Tag Archives: disability

Bedlam, chaos and disorganisation

Bedlam has taken over my creative space and moved it around the house.  Naughty Bedlam, I shall punish it later.

Bedlam has its way in bringing out The Evil Queen in me. 

Bedlam puts my work both writing and art into strange unconnected folders and boxes then distributes these folders and boxes all around the house in random crevices and nooks, playing hide and seek with my work is not fun!

What is this bedlam of which I speak?  My family, primarily my loving husband who tries to keep house when I am bed bound sick, when I get well again it can take up to two weeks sometimes more to find my work so I can get back to it again.

So far I have found my vampires mingling with my fantasy stories and even my paleo recipe folders.  I guess human blood can be thought of as a paleo food, but still, it’s in the wrong place!

I have found trolls in my box of pagan things hiding underneath packets of patchouli incense and dried agrimony and dragons playing with unicorns in my learning how to read music bag.

I have even found a baby ogre in my knitting kit – and please do not mention the flying octopus!  For some reason I found that partially hiding underneath the chest freezer.

And then there are the eyes, eyes, eyes everywhere!  Hanging on the bedroom wall, hidden on a bookshelf, under the bed, on top of the rabbit cage and in a shoe box!  The eyes have it!  Or rather I have had had enough of the eyes! 

Of course I am talking about my various works, whether it be fiction writing or pieces of art I have done, I am not talking about the imaginary friends I have, not yet anyway – why are you looking at me like that?  Every writer has them.  Imaginary friends that is, how else do you think you get stories?  Though sometimes I wonder if my imaginary friends are all that imaginary as weird things are noted around my house by guests, but we never speak of those, do we?  You could say I am insane and I accept that opinion of yours because what is normal to me is ludicrous to you.  I can stay at home for three months solid and forget that it’s not normal and be quite happy actually and very occupied with various things, whilst Joe Bloggs down the road goes insane after forty eight hours.

The biggest work for me at the moment in gathering all my work back into its former place is the fact that two of my vampire folders have  fallen off a sideboard and behind it and has intermingled with other papers in an attempt to try and gather them for me.  This had meant that the four drafts I have done of one particular story is meshed together and I have to work it out like a jigsaw puzzle because I have done all four drafts to the seventeenth chapter and the novel is not finished.  What makes it worse is I am ever so slightly absent minded as a trait I was born with, so therefore many things have been printed twice and are not noted until an accident like this happens… yes I am a nightmare.  But honestly, when people leave my work alone, I am actually very persnickety about filing and organising, it is really hard living with someone who will store anything anywhere and doesn’t have a system.  It really messes my time and system up – unfortunately I live in circumstances where I don’t have a spare room all to myself and I do not have the funds to organise a heated shed in the garden for work, so I have to fight to work, literally, every day, not only my health, but the flipping disarray in the house and have to blooming accept my work being meddled with on a daily basis!  Because my husband, bless him, is a recovering hoarder. He is recovering because whilst living with me he doesn’t have a bloody choice!

So when I get bed bound sick, I have the added stress of knowing that he will slip back into his hoarder care-free ways and its muggings here that has to clean it all up again, when I get the good days back, rather than working or gardening.  It’s all made worse by the fact that he doesn’t work outside of the house, he is home almost all the time.  Love him, but I wished I had time to sort things out for a few hours a day without him following around me in a panic all the time.

I am desperate to paint, I love to paint as often as I read and write, but again, I have no specific place to paint.  I have to rely on a clean dining table to paint and often it’s cluttered with my husband’s essentials and bottles of condiments and a laptop.  So when I have the energy to leave the bedroom to go and paint, it takes me an average of 45 minutes to tidy away enough space and find my paints and materials in order for me to work, often by that time, if I am still sick, I am too knackered to work immediately after clearing that I need a rest and then by the time the rest is over, its dinner time.  Creative people will know how I feel about living like this and you are right, I do feel that way too!

It’s a battle with my health but it is also a battle with my living arrangements and housemates.  My work productivity suffers greatly because of these things and it isn’t because I don’t try, because I do, even on my sickest days, but you have no idea how hard it is to live with these battles day in and day out, I will admit that I have mental health problems normally anyway, but since having my work affected as a result of this lifestyle (if you can call it that), I have for the first time in my life around five years ago, become suicidal as a result.  It is something I have discussed with my husband and he does acknowledge the cause, but what can you do with someone in their mid-sixties who has never lived any other way?

I am not used to a house like this.  I don’t accept a house like this, but I have to make do.  So when I use the work bedlam I do not use it lightly.

I try to stay light hearted about things, but it is a BIG try.

It is gut wrenching to force yourself, as sick as you are, to cough and choke your way through two rooms to clear and tidy and clean, only for the very next couple of days, for it all to revert back, because your husband is motivated in another room unsupervised and doesn’t understand how to do it, he just moves things from one place to another and undoes your work in just a few hours.  Then you’re in bed exhausted, chest clogged up worse for all the dust and you can’t move for another week.

The thing is, writing this makes me feel guilty.  Because he is my carer, he cares a lot, he does a huge amount, and more than any man would really.  He is twenty seven years my senior, he does everything for Henry, everything for me.  He does the shopping, the laundry, the ironing, he cooks, he shops, he deals with all our problems and I have never known a man like him before.  Complaining like I have done, feels wrong.  But it is a big reason why I struggle to work lately.  I am fighting for a work space, but I have less than 3ft square to arrange things in and my art and writing stuff is much bigger than that little corner, the box room would be an ideal office, but it is Henry’s bedroom, the big bedroom can’t be used at all because we have a leaking roof we can’t afford to fix.  In an ideal situation we would move our bedroom into the big room, Henry into our current bedroom and I would use the box room as an office.  But at the moment I can’t.  We have had a survey on the roof it will cost us 5k to fix it, that is around 15yrs of savings for us currently.  Not feasible, especially with the storms we get up here.

Am I so wrong to need to get this off my chest and explain myself?

Tis bedlam here.

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Other hobbies

What do I do when I am not writing?

Quite a lot actually, because I don’t write much at all these days; I have lots of ideas for things to write but I think illness has made me lose focus and passion for it.  I was a lot more passionate about writing than I am nowadays.  It is simply because pain distracts me and makes me lose where I am heading – coughing fits and a severely runny nose are the biggest contributors for throwing me off course, yanking me out of the zone, as it were.  As I have said before in many posts, I live with a perpetual chronic cold, with ear, nose and throat infections thrown in.  It isn’t just a sniffle, I wish it were, but I can get through five hundred individual tissues on a bad day, two hundred being the norm for me.

Since the 21st December 2019 the only things I have written are what are on the blog and approximately 5000 words of non-posted works of other things, but nothing contributing to my novels.  Hand written notes of other ideas are not included in this, I am spending more and more time in bed these days as I can barely move.  All these problems are giving me severe insomnia and hypersomnia.  What do I mean by that?  Well I don’t sleep at night, I seem to sleep better during the day, for some reason my chest and sinus is worse at night.  When I do eventually sleep during the day I sleep between 7 and 16 hours in a stretch, to wake up for 2 hours in a choking fit with a dry crusted mouth.  Not a pretty visual I know.  I can go 30 to 40 hours without sleeping, purely because I am too busy clearing mucus from my system.

So it isn’t any wonder why I lack focus and concentration really.

Basically, everything I do when I am not writing, are things I can do at home, in the bedroom.  Primarily with my desktop computer, as I have recently had it moved to the bedroom due to the fact I am often too sick to get downstairs these days and I have moved my laptop downstairs for the rare occasion I am down there for more than an hour.  Because my legs swell a lot sitting at the computer desk, I can only sit here for an hour before I have to rest with legs up for thirty minutes, to get the swelling down, so even if I am on a roll, my ankles start burning and that throws me off course and I have to go and put my feet up.

I read approximately 30 to 80 pages of a book per day and about half a magazine too.  The types of things I read the most are fantasy, sci-fi and comedy fiction with a lot of non-fiction thrown in; the non-fiction I enjoy are self-help books, nutrition books, history books, theological research, mythology, folklore and cultural studies.  My current reading list is Time Song by Julia Blackburn, The Toll by Neal Shusterman and Roy Vickery’s folk flora. 

