The Mourning Bride, a poem by William Congreve, 1697:
My life is now listening to music all day. When i feel down and not able to cope my music calms me. This is one of my favorite pieces.
Then tomorrow i will be listening to King Crimson.
Another day Crosby Stills Nash
I’ve only just begun, The Carpenters
My list is endless. When you feel down and depressed listen to music it really is calming and can make everything seem so much better. Just the sound of the ocean is soothing. You never have to be alone when you can have music in your life.
I never realised as I sat there having that photo taken on a lovely day in Brazil that soon my life would radically change and the person I was that day would slowly dissolve away like sparkly fairy dust.
Before that day I was working as a tutor in further education. I loved work. Over my life time I have taken on many jobs being a Leo I just enjoyed challenges.
When I was 16 I lived in Cyprus with my family dad was in the RAF. I completed a typing course as most of us did way back then. We would be clack, clacking away at those big heavy typewriters. Before we even started our nails if they were long would be forcibly trimmed back by our tutor, “girls you can’t possible type with talons” and well we just accepted that, thankfully back then I was a nail biter so never had to face that assault on my body. Some of the girls would cry for days looking at their beautiful finger nails all cut down to the tops of their fingers and bits of coloured nails lay sadly tossed onto the floor.
I loved typing and excelled at it. My words per minute were top of the class I could hit accurate speeds of 80wpm. I passed all my typing tests but sadly did not do so well with GCSE in English and Maths. I can’t remember my results now but sure that I failed maths, although I did pass Commerce and English but only scraped through that. Ah well never let these things get you down over the years I have to say my life was good as far as working was concerned.
It was fun working if my memory serves me my wages were about 20.00 a week for 37 hours. A job became vacant as a secretary/typist for a Flight Lieutenant in the Mechanical Transport Section, which I applied for and got. I loved that job and it was a huge promotion for me I was told a lot of people applied for it but I got chosen. My boss was such a great guy, Flight Lieutenant Bateman, I worked hard for him, and of course the place was teeming with men which gave my ego a boost
It was my first sojourn into working in a man’s environment and have to say I enjoyed it and over time learnt to stand up for myself in a male environment which stood me in good stead in the future as I often ended up working in engineering companies.
I met my first husband in Cyprus. He left before I did as he was stationed back to the UK. However, we got married eventually in minehead it was a lovely wedding I have to say both my parents were against it they didn’t trust my choice perhaps really I should have listened to them. I married my soldier Michael James Turner-Sterling. He was married in full dress uniform and to be fair he did look smart.
I was shy off 19 in July when I got married. Michael was a hard man, very aggressive and controlling, and it was my first lesson in love the hard way.
After the honeymoon we were stationed in Camberley at Sandhurst no idea what he did there he was in the RAOC (Royal Army Ordnance Corp). We had a small bedroom in some ladies house, all I can remember is it was lonely and there was no drain to the sink, so everytime I did dishes I had to make sure there was a bucket handy. Still well you just got on with it. Lucky we were not there long before he was called for service in Germany Munster. Without hesitation I had everything packed in an MFO box, and off he went, whilst I waited at my parents house for him to find us a home. Finally the call came, and at 19 without hesitation I found myself travelling to Munster Germany on my own with my suitcase excited to start a new venture, I don’t remember being scared just excited.
Michael my husband had secured an upstairs studio apartment temporary living with a German lady Frau Pennykamp. Gosh she was a bit of tyrant and didn’t really speak much English. I was left for days on my own whilst Mike was at work, and it was lonely but thankfully we were given a married quarter flat after just a few months of moving there, and once I had settled in I got to know the other girls and we would while our days away having coffee mornings, and shopping and in the evening meeting friends for drinks and spontaneous jamming sessions as we had met German friends who were into folk and guitar so life was never boring.
I had my first daughter Nicola in Germany. It was a lonely time as there was no support from family but my new Army friends helped and so did SAAFA.
I worked in the NAAFI for a time just to get out of the flat before I was pregnant, but once baby came well I was too busy for that. My best friend Linda came to stay with us for a holiday which was brilliant and my dad came over twice to support me, when I was having marital issues (thats not for now).
After 3 years Michael again was posted but this time to Hong Kong. I had to travel with a young child it was such a long way back then, we stopped in Goa, thankfully Nicky my first child was a model baby and behaved herself and slept most of the way. We finally and exhaustively arrived at the airport which was a scary thing, as in those days the runway was actually on a strip of land between water, eek as I looked out the window my heart racing and clutching Nicola to me, the thoughts of crashing into the sea came into my head and believe me when I tell you I was glad to feel that bump of landing.
Living in hong kong was just amazing I loved every part of it, even the tropical storms, I grew up fast there emotionally and spiritually. The shopping, people hustle and bustle of life, the odd superstitions. It was just amazing. I lived to start with on Hong Kong side before we moved to Kowloon. Hongong i lived in a high rise sort of flat. When I had to put my washing upstairs, I could literally see the aeroplanes go by and from my balcony I could see the people inside the plane and wave at the time, as they were going to land at Kai Tak.
I became strong because well I had too, living with a controlling man thousands of miles away from family there was no other option. But I think it was this period of my life that defined who I would become. It was become hard or not survive.
I had my second daughter in Hong Kong Miranda. I nearly lost her when suddenly without warning I was hit my excruiating pain, which turned out to be a massive cyst on one of my ovaries. I was taken to the hospital on an emergency and thank the lord they managed to remove it without harming my baby, I was only 3 months pregnant at the time. I had a good recovery and an easy birth thankfully.
My best friend Linda came to stay with us for a holiday which helped.
Sadly in that period of time, we lost my sister in law Lorraine who was a bridesmaid at our wedding to leukemia it took Michael hard to be honest as he thought the world of her, and I honestly don’t think he ever got over her death. We had gone back to the UK to see his family and I noticed at the time she didn’t look well. Yes it was a very sad time. She was an amazing Morris Dancer and only 16 when she died.
One saving grace which kept me sane was back when we were in Hong kong the army encouraged married couples to go on holiday we were allowed a 1,000 mile radius from Hong Kong and they would pay the flights and most of the hotel bill. Whatever was left we had to pay. Wow it was a holiday of a lifetime, one which I will never forget. We chose to go to Thailand.
It was just amazing we did a two tier holiday, Bangkok for a week then Pattaya. It was breathtaking the scenery, the temples, the food, I remember Bangkok as being noisy and busy, and the taxis were little motorcycle put puts which choked the air with their exhaust fumes but you didn’t care as the excitement far outweighed any concerns you had for possible health issues.
Our holiday was good we had a lovely time, and well it almost felt normal, and Mike was actually happy and calm. I think the pressure of his job at times was too much for him. He was very hard on himself and others around him. Everything had to be his way and he expected only the best. I was not allowed to have faults, if I wrote to my family he would read the letter before it went and any spelling mistakes he would denote them with RED biro………… When he came home from work the house had to be spotless the toys put away the children quiet and ready for bed even at 6pm.
I remember even now to this day, Michael coming home from work and literally going ballistic because I had not cleaned the rubbish bin, it had been a long tiring day. BUT no excuses were allowed and he was quick to shout at me and cal me a lazy cow, as he poured himself his usual whiskey and sat waiting for his dinner. I was simply not allowed to have any failings.
This was so instilled into my brain that I am still sort of the same, I cant abide mess, everything has to be organised, perhaps in some bizarre way it did help me over the years, as I become a great Head Housekeeper at a hotel for several years and loved it, and I enjoy cleaning I find it quite relaxing, and when my brain is in a bad place if you know me and see a sparkly house you know that I am depressed or was.
Slowly overtime his verbal abuse turned me into a meek person, I became scared of him, as his demands were not only mental but physical too. The children especially our eldest had to be perfect. He told me once his step father made him tie his shoelaces at the age of 2 and if he didn’t do it right he would be punished.
Sadly this bullying by his step father defined who he was. Michael actually was a confused man, he had a turmoil of his own going on but over the years I took the brunt of it, and found myself protecting my family more and more until the day it drove me to do something I will never forgive myself for, he took away my dignity and sense of worth, and in desperation for my own sanity I nearly succeeded in ending my life. It was a hard period and I still feel guilty that I could be so thoughtless as to leave my two girls unprotected but at the time thousands of miles away from family support I could see no other way out of it. Lucky I was unsuccessful and I felt ashamed of myself for allowing him to become so much in charge of me.
I recovered with the help of support from a therapist and this was the time, I changed and took control of my life, and really stood up for myself.
The weird thing is after my stay in hospital I had to see this therapist, and my husband was forced to see one too. Now the guys office was on the 13th floor, so Michael told me he walked up to the 14th floor and walked down to his office as he didn’t want to be seen going in there. I wish really he had help when he was younger as he wasn’t a bad person not at all, he too was abused and this was the only example of a relationship he had. It’s true what they say.
