Tag Archives: disability

It’s my birthday and I hope for better things!

It is my birthday today I am thirty nine and I hope that the saying “life begins at forty” is a true one!  I hope so much that with these emergency appointments I have at the hospital etc. is going to fix something and that I can have a normal life again!

There are so many things I want to do with my life, but when it is a tiring task to just get dressed and maybe vacuum a room in a day at most, it is hard to see past that.

Things I would love to do if only the health was there… obvious one would be study and work outside of the house.  I miss people interaction and I love jobs where I am in the service of others, not just my creative pursuits, of course I love my creativity and it would be lovely to have a job where creativity is a must, but generally I love jobs where I feel I am needed and relied upon for things – particularly hospitality.  I am a lovely meet and greeter, always happy to help, with a bubbly personality, professional manner and experience as head of admin and customer services. 

I often wonder if Sue Holderness remembers me, during my short time as Christmas staff at Marks & Spencer’s she would always gravitate towards my till because she said I was pleasant and she often added points to my services as Marks and Spencer’s have a point system in play for their staff to see who is performing well.  I was only there for a few days over one particular Christmas; I doubt she’d remember me!

I used to love work and if I had been allowed to keep my jobs in the past I would have.  It sounds funny to say that, because it is not a normal thing to say – but it is true, in the past many times I had a lovely job I loved dearly, but I was forced to give it up as it didn’t sit well with my mother.  For those who are new to my blog, I was micro-managed within an inch of my life by my mother who tried to isolate me for years and I only managed to get her out of my life fully in 2013, when I was twenty nine, just shortly after Henry’s 3rd birthday in fact.

Thinking differently these days, I may not go into hospitality if I had the health back though, I have other ideas.  I am not sure if starting university for a science degree and to have a science career would be something someone my age should really consider.  But it is interesting; I have an unnatural curiosity and obsession with microbiomes; but maybe that is more of a hobby thing… like gardening?

I had thought, what I would do if I found out my health problems are actually curable even if it is by 50% – I had thought what would I do with my life now?

Obviously still write and do art, but what else? 

I had thought about the concept that my lungs may allow me to once again do music and singing again and if it did, I have to say musical theatre pulls me;  Particularly writing operas or comedy musicals for the stage.  One of the things I have neglected about myself a lot since becoming ill is my love for music to the extent of practising my instruments and composing becoming non-existent.

I miss musical composition more than I miss the idea of sitting down to write a full length novel, to be honest… well a full length non-vampire or dragon novel that is.

I do know I miss sport a lot too, I was very active before getting sick – walking an average of nine miles per day, just for the fun of it and also because I am a cheapskate and walked everywhere for the sheer economy of it.  I love bowling, basketball, jogging, and cricket and wanted to take up rock climbing, to name but a few.  But one thing I did really want to get back into and that is dog agility training and judo.  I am also a true water baby and twice I nearly got into the commonwealth games in my life, once for swimming and once for judo, but shit happens.

The commonwealth audition was cancelled due to emergency life-saving mastoid surgery, which consequently ended my judo career before it even had a chance!

The swimming for the junior games was cancelled because my mother wouldn’t let me go and stay the night away from home without her and made me decline.

I know I have to think about practical things, but I do like working for charities, at least half of my previous jobs were helping disabled people, particularly those with mental learning difficulties or brain injuries.  I have a passion for helping people and fighting for their rights to lead a dignified life!

I have been in a situation myself where I have been in special needs schools for a few months in between home schooling, I also have a long history of mental health where for four years I had to go to a day care centre at Napsbury hospital for treatment as a child and schooling as well as being in a very physically vulnerable state with sensory deprivation for nearly two whole years!  I have seen two sides of people who are supposed to be “carers, in caring jobs” and it is not all good.

I went through a time as a child where I was absolutely terrified of all men, except male relatives who were close to me, I wouldn’t speak to anyone if they were a stranger for at least ten or more visits and I went into strange bouts of bulimia, anorexia and compulsive eating throughout most of my life – this cooled off a lot when I met Paul.  I was spiralling into food obsession for three years before I met him.

It is totally weird how, now I am away from the stresses which dictated my eating habits, that I have developed a sickness where I can’t eat a bunch of specific foods without pain and vomiting and some people who remember my past, have asked me on the quiet, “it’s not your old thing again is it”?  I still maintain some friendships distantly via facebook and pen palling with some of my day care compatriots, who remembers a the time where I ate half an orange and a quarter of a cheese sandwich without rushing to the bathroom and they celebrated it for me, whilst I just sat there frowning and grimacing at the fuss and the taste.