I do puzzles such as codebreakers, arrow words and gardening magazine crosswords – before my chest got too bad I used to love doing 1000 piece jigsaw puzzles, but it is frustrating having a coughing fit and losing pieces across the room all the time!

If I am not too busy fighting mucus, I get to knit, crochet, sew or practise my recorder and keyboard. 

I watch TV only if there are documentaries I am interested in, I mostly watch Smithsonian and BBC four with some Drama channel thrown in.  I will watch anything with Lucy Worsley, anything about the history of jazz, soul and classical music, nature and wildlife documentaries, documentaries about farming and country life.  I like science too, so I will watch sky at night and space science programs as well as things in the past such as time commanders, gladiators and the occasional wrestling show.  I love comedies, I only watch the comedies on the Drama Channel, but I am picky about which ones to watch.  I like only connect and some quiz and puzzle shows like Countdown, but I don’t watch them all the time.  I have to be in the mood to watch TV and before I was sick I watched around three hours of TV a week, these days it’s about two hours a day.  We never miss Michael McIntyre’s Big Show if we can help it, nor do we tend to like missing gardeners world or shows such as the RHS show, cruft’s and BBC Proms.  I’m pretty old fashioned I suppose for someone who is thirty seven.  I dislike soap operas and drama llama stuff – yes I mentioned the drama channel, but there are three hours a day where it is strictly comedy and I tend to only watch that channel (at the comedy times) or food network when there is nothing else on.  Sometimes I put on a DVD and I will often choose vampires or family animations and comedies. 

The main things I do these days are play games online.  I don’t even socialise that much online anymore, because I lose concentration and people who know me are starting to think I have memory problems.  Because a coughing fit will make me forget what I have said or what I was on about.

The online games that grip me are… Roblox, yes Henry got me onto it and to be honest, Roblox has saved my relationship with my son!  Because I find his kind of games hard to do since becoming sick – Roblox has opened a whole new world for us and we play hide and seek and various other games together.  When Henry is at school, I still sneak onto the site and play bee swarm simulator, Ripull mini games and fairy simulator.  Bee Swarm simulator especially!

Other online games I play are ovipets it is a cute breeding game on facebook and I have been addicted to that for nearly 5yrs. 

Flightrising is another breeding game, but I go in and out of phases with that.  Primarily I have played this for a whole eight months without a break, purely because Henry wants to see what dragons I breed and he loves to name them and do what we call “Dragon Lottery”.  Dragon Lottery is where I look through the offspring possibilities scrying menu to see what will happen if I pair certain dragons up, sometimes I can’t decide, so I make a list of all the best ones that go with my chosen female that day and I number them, then Henry, Paul and I will choose a number from the list and put it through random.org and sometimes someone gets the number right, in which case that person must get a treat of some kind or get to choose to do something; I breed five pairs of dragons every five days, because that is how long it takes for the eggs to hatch and we have a limit of five breeding nests on this game. 

I used to play online scrabble but I have got accused of cheating because I know too many unusual words.  I don’t cheat on that game, I don’t see what purpose that serves other than the joy of creating misery on another person who loses and I am not a vindictive person like that.  I really do have a broad vocabulary, though I rarely use it outside of scrabble and I love doing anagrams for fun, so I see a lot of seven letter words and I am a dictionary and language addict, so I know words that are weird to normal people.  Here is a list of words I know for high scoring on scrabble, which have got me accused of cheating when used previously – plus, I have read books written by scrabble champions.

ZEBU – QAT –  QUARE – SEQUIN – AWK – EUOI – AIA – QI – KIMCHI – VEX – VAV – TAV – EAU – UVEA – AEON – OXIDE – POXY – QIN – QINTAR – FATWA – QABALA – QADI – SJOE – KHAKI – EUOUAE to name but a few.  I have to admit I was shocked when SEQUIN was considered a questionable word, the others I can understand, but I was sure almost everyone knew what sequins were?

I love words and word play so much I have considered about having a word of the week thing, but I am unreliable with keeping to things like that, as you can clearly see from past efforts or lack of.

Other than sketching with pencils or sharpies in bed and/or colouring in and story planning, I don’t do much else on a bad day.  On a good day I can add about an hour of light gardening to the list but not much else anymore.

I’m pretty boring I suppose, by my peers.  I can’t even cuddle the rabbit lately because I cough too much it terrifies the poor thing!  I suppose I sound like some big barking bear or something to the poor creature.

I have gone out to the doctors and walked past dogs when I am like this and the dogs think I am barking at them, they react accordingly, it is embarrassing!

 

 

 

 

 

 

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Money free world

Money’s a problem all over the world

It’s a simple solution and not in a dream world

It used to be reality, for everyone around

But men fell in love with shiny rocks in the ground

It’s a funny old thing, love, but it does astound

We all have to have currency, the shiny tokens of gold

It’s to help everyone, or so I am told

But I just see greed and exploitation

Unfairness and hunger and lots of discrimination

It shouldn’t be like this, in a human world

We are smarter than this, our minds have been swirled

I have heard of a time where everything was free

Money is an illusion, you just can’t see

Warmth, food, water and a place to call home

Are all basic needs which everyone should own

You can’t put a price on good quality of life

So why has humanity invented this strife?

It’s a puzzle, it really is

I hope we’ll soon all work out the quiz

But suffering world over would end in a jiffy

If everyone thought that money was whiffy

Everyone all living a life they deserve

With food, warmth and water, what a learning curve

Imagine how far we could all progress if price wasn’t an issue we always had to address?

Money is a barrier in this modern world

Money needs to go now, a new system should unfurl

A system of voluntary work and good will

A system where people go to work still

But system where freedom is always a choice

A system where people in their lives could rejoice

A system with a world united where barriers should fade

A system where teamwork is always displayed

Yes there will be some who won’t do their share

But society is good at not keeping people there

People are good at motivating the herd

People who are lazy would be considered absurd

Even the sickest has their worth

But whilst there is still money, plenty resent their birth

It is a horrible fact, but it is quite true, whilst money is still around

It’s imprisoning you

Not just you but all of mankind

Money is very, very, unkind

Imagine your life without money there, what would you do?  What would be your cares?

How would you live?  Who would you help?

Please do think about this, it might self help

It will open your mind to what you can become

I wish more people thought that money was dumb

This poem was written quickly, I know it can come across a little uncomprehending but it was written at 5:45am on a cold foggy, frosty January morning and I have a bad chest infection and I tend to think about too many points at once and my brain gets scrambled at the best of times – but this is an important message I think.  One that really should be shouted as loud as climate change awareness, because I think, if money was eliminated and people worked together in teams and progressed without the need of money incentives, things like climate change would reserve rapidly – the cure for cancer found – the ability to terraform Mars would have already been done and so many other things.

I mean come on, think about it – do you really need the incentive of a few shiny coins a month to make you make this world a better place?  Do you really need the incentive of earning little fake tokens of your supposed value in the world in order to give you the life you want and deserve?  It is a belief system that you do need these tokens as an incentive to go to a job you hate, being stuck in situations you hate, that have you enslaved, slavery is never ever truly over, until the fat cats decide to change it.  Though how many fat cats are there in comparison to the slim?  I am talking money here not the supposed “obesity crisis”.  I have always struggled with the concept that I can’t do this, I can’t do that, basic little things that most people in the Western World take for granted, because of lack of money.  I have never ever had the ability to be extravagant – I can tell you what I think the most extravagant thing I have ever done financially has been outside of special occasions – bought, shock and horror a book that cost me £25 that to me is an extravagance!

I have never had the ability to afford to get my hair done at the hairdressers when I became an independent adult, living away from my parents, I cut my hair myself!

There are so many things that would change in my life, if money was removed from the social system.

I have been told several times by many doctors that they can treat my problems, it is easily treatable with basic surgery, however, it is too expensive for a struggling NHS right now, so therefore, until the illness infringes my life to the point it becomes life threatening, they will not help me.  Money, I am afraid to say, does determine how moral and humane a doctor will be and from my experience, it means that money makes them carefree, it makes them monsters; not just them, but everyone, people kill for money for fucks sake!

