It’s the 10th of November, and for us Zebras, it marks the annual Net Cancer Day, which is celebrated worldwide. This Sunday is important for people. Remembrance Sunday gives time to reflect on many ways to commemorate the contribution of British and Commonwealth military and civilian servicemen and women in the two World Wars and later conflicts. This zebra had a lovely Sunday, spending Net Cancer Day in Church.
I had the privilege of attending the service at Pencaitland Church, where the service began with a 2-minute silence. We heard a tribute to those who served by not one but two ministers, Rev Andrew Dick and Rev John Hunter helped all commemorate respectfully. The busy church was decorated with vases of bright red poppies. The community choir sang two beautiful songs. It was so lovely to see youngsters in the church, filling the rows were brownies, guides and cubs.
The church was a warm, inviting place, with big singing voices. I was heartened to see the interaction between the minister and the children during the service. He chatted about the significance of the poppy and the colour, walked over to where the children were sitting and asked a couple of questions, they keenly put their arms in the air and answered.
As the service came to a close we were invited for a cuppa, for those who were able we walked to the memorial. The youth groups proudly carried their flags, walked to the memorial and waited their turn to lay their wreath.
It was such a lovely day. Pencaitland did themselves proud.
As I sang in the church, I needed no reminding of how lucky I was to be there. The journey of carcinoid syndrome is far from easy. When I was first told, “It’s incurable” – I felt like I had hit a wall. However, once realisation kicked in, I have come to understand what is important to me. I’m the lucky one and have learned to take every day as it comes, life is for living.
Life isn’t easy, and I don’t always feel on top of the world. Stomas, peg feeding, and fortnightly treatment are all a way of life. And my goodness, please don’t mention the hypos, my ever-intrusive Abbot App keeps me on the right track. Whilst I have a different journey from what I planned, I see it as a turn in the road I now need to take and be grateful for all the help on the way, including the relaxation provided spending net cancer day in church.
If you want to look at or buy prints, country clothes, gifts, wellies, our lovable Elf on the Shelf, or some quality Christmas perfume for a loved one, or grab yourself a bargain at the clearance warehouse, Click on any of the images, and they will take you directly to the safe sites.
We are blessed with beautiful sunny days as we approach the daylight-saving weekend at the end of October. As the sun shines on the autumnal trees, the colours of the leaves warm my heart. These past few days have been even more pleasant. As I looked up into the sky at 11pm the moon was shining bright in a clear blue sky. This big bright moon was gazing down. This was no ordinary moon, with was the beautiful harvest moon.
This is the moon at 8pm
The above photo of this beautiful harvest moon was taken in our back field at 11pm, just before going to bed. This is the view I have every day from my bedroom window, how lucky am I.
Click on the welly below to visit one of my favourite places….
Traditionally the harvest moon was timed to coincide with crops. Enabling farmers to work through the night till early dawn, using the bright moonlight. There is a belief that you should write down everything you are thankful for, no matter how large or small. And hold a gratitude ritual under the harvest moon, taking time to reflect on the year’s accomplishments. Some people light a small fire and burn their written-down thoughts.
On the second evening I ventured into the garden keen to see the moon.
When I got up in the morning, I ventured out the front door, in our front field the sheep were accompanied by the harvest moon. It was a beautiful site.
It will soon be Halloween, and the witches will be flying over the moon with their broomsticks. Hope there is plenty of light for the children going out to their parties. I know its a while away, however I hope in December there is plenty of light for Santa to see to deliver all those presents.
If you want to be organised I can recommend a great company. Children can write to Santa, etc. Just click on the Santa logo below and have a look, order your letter, video, etc and make your loved one very happy.
And don’t forget our lovable elf on the shelf. For a selection of elves and friends and a host of accessories. Click on the logo.
Have a great day everyone.
Keep that frown upside down with a smile each and every day.
The clock has sprung forward; the one time when we don’t mind losing the hour’s sleep through the night. The spring lambs are running around joyfully in the fields and the yellow daffodils dancing in the March winds a welcoming sight even on the coolest of days. This coming weekend is Easter. Will the Easter Bunny leave an egg in our house?
I am looking forward to the month of April and hoping the temperature will increase; after purchasing a small amount of seeds and plants I am eager to get more in the pipeline. There are some beautiful violas now in the hanging basket at the front door, ready to give visitors a colourful greeting. Alexandra and I planted some sunflower seeds, my 7 year old granddaughter’s delight when the first plant poked a little green sprig through the compost was priceless. If I could bottle her excitement when she called on me on Monday morning I’m sure I would make an awful lot of people feel very happy when they heard or saw this; best medicine in the world – being together, happiness and love.