I will say though, that I am becoming more and more of a picky eater despite the dietary restrictions I am under because of my intolerances.  This does worry Paul, because with our current budget, he is struggling to provide for me.

I must maintain a gluten free and lactose free diet, I cannot eat flax seeds, I can’t have too much sugar in a day, I minimise citrus fruits, I can’t have soy, I can’t have vinegar unless I want pain (who does?), I may have a mustard intolerance as recently I am reacting against mayo and a couple of other sauces which have mustard in, I can’t have pineapple and I can’t have anything too fatty and if it is fatty it has to be because of olive oil, I must be careful with eggs, no more than 3 times a week!  I can’t have too much coconut produce either; I can only eat small amounts of beef and no more than twice a week!  I shouldn’t have tomatoes everyday either, but that one is a hard one to surrender as I like tomatoes almost with everything!  But ideally I should never have them according to doctors.  I can only have two Brazil nuts in one sitting before strange things happen to my mouth! I can only have a beverage with tannin no more than once per day and preferably not at night. So, yes, I am not fussy about all of these, this is just the foods I can’t have because my body will hurt me a lot if I do!  Because of all of this, I have according to the doctor a very low salt diet, because I don’t add salt to my cooking and he told me I need to start, because my levels are too low at times and could account for the cramps I get!

So, as perplexed as you all are, I know you are, because I have seen the faces of offline friends when I mention this to them – what the fuck do you actually eat then Tina?  Food, to put it bluntly, proper, wholesome, mostly unprocessed food, weird isn’t it?

It’s the reason I love sauerkraut so much, the salt my body needs, the cabbage is really good for you too and you get added microbes for your gut!  Ironically, my health is slightly improved for the gherkins (dill pickles) and sauerkraut I eat these days, without that being in my diet three times a week, I would actually be a lot sicker!  I know, I tested it out for a whole month and it thwacked me hard!

I think the unhealthiest thing I eat these days is the local chippy once a fortnight, because I don’t eat their battered fish, I prefer their kebabs without the bread that is!  They have their own oily sauerkraut with gherkins and pickled jalapenos and its sheer heaven with their homemade chilli sauce!  Their meat is also homemade, so they guarantee it has no gluten and lactose and they don’t spice it as much as the places in town, so it’s just like fatty lamb pates really.

My most usual food to eat for dinner is gluten free pasta with homemade chicken arribiata, pan fried salmon stir fry or sausage and bean casserole with mashed potatoes.

My most usual food for lunch is, fried tomatoes and mushrooms with gluten free toast, a smoothie, vegetable frittata, or Ham & lacto free cheddar cheese ploughman’s sandwich with gluten free bread, I know the sweet pickle has a bad product for me, but it is so little my body hardly notices too much.   I don’t have celiac disease apparently, it is an unidentified IBD.

My most usual breakfast is, air, or very rarely cinnamon gluten free porridge or just homemade fruit salad.

My snacks are nuts, celery, carrot sticks, lactose free Nutella with gluten free digestive biscuits or rice cakes, pancakes with said Nutella or lemons or honey or maple syrup or fruit compotes, fruit, or smoothies, rarely jellied pick n mix and crisps purely for the low salt days. 

When finances improve, I am excited to ditch a lot of the above for things I really love!  Such as honey nuts, dark chocolate with fruit in, fruit leathers, chicken legs, kimchi, , king prawns and the expensive fruits and veg like avocadoes, coconuts, pomegranates, figs, chickpeas, mange tout, things someone on my budget consider birthday or Christmas treats!

Well it’s a life I hope that will happen anyhow, I am trying my best to fight through it all and get that life, even if my body does seem held bent on killing me!

Happy reading!

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A scary thing happened today…

I have had ever decreasing health since 2013, little by little my body has taken more and more of life out of me; each day there is something new I can no longer do, or I have to get used to.

Today I woke up fighting, literally, fighting for breath as I coughed up copious amounts of thick white mucus, something I have unbelievably gotten used to in the last five years and though my throat was raw, I avoided my first beverage of the day for nearly ninety minutes, because I knew it wouldn’t stay down.

I got angry with myself for being like that and knowing that this mucus will take a couple of hours to clear and it was getting in the way of what I really wanted to do, I started to move around the house, clasping onto furniture as I struggled for breath, to try and get washed and dressed in spite of it.

I noticed something I never noticed before; my mucus was clearing faster but in bigger globules and although for tens of seconds I couldn’t breathe at all, it was coming at a faster rate.