People need to learn that money is evil.  Yes, money saves lives and all of that too, but that is just an illusion – really many people would never have got to the extent of needing charitable donations if it weren’t for the problem that money exists in their world.  Most people’s relationships are affected by six core things; money tops it the other four things are, lying, political and sport debates, religious differences and general discrimination (racism, disability discriminate, age discrimination, fashion critics etc.) – people argue about those six core things a lot and that usually determines how well you get along with a person or not.  Money being the biggest factor because not only do families argue about the lack of it or the want of it, but people generally avoid creating relationships with new people in case they might become their victim in some way financially.  People become more uptight socially if they are wearing expensive clothing and have the latest mobile, than those who are poorer in the community towards strangers socially approaching them. 

People also judge you by your supposed wealth or lack of wealth.  I have been in situations of worse poverty than I have now and the general public; do treat you differently, either with sympathy or with contempt, especially if you are known to be unemployed due to chronic illness.  I have also been in a situation where I have been considered quite wealthy (though the money was never mine, I was dependent upon someone for a time) and again, society treated me differently.  I became more human the more I showed to others that I might actually be better off than them and I have had friends who are super rich or of celebrity status tell me that it gets worse the more you have, you become almost godlike and infallible and this particular person who told me this said that she hated it, because she just wanted to be recognised as plain old normal Sue; she adored me because I never treated her or anyone else any differently to anyone else.  I won’t tell you her whole name because I don’t like name dropping.  But I will say she is a very respected and talented British celebrity. 

Going back to complaining about the doctors again; When I have been too sick to dress properly or fuss over my hair, I get treated like a piece of fermented meat in which the doctor is even reluctant to physically examine.  I am clean, but I wear a baggy grey jumper and black leggings those days with trainers and my hair is in a messy bun. 

I go back to the same doctor a few months later after coming from a funeral in a dress suit with the same messy bun might I add and they treated me as though I had a brain and they spent ten more minutes with me than usual and examined me thoroughly.  Why the snobbery?  Same patient, same doctor, different clothes and class appearance!

I am going to number and list everything I can’t have because of my financial situation – then I am going to number and list what I would do and have in a world without money.

  1. I can’t have an operation to remove unusually large adenoids which makes me long-term unable to breathe through my nose and smell, it also causes severe post nasal drip and breathing problems, it affects my voice and larynx and I get throat infections 8 times a year and living with constantly ear infections due to Eustachian tube blockages purely because of the adenoids. Because of this, I have severe insomnia and hypersomnia, depends on how much my body will let me sleep before I literally wake choking on the entire gunk in my body, this has gone on nearly eight years now.  One of the biggest factors of why I cannot work, because it affects my breathing, my voice and my hearing levels.  I also live with vertigo because of sinus and ear pressure and almost constant sinus migraines.  Because of the amount of antibiotics I need, I have been developing antibiotic resistance and my digestive system is collapsing as it is affecting my gut flora.  As an added bonus because of my health problems, I am self-conscious going out, because I have been accused of infecting everyone, because I come across as having perpetual flu like symptoms, cough and cold.  It is especially difficult to go out since this new Chinese virus is going around.
  2. I can’t have an operation to stretch my tendons in my left hand which renders three of my fingers almost immobile due to how tight they are, despite how twisted my fingers are that when I fall down I am constantly at risk of breaking my hand.
  3. I can’t afford to get rid of old furniture and broken televisions, computers, cookers and washing machines via a skip, so have to store them in a corner in the garden and I hate that, because I am extremely house proud and as far as the neighbours are concerned by our back garden, we must be pack rats in the house, the nasty hoarding sort – but we’re not. We don’t have a car or anyone who has a car who would be willing to help for a day.
  4. I can’t afford to get my son to socialise outside of school, because I can’t buy him the rugby kit he wants and I can’t afford the membership for the marathon club. Though there is light at the end of the tunnel for his marathon club, Henry has been seen doing so well at free running events around town that we have been told as soon as he is 10yrs old (which is May 2020) he will be eligible for sponsoring and free membership!
  5. I can’t have a balanced diet which meets my needs; even the food bank struggles with someone like me – gluten and lactose intolerant with a few other allergies thrown in like certain herbs and fruit allergies. At least once a week I have to consider eating something I am intolerant to, because our budget can’t stretch for the whole week.  It’s either that or having an entire day of just meat and potatoes with hardly any or no veg and maybe some sauce.  When money was better 2yrs ago I was having an 80% paleo diet and my health bloomed, I had more good days than not.  But when the government cut that evil thing – money, I had to cut the food and my body isn’t responding well to that.
  6. I can’t afford a fish tank and supplies, a dog or some chickens.
  7. I can’t afford certain gardening tools and supplies which will help me grow more food.
  8. I can’t afford to get a gardener to help me when I am on a run of bad health. I regularly get bed bound sick where I can’t do anything for 6 to 8 weeks at a time, by that time, my garden is ruined when I get back to it, by aggressive bindweed.  The bindweed in my garden are triffids – I was ill for 9 weeks last summer and it managed to pull down and break an entire 7ft cherry tree I had put in.
  9. My husband knows I need to get out more and see the doctor a lot more than I do, but I don’t go to see him more than once a month (though it is essential) because it costs us £12 a time in transport. Therefore, we can’t afford a car and we can’t afford to pay for me to go out, so unless I can walk somewhere, I can’t go out, so I am even more isolated now.  I am also not eligible for a disability scooter for free, because my problems are not mobile, it is mostly breathing problems due to enlarged adenoids so they don’t take that seriously at all mobility.
  10. I am struggling to be able to pay for the amount of tissues and symptom relief things I need. Such as throat lozenges, vic rub, Vaseline, sanitary towels because my coughing fits have weakened my bladder severely.
  11. I have lost a lot of weight since becoming very ill, losing weight because coughing fits have made me become involuntarily bulimic and with the lack of affordable food I can eat which fits into my dietary needs, it is hard. I have lost nearly 50 pounds in the past four months and I can’t afford to get smaller clothes, so I am wearing clothes that are ridiculously big on me.  I know there is gumtree and all of that, but really it is hard to travel to pick things up and the women getting rid of their clothes don’t like the idea of a man (my husband) picking it up for me without me present, tried.
  12. I need a wig because my trichotillomania has got worse, but I have to make do without one and tolerate the whispers behind my back when out.
  13. My bed is broken and needs to be replaced because the frame broke when Henry jumped and pulled on it last summer. I can’t afford it, so we are literally trying to hold it all together with planks of wood and gorilla tape.
  14. We’ve lived with a leaky roof in our biggest bedroom for eight years now, we can’t have the roof fixed that would be 4k, heavy rains with a northerly wind causes havoc. Also our utility room roof has caved in too.
  15. Our toilet is coming away at the wall, again we’ve had to resort to gorilla tape and sealant to try and make do until we can afford to replace that too.
  16. Henry needs new clothes too, he is growing fast, but he has my problem at the moment too – having to wear clothes too big, because he is wearing his father’s hand me downs to keep him warm this winter. Thankfully Paul is a stick and is the smallest man’s size in clothing and doubly thankful that Henry is taller than most for his age. 
  17. Our sofa is broken and that needs replacing, we don’t sit downstairs anymore because of it. Also because it is winter and we had our gas fire taken out and gas supply to the fireplace removed because it was unsafe four years ago, so we have no heating in the living room except for an electric fan heater and we can’t afford to use that more than an hour a day.  We put it on whilst we eat our dinner, we don’t eat dinner in the dining room anymore because that is even colder than the living room.
  18. I can’t afford my psoriasis shampoo and wash, so have to tolerate discomfort as the NHS has refused to prescribe me again for more, told me to buy it for myself if I need it. Also they don’t fix hearing aids in our hospital anymore; I have to go to boots, so I have a malfunctioned hearing aid now, which means I am completely deaf a lot of the time. 

Surprising isn’t it?  This is England.  This is the 21st century.  Bet you didn’t know people like me still live like that?  The funniest thing is, I am one of the better off ones – one of the least poor, there are others worse than me, I have known them.  If you think my situation is shocking, honestly, you are a very sheltered person who needs to get to know others outside of your social circle a bit better.  I have known people so poor, that despite sugar tax, it is cheaper for them to get more calories into their child with a packet of haribo sweets than to cook them a veggie dinner.   I am not that poor yet and thankfully Henry has manageable allergies.  My Henry does however, live on sausages, mash, cucumber, carrots and baked beans more often than I would like, but that is the cheapest food I can get him that he is guaranteed to eat in full.  Some of the nation’s poorest can’t even afford to give their kids beans on toast, so I really can’t moan that much I suppose!