Have a wonderful Easter. If you can, keep that frown upside down and smile each and every day.
Since I was a young child I have rode on motorcycles. The noise of the bike engines, the smell of exhaust fumes. Getting caught in the rain, remembering when travelling on a bike you can only carry small amounts. Familiar helmet flat hair. Years before health and safety set in; I would sit in front of my brother with my legs wrapped around the tank at 4 years of age and have a little ride on his motorcycle. Oh what wonderful memories. My first ride on a Harley-Davidson®, I would have been 13 years of age and on the back of a family friend. We called him Tam Harley. Steve and I have been riding together since we were 17. Started on a Suzuki, when we got married we had a Honda, we have had Kawasaki’s and BMW’s and now 39 years later since biking together we are our third Harley-Davidson®. For us Harley-Davidson riders the last weekend in August is a special one. We attend the fabulous bike rally in Aviemore Thunder in the glens.
As a child growing up bikes were prominent. The rally Thunder in the glens (TITG) hosted by Scottish HOG® Chapter Dunedin #9083. The rally is in Aviemore Scotland. For me this place is a very special, growing up I visited this town often and went skiing, wild swimming, hillwalking. Had so much fun skiing down those glistening white slopes. My heart beating so fast whilst I was racing downhill wishing I could beat the clock. Once again for me Aviemore brings passion, warmth exhilaration. The four seasons in an hour hasn’t changed. I have merely switched my walking or skiing clothing for biking gear and layer up and strip off as necessary. With the exception of Friday we are certainly blessed with warm and sunny weather for bank holiday weekend weather for Scotland. It was so lovely to go around in a t-shirt on Saturday after the mass ride out. And when we were up the mountains on Sunday the sun was shining. Thunder in the glens at its best.
The Three thousand sell out three day rally is in its 24th year. The mass ride out on the Saturday gets a great deal of participants on the pavement, in their gardens along the route, in the fields, etc. Families waving, smiling children. It is a happy day for many. The Sunday ride up the Cairngorm mountain is an emotional one for me, it brings back many happy memories of my skiing days. As well as a very sad occasion when I lost a friend on the mountain. The great thing about being able to sit on the back of the bike is you can sit and take in the view, which no one can deny on these routes is a beautiful one. And you can relax and think of all that has gone by over the years. The Sunday afternoon at the rally site there were charity rides. Where volunteers were giving rides around the site on their Harley-Davidson for a donation to charity. In the evenings there was an absolutely amazing choice of live music to choose from.
As well as my hubby being the Safety Officer. This year on the Mass Ride Out Steve was a road Marshall it gave me a chance to take photos when we were at the junction. I got a super opportunity to take photos of riders, some with their flags flying high, others waving and smiling.
While up at the rally you can stay on site, stay in a Macdonald Hotel or camp. Or choose to stay somewhere else and travel to the site. Whatever you choose you are usually guaranteed to have a super time. If you are away and want to listen to something on your phone, I found the perfect item; its one of the World’s Smallest Alexa Built-in Waterproof Mini speakers You can buy it from Amazon. You connect it to your phone, listen to it anywhere, anytime.
2023 will be the 25th anniversary will you be there?
The next event I am looking forward to is Halloween. Need to get some decorations. An ideal place is here https://giftdelivery.co.uk/?ref=DrElizabeth or at Pomchick -Why don’t you have a look? You never know you may find something you like, treat yourself or someone you love.
Safety is paramount. Make sure the battery on your vehicle is in good order. The battery guys have great deals – check them out.
Absolutely great gift I will be buying next on my list is from Perfume UK
Have a look on this website. These products are fantastic. Earhubs.
August was always a month of celebration, I was born on the 6th of the month in 1966 and married on the 22nd in 1986. However when my fabulous Mother died on the 9th of August in 2013 I felt like the life had been sucked out of me. And most certainly did not feel like celebrating. As the years have ticked on I have found I miss her more each day. The telephone rings first thing in the morning and I still expect it to be my Ma. My heart aches, I yearn to sit and chat and share a story or two like we always did. There is so much I want to tell her and the best place to do this is having a blether and a walk in the sunshine.