It was an odd transition period as in a way we had switched as now I was the strong one and stood up for myself and the day he tried to bully me was the day he got a shock which stayed with him for the rest of our marriage. He learnt he had pushed me too far and nearly paid a price for that. I can’t say much suffice to say he saw just how red and angry he had made me and it scared him.
Things settled after that, and we were stationed back to the UK to Tidworth. We stayed with my parents until we got sorted. In that time I had to have emergency surgery as I had been suffering terrible pain for 2 years and it turned out to be a massive gallstone which had blocked my gallbladder I was only 26 tall and slim so was totally not expected to be that.
It left me very ill and I had to stay in ICU for a week. I never thought that I would get over it but well I did thankfully I always seemed to be able to bounce back quickly. A year later I had to have a total hysterectomy as they found my womb was full of endometriosis, and fibroids and some dodgy cells so out it all came. I was not long out of hospital before I went to work to pay off our credit card debt. I worked in the hospital laundry a horrible job and a tiring one, and still I had to look after the house as well and the 2 children I was about 27 at the time.
We stayed in Tidworth until Michael was discharged from the Army as he had enough basically. We arranged to go and stay with our friends Roy and Lesley up Wigan way until we found a house.
As Michael had managed to get a good job a mortgage was offered and we found our terrace 2 bedroom house, with garden. We moved into 121 Baker Street yes we did lol. Everytime I hear that song it reminds me of my life back then. 121 Baker Street, Poolstock, Wigan. https://youtu.be/Fo6aKnRnBxM
We had an amazing view in those days of the 2 Westward Cooling Towers. They never actually bothered us, we would go for walks around and they sort of just became part of your life. When you saw them after being away you knew you were close to home. They were home for beautiful wild orchids (which were protected).
We met some lovely friends there and I got work too.
I got a great job with Wigan county council as an outreach worker team leader (I had gone for the lower paid job but they were so impressed with me they offered me the lead). I was so proud of myself and ran a team of 3 people and our aim and objective was to move young people from education into Youth Training Schemes.
We did well; even this scheme called YTS was slagged off as using slave labour it wasn’t, not if done properly. The young people we moved into jobs were well supported and the small business that they were allocated too were under no illusions as to what was expected of them and how they had to treat the young people.
I had one girl who wanted to work with a mortician, yes you read that right, and I managed to find her a placement, and she was success story as after her period of training she stayed with the company who were very impressed with her. We had others too. I loved that job, and my training as a youth leader (I did a course whilst we were stationed in Tidworth and became a youth leader through Wiltshire County Council and ran a youth club then). This helped me a lot in the outreach Leaders job in Wigan.
Life was ok not perfect we had ups and downs more downs than ups, and my strength and resolved made it possible for me to finally decide that enough was enough. I think being offered such a good job made me wake up to the fact that there was little wrong with me, it was my husband who had the issues not me. I was finally waking up to the fact and my confidence was growing. Actually what made me decide was something Michael did to me. He had bought me a beautiful pedigree Afghan hound a male I called him Darak. I loved that dog. He was just stunning the kids loved him too.
Darak was only young and for some reason took a total dislike to anything that belonged to Michael and would destroy it, shoes, phone you name it if he left it out, the dog would chew it. I got home one day to take him for his walk, and he wasnt there. I found out that night that Michael had sold him to someone as he was fed up of the dog ruining his stuff. He never told me he was doing this, just did it. It broke my heart and I never forgave him, and as far as I was concerned that was the end of my marriage.
My parents came to see me and we talked and finally I got the strength to leave my husband. I had to for my own sanity and my children’s safety too.
We seperated after 11 years of marriage, I really did try to make it work, but since Michael left the Army his behaviour became more erratic, he drank way too much he did work hard no doubt about that, but my family had to come first. We agreed I would stay in the house, and he supported me with maintenance, and life kind of settled into a new routine.
Then I did something so stupid, I still can’t get my head around why I did it.
Life for me and the girls was good when he had left, I was working well, the bills were paid, then suddenly Michael started to come round more and would ask constantly if we could get back together, he missed us, he swore he would change. He told me had been offered a great new job with a company called Kalamazoo Business Systems, and had been offered a job in Kenya. He wanted us to start fresh and give our lives together another go.
Why oh why did I do it? I still cant work it out. I really was in a good place on my own and had been dating but I think part of me felt the children needed their father even though he wasnt the best dad he was thier father and seemed to have changed to them. Perhaps my leaving him had shook him up a bit. He did seem different much more calm.
Like a fool I agreed. We put the house on the market and moved to a temporary house in Staffordshire whilst Mike underwent training for his new job. Then before I knew it we were on a plane to Kenya to start our new life. In all this time, I have to say he was not the same, he was far more caring so perhaps I was lulled into a false sense of security.
We were allocated a lovely house with grounds, a live in gardener handyman called Vitas. The house or villa was lovely with lots of kennels and grounds so we got two labradors cream and black Penny and Tuppence, and my life settled into a routine. Girls were placed in school, we managed to find me an old banger to drive around in, i got involved with the local RSPCA and helped as a volunteer and even took in animals to recover, so yes life settled it was all ok really.
I loved Kenya the people were just amazing. I also got involved into the environmental issues of Kenya as well which even way back then was a worry, with trees being cut for charcoal leaving a lot of land barren with no protection so topsoil would fly away in the wind, making it hard for the plants to grow. We would visit villages and try to show them and teach them other ways to make cooking fires.
Yes it was a very interesting time in my life I have no regrets just sadness.
I never felt scared or unsafe, even when Mike had to go to Mombasa to work for a few days things were always good.
We lived there nearly a year. It took forever to sell our house in the UK and the upkeep of the mortgage was hard work and it was a relief to finally find out it was sold. It took the usual 3 months for contracts to exchange and complete.
Then my world came tumbling down…………….
The news finally came the house was sold what equity left was agreed to go into our joint bank account was about £3,000 lot of money in those days. Then well life just changed. Mike no longer was a tolerant man, but horrible. Just like that over night I swear. The children irritated him, I could not do a thing right. He made it as horrible as possible for me.
The catalyst came very quickly. It had been a difficult day I remember my eldest was playing up and I was tired as I had been on my own with the children and felt raw and beaten. I was at the end of my tether and I foolishly said to my daughter “you wait until your father gets home young lady!”
He came home and punished her, far too aggressively and I then realised he had not changed it was all for show, somehow to keep me close whilst the house was sold. Once the papers were signed I was no longer needed. I woke up to it and decided to protect myself and my family I had to leave. We discussed it and arrangements were made and within just a short time family contacted and with my girls arm and arm I left him never looking back. It was so hard to go back to UK I felt a failure a fool. I had been played. But it wasn’t until I got home I realised just how much.
I stayed with my sister and my father helped me find a place to live back then renting a place with children was pretty hard but he found me a lovely flat in Nailsworth (never even heard of it but it was a beautiful village), and I wasn’t too scared as I knew I had money from the sale of the house at least so I thought £1,500 a fortune to me.
I had a rude awakening when I did arrive back to the UK and checked the bank account as instead of the expected money from the sale of the house, there was only £80 in there. My father helped me to sort it out and it would appear somehow paperwork instructions were believed to have been sent to our solicitors which I had no knowledge of signing transferring all sales into another account which didn’t even have my name on it. When we managed to contact Michael about it he totally denied anything and being so far away with no reciprocations from Kenya there was nothing I could do about it.
I was penniless with no home, BUT the anger in me somehow kept me from going insane, and I became so strong just had to as my girls needed me I had to protect them. So with 80.00 we got some second hand furniture i can remember it now an old cottage suite some beds and bits and bobs and we started our new life and I managed to get benefits until I could find a job.
The girls soon got into a school and met friends, and my new life began. I never received another penny of my ex husband as he worked that well as you couldn’t force money out of Kenya. So for many years it was down to me, and this man got away with looking after his own family and then took on a new wife and a step daughter, having told me over and over again he didn’t want children. But he had needs and he needed someone to look after him, so he soon found another women and a step daughter.
I settled into Nailsworth and soon got a job. Using my secretarial skills I teamed up with a friend Julie who I had met and we opened our own secretarial services, both got jobs straight away, which turned into full time work. From that day I was never without work.
I worked in an estate agent, run a restaurant, no challenge was too hard for me, I started to heal, and eventually after a failed new relationship, we moved into Stroud, and I got more work, the girls met friends and had a lovely life.
I worked for a temp agency and did so many jobs, and attended courses, learnt Export documentation, ran offices, another estate agent, I never stopped, always working and honing my skills. The girls did well at school and with all my hard work I managed to get them a pony each, and they went off riding. Life was as good as it could be.
We moved a few times but I enjoyed those challenges. I realised men were well a waste of time, my children were more important to me. They became my reason for living, and though I know my life had dark days I also had good times too. Taking them off on holiday, riding with them, it was good. I did drink way too much at times, this was the aftermath of living with my husband, but overtime with help I managed to even sort that out for myself.