I am not poor enough in the eyes of the government to need charity help or help from the council, because we own our home outright and therefore we must fix things ourselves.  We’ve been told that if things are so bad, why not sell up and rent?  Because our money will only last five years, I would lose benefits and security in one fair swoop and we have no means to pay the rent, it’s unlikely that I will ever get well enough to have a proper job and Paul retires in three years.

In a world of no money my life would be bearable, it would be happier, it would be easier and our needs would be met; because people are more humane to those in need when they are equal to them.

Here is my no money list.

  1. Even though I am sick, in a world of no money I would have to contribute to society like everyone else.  But society would be more understanding that not everyone can cope with long hours and hard labour.  I would help places grow food or advise people on gardening for food, even on my sickest days I could sit on the internet on live chat, helping some gardening in need with various issues.
  2. I can help the world with aesthetics, by giving people my artwork to decorate their homes with, giving people my poetry and stories in books for them to enjoy. I could even get a group of actors together and we can make plays and movies based on my ideas.
  3. I would go to a workshop on my good days and help teach people how to make preserves, jams, chutneys, allergy free cakes and breads.
  4. I could do motivational talks.
  5. I can help sew and repair local peoples clothing from home, if they deliver.
  6. I can teach people about which flowers are edible, to help broaden peoples diet.
  7. I can do the occasional arts and craft workshop to help people recycle and upcycle things.
  8. I can help people learn French.
  9. I am a good massager and manicurist.
  10. I am very good with people who are suicidal or going through a dark time. I have had several people say that if it weren’t for me they wouldn’t be around anymore.  I have often thought about becoming a therapist, but in the last five years it is debatable whether or not I will be a hearing person in the future or not.  In fact, I have been told to prepare myself for becoming profoundly deaf to becoming totally deaf with a deaf dog support.  So I gave up my course as soon as I heard this.
  11. All my household problems would be solved, no dangerous stuff, more respect from neighbours and warm living room that is comfortable.
  12. I would be able to live the diet that is optimal for me as an individual.
  13. My operations would have been done before my health got this far and I would probably be able to do more things than what I listed above.
  14. We would have an electric car.
  15. We would have a dog, a full fish tank and some chickens in the garden.
  16. We would have tools for the garden and help in the garden.
  17. I would be able to wear appropriate clothes and so would Henry.
  18. We would have a safe bed.
  19. I would probably need to apply for a house extension so I could have an extra room to use as a library.
  20. I would be able to get out more.
  21. I would shave my hair off entirely and get a wig, so I learn to stop pulling.
  22. I’d go to the cinema once a week.
  23. We’d go for a pub family meal on Sundays like we used to.
  24. I’d take Henry to the big televised rugby matches.
  25. I’d adopt four kids and concentrate on getting my body healthier, rather than push my body to get that second child I want.
  26. We’d go out on a big family day out once a month at least – a zoo, a museum, a steam train ride, a bowling day out etc.
  27. Because a world without money would be more cooperative and free, I would be free to lend my services to certain people. I would be able to assist the local elderly, cook for them, visit them to keep them socialising, take them out, play games with the playful ones, and do the same for the severely disabled. 

It is all just hearsay I know.  I am down to earth enough to realise that I may still be struggling day to day with my own needs, like I am today.  But even in a world of no money, I could manage to help society from home, in my bed with online talks.  I could go out for one half day a week doing any of those things above and still be a worthy member of society who does her bit.  Basically, I would have a better life than I do now.  But because of my current needs, ESA will not tolerate someone who can do half a day of something, without pulling the carpet from under them and saying “well in that case you can work, we will take your money from you henceforth”.  They don’t care that my illness is such that I can go out for one half day a week, but I will be bedbound for four days after it and so therefore will not function around my own home – that to them, doesn’t matter.  What matters is getting me off benefits at any cost!

I am saying, in a world of no money, I can volunteer to be present outside of the home every 4 to 7days, if society tolerates someone who has a permanent streaming nose and allergies when she does it – I often feel that people recoil from me a lot when I am out about and this leads to me thinking things such as “Well why not just euthanize me now, then?”.

I burden too many people with my presence, they make it all too obvious and people who work in benefits don’t help matters!

Money is evil, it makes us heartless.

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My lifestyle for food, skin and health (or what little there is of it)

A few people will be astounded to learn I am nearly forty as a few people believe that they think I am in my mid-twenties, I don’t look my age apparently.   Have been told by a lot of people that they believe me to be incredibly young, three or four years ago were the last time I tried to buy alcohol and was asked for ID because the seller felt I was seventeen, which wowed me.  Maybe he just fancied me?  But I have had straight female friends who are much younger than me have their mouths drop open when they realise I am fifteen years their senior.

I believe it has something to do with how I treat my skin and what I like to eat and drink.  I took Honour Blackman’s advice when she was on a show when I was around eleven years of age that she has never washed her face, she uses only moisturiser with some cotton which she dabs and never rubs.  I do indeed wash my face but never put soap on it ever, I wash with plain filtered water, hot first then ice cold, I do use a moisturiser about once a week which is Nivea crème, I use this crème on my face, elbows and knees, my elbows and knees are as smooth as a child’s.  I drink cranberry or raspberry juice twice a day, I drink a lot of water with very, very watered down fruit juice concentrates, I have never really been one for tea or coffee, I never grew up.  I drink around six pints of fluids a day if I am not having a bad day, on bad days my body can’t keep fluids down.  I drink green tea about three times a week and a hot honey and lemon most days.  I love berries and eat them daily, prunes, raisins, dates when I have sugar cravings.  Chicken and fish being my main meats with lamb once a week if I can afford it; lately lamb is a once a month treat.  I love pickles and sauerkraut and I aim to eat a whole cup full of green leafy vegetables per day.  My diet has to be gluten and lactose free because of intolerances which make my illnesses much worse, two years ago I was hospitalised with bronchitis only to find out that with other symptoms I had, I had severe intolerances and my health has improved vastly since shifting onto a free from diet.  I consider my diet to be a semi-paleo, Mediterranean and Asian diet these days.  I say semi-paleo because I like beans and pulses and I will eat gluten free rice, pasta, oats and potatoes, hard-core paleo dieters will slap my wrists for those.  Despite all of this I am very overweight still, though slowly losing the weight since the shift.  I am around forty pounds lighter than I was before the lifestyle change.

I will admit that temptations do set in and I often sneak in gluten and lactose into my diet with severe ramifications which affect me for three to five days after eating them, I have done this around once a month since the change.  I am getting tired of this and getting to the extent that if I don’t have enough fruit and vegetables in my day I actually feel really ill, so it has got to the extent that I need to eat around five pieces of vegetables and a fruit a day in order to feel relatively ok in comparison.  I am happy recently that I have found free from Paninis, hot dog rolls, burger buns, naans and tortillas which don’t take like cardboard, so the idea of becoming totally gluten free permanently is more doable.  I have found lactose free whipped cream and single cream, which also helps and the other day on TV I learned that Hotel Chocolat does lactose free options which is exciting, because I love truffles, which they do lactose free – I generally don’t like chocolate much though because it clogs my ears up sometimes, so chocolate is a once a month treat and it is usually only about three or four mouthfuls. 