On Saturday I took a walk in the sunshine. I walked 100 yards from our house in the beautiful sunshine. Walked my Labrador Bella up the garden and let her run free in the field. I admired the beautiful field of everlasting flowers. I sat in the field looked at the stunning carpet of purple. Dancing were several rogue vibrant red poppies. Swaying back and forth, on looking at them if one had a vivid imagination such as mine they look like they are chatting on the dance floor. As I sat I thought of Mum, she would never want me to be sad. Think happy thoughts she would say. Smile and the world smiles with you. On the last day of her life she said to me I will never leave you and I believe her. I still feel her love.
I also feel her love through my beautiful grandchildren. They are very happy loving funny children. Our grandchildren most certainly keep me going and help me all my daily battle. I can now understand how my mother fought so hard when she was diagnosed with lung cancer and struggled on even in the darkest days. The shrieking laughter, the fingerprints on the glass cabinets they leave behind. The little stories they read to you are such a tonic.
I enjoy most of my time with my amazing labradors, very rarely there isn’t a dog at my feet. Bella was on the walk with me on Saturday. We look after our dogs and make sure they get well fed and appropriate supplements. One such supplement is Premium Omega Oil Capsules. You can buy them from Amazon and get them delivered straight to your door. I give both my labradors these super supplements. It comes in an easy to use pump and keeps their skin and coat in great condition. Buddy and Bella love the taste so its so easy to give.
There are many days I am shattered. Would I have life any other way? No not at all.
Have a grand day everyone. And thanks ever so much for taking the time to read this short blog post.
Living everyday with a chronic illness can take its toll. Especially when a rare disease such as carcinoid syndrome and doesn’t trip of the lips easily. Most people haven’t heard of the cancer that comes with it let alone understand it. The daily routine of creams, feeding, blood sugar checking. Not to mention the absolute fatigue. What makes life much easier is routine. And most importantly I make sure I find a special time for friendship, relaxation and love.
In between my weekly tube services, 14 day octreotide treatment I find time to get some normality into my life. The one thing I promised myself is when the words incurable rang in my ears; I most certainly gave myself a talking to and will always fit this disease round my life not my life round the disease. My family is hugely important to me. I will always find the time to have fun and a willing ear. As time is going on and my condition progresses what is becoming apparent to me is what helps keep me sane is friendship, relaxation and love. The unconditional love I have for my husband and children (and their children) goes without saying. I love and am loved by some beautiful people that help me get by. Friendship is amazing, it is comforting to get woken by your mobile phone with a message to ask how you are. Or just to say hello. Sometimes the message actually may be asking for advice – I like that. Totally feel needed. Relaxation is essential for us all, enjoy.
I have been having a particularly difficult time recently with my rig. However on Saturday it was the most beautiful day and there was a Chapter Ride organised. We are members of a Harley-Davidson® bike club – The Dunedin Chapter. We get together for rides, social events, charity fundraisers. Superb way of getting out on the bike and meeting new people. Steve was going on the Harley-Davidson® on the ride. Some of our friends were going on the ride. I decided since it was only a 60 mile run I would go to. Super weather, beautiful scenery, great friends and on our latest Harley-Davidson®. Of course I clambered on the back of the armchair seat. Feed linked up and away we went. A wonderful ride to The Big Red Barn.
After a wonderful relaxed few days seeing and chatting to family on the phone. Speaking to friends. And getting out on the bike for a while. I am now ready for my hospital appointment tomorrow.
Think I will get on the website Handy Candy and get a few goodies for the house. Life is good.
Over the last few months life has certainly had its up and downs. As usual getting the usual carcinoid syndrome treatment. Not feeling the best at times and all that comes with it. However on the plus note covid restrictions have been a lot better, I have seen my family much more, Steve has been on the Harley-Davison®. We managed an evening out to see Del Amitri live in Edinburgh, at the Queens Hall. Our youngest son graduated from university. I got head hunted for a job from a very reputable company. We have a lot to be grateful for. As I was sitting working on my computer my phone gave a familiar bing. I looked over, it was letting me know my screen time was down. Most likely because I have been writing more this week, and I have gave the social media platform Facebook a wider berth over the last few weeks; mainly due to seeing the same old…… Although I have to confess I did see a few things on it today that made me smile, and other things that put me off…… on reading down the page I thought what has made me smile today?
Firstly waking up and being alive makes me smile. Every day is a bonus. I love where I live and who I live with. I open the curtains, roll up the blind in the morning, look out my bedroom window and the view of my back garden is a huge field where I enjoy walking my loyal Labrador Retrievers.
Buddy sitting at the front door
My boy Buddy is my assistance dog. He takes great care of me. Knows when my glucose levels drop. When my heart is misbehaving. He was such a great chap and tapped my nurse on the knee on Wednesday when she was attending to me, I asked her to check her blood sugar level it was sitting at 3.9 – he knew she was hungry.
