Tag Archives: illness

Munchhausen victim

Trying to be bright and happy is a hard thing to do

When you are ill and ailing and feeling very blue

I put a smile on my face for all the world to see

How my smiles lie to you, you have no idea you see

I learned to lie awhile ago about how I truly feel

Because if I didn’t do it, I would be stricken ill

You don’t understand the metaphors or words I am using here

And I don’t expect you all to; you’re all such lovely dears

So I leave it all to the imagination and a clue is in the title

It is a representation of my past, something you should know it’s vital

So now I will end my poem, opening up your minds

I hope you get the message; getting someone’s understanding is hard to find

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A plan, lost time and mindless jealousy

Going back to my post about social media from the other day, I have decided today to make a list of people to watch on social media to try and make me more social with the people I love speaking to and getting replies from.  It will help me manage things better, I am a person surrounded by endless lists for things because my illness can make me too preoccupied with trying to manage my symptoms such as coughing mucus several times an hour and that sort of thing, that I can often forget to do important things such as drinking fluids, eating and even socialising.   

Paul has suggested in saving up to get an Alexa for me, so that it can remind me every half an hour to take a sip of my drink because it is becoming a big problem for me and he thought as well that this can remind me to eat and even socialise.  I sometimes go two weeks between reading emails too, because on bad days (and I am getting more and more of them) two weeks can feel like two days to me, there are times where I haven’t spoken to my favourite cousin online for six months, but to me it feels like two weeks, when I look at the last time stamp I apologise profusely for the time span between our last chats and overcompensate by talking for three hours when I do finally get to contact them again.  It is bad to consider that I make more posts for my blog than I do in contacting people I know in reality.

I really do lose such big chunks of time because of my illness, I go into a groundhog day whilst the entire world moves on and have normal different days and they get to partake in the events of the future whilst I am still struggling to breath and thinking its Sunday.  Henry comes into my bedroom to shake me awake as I am too deaf to hear him say good morning until I put my hearing aids in and I ask him;

“Why are you wearing your uniform on Sunday”? 

“It’s Thursday mum” he says.

“Oh that happened quickly”, I say whilst trying not to fall back to sleep.

But a lot of the time I don’t go back to sleep for twenty minutes because my chest needs clearing and I have to go to pee, but it is a struggle to get there whilst choking and I have a bucket midway between the bedroom and the bathroom because I often choke so bad I vomit.

On bad days those coughing fits don’t calm down for nearly two hours before I can rest again.  It is difficult to be like this when my personal doctors surgery is only opened for 8am to 4pm every day and they prefer to use after 12pm as emergencies only – I never really had a planned appointment from the doctors because my personal GP rarely works the emergency shift and if I want to see him I need to wake up around 5am just to clear my chest, get dressed and eat then rest for an hour after eating just to get to see him for 10am, they are aware of this but I am sure they think I exaggerate!

If I get the flu it lasts for 4 to 8 weeks on me because by the 5th day it always turns into bronchitis and by 2 weeks it goes into borderline pneumonia or pleurisy, doctors are worried by this, it is happen too often and I am showing signs of antibiotic resistance too!  

To all those people who work full-time and hate on people like me who rely on benefits to live and often say venomously how they wished they had my life sitting back watching TV all day instead of working – well I beg your pardon, most of the time I am too deaf to watch too much TV because of severe ear infections and I can’t hear music either during my bad days, all I get to do is read or be online and sitting at a desk is tiring, so you want my life huh?  You can have it if I can have yours!  I’d love nothing better than to work if it means I get great health with it and a great social life!

Welcome to my life for the last seven years, pretty isn’t it?  Yes, please do be jealous of this so-called lazy fat bitch, because my life is great isn’t it?

 

 

 

 

 

 

 

 

 

 

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I try to (for Henry’s sake)

Although I seem to rot away

I try to stay so bright and gay

To help your miseries stay away

I hope that someday pain will allay

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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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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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Filed under About my work

Ugh, flu season earlier than expected by 2 weeks

Woke up today feeling really ill, yes the flu season is upon us but it hit me earlier than I expected, anyway, I forced myself, literally forced myself to write for NaNoWriMo and 750words.com today, the internet has been tetchy off and on today where I thought for a long time that I won’t be able to add any updates to any website too, so I really did feel the fates were against me today, but I pushed through willy nilly and I managed to do both my 750words and 2191 words towards NaNoWriMo – take that, negative vibes!

According to the NaNoWriMo website, if I continue to write as much as I am doing, I should be finished by the 21st November, now how’s that?

Hope things don’t get worse!

 

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750words.com & updates

750words.com is a highly recommended website for anyone who wants to get into the habit of writing and who might have or might not have read the book “The Artist Way” by Julia Cameron.
I found this site through twitter yesterday and so far I’ve written two entries. Needless to say I hope that I will write more regularly with the sites help, but we all know what a huge procrastinator I’ve become. I am not even reading as much lately, why? Illness makes me want to do mind-numbing things to help me cope with pain, I play very boring, and tedious games to keep me occupied and this has took up a lot of my time for creative pursuits. On the up however, I have discovered that my illnesses can be linked to childhood medical neglect by my mother, because she had a stand up argument with my ENT surgeon when I was 5yrs old about me not having my adenoids removed when I was having my tonsils out; her motive for that? Nobody knows, but I had a CT scan last month and got the results Friday evening and that claims I have unusually large adenoids, so I will be having surgery before Easter to deal with it. The doctors reckon that I won’t be ill as often as I have been all my life once the adenoids are gone; in fact it is the adenoids that have caused the damage to my ears by causing blockages. It is also a factor in my breathing troubles for the last 3yrs.
If this does seem to be the BIG thing that’s made my immune system very weak for the last 28yrs then I am very excited to go through surgery, because that means I can finally have a normal life.
I’ve been living with ear-ache, rhinitis, severe migraines and sinus headaches for so long; I have literally forgotten what health and no-pain feels like. I have been suicidal for the last two years in particular because the condition had got so much worse for me and I was literally thinking about an easy way out of all the pain I go through.
I am ecstatic that I can be there for my son’s future and that we can have a normal family life soon, without mummy being bed and housebound because she’s always ill.
So 750words.com go there, write 750 words a day, see what words you overuse and enjoy yourself. Hopefully I will have more regular postings, but until the operation who knows when that next post will be?
The games occupying me lately have been…
Ovipets.com (not entirely brain-numbing or boring, but certainly time consuming and social)
Pirates; tides of fortune – was fun, but makes everyone’s computers lag and is a money pit, meaning that when you spend your money on the game, you lose half the things you buy when you are raided or go on special brethren missions. I lasted this game for 10 days, but I am not going to bother to play anymore because that is time consuming, slow and personally far too expensive!
DeviantArt.com – OK not a game, but time consuming anyway because I browse the pictures and imagine scenes there, which I should really turn into stories!
Pinterest – similar to DeviantArt for me
And various Gothic, horror and fantasy groups on facebook!
Not to mention “The Rugby World Cup”.

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I need out of this painful shell

Morbid as it may seem, death to me is a dream

A way out of this painful shell, away from this constant Hell

I cannot make you understand

I cannot see that life is grand

When it’s accompanied by agony, hatefulness and tyranny

You see the end is best for me

As there’s more to pain than you can see

I need to go where I am free

From all this pain and verily, I am ready to go to sleep.

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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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