I am impossible to cater for food wise because of my allergies.  I am intolerant to gluten and lactose, allergic to pineapple, flax/linseeds, camomile, thyme, shouldn’t really eat eggs as it gives me wind, should avoid binging on chocolate due to ear blockages, there is an unknown spice at the local take away which also causes my mouth to burn and swell, never knew what that was!  Beef can affect me in a bad way if I eat it more than once a week; I eat starchy foods but not too much because that affects my body too.  Certain candies can make me extremely hyperactive mentally and sometimes physically which can be dangerous when ill.  I am really difficult to cater for since discovering these allergies and reactions.  When explaining to a friend at Henry’s school a few months ago called Dee, she shook her head looked at me and asked “what do you eat”?  At the time I was good for seven months solid, without breaking my free from diet at all and I had 9 weeks of what I call, normal health, then I caught a cold and thought fuck it all!  I never did get that streak back.  Purely because the government cut our benefits by £200 a month, so the above diet I had is no longer possible!  At the time it was very strict, I only had gluten free products once a week to satisfy beans on toast cravings or ham and pickle sandwich cravings.  I still ate eggs a lot though, but it was a windy time.  I had health, but I stank, but that was OK for me, unless I was on a bumpy ride on a bus.  I ate fish, poultry and lamb, salads and vegetables, I made sauerkraut three times a week, I had lactose free cheese and omelettes with samphire and spinach.  It was tasty, but boring and predictive and being on benefits I can’t afford to eat as regularly as a normal person should.  I can’t afford it on a strict paleo diet, whether it benefits my health or not, I do not have the money for three prime optimum meals per day.  My doctor is concerned with the lack of certain vitamins my body isn’t having because of food cost.  In fact so much so, we’ve recently become members of a food bank, referred by my son’s young carers group.  They’ve recommended the only food I should buy is the food I need, the food for my son and Paul should come from the food bank.  It is a sorry arrangement, but something we can’t refuse at this stage. 

That’s my situation. 

It baffles me that I eat all these fruits and veg with a piece of meat or fish a day and yet I am still not getting enough nutrients.  I can’t afford nuts, I can’t afford to have meat more than once a day, I can’t afford, seeds, I can’t afford red meat, or canned fruit, or exotic fruits which are highest in vitamins.  I can’t afford avocados, or shrimps etc. 

What I can afford and have almost always in my kitchen available to me are chicken legs, cans of tuna, sweet potatoes, potatoes, gluten free pasta, gluten free rice, gluten free porridge, prunes, dates, apples, bananas, grapes, oranges, spinach, kale, carrots, peas, onions, ham for sandwiches, gluten free bread, sweet pickle (not entirely allergy free), mayonnaise, baked beans, parsnips and sweetcorn, swede and cod fillet.  That’s all we can afford for me.

I have eaten this diet and only this diet with the occasional food from Paul and Henry, such as crisps, biscuits and fish fingers (not allergen free) for about a year and it is sending me insane.

I could afford better food if my doctors were able to get a grip on many of my symptoms.  My illnesses dictate that I need tissues for my sinus problem and I need an average of 12 to 20 boxes a week just for the sinus and chest problem!  That is how much mucus I produce in a week, 20 boxes worth; I get no extra financial support for this.  I also need regular sprays for sore throat, Vaseline because my nose gets sore and dry, hay fever tablets because of my other allergies; I need approximately 12 to 20 painkillers a week.  I was told by my consultant that I need to have Canestan ear drops (as they do them as ear drops too) as often as possible but they said they won’t pay for more than a certain amount but you can buy them over the counter at £5 a week on average.  I need to have these drops all the time and I am not overusing them apparently, despite my fears.  Because my ears seem to have a permanent inner skin infection, which in layman’s terms means I have a permanent ear infection, try living with that!  Because of my digestive problems I was told to bulk up on specific vitamin pills which the NHS cannot provide, so again, I need vitamin C, calcium, for some reason kelp and zinc primarily and have been recommended to double doses per day.  I need a psoriasis medicated specific shampoo and body wash, again unavailable on the NHS and this costs me £12 a fortnight for the strength I need.

So when you look at all that, you can see how I can easily come into debt and cannot afford a better diet, whilst being on benefits.

If doctors got a handle on my symptoms I would instantly become £45 a week richer.  I was told recently that our local NHS is struggling to the extent they no longer do hearing aid repairs, so I was told to go to boots, so I guess I will be paying for that too?

Ho hum, there you go.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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When the bell of life rings

Even the kindest of people can be unthinking and careless with your needs

Never be dependent upon another and their kind deeds

For one day they might go away, walk away or die

They say you mustn’t think of such things, but when you are in need – why?

It is essential to think the worst for what will happen if it does?

You can’t underestimate the power of fate, that even the strongest die

Although many can’t help being needy, like me

It is a scary concept to be in

But you can’t brush it all away under a carpet verbatim

What will happen if I am alone?

Who will care for me?

I can’t rely on charity, to always rescue me

It is a selfish thought I know, but what will happen, where could I go?

Nobody really cares or knows

We are not to talk of such things

No matter how close we are to when the bell rings

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Update November 2019 AKA I am still alive!

I didn’t continue Inktober from day 5 and I haven’t done anything towards NaNoWriMo this year either, my health has got quite bad in the past few weeks, for some reason or another I have developed something new where I am sleeping an average of 10 to 15 hours a day and when I am awake, I wished I was asleep and this is something strange for me, because I not a person who loves their bed (unless I am making love in it)!  I don’t find sleeping a productive venture, other than maintaining health (which I don’t have any more anyway).  I am living in constant pain too; painkillers aren’t cutting it anymore for me, not even the occasional co-codamol, I am having almost permanent nose bleeds and other strange bodily phenomena, such as the feeling that I have a glass splinter in my foot and my arms are going numb and losing strength at random unpredictable times.

My IBD markers have also risen and my rheumatic arthritis has decided to wake up again, it often goes away and comes back again, remission I think it’s called?

My depression had got better until last week I received a medical request which puts my ESA medical due around Christmas week again, just as I felt that Christmas might be financially impossible this year I get this as an added assurance, because I don’t think I will pass it this year due to the fact that my consultants are very laxed in actually giving me a name for some of the things that are wrong with me.  I knew my local NHS is struggling as it the NHS nationally, but yesterday on TV I finally learnt why my consultants are particularly lacking in their treatments of me – they are part of what the government consider the notorious Nuffield branch crisis.

I never heard of it before now.  I don’t really understand what it means, but there seems reason to be concerned according to the news I watched last night about being part of the Nuffield problem.

I don’t vouch any knowledge on the thing.

All I know is that someone advised me to take a certain person to my medical this year as it may help my claim, because I am a client of a specific charity and apparently this could give my claim some weight.  I just hope I don’t sink.

I haven’t been able to practise my recorder for a month either, because I have been getting a little chesty, I was expecting this, because every year between November and March I get bronchial issues – I have been given medication for asthma but the doctor declines calling me asthmatic, I don’t know what that is about, but there is no name for my breathing problems when I get them.  When they get really bad the doctors say I might need to stay in the hospital as I always seem to get bad enough that they feel I am borderline of pneumonia or pleurisy.  Hopefully that won’t happen this year; I am tired of the fact that I haven’t had a decent healthy Christmas in almost 7yrs.  It is starting to make an Ebenezer out of me. 

I haven’t written anything other than 9 poems since my last post and I don’t think I like them enough to share.  Some of them touch very delicate subjects.

I have also managed to list whilst in bed, all of the story ideas I have had had over the years and number them, 187, that is scary and I felt instantly depressed that more than half will likely never be started let alone finished.

I noticed that I shouldn’t really call myself a horror writer too, as most of my stories are comic fantasy or dystopian, I think all in all there are only 6 non-vampiric horror stories in the list, about 12 vampire stories in the list, but mostly comic fantasy.

I have an idea for a sequel of a top Broadway musical, but I know I wouldn’t rightfully be able to write it as it will be an infringement of copyright and it is a shame because I really think that this sequel would be amazing.  The musical has always been one of my favourites, Annie.  I love most musicals anyway, but that one is special to me as I remember watching it the first time when I came out of hospital for the first time aged 5.

I won’t say my plans, but if anyone needs a sequel to it, please let me know – I am not a dunce, I will know if you are of genuine sources or not.  I have often thought about writing a letter to the source of the musical or current copyright holders, but not sure when I will take the plunge – as I am embarrassed, because of my health I may not be able to deliver on a strict dead-line.

Another thing I need contact from is from anyone who knows how to get my Henry onto junior MasterChef, he really wants to be a chef when he grows up, he has decided – he also wants to do a baking marathon for Children in Need next year, but I have no idea how he can do that, I can’t afford to give him ingredients for 100k of cupcakes, ha-ha, he will be 10 at the time too.

Wasn’t it amazing what Rylan did as well this year?  Henry always thought the guy was awesome, but now he is inspired to do a 24 hour baking challenge because of it, I said he won’t be allowed he is too young!  So then he thought of a specific number of cakes – though he says they have to be gluten and lactose free so I can have a couple!  Isn’t that lovely?  He thinks of his mummy?