My family not only make me smile they make me laugh. We have fabulous times together. Play old fashioned games, sit and talk, sing together, dance in the house and most importantly love each other.
Writing keeps me sane as well as makes me smile. Jotting down in a diary, keeping a journal, and writing for a living. I simply love it.
Listening to music most definitely made me smile today. Whether it is music on Apple Music, reminiscing about times gone by, Steve strumming his Martin guitar and beautifully singing along or Alexandra practicing her heart out on the violin or getting a guitar lesson from her Grandad. All those tunes give me such a warm feeling inside. It made me remember about that time……well will keep this one to myself…….
Remembering yesterday, listening to stories about the trip out pumpkin picking and dancing around the house and face painting.
From as long as I can remember my parents encouraged me to listen to others and always speak up to others and tell the truth no matter what has gone on. I have always taken this with me, passed this on to my children; said to them whatever has happened just tell me and we will deal with it. This has I believe gave us a trustworthy bond between parent and child no matter what their age. My lads are in their 30’s and we still talk, I trust them and they trust me. Growing up I knew I could go to my parents and talk to them about anything and everything, I always knew whatever I said to my Mum or Dad it would go no further. They were full of fabulous advice, helped me transform from teenager to adult. Who do I talk to now? I chat to a couple of friends about everything and anything, one in particular we know we can discuss ‘our laundry’ with each other. However, my ultimate bounce off and discussion partner is my hubby Steve, we are partners in life, super friends, chat about all and sundry and most importantly there is that Element of Trust
Steve and Me
So what is trust? I believe it is when someone can be relied on. Their honesty and integrity shines through. If I trust someone it means I believe they are who they say they are and they will always do what they say they will do. Most importantly what comes out of their mouth or from their written hand is the truth. They will not lie to me.
I pride myself in having a fabulous circle of friends, a beautiful family and most certainly a very close knit few that I value and trust with my life. Recently I have been disappointed with acquaintances. When I got told a lie from someone I actually never thought I would. That kick in the shins fairly knocked the stuffing out of me for several reasons………
There have been people in my life recently that have been irritable, non trustworthy, tit tattling to other people. These reprobates aren’t worth worrying about.
Building up trust: has not always made me popular but I’m a believer in say what you mean and mean what you say. Give people the benefit of the doubt. Remember the role of respect.
I have counted my blessings. Enjoyed being with friends and family. And relished that special time with my most loyal trustworthy labradors, Buddy and Bella; now they could teach a few humans a thing or two.
Buddy & Bella walk with steve
Bella & Buddy help steve
So for me, trust is important, especially in building up relationships. For those who know me, I’m a very happy honest human who enjoys life. Every day is precious and I am continuing to enjoy life with my beautiful family. On Saturday Steve took time from his busy business we spent a precious day together, Steve did a wonderful job gardening, Bella watching every step. Sunday we both took an amazing trip on Fattie our Harley-Davidson® to Moffat, St Mary’s Loch and Peebles with some friends. Sunday; beautiful scenery, lovely weather and great friends; a fabulous recipe for an amazing day out. Just the tonic to end the week.
I’m nearly 55 years of age and the words Huntington’s Disease are heard and said without thinking. Not thought of as strange or unusual. Why because I first officially heard the actual word Huntington’s when I was approaching my teenage years. My aunt (my Dad’s sister in law) was diagnosed with it. My auntie Josie was a beautiful lady; inside and out. Anyone that knows me will know that I am a dog with a bone, when I hear something I want to know everything about it. Curiosity killed the cat but satisfaction brought it back. Thats me. In the mid to late 1970’s it wasn’t something you shouted from the roof tops. And the ‘grown ups’ discussed things behind closed doors. I heard this word ‘Huntington’s’ getting mentioned often and then started seeing a change in my beautiful aunt. As a family we all spent a lot of time together. I spent quite a lot of time with my aunt and uncle’s 4 children. One day I came out with it, I was almost 14 years of age and I felt I needed to know more, those days you just couldn’t jump on a computer and search google. My aunt was amazing, she was actually brutally honest. She told me she loved my honesty and gumption for asking. She said when the time would come that no-one would be able to understand her talking properly, in fact she may hardly not be able to be understood at all, she herself would still be able to hear and would understand everything. She said she was nervous of being a prisoner in her own body. She laid her hand on mine, my heart thumped so hard I could hear it echoing in my ears. She asked “you will still talk to me”. I took her hand with my other and said, “am I my Mother’s daughter am I not. I can talk for Scotland. Of course I will”. She said to me if any of my children get this I beg for a cure in the future. Huntington’s disease is hereditary and there is a 50% of inheriting it. Bang on in my aunts family the two younger children, Susan and Colin were diagnosed. Colin chose never to marry, however prior to getting confined to a wheelchair if Colin was still here today and was promoting awareness he would say It’s me Colin, I’ve got Huntington’s Disease. Are you listening?