We moved again to Stonehouse, where I had a job where my new husband Mike worked (yes I know confusing), when the business did a dip I was made redundant, but never let it stop me, walking through the town one day I saw an advert for a community worker just the same job I had in Wigan all those years before, applied for it and got it. It also included running the local learning centre, but I also had to learn Microsoft Office and use a COMPUTER oh my goodness gone were the days of clack clack or electric typewriters, I had to use a Computer and learn to use the operating system.
I did it in 3 weeks, took every course and passed all the exams on Microsoft and ended up running the college, teaching the students, supporting them, then I got headhunted by the local college, and worked teaching adults in further education, which meant I had to attend night school and complete a teachers training certification which I am proud to say I passed both levels with flying colours. Nothing could stop me, I even become an NVQ assessor for Business Admin.
I had my my Mike and we were living together he was amazing so different. My eldest had left by then and was starting her own journey with her new husband.
Life was good finally.
Finally I had a life to be proud of, a man who loved me for me. My first husband had come back from Kenya and we had made friends again, I dont think its good to leave blackness in your heart it just consumes you, and I forgave. He had broken up with his second wife, and was trying to get back to being with the girls, but suddenly fate stopped that he died suddenly in his early fifties, at least he got to see our daughter Nicola married and he met his grandchildren, but well life wasn’t so good on him.
In the meantime, my life was always busy, I worked long hours, my new husband Mike and I bought our council house, he worked away a lot as an engineer, overall our life was good. I was head hunted again, and was running a city college flexible learning centres 11 satelite centres, 54 tutors, putting into place new examinations for I.T. such as ECDL, and IBT2, running community courses, teaching business admin, basic cooking in the community, I even did a course on how to survive the Millenium with a bunch of ladies which was a real hoot but it was fun to do.
Yes that was how I was before the picture was taken in 2000.
A beaten women, who rose from the ashes like the phoenix and worked hard to be who she became, a FIGHTER, a WARRIOR, I learnt that life isn’t like a box of chocolates, it’s hard work, it throws curveballs at you, and takes you through a maze of emotions, each time you think you have found the way out of the puzzle another issue takes its place.
You have to deal with it, find a way. Never harm another human being, we are all trying to survive the best way we can.
Everyone of us comes with baggage no one is perfect. Before you criticise someone for not doing something right ask yourself why is your way better?
I could have given up way back but I didn’t. Each knock back I learnt from it. I improved my life and hopefully the people around me, I loved all my students, and I worked hard.
I loved my family unconditionally, I even mourned the man who made me who I am now, as even though our lives were rocky I knew he had a bad life when he was brought up by a mean step father, always forgive it is not worth, losing family as we will always need them one day.
All that behind me, that day I was sat with my mike on that rock in Brazil all that is why I am writing this now 20 years on, after finally finding out I had progressive MS, lost my mother, and my beloved, all that before that day is why I am here now writing my story.
Without all the growing up and learning how to become a good person, I would not be here now to look back on a wonderful life.
A truly wonderful life, even with the black times, it has been a wonderful life, the saying life is what you make it is so very true.
Life is what you make it, your life is in your hands you can’t blame others for your failings, they are your failings, always when you look out the window instead of looking out on a bad day, see the beauty in what you are looking at. There is always beauty just in a flower, or birds eating off a bird table, the sky making strange shapes, so much good around us.
No dont blame your failings on anyone else. Improve yourself and own up to your own failings.
People look at me now and see an older women a disabled women using aids, a women who struggles to walk or sometimes even talk, I just want people to learn the story behind the disability, how I got here, how I manage. Who I was. I love my life and people. Yes I am disabled I got given the joker card and was given MS to deal with. My life before my MS defined how I would deal with it.
Always look at your strengths they will always be there when you need to draw on them when your having a bad day. I hope you enjoyed my story. It is all true as I remember it.
This is me Zenda Trim before and now, just the same person, but one perhaps a bit wiser now.
Life’s like a play: it’s not the length, but the excellence of the acting that matters.
Lucius Annaeus Seneca
Below some of my life and memories. I have had a good life and will always think of those moments as they matter.
I keep hearing this in my head no idea why but perhaps its my alter ego telling me to write my thoughts down……….
Christmas is coming, the goose is getting fat Please put a penny in the old man’s hat If you haven’t got a penny, a ha’penny will do If you haven’t got a ha’penny, then God bless you!
I wonder who wrote the lyrics to this nursery rhyme which has been handed down from generation to generation.
The words to me in my head remind me of when I was young and hearing this rythme I would feel excited as I knew soon I would be enjoying a wonderful traditional Christmas with my family.
Christmas is coming, its a festival of plenty but the words Please put a penny in the old man’s hat what does that mean or signify? Why would it be included in what is supposed to be a Nursery ryme announcing a time of joy, warmth, gifts, and family and friends who meet together to celebrate the date of Christs birth. Such a simple concept.
Please put a penny in the old mans hat – is it saying although its a time of joy and celebration never forget the more unfortunate of you and give to charity or donate to the less fortunate?
I think the meaning of this simple rhyme has been lost over time.
Let’s look at Christmas now in 2019. Sing the song and sit back and think about all your Christmases in the last five years. Were they Joyful? I can almost guarantee that some were not.
Christmas now well we are bombarded by advertisements – toys, chocolates, clothing, gifts of varying sizes and prices. You are virtually brain washed. Decorations are put up early, shops sell Christmas stuff from September.
Then you ask the children what would they like, and instead of simple things, you get a list full of electronic toys, games, laptops, ipads, tablets, T.V. and the list is endless.
You sit back overwhelmed by the demands of a very expensive Christmas list.
Stop and think why do you have to indulge in their wants? Who is forcing you to do this? Do you think your children will love you less if you just buy them one present?
Our lives are not our own anymore, we are programmed to follow the many who like lost sheep follow each other, we are pressurised by our children as they are pressurised by their friends to have all the latest gadjets.
Christmas is coming……..Instead of you feeling joyful of the festival to come, you feel instead DREAD. Your mind racing how to buy all these things, checking your credit cards and your bank balances, and wondering if you will have enough money left to even feed your family.
Why? why do we allow ourselves to be manipulated in this way, isnt it time to simply just say NO.
I remember a few years ago a young man who run his own business he worked really hard and having a new relationship it came with two children both females. At Christmas he asked what they would like and they both insisted they had the latest phone, which I believe at the time was £250, each. He had no way of paying for it without working long hours.
My advice to him was say NO, sorry but you simply cannot afford it, but alas he never listened and purchased the gifts. If he had said NO what really would have happened? We need to take back control of our families. We need to make a stand. Christmas is not Joyous for many anymore. Its stressful and it causes friction in families and debt in many.
Christmas is coming……..spare a thought for the homeless, the people who have nothing, the children starving in Africa. Maybe we need to teach our young that we just can’t do it. Its not because we love them less its just because if we do it for that one time, it means for months they will have to do without other things.
I loved Christmas when I was a child. The memory of going to evening mass, with my family and when it was over coming home and my father would always make us ham and poached eggs, then we would go to bed.
We knew if we didn’t sleep Santa would never come, so we forced ourselves to sleep.
My father would tip toe through the house, with his RAF blue long knee socks full of things for us to enjoy in the morning. Our stocking would be full of a tangerine, nuts, a toy and I remember like a mule thing which you pushed underneath and it would fall over. We would spend ages with our stockings, such simple things, but to me the best.
Then when we got up we knew we were in for a treat as there would be sheets of pasta drying on our parents bed and we would be imbibing on home made lasagne as a starter to our Christmas meal baked by our mother an expert coming from Italy. The smells were soooo good. Everything home made, home made cake, pudding, biscuits, mince pies.
Our presents would be under the tree, we got one or two each, I remember a dolly I got one year gosh I loved that doll.
Our Christmas lunch was just amazing. There were four children for several years until the other two were born and added.
Oh yes mustn’t forget the Christmas crackers which were treasured whatever was in them always a surprise. Sometimes the cracker would not explode when it was pulled between us, so we would take turns in snapping it to make the noise. First we took it in turns to read the silly motto which came with the cracker the silly joke and laugh and giggle or groan at some, then we would play with spinning tops, jumping jacks or magnifying glasses like they were the most expensive gifts in the world. Oh and of course wear our paper hats.
Some funnies to have a giggle.
What school subject are snakes best at? Hisstory What do you call a crazy golfer? A Crack put
What lies at the bottom of the sea and shivers? A nervous wreck
What do vampires sing on new Year’s Eve? Auld Fang Syne.
What’s the fastest thing in water? A motor Pike
We would sit for hours eating and laughing and enjoying each others company. The Christmas pudding would arrive and we would hope that one of us would get the prize the three-penny piece wrapped in silver foil. The person who got it would let out a huge WHOOP of joy as back in the day threepence would buy you plenty. Even louder when it changed from the traditional three-penny piece to a silver sixpence.
Once the meal was over we would all pitch in clearing up, dad would have a snooze and we would probably end up playing board games until it was time for tea. The tea would consist of home made Christmas cakes and turkey sandwiches and home made trifle….my mouth is watering just typing this.