I don’t know if it is a sign, but I have nearly finished a novel, when I get the energy back to continue it I will have about three chapters to do before I consider it done and coupled with this, I have been getting dreams.  Those dreams are of me moving house, every night I am in a different house in a new dream, what is weird is I accidentally found a house that is identical to my dream in Derby with identical surroundings in the town, specific shops and maps, it has blown my mind away about how I found that.  Thing is, I don’t think I want to leave Rugby.    I think it’s a nice little town, the people know me well like I have always been here and it is really is in the centre of everything you need in the UK – an hour from London, 45 minutes from Birmingham, 90 minutes to Manchester, it’s just a great spot to be!

I have discovered after reading several books in bed over the weeks that one of my main problems creatively, is that I overthink things.  I play too many ideas into others and eventually lose their uniqueness, I have learned to let go.  I have learned that it is ok to repeat themes in my writing in order to make things more interesting in places, but also learned that various themes can be used only once and there shouldn’t be any regret.  I have also learned that mentally I use the excuse of not having much experience in anything in life as a way of holding me back from having a life.

I am on a big learning curve right now, my mentality is changing and it is growing me.  I am also changing on a personal level – I used to be a very meek and obedient person who was afraid to make people unhappy even at the expense of it making me unhappy, but that too has changed.  I have started to learn that if I am not happy with something I will tell that person and I will try to maintain kindness as I do, but ultimately I won’t suffer anymore, not for others, especially as it was never appreciated in the past or even recognised.  I do however insist that I maintain kindness as much as possible and maintain a positive attitude, I have an intolerance for misery still, that is innate within me and I think that is in part the reason behind why I am more of a comic/comedy writer.  I know this blog doesn’t show that, as my poetry is often very dark, but my stories, when I eventually release them for the world to see, will be quite light hearted and funny – well I hope so anyway.  My poetry may still be dark and bleak in a lot of respects, because it helps release what is soaking my insides up, bad things from the past, my deepest yearnings, my tears and fears, I have to release this emotional cancer somehow, don’t I?

I never intended to be a comedy writer, it just happened.  I always intended to be a horror writer but as funny as it sounds, writing horror is horrible and I don’t like to do it anymore.  I used to relish in making people scared and feel sick to the stomach, but only certain people and now they are gone from my life I realised how neurotic they made me and how horrid they were making me.  So now I only want to make people smile, laugh is even better, inspire would be a jewel, but I would be happy with a slight upturn of the mouth from my readers and nothing more if only to make the world a bit more brighter.

(was written on the 14th November but only just got around to copying it for this blog – I have not been well, in fact the whole house has had the flu this week on top of everything else).

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Music and Me

I apologise for not posting my word prompts before noon, I got a little too excited today with a delivery I had of a new musical instrument I am attempting to play – something I can hear on bad days and doesn’t require difficult fingering for my left hand – a recorder.   

I have always been musically inclined, since a small child I would visit my grandmother and play on her piano in her dining room whilst she prepared lunch, we often visited her on Sundays, usually just my dad and I.  I would play all the notes and eventually started to learn some tunes by ear.  I never learned to read music even now I have never learned to read and understand music fully or professionally or with professional help. 

The piano was my first attempt at music, always perfect righthandedly and terrible with my left hand due to my disability.  When I was around seven years old my dad talked mum into buying me a keyboard so I can practise at home whenever I liked and ever since my house has never been without a keyboard in it.  I have never personally owned a piano and I never learned to use a pianos foot pedals or learn the proper terminologies for anything regarding music, except for one word I learned listening to classic FM radio as a teenager = Adagio means to play slowly.

I was then upgraded to a more professional style keyboard aged seventeen as a birthday present, this had digitisation to it (I think that’s what people call it), where I could hook up the keyboard to the internet and download new songs to learn, because this particular keyboard had a function where it taught you how to place your hands and how to keep time.  When I was about nineteen my brother gave me an old copy of Cubase that a friend of his owned and I learned I could compose music by using this, without ever knowing how to actually write the music.  I had saved the music I composed onto an MP3 floppy disk and I still have it to this day and the keyboard too actually!  Unfortunately that Cubase I had is years out of date and I have never been able to finance a replacement, so until I can replace Cubase, my composing days are over!

Pianos and keyboards were never my only dip into the music world; I have in fact learned to play a paper and comb, some notes on a harmonica, belly dancing cymbals, some tunes on my dad’s bugle, an xylophone at a day centre for children when I was around thirteen, some notes on a guitar but again my left hand failed me and I never did get around to replacing my guitar with a left handed version, I also played quite well an accordion, but my parents sold it at a car boot sale once, they claimed they were having a hard time and I never did get it back, I was doing better on that than the keyboard and I had rather of given up the keyboard instead. The fact I did better with an accordion stands to reason as it was a right handed instrument and the fingers I needed on my left hand could do the job properly.

I haven’t played music for nearly six years because I was ill, but also because the house got a little too crowded and messy and I couldn’t set up my keyboard in a permanent position anymore; afraid it would get damaged I had it boxed up and stored safely under the bed in the spare room and I feel that a neglected and unplayed musical instrument is sacrilege. 

Funnily enough my depression started around the same time I boxed up the keyboard.  I came to this realisation a few days ago but I knew my left hand is worse these days and I can’t improve my left handed playing at all now.  I nearly got into a deeper form of depression with this realisation but then I watched a YouTube video to stop the negative thoughts in their tracks, I stumbled across a TedTalk by a woman named Barbara Sher and the title of the video was “Isolation is the dream-killer”; I have been thinking so much about how isolated I am despite my battle to escape from it because of the struggles I had with certain people in my life a few years ago.  I thought maybe loneliness was one of the main reasons I am depressed, how can I be sure it is missing a musical instrument? 

Well anyway, here is a link to see the video for yourselves – https://youtu.be/H2rG4Dg6xyI

She put out a question that I had to think about for myself and that is “What is your dream and what are your obstacle/obstacles”? 

My first thought I don’t exactly remember, but I do remember that I had several dreams I have that are still unaccomplished and most of the those dreams boil down to financial insecurity where I have to think twice about buying a bottle of Pepsi and of course, isolation.

I browsed a book by my bedside, I think it was called “The Little Book of Wonder” and the lady who had written it said that you have to remain curious throughout your life, if you don’t know something, don’t shrug and think that it doesn’t matter and it isn’t important, if you had that question in your head, go and find the answer as it might lead you into an entirely different path in life.   

So I absorbed those words and thought about stuff and then I browsed more YouTube videos and I found a doctor of psychology called Guy Winch in another TedTalk; He said that loneliness can knock significant number of years off our life and cause us to become ill, it can affect our immune system greatly because our emotional wellbeing determines whether we are healthy or not.  This explained a lot to me, because since living in my own home with my husband and having a baby I have ironically became more isolated than I ever was before I left my parents’ house (ironic because my main form of abuse and neglect was social isolation growing up, even as an adult it was very coercive and controlling the relationship between my mother and I).  But because I had a baby and fell ill just a few weeks shy from his third birthday, I became drastically isolated after being free from true isolation for nearly three years!  In fact for the first eight months of my illness I couldn’t get out of bed to go and talk to a doctor about what was wrong! 

It was around this time I decided to never talk to my parents again too, so the only guaranteed socialising I could have done when I became sick, I cut off.  I was getting five or more phone calls per day from my mum and once a week visits that lasted six hours a time, to having no phone calls with anyone and only annual visits from my adult nephews, to then having just the annual visits ONLY for the next six years.

That isn’t good for anybody!

So I had a long hard look at my life and realised that depression and loneliness is killing me, literally.  It must be, because around six years ago I was diagnosed with a handful of different types of auto-immunity diseases and recently doctors are suspecting MS and/or neurological problems as well. 

One thing I have always been frightened of is Motor-Neurone disease, it runs rife on my dad’s side of the family and my dad’s family as a whole are very close within family, extensive family (we still talk to our cousins four times removed) but don’t socialise much outside of family and church friends or salvation army duties. 

I wondered if illness due to isolation or loneliness could be genetic on my father’s side.