Colin
So what is Huntington’s Disease? It is a devastating rare hereditary disorder of the brain. Your chances of getting diagnosed is 50% if you have a parent with the disease. It affects the nervous system of the body; the network of tissues in the brain and the spinal cord that coordinates your body’s activities. Everyone with Huntington’s through time will deteriorate physically, cognitively and emotionally. Till eventually they are fully dependent on the help of others, whether it is family, carers or nursing staff; or a mixture of all. Symptoms usually rear their ugly head between the age of 30 an 50 years of age, with symptoms getting worse over a period of 10 to 25 years until the person dies. Huntington’s affects between 1 and 10,000 and 1 in 20,000 people in the UK. Unfortunately, as yet there is no cure and very little awareness.
The Month of May is Huntington’s Disease Awareness Month. The wonderful organisation; The Huntington’s Disease Alliance UK and Ireland are running a campaign Family Matters. The Alliance consists of four independent charities throughout UK and Ireland. The four independent charities all have the same goals and strive to help those affected by the disease, promote awareness and do their best to increase the understanding of UK wide of Huntington’s Disease.
Charities like these are important to get the message out there. Also to help those living with the illness, offer support, put you in the right direction in a time of need.
My auntie Josie was such an inspiration to me. Despite her own fears and worries she brought up with her supportive husband, my uncle, 4 lovely children. In her early days she was a Sunday school teacher. A loving mum, a super aunt. My Mum said she made not just a great sister in law but a great sister. It seemed so quickly that her speech became slurred and for many they didn’t know what she was saying. Her hands and legs were turned inwards as time went on and walking went from slow, to staggering to not at all. In the early days some people would assume she maybe had a glass of wine or six. But soon it was apparent that it was much more. I always remembered the conversation we had that day, and I would blether and tell her of my day, and would not care how long it took, I would wait till she finished asking me the question. It was usually, how was my brother’s children? or or the like. One thing she never lost, despite getting this cruel debilitating condition was her caring nature. Life for my auntie Josie was difficult, but yet she had very happy times, such a loving caring devoted family surrounded by love. For my aunt her husband was her rock. He cared dutifully for her in the latter stage, with the four children rallying round as and when they could.
As a family we are all very close. Close brothers and sisters, nieces, nephews, aunts and uncles and cousins. We all saw and still see each other fairly regularly. Most definitely keep in touch. I spent many a day in my summer break with my Johnston cousins. One thing we certainly all do is look out for each other. Try and help or offer advice if we can, when we can. The four children that were born and could be carrying the gene did not get treated any different. Laughter, games, studying, work, etc went on. Then came the time for the tests. The two youngest, Susan (same age as me) and Colin tested positive.
Colin, is a fun character. My punk rocker cousin in his tartan suit. Who drove stock cars. Loved classic cars. Collected them, looked and drove them. Was a fabulous boxer, with numerous trophies. An independent soul. He never married or took a partner. Lived with his Dad then moved to his own home, he loved his own house. He loved his music even more and travelled to punk rock festivals. He went on cruises. Loved his family dearly. His nieces were everything to him. When he started to struggle with walking he took his two nieces Leah and Kara on a Cruise, they loved him so much they helped care for him at times when he was less able. Colin liked a rum and a dance, and when he had to get his peg feed and was in his wheelchair, he didn’t let things get him down. He would put a little rum down his tube and he took to the floor on his wheels in his tartan suit. The sad fact is Colin had to get a peg feed because he lost his swallowing function; this was a decision he didn’t make lightly. It was probably one of the hardest decisions he had to make. And I’m not entirely sure he really wanted it. For someone that was so active and loved to sing, dance etc. This disease is so cruel to watch. To see my beautiful cousin struggle to tell me he still loves me was so hard. But at the same time it was so good to see how courageous he was, putting all his strength into a conversation, that love was still there and he definitely could still make me smile.