By the time it was bed time we would be stuffed and exhausted but replete and happy. The next day was Boxing day another lovely day to enjoy family time together, and a splendid cold meats buffet accompanied with home made chutneys. We would play with our toys, and just chat and have fun. It was always about fun and love and warmth.
Christmas for us was never about the presents. Yes having a present was obviously exciting but the festival itself with all the traditions was what really I felt the most exciting thing.
I stopped enjoying Christmas some time ago now, I don’t consider myself a Grinch not at all as I have always been giving. To me it doesn’t feel the same anymore. It appears to be more about what is given then what is enjoyed.
You can enjoy your time at Christmas just being together as a family, enjoying a meal which did not cost the earth, and a few presents which mean something to the person receiving. Why does it have to be all about expensive presents, and spending a fortune on so much food, there is simply no way it will all be eaten in the two days. The waste bin sadly swallowing more then the humans.
Sit back and just think, do I need all this food? Why do you need so much. The money you save on food could go into the old mans hat…….. instead of the black rubbish bin.
I have known people to buy a goose, turkey, duck, chicken, ham and beef and salmon just for two days. Is it really important to have so much, think of all the animals that have had to be slaughtered to put on a Christmas meal with that much meat.
Christmas is coming………… Enjoy it without the stress the debt and just have fun with your families. Christmas is not about how much we give or spend but about the joy of family. Just being with each other remember life is tenuous and whilst we are stressing over all this money we can loose a loved one so easily. It means nothing Christmas not really, not anymore but our families mean something, and we should just enjoy them and perhaps start a new tradition of less giving of material things, and more giving of ourselves.
This was the best Christmas my husband and I enjoyed together it was an Australian themed Christmas. My brother lives over there and I wanted to share Christmas in some way with him, so we did a bar b q and wore hats, and had kangaroos about the place, and of course Fosters beer it was the best ever. Even though it had snowed. It is a Christmas I will always cherish with my Mike. One to remember.
Have a lovely Christmas with your friends and family, and spare a thought for the old mans hat…………………………………god bless.
In the United Kingdom if you are deemed disabled you can apply for several benefits. One is called PIP which stands for Personal Independence Payment. Before this we had a simpler system called Disability Living Allowance. If you qualified for enhanced rate you could choose to take the money monthly OR use it to get a mobility car which is sort of hire purchase for life. The car choices were many and varied including WAV vehicles (Wheelchair Access), and many people took this option to make their lives easier and yes to get to work.
The other is a Blue Badge, which enables you to park close to shops and if you have one it is easier to get your wheelchair out of the car, because the designated spaces are wider.
All sounds good doesn’t it? How caring are our Governments to have these schemes in place.
So how does one apply for these benefits. Well you contact the Department of Work & Pensions on 0800 917 2222. You have to answer questions which takes about 20 minutes to ascertain if you even qualify for PIP. If you are then you are sent the massive and huge booklet that you have to actually fill in. Now anyone who is disabled will take one look and think your joking right no chance. Myself included having PPMS my brain is useless. I was lucky as I could ask for help from Aged UK (yes being old has its advantages). A lovely lady came and helped me fill in this huge form who I found out came from the DWP.
You can ask for help from Citizen Advice and if your really stuck a member of the DWP can again come and help you.
Now surely, if you have been diagnosed by a specialist why do you have to be put through all the stress of applying for this benefit? Would it not be easier all round if there was a score scheme. Well there is but obviously no one seems to be aware of it which was designed for MS. It’s called the EDSS Score.
Now this is useful, surely it could be adapted to include disabilities as a general rule? If someone was given a score by a specialist then the form could be massively reduced saving a few trees, and personal sanity. You could simply supply your score which would be certified by a specialist. Thus saving huge time and effort on the behalf of the person applying.
Obviously you would be asked how does your disability affect you alongside. But the scheme at the moment is you get points for mobility and care. The higher the points the more chance of getting the higher rates. Some illness are varied in their disability. One day you can feel fine, then the next day you can barely walk so it is very difficult for people to fill the forms in as on that day they may be having one of their better days.
IF you are diagnosed with a life changing illness like MS for example its progressive and there are NO CURES. Yes there are for RRMS disease modifying drugs, but these only slow down progression to a certain extent. With Primary Progressive MS, although there is a new drug which could benefit some people now, it is not guaranteed as a cure, only to reduce the progressive deterioration of the disease.
The scheme at the moment is so hard to get. Many people who were awarded a high rate say on the old scheme DLA, now do not actually match on the new scheme PIP. How can things be so wrong? This leaves many applicants in financial hardship.
Now if you don’t get high rate mobility you could lose your money and your car and a lot of people have relied on the car to get to work or even have some sort of life.
So If they did not score on the high mobility then they would lose this benefit and their car. It’s a bit rough isn’t it? It has left many applications in a severe financial and emotional mess and yes suicidal I have heard that “cry” worriedly on forums, where people are so wound up and upset about being put through this tortuous process they talk about ending it all WHAT’S THE POINT, you hear its damn well upsetting.
Why are they making it so hard? Because the first scheme DLA was so abused. (So it was thought).
AGAIN the genuine are PENALISED because of the ABUSERS to the system. Genuine people are being criminalised. Made out to feel like they are acting in a fraudulent way.
If people didn’t scam or abuse our systems we would all be stress free. It makes me so mad that the few ruin it for the many. If you are genuinely disabled with a need why the hell should we have to jump hoops? It’s hard enough being disabled without adding on top the stress of applying for a benefit which is meant to help us have a better life.
It’s like the Powers that be are doing us a huge favour. There is a sting in the tail. For example if you have worked or have savings and you are awarded the higher rate in care say for PIP they will use that if you apply for government funded care package.
Now if you haven’t worked and have no savings you get it free. Rough justice why work in the first place!
Most of us working or have worked, maybe have some savings get given PIP. I qualified for ENHANCED IN CARE.
DO I benefit?
I have worked since I was 14 only time I did not work was when I brought up my two daughters, but went back to work. I get a full pension with a little bit from my husbands.
Before I qualified I had government help for my care and was able to hire a care worker for 10 hours a week which was so useful. It enabled me to get out more, go to see my mother in Bristol, and I had help with my personal grooming and bathing.
Because of circumstances I had to sell my house which means I have savings. So now I do not qualify for this 10 hours it would mean paying out £520 a month towards my care. As I was unable to find a suitable home now I rent a small flat so including the rent for this and the care that I would have to pay my monthly outgoings before I ate would be £990 a month more then my pension.
I cannot afford to pay for 10 hours care now without seriously dipping into my savings which I want to use if I can find a house to buy, so I have reduced it drastically and now suffering the consequences as I rarely go out, (my emotional and mental health has been compromised), and I don’t have that person there that I knew I could rely on to support me on my down days. Yes I have family who can take me out BUT they are not trained to deal with someone with disability. Its not that simple, you ask someone to take you to an appointment you have to use your wheelchair, oh well thats easy enough……….. WRONG it couldn’t be further from the truth.
If your not used to dealing with someone in a wheelchair you can make that little journey out; exhausting and painful. I know I have been there. With all the best intentions and kindness experience is definitely best. My care worker was great with helping me bathe and keep clean and wash my hair.
MANY people who get PIP use it to make their lives easier. some save and buy scooters, or wheelchairs, others to go to gym or swimming etc.
I doubt many are going off on holiday with it and lying on a beach somewhere smoking fat cigars and drinking champagne.
we are penalised over and over again for being DISABLED. there are more and more people becoming disabled, and need help.
I WOULD swap in a heartbeat if I didn’t. believe me.
IF someone is diagnosed with a life changing incurable disease, then why the hell do we have to beg for money? No its not our right to have this benefit, but it is there to help us to have a better life so if the government offer it, why make it so totally impossible to achieve getting it? It’s like being tested to see how determined we are….like going on an Army assault course and the ones who get to the end are rewarded the ones who fail are chucked on the scrap heap. That’s how it feels to me.
Now people with MENTAL HEALTH can apply for the new PIP which I actually think is really good. Having said that what about our mental health? The mental health of people who apply for PIP and are left bereft because of the complexity of the system, they loose their money, their cars, their dignity and some are so distressed over all this sadly they lose the will to live. Yes you can appeal a decision by going for a Mandatory consideration……….but that in itself is stressful and can take months to achieve.
The next obstacle to making our lives easier is to apply for a Blue Badge. IF you are lucky to get awarded the enhanced rate in PIP, you have more chance of getting a blue badge but its not a GIVEN. You still have to fill in forms and some have to still have an assessment. AGAIN because the blue badge scheme is and was abused………….
The Blue Badge.
The blue badge scheme is to enable disabled people or with limited mobility an ease to park and not have to walk too far.
My husband was diagnosed with END STAGE COPD. He was sadly deteriorating and did struggle to walk far, not with his mobility but with lack of breath. He struggled to walk from the car park to the shop door so I persuaded him to apply apply for one.
