Tag Archives: auto-immune disease

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  Unfortunately that Cubase I had is years out of date and I have never been able to finance a replacement, so until I can replace Cubase, my composing days are over!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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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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Going deaf to your misery

 

royalty free image from pixabay

DISCLAIMER – 

The below poem is not meant to be offensive – I am personally a sensory impaired member of society, I am very short sighted with astigmatism and I am totally deaf in my right ear with only 35% hearing in my left ear and I could potentially lose that, considering I have auto-immune inner ear disease.  I have only learned to develop a sense of humour with the cards I’ve been dealt with in life, please understand.

 

Though I walk through the valley of the shadow of deaf

I shall hear no evil, but see a lot I might

Though I hear not the barks that scold me, I see the awful sight

Evidence of those who hate me are seen everywhere

And they sit back and they think that I really, really care

But yea, the mind is full of ego

And they shall think of themselves

I shall sit in wonderment, why they don’t put the hate on their shelves?

I wonder why every day, why they think of me?

When I have left them long ago, yet they still want to torture me?

Then I realise that those poor dears, they do not have a life

So that is why they taunt me, with curses and poisoned words of strife

They of course have an ego too, that you can be sure

That they sit around every day gossiping of the times of yore

Becoming old and bitter, making their friends think that they are a bore

By choosing to focus on the dead past, the past that makes them sore

And I sit back still amazed, that they have chosen to concentrate

On things about me, each and every day, because poisoned words always finds a way

To go back to the victim

You see that’s the side effects of your conviction

Gossip not and leave the friction

 

 

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time to start living

It is not unknown that I have a lot of health problems, in fact more often than not my ailments these days make me bed-bound with bacterial and viral infections and my left eardrum is collapsing, which could leave me totally deaf if it weren’t for the technology of hearing aids.
However, I had decided last week to restart doing my blog regularly and concentrating hard on writing, art and photography in general because I am tired of being dependent upon an insecure government; I am also bored of not being able to work away from home or volunteer anymore, but I can’t help that as I have auto-immune-inner-ear-disease aka AIIED, which means I get about a 2 to 5 days of normal health a month, not conducive to the workplace.
I will have several new sections coming up soon on this blog about Cosmic Ordering, because I am using this to turn my life around; I’ve always been a bit of a Pollyanna which is one of the main reasons I had a lot of problems as a child, so I just need to refocus a bit. I am especially interested in Cosmic Ordering and the methods behind Ho’Oponoopono because I have been told that it is likely I will need more surgery on my ear in the future, my roof is leaking, my health is getting ridiculously bad lately, I’m poor as a church mouse and… well, basically enough is enough and it’s time for a change.
I had another small pause to my blog from my previous post because I went down with a big bang with what my GP described as severe pharyngitis (diagnosed on the 3rd February) and was told that if this didn’t show signs of getting better in 48 hours I could find myself in hospital receiving treatment intravenously; scary, I am still ill as I am typing this – but not as bad as I was and I am thankful things are getting better.

 

I am trying my best to stick to my plans of the Ho’Oponoopono chant and the Cosmic Ordering guides from the Mohrs and various other people – especially my very good friend Richard Gentle who has written lots of material on the subject of Cosmic Ordering, negative miracles and crystal wand healing; in many respects it was he, who gave me the confidence to start doing this and he did this a few years ago, unfortunately my life back then was full of negative people who always undid whatever I tried to do to improve myself, that is no longer the case, in fact, quite the opposite.
One of the biggest steps to changing your life to a more positive stance and being your true self, is to leave the people who do not accept you, whether they are family or not.
So I will finish now with this post, to let you know I intend to get busy and post more often.
Thank you for reading
xxx

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recent issues

Having second thoughts about taking up NaNoWriMo, I struggle with 250 words a day these days, let alone trying to squeeze in 50,000 in a month – reason?  Migraines, frequent for months now, also I’ve been told that I am showing mild signs of pneumonia which is a worry.  I’ve been ill for weeks now and I am getting progressively worse, been practically bed-bound though for two days, thankfully I have a new laptop so I can do things when I can semi-think.

My main concern is I am unsure how the job center will react to the fact I haven’t gone to the voluntary placement interview yet, particularly as it was supposed to be for the next day and they saw me happy and healthy, but I woke up really bad and it’s not left me for almost 3 weeks now.  I am worried; I wanted to do the voluntary work too as it focuses on a charity I never heard of before but on a subject close to my heart (mental illness and mental learning difficulties and brain injuries) – hope this won’t turn against me?

I am so used to London benefit offices that I worry about every visit.  Unfortunately my husband is unemployed since the National Wildlife Trust could no longer afford him and made him redundant, this is unfortunate because I’ve always had health problems which have made problems with me keeping a job down (auto-immune problems, operations, and rheumatoid arthritis, vertigo and anemia problems as well as panic attacks), needless to say as soon as he became unemployed we had no choice but to go on benefits and they wouldn’t allow him to go on it and support the family I have to go for the interviews too.  Unfortunately even voluntary placements get funny if you have too much time off (even if you’re known to be sick), so I don’t have much of a life as far as social commitments go.

On the positive note my husband is doing home-based voluntary work for seismologists, if at the end of a 9 month period they feel he knows what he is doing he could get employed by them – hopefully the job center will be considerate about this, meanwhile he is trying hard to find work in other places but being aged 57 he is struggling to find anyone who’ll take him seriously, despite his educational and employment history being, Naval engineer, art tutor, customer services, photographer, and having an ecological degree with engineering.

I think my health problems are one of the main contributors to why I am afraid of being published, I cannot commit to anything because of it and really will publishers sympathize with a sick/disabled writer, even if they seem extremely good at what they’re doing?  I doubt it, but I hope I am proven wrong in time.

 

 

 

 

 

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