A very happy memory I have is a family BBQ held by Susan and Colin’s sister Karen. We had a super time. As you walked into the garden you were welcomed with smiling faces, the sound of children laughing and adults chit chatting and generally having a great time. Karen’s children, Kara and Heather and Susan’s girls, Leah and Billy would get up at any time needed and automatically fell into the role of carers without looking like a carer. Just that help with a sip cup, or cutting up the food to the correct size. A beautiful caring family that looked after each other without having to ask; the automatic care, willing ear to listen, physical help, loving unconditionally.
Family Does Matter
Colin’s symptoms worsened. It became impossible to live in the house that became his beautiful safe home and despite having carers in several times per day and family popping in the heart wrenching decision of moving swiftly came into his life. Colin needed to go into residential care, the difficulty was finding one that took a person diagnosed with Huntington’s Disease. Much to Colin’s disappointment Colin lived the last days of his life in Balhousie Rumbling Bridge Care Home. Colin was no longer a five minute drive or a 15 minute walk from his sisters and nieces and close proximity to his brother, Billy, but a drive across the Forth. He was still easy enough to visit and my sister Hazel visited on occasions too, and at times took my Dad. Colin loved to get a visitor, whether it was a sibling, cousin or friend. Rumbling Bridge Care Home did a fabulous job in looking after Colin. Sadly we lost our Colin to Huntington’s Disease. We had a funeral in Edinburgh in true punk rock fashion at Colin’s request.
Susan, Colin, their Dad Bill & Susan’s granddaughter
Susan continues to battle with Huntington’s Disease every day. I spoke to her on chat yesterday. And to her daughter Leah, we are so looking forward to the restrictions of covid getting lifted so Leah can drive her Mum down to mine for a visit. It’s a bit of an expedition, but will be worth it. Leah has room for Mum’s wheel chair in her car. I live in the country, the house is a detached, parking right at the front door. Plenty of room. And certainly no trip zones. So all good. I am so looking forward to seeing Suzie Pie, I haven’t seen her personally for a while especially due to covid restrictions. Susan’s speech is now slurred and walking worsened she needs the chair. I am so heartened she has a devoted compassionate family. Although it’s heartbreaking to see my cousin deteriorating so rapidly from the last time we met, the person I know and love is still there. Life for my beautiful cousin is like living on a knife edge. A simple meal, something most people take for granted is a terrifying ordeal. Every meal, literally any piece of food or drink that goes down is dangerous. Just recently Suzie pie aspirated into her lungs and then had to get treated for a severe chest infection. Unlike her brother Susan does not have a peg feed and is now passed the point of being able to get one. I long for our next meet up so we can have something that hasn’t been allowed for what feels like an eternity an almighty hug and we can spend some time together. We always share “cousin time” it just takes a little longer to have the conversation. But as they say Good things come to those who wait but better things come to those who are patient.
This disease changes the daily lives of everyone that is affected with it. The person that is diagnosed is eventually trapped inside their own body. Forced to get help from others, be it physical and emotional. Even the fittest and most ambitious of us, as time goes by, our bodies get consumed by HD. Families and friends do their ultimate best to help and care both physically and emotionally. However at times they feel the pressure and need reassurance; we need to remember they too are fighting their own battle. Living with Huntington’s Disease affects the daily life of the person with it, but those living around them. It can have a massive impact on those who live in the home. When symptoms start to worsen and physical symptoms begin to progress equipment starts to invade the house. Yes its a fabulous help. But at the same time, another tick of the box that the disease is progressing in the direction you were hoping would take a little longer.
I hope by reading a little about my aunt and cousins you have been able to open your eyes to Huntington’s Disease and I’ve managed to raise awareness of this crippling disease that only takes over the body of those diagnosed but can haunt the minds of all those affected.
The awareness month of May is what is needed to spread the word. Let people feel more relaxed and knowledgeable about the disease. Family Matters. Absolutely fabulous, please take a look at their website. I have also been heartened to see on the television on the BBC drama Casualty, A&E Doctor Ethan Hardy has tested positive for HD.
The Family Matters Campaign is to raise awareness of Huntington’s Disease. This can only be a good thing. They are inviting those who have experience of Huntington’s to send in any information they would like to share, in the form of pictures, words, thoughts; it can be a poem for example, a quote, a few photographs. These will be shared on a digital community space called The Living History Project – it will be shared on The Living History Wall
To help promote awareness of Huntington’s it is important to share information not only by talking about it, reading pamphlets, etc, but moving on to the digital age. Sharing on television, websites, social media, etc. As I said earlier the BBC have brought it in on the storyline on Casualty which is fabulous for raising awareness. Charities such as #FamilyMatters help so many people and work so hard especially promoting awareness of #HuntingtonsDisease during #HDAwarenessMonth of May. You can find a relevant organisation in your area:
@HDA_tweeting – England and Wales
@HDAssocNI – Northern Ireland
@HDAI_ie – Ireland
@ScottishHD – Scotland
The Scottish Huntington’s Association avidly campaigns for Huntington’s disease charities. Olympic medalist and double world champion rower, Sarah Winckless is patron. Huntington’s is in Sarah’s family on her Mum’s side. Sarah herself has tested positive for the gene.