I woke up around 10am, I didn’t sleep until 5am; I managed to get downstairs by 11:25am, something which in recent months is very unusual!  I wouldn’t be downstairs until 1:30pm on average, simply because my lungs would dictate the course of the day. 

This could be a one off (I have plenty days like those), but it could also be something that could make me function sooner rather than later in the day if it is not a one off. 

I was happy that by 12:30pm I could contemplate breakfast, or rather lunch as it really would be to normal everyday healthy folks.  I felt my chest had cleared enough to keep something down – another thing which is getting more and more debatable as years go on.  I am losing a tremendous amount of weight, size and muscle mass because of the sickness.

So, I made tomatoes on toast with some black pepper corns.  I wasn’t sure I’d eat two slices of toast, but strangely I did today and I kept it down.  What is more, was the fact that I ACTUALLY MADE IT!  I washed, cut, sliced and fried those tomatoes myself with no help at all, I insisted.  Things went well but then I got a little cocky after lunch had settled down and I attempted to do more.

I decided, you can’t get decent sauerkraut from the supermarket, it has to be homemade!  I wanted sauerkraut with my chicken in a wrap and salad tonight for dinner – I had that too.  But I didn’t complete making the kraut myself.  I cut the vegetables and surprised at how weak and out of practise I was doing it and it hurt, it hurt a lot, especially the kneading of the salt into the cabbage and carrots for enough time to make enough brine for it to be storable. 

Halfway through making the brine, I broke out into a cold sweat, really bad cramping pains overtook both my shoulder blades and my heart started thumping hard and I felt dizzy.  I had to go sit down and Paul had to finish the kraut for me after he took my temperature, which was 35.3, unusually low as my temperature usually sticks to around 36.8.

The pain was quite bad but it subsided after fifteen minutes rest, I nearly felt the need to go to the hospital!

I am angry and depressed I didn’t get to do what I wanted to do today, even if I have done more today than I normally would do in a day since 2019.  My life has been completely sedentary since autumn 2019, purely because I am getting sicker and sicker.  Paul is scared, but he doesn’t take me seriously when I honestly tell him, that I personally think I am dying!

I have no proof that I am, but with how I struggle to do the little things now, it makes me wonder?

I am writing this in bed at 00:33am, the day is now over and a new day has already begun.

I have been dreaming recently of large pumpkins with white bottoms and dreaming that I am dying and being made comfortable by a strange bald headed man.  Whether or not I am scaring myself about my health that it’s making me dream such things or whether or not the dreams really do have alternate meanings – who knows?  I read up online that kabbalists take dream interpretation very seriously and it is a fine art – my two types of dreams mentioned above, both mean similar things.  It means that I am metamorphosing, changing, it’s a positive change, a renewal, recognition perhaps or success?  Medical help could be on the way and my life could change through that, or I will develop a new coping mechanism for what is going on with me?

Who knows, but if the kabbalists say it’s positive, I hope they’re right!

Happy reading!

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new working areas

Writing has been difficult in the past few weeks, due to the annoying fact that my arms are losing strength when typing and the computer desk has been too high for me to type for longer than 10 minutes at a time, without going numb.

I have become almost unbearable to live with because of my temper in regards to not being able to type or even play many online games as my arms won’t let me. 

Paul has helped massively, he has an adjustable table for me now for my laptop and that has meant I can do more things again.  But, typing on my laptop is laggy and frustrating and I make many mistakes, not to mention the lighting on the screen is very sharp.  So, once again Paul decided to take measurements for me and has moved furniture around the living room and bedroom for me.

The new areas for writing are a corner in the bedroom and living room.  Bedroom because I have insomnia and often want to write at night, but also because I get very tired during the day sometimes and often find myself upstairs.  We are planning to maybe make a change again next year; to make the spare bedroom into an upstairs living room for winter, because downstairs is far too cold! 

The corner of the living room will have an L shaped desk at the end of my art table by the end of the week, because I have become a grumpy living nightmare since I can’t work as much as I want to creatively.

Paul is doing all of this for me, unfortunately it has meant that my rabbit has been moved to live in the hallway now, because we don’t have the room anymore in the lounge. 

I will be learning on skill share soon to set up a YouTube channel and editing videos, so I will become a vlogger as well as a blogger in the near future.  I cannot commit to more than once a fortnight for a video just yet though.

I do intend, once the desk I set up properly, to do NaNoWriMo this year, because there are four books nagging me like mad lately in my head.  I am also doing inktober and I will be posting my art daily all of the month of October, with any luck!

Doctors are taking all of my symptoms as a matter of urgency and I have to admit, I am scared.  Normally, I am told that there is a two year waiting list for neurology in this area, but the doctors are pushing for me to be seen within 16 weeks.