The assessment nearly put him in hospital! My husband explained to the assessor at the time of the assessment that he really struggled with his breath and found it hard to walk very far. Having said that, the assessor decided to see if he was actually telling the truth (even though he had back up paperwork from his doctor) and they made him walk way above his capabilities and got a shock when he had to sit on the pavement to catch his breath. He did get his badge but was made to feel like a criminal in doing so. He was quite upset when he came home and took several days to recover. I know he said he wished he had not bothered, but he did get his badge, and it did help him before he passed away.
I think the system is cruel, and discriminatory.
and against our human rights i.e.
the right to an adequate standard of living
the right to the highest possible standard of physical and mental health
Maybe we should start marching to parliament in our wheelchairs and scooters?
I just dont understand how some people get PIP and others dont. WHY SOME assessment centres are brilliant and yet other people get zero points.
OK taking a slight diversion here as this is another pet hate of mine.
Regarding parking say at large supermarkets. Where I live there are more TODDLER AND MOTHER places then DISABLED. Do these people have to jump hoops, prove they have kids and a need for these spaces NO. BUT WE DO. They could simply borrow someone’s child and buggy so they can park close yes some people are that lazy. Yet genuine disabled people are put through hell and back to get the same spaces allocated them. Just different images on the parking spot.
I remember one day some moons back my care worker took me shopping to Tesco and there were no disabled parking spots, so she parked in a toddler and child space as they were virtually all EMPTY. Before we could get my wheelchair out, a guy came and told us to move! We were not allowed to park there. I mean yet people quite often feel it is ok to use the disabled parking places to quickly run in to the shop to get their fags or beer lol. Or block off the disabled spots with poor parking as they cannot park anywhere else so well lets just block the disabled off they are not important. RIGHT? Stand up all those of you that this has happened too where you have gone shopping and someone has used the spaces available and you can’t get parked and desperate for a wee? Been there done that and thank god for ladies incontinence pads is all I can say.
The solution is so easy. If your disabled you register and are given a disability score and this should be used in all applications for help. Still I suppose being simple is way to hard for any government. They have to make everything so hard to apply for. Its like they think by doing so people will give up and sadly some do.
Having a blue badge. Does it suddenly mean we are RICH and able to make a huge killing on the stock market? NO it just means that when we have to go out say for an appointment at the doctors/specialist or even to feed ourselves we can do so in comfort and less pain as we don’t have to walk so far. To be honest one of the reasons I rarely go out is not being able to find a space available, and having the person caring for me at that time struggling to get a wheelchair out and then negotiating it to the shop door, or its raining so we have further for us to get wet!
WE should never have to beg for help. Its a bit of money to make our lives more independent, isn’t that what PIP is about our INDEPENDENCE? Surely if it helps someone with a car and they can get to work or extra money to feed themselves healthier, then perhaps they will feel well enough to go back to work. Isn’t it or couldn’t it be a WIN WIN situation?
SORRY fed up of being disabled, fed up of begging for lifts, fed up of struggling everyday to even want to get up and fed up of feeling like a criminal. Also upset for my friends that I have met on the Internet who are constantly stressed over having to reapply for benefits and becoming so stressed over it all they are literally making themselves more sick.
Still I have my memories of good times before becoming disabled. The pictures below show some of my life before and after becoming sick.
BUT you know what I wouldn’t change it for the world, as all the great memories I have of my life with my husband helps me through the dark times of pain. I have done more in my lifetime then many people could dream of.
I just want the system to change to make it easier for the disabled to have better and healthier lives, not to make them feel like criminals, but make them feel supported and needed even with disabilities, we have a right to a life, and respect just like anyone else.
God decided to make us his soldiers. I am tired of being tough, but still not too tired to worry about my friends who have to face such awful challenges in their lives, and are left to feel let down. Remember no one wants to be disabled……………it can happen to anyone at anytime in a nanosecond. So come on the powers that be listen to us, make it easier for us, RESPECT us, help us, don’t criminalise us……………..please.
Please feel free to share your own experiences, good or bad.
Lately I have felt lost and alone even with people around me. My pain of my MS seems to have magnified and suddenly I have found myself struggling to cope. I lay at night wondering how will I manage to get through another day of this nerve pain, and yes pain in my heart due to still grieving for my husband.
Nearly two years on will be on the 3rd October, still my heart aches for his loss and also the pain of my MS instead of sitting quietly in the background has suddenly become much more noticeable. Its very hard finding things to do now to turn the volume down, and I have found myself musing over the fact that what on earth am I making all this effort for? Really having had a wonderful life 30 years of it more or less with my husband at 68 what was left for me?
I am feeling so sorry for myself, many people out there are far worse off then I am. I could make more effort but being ill for so long its hard to break the habit. If my hubby was still alive at least I would have someone with me to share my worries and pain, but being on my own now its difficult as I dont want to burden my family with my moaning all the time. Stupidly in a low point in my life more through grief my monkey chatter persuaded me to leave my home of 28 years and move into a more secure place to be safe. I felt by doing so it would take the stress off my family for worrying about me, as being in a large 3 bedroom house with lots of rooms and a huge garden there were plenty of traps for me, to hurt myself.
So the house went on the market and I moved into my tiny sheltered/Independent living flat. I do have access to outside a bit of garden and my flat is located on ground floor and now no flat next to me on the left, so really I have autonomy to more or less do what I want with regard to making the patch my area.
I have hand rails outside and they are covered in solar lights, my little area just twinkles at night with lots of solar lights, my aim was to make it look like a happy place. The bird feeding table went up but wasnt sure that being so close to my flat there would be any visitors.
Depression can come in many forms. It snucks up on you, and before you know it your immersed in it’s confines the voices in your head (I call my monkey chatter), who persuade you that your doing badly, you need to get a grip, everything it tells you is negative. If you listen hard enough it makes sense, and then your confidence starts to dwindle, your self doubt increases, and your feeling of despair becomes all you can feel.
I woke up one morning and thought if I was going to survive this new chapter in my life change had to happen but how? Walking is hard work, going out on my own is scary even on a scooter, because you worry that the tool you rely on will break down and you will be stuck.
Everytime I want to go out I have to ask someone to take me. That in itself makes me feel useless. “A trip to the garden centre is offered, they do not realise by offering me this it is just another reminder that I cant do my garden anymore, and have to rely on people. Looking at all the lovely plants where can I put them? I love flowers and plants, my home before was full of things, trees are my favorite, fruit trees. I love ornaments for the garden now my little space is full of them.
Come on I will take you for lunch!”. It’s not because no one asks me but lunch ugh!. It hurts to sit for very long and at the moment I am cursed with the worse flatulence anyone can face. Having MS its screwed with my bowels and my bladder and two things I can rely on is the need NOT to go to toilet so wind builds up, and needing to constantly pee so when I do go out I have to make sure there is a toilet accessible. So once I have eaten my lunch the lower bowel decides to let rip, obviously being a lady lol, I have to hold it and this in turn gives me stomach ache.
Recently in my area in lovely Cotswolds the farmers were spraying their fields with liquid manure for the years planting and the aroma outside was to say the least a slight pungent lol. I could easily stand outside then I let rip and just blame it on them as believe me I could hold my own with the smell of my manure lol. I reckon if you could actually bottle it I would be able to light up my flat ha ha. Warning handle with care danger of explosion! So you can see the conundrum I face going out is embarrassing for me there is only so much wind you can hold back without an atomic bomb going off!
Several years ago now having a reaction in my gums my teeth started to fall out. It was thought this was down to an overactive immune system. I had a few left and decided to have them removed. My rationale was to wear dentures, well I was a pensioner so done well to have kept my gnashers for so long. WRONG, I could not get on with them. After only a month my mouth shrunk and my new shiny teeth fell out. I found it really difficult to chew with them in, so Mike just said don’t bother Zen, I never notice anyway and to be honest you don’t look right wearing them. So for several years now I have not felt the need. So again going out for lunch is embarrassing for me, as it takes me so long to eat safely.
I would rather eat in my own space and not feel embarrassed or a fool. So its down to me really like I said family have asked.
So where was I oh yes, once more I was feeling pretty low, the pain was on a scale 10. Just imagine your body on fire. Literally. Every part of you burning. Its horrible and makes me feel sick. Every nerve in my body is alive and active. This is worse when it’s warm or I am tired.
It was another morning of feeling despair and pain it was time to get up. Getting up out of bed and slowly stumbling to the back patio door to let the dog out, my mind sluggish thinking what will today bring, I open the blinds (I have a snazzy electric blind you just press a remote and it slowly comes up to reveal the outside. Lucy anxiously and excitedly pressing her nose to the window, “come on mum I need a pee”, finally blinds up and curtains opened to reveal outside. There on the grass eating like there was no tomorrow was a little hedgehog. I was so excited didn’t want to make too much noise as it might scare it off. It was way too intent on snuffling up food probably bird food to even notice me.