One thing I have to say I have rarely met a person with Huntington’s that has been a complainer in life. They have such a hard deck of cards to deal with in life and yet always seem to make the most of it.
So while you may have been complaining about being trapped in your 4 walls for a few weeks or months due to Government restrictions remember the people that are fighting a battle to get out there all the time.
Being at home permanently since March 12th has certainly given me time to think. There has been many a lonely hour to reminisce. Its been lovely to look back and remember events that have gone by, places I’ve have visited, people that have came into my life and made an impression; left their mark.
In my 54 years of life its been happy, eventful and surrounded by a great many beautiful caring characters. From the moment I have been able to comprehend I was showered with love. As I grew up I was always shown kindness, the family philosophy was treat others as you would like treated yourself, I will never ask anyone to do something I wouldn’t do myself. Yes these days as I am getting less able and I will pay someone to clean, paint or fix something – I’m sure these tradesman appreciate the work.
Getting back to my time to think. When I was sitting putting my feed on I was thinking about when part of my job included listening to people and their problems, how they were feeling. I encouraged them to talk about their feelings. Express exactly how they felt at that particular moment and how to deal with it. I would gently persuade them to chat and through time just by talking they would soon realise what made them happy and what made them stressed and sad. We would work on the positive aspects of their everyday living and help them get back to a happy place. One thing that did happen to several people is that at some point during their journey was they would face an emotional encounter. Regardless of their gender, age or size they would talk about whatever may be bothering them, or perhaps on the contrary what has made them very happy that day and then suddenly the voice would go quieter, and that emotional encounter would take place; the real journey had begun and I would consider my work as continuing success…. Looking back at how a lot of us are feeling at the moment, frightened to show our emotions, a lot of people get told to be quiet, not talk about their feelings, not cry. If they do cry many are met with Now come on, stop that crying, pull yourself together. Stacy Solomon on Loose Women was talking on ITV and said her mum used to vacuum when she was crying, to hide the fact that she was. All very sad. We need to be allowed to show our emotions.
I still remember one particular chap when I was working, he was your average build gent, and a father of three, he felt he was failing all round, his family, his work, his health, and most importantly himself. Of course he wasn’t. When he got to his emotional encounter he quietly sniffed away the tears and continued to talk, shortly afterwards he described blurry vision and tears threatened to spill from his eyes. He wiped his eyes so much they were red and swollen. I handed him a handkerchief and said let the tears happen, please don’t be embarrassed. His lips trembled, an involuntary whimper escaped his lips as tears spilled over the sides of his eyes. He looked over at me, his face shouting out help me and please listen. His body wracked with an onslaught of sobs and tears. The tears raced down his cheeks. He cried for a few minutes. When we discussed events he explained how relieved he felt and thanked me for getting him there. We still had a way to go, however, the big lesson learnt was not to these suppress emotions; and deal with them appropriately – the basic emotions are happiness, fear, surprise, sadness, anger and disgust. The message from this experience I took was most definitely people gain from expressing their emotions, getting upset, talking about their problems; a problem shared. Big boys do cry.
I most certainly do know being home on my own and having this time to think I also have to to shed a tear and I have probably cried more in the last few weeks than I have done so for quite some time. Although I do have to say my life is made so much better by those folks that message me and ask how I am, who give me a phone and have a natter. Please drop an email or a text or give a quick call to your pal or your mum, brother or sister, etc. I have noticed there are some folk that I only get texts if I send them one first, would I get one asking how I am if I didn’t send them one? Perhaps I would, maybe I wouldn’t!!! But one thing I do know there are some folks in my address book that we send messages to each other regardless, sometimes I’m first, sometimes their first. But one thing I do know we deeply care about each other and look out for one another. You guys know who you are; I love you.
As the pandemic continues. We are still in lockdown. Life continues to be on a different path. Real life physical human beings I see; my husband of coarse, I live with him and so very grateful we have not only been lovers since 1982 but best friends. My nurses; to tend to my gastrostomy tube, change dressings, etc, etc. And see anyone from a distance at the door when they deliver parcels and mail.