Anyway, Dr Guy Winch’s video can be found here – https://youtu.be/F2hc2FLOdhI

Worrying about being isolated, too sick to socialise and the expense of joining college or a social club (because I have to rely on public transport), I asked some questions to the universe.  I asked the universe what you want me to do?  What do I have to do to change things being there are more obstacles for me than anyone else I know?  I got no answers.

Then I asked the universe that if my life was supposed to be to help motivate others, or be as creative as I can be in all creative interests I have then send me money somehow – if my life isn’t meant to be like this, then make something else happen to blatantly show me what it is I was made to do! 

So, knowing that money doesn’t just fall onto the doorstep when you implore the universe to give it to you – I tried to make receiving it easy.  I decided to (and this is no exaggeration) I decided to take a risk, I had just £15 left for my own personal treats (not the families, my own, I get around £40 a month just for me it is Paul’s rule that I treat myself each month) – I took that £15 and I spent it on 888ladies.com and I won £200, for me that is like winning 5k, I was so happy it paid off my overdraft and I could have a little to spend on a new bra and some new trousers as my clothes are getting too big on me lately.  But I thought that doesn’t change anything; it just helps my current situation without improving it so I took another risk – I said the universe, if I am supposed to learn a musical instrument and buy art supplies I will need this again or a bit more please.  So I rolled the slots again and I instantly won another £250 that is enough I thought, that is enough to get some art supplies and buy a cheap instrument – but I didn’t know what instrument to get?

This made me very happy and I decided to “Be Curious” as the book said earlier that night. 

I asked myself some questions.

What does all these musical instruments I hear on the BBC Proms sound like as solo instruments?  I didn’t know a majority of them singularly.  So I again, went onto YouTube and I searched through every musical instrument I could think of to find solo samples. 

I made a list of my favourite sounds.

Piano

Harpsichord

Jazz Piano

Bass

Trombone

French horn

Piccolo

Recorder

Saxophone

Crystallaphone

Glockenspiel

An apprehension engine

Xylophone

Harp

Lute

Cello

Accordion

Violin

And trumpet

There were others but I don’t remember them. 

Then I asked…

What musical instrument can I learn that has limited mobility to the hand?

Perhaps go back to the accordion and this time learn to read music?

A recorder doesn’t require the left pinkie to play.

A trombone

A xylophone – crystallaphone or a glockenspiel

I then thought about the types of classical music I love the most and I know that I love folk, medieval and baroque above all others! 

So I decided on the recorder first and foremost and eventually the glockenspiel. 

So I bought this recorder for me and Henry (because whenever I do something new Henry nags us to get him the same so he can share practise time with me, which is sweet and expensive sometimes)!

 

 

It was pretty cheap £16.37 each from Amazon.co.uk

It is a Yamaha YRS302BIII Soprano, plastic.  When I had decided it would be the recorder I discovered a wonderful lady on YouTube called Sarah Jeffrey who teaches you practically everything about being a recorder player, she is very enthusiastic and passionate about the instrument and makes learning about it fun!

She can be found here, this is the first lesson https://youtu.be/-d6uVjIEkMY

Until I found her videos I never knew how many different types of recorders there are and that they can all be played the same way, because they are the same instrument.  Different woods and plastic and lengths can make different sounds.  A true and passionate recorder player will have a large collection of different recorders to choose from.  I am getting a baroque alto before Christmas as I am taking to this instrument remarkably and yes, I am trying to learn how to read music now.

I have practised for three hours today and I am very tired now.  I know it is likely I will have two months a year off from practise because I am prone to very nasty chest infections in the winter that usually always lead to pneumonia for some reason.

So, there you have it.  The reason behind why I was late today.

Let me know in the comments below whether or not you are also musically inclined and share with me what you play and what you are passionate about, I would love to know!

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Filed under About my work

Art, Life, Goals and Disability

It is not just writing that has gripped me as a creative person; over the years I have tried to practise art, but never seriously and I also have an interest in wildlife photography – again, I have never taken this seriously. 

I am a self-taught artist who practises a few days every few months, so I do not practise daily and I have been doing this for the first time in my adult life since around 2012.  I have decided to change this.

I have decided after watching a video on YouTube by Love Life Drawing https://www.youtube.com/watch?v=qzhVOU47aSo  to practise art daily for just one hour per day because it is said that if you practise doing something for 1000 hours you will become quite good at it, so an hour a day will make it approximately 3yrs before I become a much better artist and to me that is enough to prompt me into action.  Three years is really such a little time.

I have never stopped learning something daily, so therefore I have the ability to continue learning new skills, some people when they get to a certain age give up learning altogether as they feel it is not necessary for them to be learning new things or because they feel that they are too old to change radically which I personally think is (excuse the language) bullshit; I am going to be thirty seven on my next birthday and I am already making radical changes in my life.

The changes are to learn how to become a better writer, learning grammar and punctuation, something ironically I have never bothered to learn before, shocking I know!  Learning math, because I was mostly home-educated and math was a weak point for my main teacher (mum) so therefore after the age of eight I hardly learned math at all.  Practising art, which is something my adult self never took seriously as well as wildlife photography – Paul is a former photographer so he is thrilled I want to take this up!  Also I have a life-long goal that I have never taken seriously and that is to learn five languages before I die, I know enough French and Japanese to survive as a tourist in those countries if I ever go on holiday abroad, but I also started to learn Italian last November.  So my five chosen languages to learn in life fluently are French, Italian, Japanese, Spanish and German.  I am on the cusp of level 2 Italian right now. 

So those are my goals, also my goal is to try and find some way in defeating my auto-immune problem or at least trying to work my way around it so I can actually get a life, a life I want as I am tired of merely existing to keep doctors in their jobs. 

I am also determined to offer myself up to medical science whilst still alive, to find a way in repairing lost hearing, because I am nearly completely deaf and I am scared of losing the tiny bit of hearing I currently have.  Recently I have lost enough hearing that I no longer hear certain beats and rhythms in music that I knew existed before and it really makes me depressed as I lived my life in music before the left ear started to fade away too.  I learned the piano by ear (no pun intended) I can’t read music; I started to learn the guitar just months before my left ear started to play up.  Music composure is another goal I always had and I have done some composing in the past; but when I learned I could be completely deaf by the time I am fifty and I was told I should learn British sign language, I decided to give up music and I don’t care about how Beethoven did just fine with his hearing loss, to me, I love hearing, I love language, I love music and it is hard for me to know I will hear less and less over the years.

I should really add a sixth language goal, to learn British Sign Language but I am afraid that the universe will take this as a resolution that I will go deaf and would make it happen faster.  Stupid I know, I suppose I should give up Italian to learn BSL but I am denying things will get that bad… idiotically no doubt.

So I have decided to post up some art whenever I make it, I will try daily, but you know me, Procrastinator Extraordinaire.  Well here is what I have done today and I want to tell you quite honestly, this is my second attempt at drawing a hand, my hand.  Paul says that hands are notoriously difficult for artists to draw and he insists I have a natural talent for hands, I don’t know what to think about that, but O-K that’s amazing!  I think my hand looks hideous on paper drawn by me, but the hand in itself is deformed slightly, my left hand has a tendon problems that leads up through the forearm and it is twisting more than just my baby finger these days and its becoming painful, something the doctor needs to be alerted on soon as Paul is terrified that if I fall over or support myself the wrong way the baby finger is just going to snap, seriously it is getting that bad!

Sorry for being so graphically cringe worthy.

 

 

 

 

 

 

 

 

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Sunday word count 3

This week’s grand total of writing towards my novels is…

2500 words to be exact!

You what?  I normally write that amount in a day!  True, true, but not this week, this week has been a hard week all round for the family.  So therefore I inevitably got to go to…

THE WALL OF SHAME!

dreaded wall of shame

Says some random booming monstrous voice from goodness knows where!

“Yes and I feel so ashamed”.  Said the author of this blog with a huffy laugh and without any hint of conviction in her words;

I didn’t get anywhere near as good as I did in the first week of doing this, let alone my minimum of 10,000 words as you can clearly see. 

Here are the words spread out throughout the week so you can see how much or how little I wrote on any one day;

4th of August – 784 words, quite bad really.