I had no choice but to let lucy out, so sternly I asked her to calm and she did and then she was out the door crossing her legs, and went off to relieve herself. The hog never noticed and carried on.
I had totally forgotten I was tired, in pain with burning as I watched with my face against the window this little creature enjoying its repast of food. Suddenly I shook myself and grabbed my camera and managed to get a few photos. By then lucy was back. The cat had also gone out and came back in with Lucy.
I was shocked for minutes my body was ignored and I felt so much better. Could the simplest thing like a prickly round hog have changed my mindset so easily?
Once I was up fully I went hunting on Amazon armed only with a mouse I typed in hedgehog food, and found a lot of stuff good things he could eat as I didnt want him eating bird food. Next day delivery, lots of food with fly larvae, CLICK and DELIVER it arrived in 24 hours.
So the next day came, the blinds went up and guess who was there yes my little hog. I was so excited to see him again. I took more photos and a video, and Lucy good girl that she is just ignored it. My mind racing concentrating on holding a camera still leaning against the window to stop hand shake, again I actually forgot about my pain. Snuffle snuffle chomp chomp that hog could eat i had given him some dried cat food which it was obviously enjoying. https://youtu.be/JEy-GTiQ2Hg?t=23
Later the next day the hog food arrived so I now had his hedgehog food, and he was there again. More videos, more JOY, it was a lovely morning too. Lucy had come in and so had the cat and I suddenly heard a really odd bird making such a racket. Never heard that before. Then to my right I caught a movement in a tree and there suddenly was a WOODPECKER, omg I was so excited. I managed to get a small video of it it was a green woodpecker. https://youtu.be/b7arQgVLZ40?t=4
I had never seen a woodpecker even in my other very large garden where I used to live. I could just see it on the side of the tree, and managed shakily to get some sort of video proof. Since that day I have seen him several times, he will fly in low suss out the territory if its safe he hops onto the side of the tree, if not he flies into the large bushes by the side of my flat. I always have pigeons they eat like feathered pigs and constantly hog the bird food. I also have a pair of collared doves. So delicate and pretty birds. https://youtu.be/dxmfLGUUOQ8?t=4
Sorry video of woodpecker was very short.
One day feeling low again I looked out of the window and there were new birds on the feeder. I had never seen them before. They were tiny with long tails. I held my breath in fear of scaring them off, but they stayed there for at least five minutes and I managed to get a photo of them. There must have been at least 5 or 6 all different sizes. Again intent on watching them, my pain dissolved into the background.
I had taken a good photo of one of them and was quite pleased and was able to identify them as Long Tailed Tits, there was a family of them. I read that they always fly in families. They visited me several days. I am hoping they will come back next year too. It was so exciting to see them, I nearly called out to my Mike as we used to watch the birds in our garden when he was alive. He would have been over the moon at this visit. He loved birds, and nature and was one of the kindest people I know. Not being able to share this made me feel sad and depressed. It has a two edged sword.
On the one hand excitement to see such lovely little birds I had never seen before then the realisation that the one person I would have loved to have shared it with was no longer with me.
Since the first day of my hog visit, every morning when I get up and open the blinds I am anxiously waiting hoping to see my hog or even some new bird life. I did take one video of the hog and then in my peripheral vision I saw above a balloon flying overhead which made my day even more exciting. (On the video above).
So what did I learn about all this? I have learnt truly that the simplest of things can be better then any drugs, the simplest of things can make the pain disappear, the simplest of things can lift your spirits, if you look for them they are there. I had stopped looking too intent on wallowing in my own misery to realise that outside my safe cocoon there was still life going on, new families being made, little creatures working hard to survive, everyone of them was busy busy busy, not only giving me happiness but a reason to carry on.
I have bought my hog a house and its tucked under the big bush, although I havent seen him outside he has been seen and when yesterday I checked his house the entrance the leaves had been flattened down, so something had been in there. I truly hope he uses it to hibernate as he will be safe. We are loosing so much of our wildlife now, destroying hedgerows, using poison to kill slugs, and with the weather being so hot they are thirsty.
Take time to leave water out for the birds and the other little animals and if you can afford it, feed the birds. Its been such a rotten year in the United Kingdom very dry and hot and birds and wildlife are thirsty and hungry as for example the slugs the hogs eat have dried up with the heat and this has meant their food source is a lot more limited so they are coming out more in the day searching for food, as they need to pile on the pounds for their hibernation in the winter.
Just look out of your window and watch all the life going on out there when you feel down and sad, it will give you a boost.
If we practice hard enough, we can become thoroughly interested in even the simplest things of daily life, the way a child would. The smallest things would become so meaningful, they might even be worth a few words or a photograph, whatever method you use to capture them.
Sometimes I wonder what is Multiple Sclerosis? Is it just a figment of someones imagination or a trick by a sick and invisible entity. I mean really how can you be sat quietly at home just chilling out and suddenly for no explicable reason you have a tarantula walking across your forehead! No really that’s what it feels like.
I wont put up an image as I know some people have phobias over spiders. I can remember clearly trying not to panic as I assumed a spider had crawled onto my face, so carefully without panic got up and slowly scared out of mind and hanging onto my hand rails for dear life, walked to the mirror located in my hallway. Expecting to see this long haired creature on my forehead instead of which there was NOTHING! I could still feel it walking across my forehead. Jeez I must have been going insane or something. It was a horrible sensation. Quickly I washed my face, and the sensation did go away. It was warm I remember that.
This was a madness and period of my life when I suddenly was invaded by ants, and nits in my hair, and fleas running across my face. I got more exercise going to the mirror to see all these crawly things but never found one.
Invisible nits which made you scratch your scalp raw. Boy that Joker card was aving a larf with me. What else was he going to chuck at me.
I did have a giggle though when I found out what this sensation is called. Formication, my brain being my brain immediately went to the naughty step lol, but basically it’s a type of paresthesia. Paresthesia happen when you feel sensations on your skin that don’t have a physical cause. Paresthesia can take many forms. These can include burning, tingling, or numbness. With formication, you might also describe the “crawling” sensation as feeling like “pins and needles.” Formication is also called a tactile hallucination. This means that you’re feeling a sensation that has no physical cause.
Oh yes also Withdrawal from alcohol or drug use can also trigger formication
So knowing what it was and it had a name kind of mind it easier to cope with but at one point I was totally paranoid thinking my house was infested with little crawlie things. Eek.
Another wonderful sensation was the biting bee. I was actually in the garden with my chickens when I suddenly felt a bee or wasp sting me really hard, jeez it made me jump out of my skin and my husband came into view just as I was screaming in pain, crying “omg omg omg” I have been stung by something, as I hastily started to drag my trousers off myself trying not to fall over to find the offending perpetrator of my body. Mike came rushing up to me to help, and between us we managed to get my trousers off but nothing fell out onto the floor and there wasn’t a mark on my leg where I felt the bite.
No way how could that be? (bee get it lol).
This was getting ridiculous now. I was really being dealt the Joker card, what was going to come next I wonder.
Have you ever stood say in the kitchen and feel someone is looking at you from behind? You just have that feeling that there is someone there and kind of hold your breath because your scared to death to turn around, then suddenly you actually feel someone push you? Now it was either a spirit and I can assure you it wasn’t an alcoholic one or it was another weird symptom perhaps some sort of spasm, but I swear to god I had been pushed although I never actually moved.
Ah the joys of MS.
A new one for me was trickling cold water down the back of my legs. Yep this is true. I again would be minding my own business and going about my day probably just musing about life or something similar when suddenly the back of my legs would actually feel wet and I could without doubt feel what was like water or wet going down my leg. Well for someone with a disability I could sure move when the needs must and lucky for me I was stood very close to our downstairs toilet. Making a Beeline for that as I assumed without realising it and with some horror at myself had peed. Expecting to see urine soaked underwear and the back of my trousers wet there was NOTHING. Nope all dry and nicely groomed where I left it all in the morning after I had my shower.
Now this only really happened a few times and it was earlier on in my journey. I did read about a disease that is mistaken for MS or vice versus called Arachnoiditis, but for me I feel as that is caused through nerve problems in the spine perhaps this had caused it for me. I belong to MS groups and have read others who have also experienced this with MS. If it had happened more often then perhaps I would have been worried, but I did mention it to my neurologist and he just looked at me and smiled and with a reassuring pat on my hand told me it was all down to my illness.
Weirdly enough one of the first symptoms that presented itself to me at the beginning was the strange sensation of wearing wellie boots running through a frozen field with a hole in your wellie, and freezing water making your toes feel like they had frostbite. Now that was a great one and I was convinced if I looked at my toes they would be encased in ice lol.
I did mention these things to my neurologist who said they were all forms of parenthesis.
To be honest writing this down I am feeling like some sort of nut job lol. I mean how can all these weird things happen to me or do they happen to others too. I don’t remember playing a game of cards or actually being handed the Joker card, but somehow somewhere I must have really ticked someone off, as even though these symptoms were not in themselves serious they were driving me mad.