Modern technology has saved my sanity. Steve and I having a long lie on Sunday morning, it’s 9am and my mobile telephone has that distinctive ring. I know it’s a FaceTime call. Simultaneously Steve and I say know who that will be. I click the phone and can hear the joyous tones. ‘Morning, what are you doing in your Bed Granny’? ‘Having a got chocolate’ is my reply. We are having a three way conversation between our house (Steve & I) , Stuart & Alexandra, and Teeny & Grace. It’s fab, we all blather loudly, the girls can’t believe we are still in bed. It’s Sunday, I say in my defence. They have us laughing. Along the hall we can hear the dogs. They can obviously hear the girls talking and they are excited. Can we see Buddy and Bella please. I toddle Along the hall. Bella is actually smiling. They are pleased to hear the kids. Morning Bella Boo, Morning, Buddy Boy, says Alexandra, miss you, the labradors tails start to wag frantically. Grace calls on Frieda the cat. Alexandra asks ‘Granny can you go out the back and say morning to Birdie please’. I go see the beautiful black lionhead rabbit. The girls are ever so happy. Right that’s enough I say, granny is wiped out now. I sit on the seat at the table very happy and blether away . I maybe can’t see them all in the flesh, however a video call like this makes the world worth living. We all chat say what’s been happening and what the plans for the day are.
Both girls had plans to play in gardens. Alexandra said she was going to be drawing and colouring in later. Grace was going to be playing games.
Hold my hand and Smile Each And Everyday
Alexandra drew round her hand in her notebook, she tore out the page. Left the page for me with the drawing. She said I can hold her hand anytime. She said on a FaceTime call to me Granny I would just love to hold your hand everday
I was so chocked up, it’s difficult to believe Alexandra has just turned 4 years of age.
At this difficult time in this crazy world we need to be grateful for what we have. Make the most folks.
As we all know and expected this Easter Weekend is somewhat very different. With most of us being in isolation and being asked to stay at home. I expected to feel lonely and miss the activities that I had been expecting to do and the people I was looking forward to seeing. However, there were a few folk that did some very nice act of kindness towards myself, Steve and my labs which made me feel very special, loved and happy. Certainly not lonely at all.
Just before Good Friday, my nurse was in to service my gastrostomy tube and change my dressings. As well as check on my well being, and see how I am doing. As my nurse was leaving that day she left an Easter card for Steve and I and doggie treats for Buddy and Bella – all in a lovely Easter bag.
I got a special FaceTime from my 4 year old granddaughter Alexandra to let me know she had drawn pictures for us. She had done a special rainbow for our window and would post it through our door. Her dad sent a text of her holding the picture. I was so excited to get it. Words cant explain how much we miss seeing her, She usually visits every weekend and when you are used to seeing a grandchild on this regular timing, this lockdown period feels like lifetime. She is my pot of gold at the end of the rainbow. I was in hospital for 12 weeks with sepsis and hardly saw anyone however I felt poorly and had no sense of time on many days. This is different. However, with the technology we have and keeping a positive attitude we can get through this. Chatting on FaceTime and sharing what we have done throughout the day makes me smile, we laugh and sing, I just love my FaceTime time.
We have had a relaxing Easter weekend. Writing, gardening (for Steve) some tv and lovely quality time together with the labs. I was in the Wetroom putting on my creams when I heard Bella ‘friendly barking’ so I ignored her. Half an hour later I went through to the kitchen to put on my feed. As I reached for the pump I noticed my mobile phone had several notifications. As I sat down to read them, I noticed one was a message from Danielle.
Danielle has been my friend for at least 23 years. We have been through a lot together. I know if I message Danz and ask can you please come here she will come. I have been there for Danielle emotionally and I know she will be there for me. Again I am so grateful for technology so we can chat ad text. So what did the message say? It said. “I’ve left something at your front door xxxx”. What was left?
The most beautiful canvas, of course it is zebras. And cakes for uncle Steve. He will love them. Tonight I will light one of Natalie ’s candles and give her an extra special thought, not that she is ever far rom my mind.
A massive thank you to my special people this weekend, you are what keeps me going. You all know me and what makes me tick. Why, perhaps its because I love you guys let you into my heart and you know what makes me happy.
Why zebra? Neuroendocrine cancer is rare. Zebras are rare. When doctors are getting trained they are told
when you hear hoofbeats.
Look for horses not zebras
Many charities and people with net cancer adopt the zebra as their mascot.
My beautiful rainbow picture all coloured in. Up in my window showing with pride.
smile each and every day 