glad she did as I couldn’t go on my own as I had to grasp her arm to stop falling. On the beach we spotted massive trunks from oak trees and they were birch, pine and alder. I so wanted to feel them and walk around the forest which was here 5,000 years ago. We walked though puddles and we overcome the pebbles and fought the cold wind and I did it !! I made it to the forest and felt the trees which was so soft, it was like stroking an animal. It was so amazing!!!!!

On our way back I became exhausted the wind was so strong, and I couldn’t lift my foot up enough to negotiate the pebbles so I fell on my hands luckily I didn’t have a stick, I couldn’t get up as I was giggling so much… Ruth was trying to pull me up but we both laughing so we had a tussle with the pebbles, sand and the wind. I eventually got up and we had a load of driftwood and stones. They pebbles were perfect for painting as they were flat and had a level surface. So if you want a painted stone it will come from Borth and good memories.

After Borth we went home via the Cambrian mountains, the pine forests were swaddled by the light mist and the lambs were frolicking in the beams of sunshine. It was a significant journey I wanted to catch everything in my memory bank as I looked at the different structures of the trees without the leaves and highlighted by the sunset? It was such a beautiful sight as we meandered on the small lanes and went through the small towns on the border of Wales and Cheshire. We arrived at home to a have a hug with my sister Sue and niece, Nicola, the house was full of candles and scented freesias.

So I am still living with MND and I have laughs and sadness but I am continuing experiencing life. I am still deteriorating as I get closer to the end stage. I fear about how I will die. Even the people in death row will know how they will die! I wish I had the choice of Dignitas in UK. I might not take the opportunity but it will comfort me now if I had the option. I fear most of being in pain and not be able to communicate without the ability to type. I fear of dying of suffocation, the inability of getting my breath. Tomorrow at 9am on BBC Radio 4 , Sir Chris Woodhead a former school inspector who has MND , is to be interviewed about having the right to die without suffering.

I need to give you a message about the Midnight Walk for St Anne’s Hospice which have been very helpful to me, they are the best and they help so many people like me and like you. This year we are meeting on May 9th in the evening to make our star hats and plan our team. So if you want to be part of the team either reply to the blog or reply to Facebook Lindsay Rigby and I will give you the details of the planning meeting or if you want to just come on the walk we will make you a hat !!!

If you want to see the blog last time read the blog it’s Day 89 – A wonderful team.
Happy Easter , have fun and spend time with your loved ones xx