I know I am not the only one who suffers with all these things and thankfully that is kind of comforting to know.
One of the worse ones I had though was the pain in the front of my shin. Usually my weirdo symptoms exhaust themselves very quickly and disappear as mysteriously as they came, but the shin pain was horrific. I remember at the time pushing myself to walk more with my dog. This was early onset. When I got home and was just resting on my recliner the pain started. I swear to god that someone an invisible entity had stabbed me in the front of my shin with a large knife. The pain was so intense I grabbed hold of my shin and shouted out and nearly scared mike to death. Now this pain lasted days so bad was it I really had to see my GP. As usual I got THAT LOOK, and yes you guessed it well it was down to whatever was going on with me at the time. I was told to take paracetamol and rest.
Thanks doc, so I did, and roughly 2 weeks later it finally had gone, just like it came.
Oh dear the bee is back. Yep I must have wished it on myself. At the moment living in my little sheltered flat I am trying to make an area outside which makes it more homely or like the home I left. On one side is a border which was so neglected. I had asked if I could maintain it, and was granted permission, so all the old overgrown plants which were so neglected were removed by my gardener, and the ground was given a good feeding. I decided to turn it into a little bee garden by having planted only plants that would encourage bees. Within 2 weeks I saw my first bee and was quite excited I know right I live such an exciting life. But there was the little bee, flitting away busy from Borage to flowering Thyme, gathering pollen to make the honey.
Since then I have had more and more arrive and I believe its like one is the scout who goes back to a hive and communicates that there is a bounty to be had follow me boys …………
Ah where was I oh yes, the bees starting to come to my area and I love watching them always so busy. Then just a few days ago the biting came back. Sting, sting sting……….. on my knee of all places really bad. I did lift my trouser leg up but in my heart I knew it was just an hallucination another Joker card, like he was saying “you want bees………….well your going to get bees”! There they were like magic back on my leg biting me.
Fleetingly in my brain I wandered is it true you get what you wish for? I am not scared of it now though, and just ride it through until it decides to try something new the last attack was yesterday after being at the neurologist and the heat was exhausting, so I wonder what will be on the cards today…………………..!
If you’re reading this with MS and suffer similar please share as we are not alone.
I am disabled right, according to The Expanded Disability Status Scale (EDSS). The EDSS scale ranges from 0 to 10 in 0.5 unit increments that represent higher levels of disability. Scoring is based on an examination by member of the medical team or whoever is dealing with your disability. https://www.mstrust.org.uk/a-z/expanded-disability-status-scale-edss
I believe at the moment my scale is 6.5 and I am aiming to stay there as long as I can.
6.5 Requires two walking aids – pair of canes, crutches, etc. – to walk about 20m without resting. I use a rollator for me is the same as two canes.
I want to live as good a life as I can. I bought myself an electric wheelchair and my friend would take me out in the car and we would go off shopping. I remember one particular day we were in a famous store to look at some clothing. In minutes i was totally tangled up as the rows of clothing were not wide enough for me to negotiate through the aisles. It was really frustrating for me. So we went to another shop and similar happened.
I was beginning to think i would never be able to buy anything, and really sadly that is why i confine myself to the house and buy online as it is so much easier, but it does limit my life and isolates me even more.
Oh then the supermarket smack bang in the middle will be a load of metal baskets which stops you again from moving around them. I mean really.
Ok so off I go for jolly jaunt around town. There is a pavement with a canter lever which slopes right downwards and you have to take you life in your own hands to negotiate it. Not only that it also has Blister tactile squares, for the blind, and this makes it even harder in a wheelchair or scooter. I have nearly come foul with this bit of pavement and ended up in the road, lucky for me there was no cars turning right or left into it.
Ah then you get to the shops and you want to go into them even the bank on the corner before it closed had no ramp for me to get in so i was excluded from going in there so ended up once again relying on the Internet to do my banking.
Even in 2019 shops are ignoring the rights of disabled people who have to use tools such as rollators, wheelchairs and scooters. It is hard enough being disabled but why should we not be able to go into shops easily. Many never provide you with wheelchairs which would help a lot.
Then I thought to myself i really would like a new scooter one with a cover over it so when it rains i can still get out and about. So I did a lot of research, and found one a really nice scooter with a canopy which can be moved back and stored behind your seat, and if it rains, you can simply un-pin it and cover yourself (Scooterpac)
Sounds so easy doesn’t it. Like having a convertible and taking the top down or over yourself.
You can choose to have the cover on or off. The scooterpac is a great invention to be honest, as the idea is it can be stored behind your seat then when it rains you simply pull it back over yourself.
So when you watch a video of it well it looks pretty darn good and easy.
So they use a young women on the video I watched, she made it look all so easy, and I suppose to be fair if your not weak on the upper part of your body it really would be.
The first thing you have to do is take the cover off the scooter pac which was exhausting as it was very tight. It’s there for protection and to keep the actual top tidy and secure.
Now why oh why oh why do they not use a DISABLED PERSON to show the demo? I mean seriously. I was stuck and it was exhausting as i had to pull this canopy over and it was high and my arms were tired and exhausted. To fold it back away did not work for me as the person who had fitted it put the sides on the wrong way. Once that was sorted(I had to get the scooter company out as no one could do it not even healthy people) trying to fold the sides and secure them to the back was really difficult for me. Oh and having to put the cover back over the top cover of the scooterpac was a nightmare really hard to do. Very tight and I ended up getting my young lad who was decorating my flat at the time to do it, and honestly he will confirm even he had a struggle with it.
If your not too disabled the Scooterpac is a really great idea. I would have loved it but trying to put it away was just too hard for me. A really great idea i would highly recommend it, but if your very disabled you would be better with a cover that stays on.
So well now I had my scooter sorted it was time to go out into town. I was excited but then I hit the first obstacle?
Getting out of the park where I live.
Both ends of the park you have to negotiate one of these.
The shape says it all, my bottom can pass but the top of me has no chance. The large gate is locked also only for council.
Let me rewind. I need to go down into the local park to take the dog for her walk, and before I changed my scooter for a bigger more reliable one, I could go into town even by negotiating the above bollards. But the access to the park even that is a chore as there are two sets of gates. The last gate is a nightmare as its tall and you have to find a way to stand a bit to open it then of course it opens INWARDS not outwards (I mean really who designed these gates for disabled living quarters). They obviously didn’t have a clue. Now I have my dog with me, and doing this is heart stopping as I am always frightened I am going to run her over, but she seems to have learnt self preservation thank god.
A picture of my first obstacle double gates which you have to negotiate on your scooter.
Next obstacle is a tall gate as I said above it opens inwards. See video above as I have included it at the end of the video. Now once you get through it safely and close it behind you then you are in the park. BUT If you want to go into the town you are immediately stuck as the barriers are not big enough to allow me through (I am not the only one who lives in my flats who cant get out this way).
This is what you come up against its access to the town well its a barred access to the town as i cant get through it with my new scooter.
Once we finally get through the tall gate though if we are just going for a walk we have a lovely time going around the park and she enjoys it.
The barriers. Now the idea of these barriers I believe is to stop motor bikes and bikes. or odd shaped people from entering. WRONG, as every day I see bikes in there and on occasions there are motor bikes at night using the grass as grass track race. The point is down the bottom corner is an area which is OPEN but has a rock in the middle so I am not sure I want to try going that way but motor bikes have no problems.
Surely there must be another way of stopping the nuisances but also allow the disabled a right of way to live in their town without difficult obstacles I wonder how other towns deal with these issues. Please share good practices please.
OK YOU COULD if you wanted to go the long way round. It’s a long path which is so uneven and full of holes and dips and slopes, you take your life in your hands. By the time you get to the bottom and closer to town you feel like you have been in a roller coaster. I come home feeling awful. Even with a scooter with good suspension you sure get a bashing about and I wear my seat belt as sometimes with the slopes you feel like your going to topple over (I know that I wont but its difficult when you are trying to stay safe with pedestrians around and a dog who is walking by your side. When I finally get home boy I feel like I have been in the gym as everything aches.
Going long way round.
Then the scooter its really well made. Excellent. But it is too much scooter for me as I am very weak in my arms and found it hard for me not to loose grip on the tiller as it was very light touch and any bump I would loose grip which is quite scary.
Any manufacture of disabled products should ensure all their products are tested or displayed with disabled people. Every persons disability affects them differently.
Councils perhaps you should get someone not disabled to road test your towns, and shop keepers do the same too. Just walk or ride in my shoes for one day and you would soon learn just how disabled friendly we really are. Ok you get points for certain things but ultimately you are excluding us from having a normal life as we could possible have, as really its off putting struggling to get in shops time consuming and frustrating that a lot of disabled people now dont bother and spend more time at home or on their computers buying on line, rather then going to the local shops, because at least buying on line you get treated with respect and every delivery driver i have come across has been amazingly helpful and kind.