5th August – 0 words – you what?  Call yourself a writer? But the books over there look so pretty, so inviting!

6th August – 811 words – better, but not great, in fact quite awful actually, but not as awful as Sunday’s count.

7th August – 0 words – what again?  What act procrastination doth thou blame this on?  The shiny books?

8th August – 196 words – Oh you are really going to get writer’s cramp with that amount aren’t you?  Rolls eyes*

9th August – 0 words – can you have zero words?  Evidently you can, there is no words to describe how awful a writing (if you can call it that) day like this is!

10th August – 709 words – Yes, good, but I won’t praise myself too much here because this week was utterly disgusting as far as being a writer goes!

The overview is that this is a shockingly terrible week and whoever thinks they are a writer, writing like this ought to completely revalue if they are really a writer or not?

Well I would say to the over viewer (which is myself, so technically I am speaking – no arguing with myself here) is this; I am a writer, however school holidays make dedication to work difficult when I choose to write in the living room, not shutting myself off from the entire world.  Family is important to me, contrary to what certain cretins might say about that!  Not to mention that this past week I have set myself a challenge to read ten enormous books by the 23rd August, so therefore I am reading much more than I normally do and it has also been a bad week for depression; a very bad week in fact for depression.

I have a lot of worries about people that I love too.  Paul has been having difficulties this week as he has injured his arm, I found out recently that my cousin is in hospital for heart problems and he is the only cousin I can trust to emotionally support me in my time of need, the only person in my family other than my immediate household in which I trust has good and non-judgemental intentions towards me.  Also my aunt has been battling cancer for two years now and as much as people think I don’t batter an eyelid, I try not to dramatise anything about others and pretty much keep my thoughts and feeling to myself regarding their problems.  But I am finding that difficult lately and people really don’t know how much I do care about them, because I never turn their problems into my own personal dramas like most people tend to.  Often this makes me come across as aloof and uncaring, but I actually care very deeply about people who are related to me or within my social circle, more than they know, I am just not very good at showing support or love for them and I am sorry for that.  You see in the past I have been accused of being too loving or caring to the point of weirdness and then not enough and so I feel I can’t ever get the balance right, so recently, I guess I don’t even try anymore.  Sorry.  Also I have learned that someone in my family has made a decision to move far away from supportive relatives and isolate themselves and I know that they don’t socialise outside of the family at all and they are very vulnerable due to their disabilities and they are elderly and this is literally freaking me out, as I think to myself, oh my god, what have you done, you impulsive thing you, don’t you learn?  They’ve placed themselves so far out of reach for a lot of caring relatives, that if they need anyone, it will be incredibly difficult to get to them as most of the caring relatives who would help them don’t have their own transport and are on the poverty line and I have heard from the grapevine that they are not happy with their choice after all and there is nothing they can do now, the move has took a lot out of them.

Along with this, Henry has had some problems too and now we are receiving help from a certain charity, I won’t mention what the charity is and what Henry’s problems are because Paul would rather me keep that to myself, but things aren’t going well for us currently and that in itself is contributing to my depressive return; and with all of this too, I have far too many hospital appointments coming up and too many tests that need doing.

Personally I am struggling a lot with my disabilities to even write or read regularly, hence these stupid goals I am forcing onto myself – I am trying to make my life somewhat productive at least.  I might have a neurological problem other than the suspected MS, we don’t really know yet; the doctors are all on guess work right now.  All I know is I am scared of whatever it is getting worse, because lately reading and writing is becoming affected.  I am getting my words mixed up a lot and I don’t even notice it when I reread it half the time.  It could just be depression, who knows?  But I am scared.

When I get bouts of depression I tend to meditate too much to try and forget what got me there in the first place. 

Last week I watched a lot of YouTube videos, this week I haven’t even done that.  But I really should, I should force myself to watch things like the Motivational Archive when I get like this, it sometimes helps.

Well anyway, thank you for reading – you’ve all been an absolute gem to keep on reading.  I hope you all have a lovely day and have lots of fun and come back again soon.

Good luck with your own writing adventures and why don’t you send me a snippet for me to read?  I don’t read many blogs, I really ought to, and there are some amazing people out there.

Hopefully next week will be a better week?

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Sunday word count 1

I will try to remember every Sunday to post up my weekly word count towards novels and short stories I am working on. 

This past week I have added words towards one short story and three novels. This is not including writing down ideas of new stories I have planned, nor is it including research notes, blog posts, poetry or anything else – just novels and short stories.  The word count is not spectacular, but I am working on improving it.

The grand total this week is….

5679 words

Disappointing huh? 

Well here comes the excuses; this is actually a slow week for me because I haven’t done much writing this week at all in comparison to my normal writing week.  Why?

My desktop computer monitor decided to die on me for two days.

I don’t cope well with the heat, prone to heat stroke and breathing problems.

My son is off from school for the next six weeks, so my writing count is usually cut by half on school holidays.

I have been reading and researching more.

I have been learning about make-up application and have been addicted to watching Nabela Noor and Jeffree Star on YouTube, I discovered them last week.  When I gave up being Goth around 15yrs ago I never really learned how to use make up and never wore make up since and I am getting to the point I need coverage, ha-ha.

So there are the excuses, I only watch an hour of YouTube a day this past week, so it’s not stealing that much from me in regards to writing time, considering I rarely watch TV, so TV is rarely a distraction for me – I tend to watch programs whilst writing, programs that doesn’t need me to look at the screen too much such as The Proms, radio channels, or the occasional glimpse at nature documentaries such as David Attenborough or the Spring Watch team.  I lose my hearing too much at random times, so I have learned not to make my life revolve (or is it evolve?) around TV, because I often have to use subtitles and get to hear virtually nothing a lot of the time anyway.  So I have learned to be a reader/writer/researcher, unless my eyes go on me, then I am going to be OK regarding entertainment.

It is because my hearing levels are so random from one day to the next, that I can no longer keep my secretarial and classroom assistant jobs that I used to have.  Hearing loss is a big bother because I can’t do much independently regarding going to a doctor and hearing them, I need someone with me who can interpret via lip syncing to tell me what the doctor has just said, it is even worse when dealing with things on a confidential front such as banking, particularly telephone banking when online banking goes wrong – you have no idea how many companies out there do not accept a speaker on a deaf persons behalf, I am only glad I am not a deaf mute, because then I would seriously have problems.  I often have to try and talk to someone I can’t hear on a phone, hoping my husband or someone else can interpret for me as long as I give them verbal permission over the phone, my goodness, I feel for the mutes.  Especially as three years ago I had a throat infection that lead into the ears that was so bad I had laryngitis for 4 months solid, so I have experienced temporary muteness and I did have a banking problem then, that I couldn’t solve until I could speak, 6 weeks to get a fraudulent act on my online payments sorted out, because I could not voice that I gave my husband permission to handle it over the phone for me!  For 6 weeks my account was blocked because I could not verify that I gave permission, I am only thankful that my account doesn’t pay any major bills.

Well anyway, going back onto my writing I could have written a lot more if it weren’t for the interruptions, I would say as much as 16k more words and I don’t expect my word count to be beyond 10k a week whilst the school holidays are here.  I do most of my writing in the living room on a desktop computer and my son rarely leaves the room and is often loudly shouting about his robots in the robot wars arena he has made on the carpet and his robot wars videos he watched on YouTube overtakes the music I put on to get me into the mood for writing fiction.  It is easier to write poetry and research and make research notes or further synopsis’s of new stories than it is to write towards novels or short stories for competitions during the day.  Most of my writing at the holidays happens between 11pm and 1am, but Henry is suffering from some emotional issues right now which mean that my days can be very challenging and tiring by the time night falls.

When the holidays are over I write sparsely throughout the day because of my ADD and therefore I can often get 3k words done on some days.  Well anyways, the future will show and tell if I can remember about Sundays.  You will see patterns of no writing at all some weeks, because I get health problems which mean I can’t even read a book at times, such as a chest infection with a running nose, where I am busy literally every single second trying to keep myself together and alive without choking.  Sad but true, I have an immunity issue that is much better since having a radical diet change but I still get long illnesses. 

Anyway, I will update my weekly word count towards short stories and novels every Sunday. 

 

 

 

 

 

 

 

 

 

 

 

 

 

           

 

 

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