I never asked to be disabled I just want an easy life, i don’t want nor do i need any more barriers thrown at me. Next time you want to design something for example like the barriers in parks just remember that a disabled person may have to negotiate it. You should think disabled first before you decide to do these things as there are 11 MILLION people just in the UK who are disabled.
Sadly everyday more and more people are becoming disabled and its up to local authorities and manufacturers to get mobile and disability friendly in order to allow us to have a good and enjoyable life, not one which has barriers chucked at us like bad pavements, poor management in shops and unfriendly disabled aids which have not been tested by the exact people they are designed for.
I have thought long and hard about writing this but it is no good it is really bugging me. I hope that whoever reads this does not find it offensive its not meant to be, but its my way of trying to find a perspective into something that is constantly being dragged up on forums and groups.
What is it? Hum well have you ever gone out say to the shops and noticed anyone looking at you in an odd way? Maybe you think why is that person looking at me like that?
Nearly every week I go on forums or groups and there will be someone on there literally “spitting feathers and full of indignity”
Now you would think World War III had started. I would have an image in my head of some person with arms under their breast standing there and taking real offence………. I am drawn in to the conversation as it seems so intense something awful must have happened to induce such a vitriolic and angry post.
It would sometimes start with…….. “How dare they look at me like that? (Hum reading on thinking this might be juicy), who do they think they are for gods sake”! I could literally feel the fire of anger coming off the screen…what had this person done to illicit such a response……..so holding my breath I would carry on reading.
“The nerve of the them. I was just walking into the supermarket with my walking stick, and this moron standing in front of me, looks at me like I am diseased or something and steps out of my way and the look they gave me was disgusting like I was dirt under their shoe, just because I am disabled and use a stick how dare they look at me like that………….”
I know my brain is very slow and it would take a few seconds to comprehend what on earth this person was moaning about.
It would seem the person had some how purposefully or inadvertently given the impression that they found the look of their disability as distasteful or not real, perhaps the person with the stick was some how playing games and just doing it to get attention or money off the state, who knows, but the writer of the piece would be so mad one would think they had been physically assaulted.
I have had a think back about times when my disease first got so bad i needed a stick and an arm to lean on. I would go to the supermarket and by the time I got to the check out would be exhausted and out of balance.
I had often stumbled and needed to hold onto my carers arm to stop me falling. Yes I would admit that someone in the queue by the side of me would look at me with a look of sadness which would prompt me to say “oops I need to put more water in my gin in the mornings” and this would break the ice and the person would smile and giggle with me which broke the tension of the moment. I would always turn these awkward times into a scenario where one could laugh and smile alongside of me. My illness never made me sad, frustrated yes but never sad.
I was proud actually that even though I had a life changing disability that I could still go out and that I could still quip about it and interact with people to show them well there is nothing to be scared of not really, hell no I may have MS but I am not dead yet there is still life in the old dog yet lol. Below just a few photos of me over the years of having MS, I just got on with it, and never bothered about what others may have thought. I never stress over what I cant change.
I kind of felt sorry really for the posters as my feeling is they were not angry at this person but more angry with themselves and what was going on around them, and it was their way of dealing with it, by focusing on a tiny thing that may have happened and turning it into a major incident. Maybe a need to be noticed perhaps, for people to feel sorry for them, or even feed their insecurities about their disease.
After thinking about it I realised that people with MS or any other chronic illness can be very insecure, and some of them needed to be supported but didn’t know how. So they use the media to feed it to feel loved and supported.
You could almost imagine them sat in their room lonely and sad, lapping up all the answers of support, lapping it up like a cat would lap up a bowl of tasty cream. The person who had unwittingly looked that way, would never know that they had caused such a drama which would be unfolding and getting more and more intense and down right nasty towards them.
I am sure they would have been horrified. Its almost like someone being stoned like in the days gone by, but verbally a trial by media. It would almost become mob rule as other posters would get wired up and angry for the first poster.
In days gone by people would be stirred up by verbal communication and things could get pretty nasty. Now its all down to lonely people living in their own seclusion feeding off each other the object of their hatred was not known or seen, but it didn’t matter not really as they could feel for the poster as they too were in the same situation and perhaps similar had happened to them too, so a simple moan could turn into hours and hours of posts from all over the world.
With the Internet you can start a post at night in the USA and it would be picked up some time in the morning for example in the UK, then posters would pass on their thoughts, and come the afternoon in the UK it would be the morning in the USA etc, and so that one small post could be doing the rounds for many many hours all over the world and getting bigger and bigger. At least in times gone by you reacted and it was done and dusted there and then. I feel now its so much more unhealthy. We tend to hold onto our anger and never let it go which cant be good for us surely.
Then just when you thought it had calmed down someone else would find the post and kick it off again, and indignity would reign once more around the satellites…….
An innocent glance taken totally out of context had been used to feed someone else insecurities. Perhaps the indignant person needed to GET over themselves and find a life………yes they were disabled they had been given a rotten calling card but they needed to learn to deal with it for themselves not stir up a emotional feeding frenzy by others in the same place. All these people responding for me feeding the insecurity were the same sadly.
Life with a disability doesn’t have to be the end of their life but the start of a new one with lots of challenges yes, but we have to choose our paths in life. It is so much easier to take the easy path of just not dealing with it, and passing it all onto someone else and live the rest of our lives indignant because someone LOOKED at us in a weird way and make a huge thing about it which would feed us for a week and prop up our fragile egos.
As Humans I believe we are an innately self-absorbed species. Partly down to the fact that we have an instinct for survival. Could this person who is sharing this awful experience on say Facebook be using it as a way to survive another day. Using this exaggerated incident to enable them to cope through their own day, isn’t this a bit selfish really?
This could be dangerous unintentionally. There are a lot of people now living with a Mental illness who also have alongside a chronic illness they have to deal with. By sharing this story it could unintentionally stir up someone else who may not be as equipped to deal with it. It could even stir up hatred to all things NORMAL.
We have no idea how fragile minds are and the Internet is now a breeding ground for many things some of them not so good. By Normal I mean a focus can then turn onto someone who unwittingly one day looked at someone and without realising it set off a chain of events, because they appeared to be a “normal” person with no visible disabilities…………….
This doesn’t mean they have no disabilities just that the poster couldn’t see any, but perhaps their innocent look was of sorrow, or they may not have been looking at the person but through them as they were reminding themselves of something that happened to them that day. DON’T assume they were looking at you in a bad way.
Perhaps if you are reading this just be aware that if there is an issue with someone LOOKING at you in an odd way, look at yourself, and how you deal with things in your life at that point in time, and keep it to yourself, as innocently you could be putting other peoples lives in jeopardy.
You see that look, the best thing is to Stop – Take a deep breathe – Think of something funny – move on.
We all need to learn to GET over ourselves, yes we are disabled, but we are not a unique species with special privileges in life, we have to learn to deal with what we have been given, and not expect others to prop us up, as these same people may be more disabled then we are, more fragile then we are, and more scared then we are.
Let us all try to be a bit more tolerant of each other. We are humans and we are all just trying to survive the best we can, we don’t need to be stirred up and stressed to support someone as it just makes their day worse too.
Your needs shouldn’t always come first. Just remember whatever you post on media can have a ripple effect that leads to a tsunami, be mindful that others may be way more fragile. Just try to look at the funny side of things. Make yourself laugh, and the incident will just fade away.
I have another saying too when someone says to me “well you look really well” and I quip back well why shouldn’t I? I am not ill I am just NEUROLOGICALLY CHALLENGED, and it makes them smile and they know I am ok.
If you really want to be happy, you need to take a step back. You need to engage with the people around you, and with the rest of the world. Because this individual focus really isn’t working for anyone. Certainly not for you as it just leaves you having a bad day and a constant reminder inadvertently that yes you are disabled………. Turn the computer off, get out of the house, sit in the sunshine, do something, don’t focus on the bad things in your life, look around you, there is beauty you just need to look for it.
OK now really when someone said to me that hot chocolate could help fight my MS my first thoughts were of the hot sultry relaxing group who I used to listen too years ago…yes if your my age you might remember them, Hot Chocolate. They could help me get over my MS any day lol.
Oh those were the days. Hot Chocolate and much less calories…..
So now researchers have come up with a small group of people who have tested the theory which seems to be for the idea. One cup of high flavonoid hot chocolate a day may help keep the old MS fatigue at bay.
Really could it only be that easy I think to myself. So its off to Amazon to do some serious Hot Chocolate purchasing to test out this theory. Anyone want to join me?
I decided after some research to go with Green & Blacks as their coco content is 97%. I am making my coco with coconut milk as I hate dairy milk. So I will see how I get on. Its a bit errrrr strong so added a bit of sugar.
I am thinking if it helps MS fatigue then why not all types of fatigue for others suffering with Fibromyalgia, M.E. CFS the list is endless.
We’ve all experienced difficult times and painful events. Moving forwards and healing means processing what’s happened and learning to be at peace with it, whether that means learning from it, forgiving someone who’s harmed us,…