I am told what they suspect might not be good.  So there is a lot of stress in my life right now and a lot of limitations as I am literally struggling to do everything! 

Because I am a determined and stubborn person, this lack of being able to do anything, has made me very snappy and I have been losing my will to think positively or even plan for a future to be honest.  Despite what I have said about my creative plans, I somehow feel I am just setting myself up for failure, simply because I don’t have the energy to be as consistent as I would like.  I am also scared that if I become successful in my ventures in the future, that I won’t be able to keep up with the demands of the work or the demands of my agents.  Because I am rarely able to keep up with the demands of going to the doctor surgery because I can’t wake up, or my mucus production is so strenuous on a day, that no taxi will take me to the surgery on the account of me choking and coughing so much as they think I have covid – when I don’t!

So, this is the update of what’s going on here with me and what I hope to plan to do in the future.  Let’s just hope I can actually get to do these things and let’s hope that the doctor hasn’t any real reason to worry, shall we?

 Also, my mental health has had a huge bashing over this; I am literally bawling my eyes out at the slightest thing and becoming a complete emotional train wreck!

Anyway – happy reading and I hope to write again next week at some point.

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Update on whereabouts

Where have I been again?  You may well ask, originally I couldn’t type for around 3 to 4 weeks because I somehow injured my hand, I still don’t know what happened to it.  Woke up one morning and couldn’t use it, it was so painful and I had to even change my diet to accommodate a spoon fed way of eating. 

I couldn’t use my other hand as a substitute and go down the route of cutting things with forks, because that hand is permanently disabled and doesn’t work well due to being deformed. 

I then caught a very bad head cold that made doing most things difficult and then a chest infection.  During the chest infection something then happened where my shoulder and arm lost its entire strength and I was lopsided for about 2 weeks, as there was a noticeable slack to my shoulder muscle. 

I gave up trying to do anything to the blog after all of this for the last 3 weeks because of the summer holidays and everybody who is a long term reader here knows how difficult I find working with Henry home as there is little support in keeping him out of my hair.  Not to mention, that Paul is also badly injured, so couldn’t take Henry out for walks and hiking like he’d usually would.  He has an Achilles problem we think, it’s hard to tell as he won’t see a doctor about it.

Henry starts High school for the first time on Friday and he is dreading it.

Henry has been having a lot of emotional problems in the past couple of years, quite serious anger and depression issues, but school so far has poo-pooed this as being something caused primarily by Covid isolation, but it was something that was building up around a year or two beforehand.  Since Henry was eight years of age, he has been having suicidal thoughts and that unnerves me because I have never ever known anyone as young as that to be that depressed and is not trustworthy enough when he is angry to be around sharp objects!  There is surprising little support about this primarily because of waiting lists and Covid didn’t help with that.

Until Henry actually attempts to physically harm himself in a manner of which can be officially proven, Henry is not considered an emergency case, even if he does punch himself in the face and chest really hard, because the bruising is not sufficient (whatever that means) he can wait.

Henry’s life, I admit has not been an easy one, it is no wonder he is growing up to become an angry and bitter soul.  He is a member of Warwickshire Young Carers because he has me (a sick mum) and a sort of elderly father.  Though I impose no care routine on Henry, school felt that the young carers could give him emotional support because his mother’s health and future is uncertain.

Along with this, Henry has experienced a lot of death in his father’s family and the majority of family communication from Paul’s side has stopped because certain people have passed away or they have their own illnesses or problems and cannot commit to visiting more than once a year on average.  In Henry’s small life, he has heard of nine family deaths, and four serious family illnesses.  Four of the deaths affected Henry directly because three were his main child carers when I went in and out of hospital.  There is no one we can rely on for that anymore, so basically I have to skip hospital appointments if they coincide with Henry’s holiday times.  A family friend also died of Covid recently.

Along with this we also have a problematic neighbour which makes Henry nervous to go out into the garden anymore, in fact, so do I.

I’d like to move but Henry doesn’t and Paul respects Henry’s wishes on that.

Because I don’t feel safe with this excessively nosy, rude and obnoxious neighbour, Paul and I have planned to get a dog.  We did organise a border collie with a farmer, but the breeding went wrong and they only had 2 pups which survived the birth and we have to wait another two years.  But luck has it that we may end up by Christmas with a bloodhound, because a local man wants to give away a couple of his pups to a good home for free and he said he won’t want them to go before they are 6 months of age.  It is likely to be a female bloodhound and a solid colour, very light brown or as the man calls it, yellow.

In the past I was very skilled at training dogs and was once offered a position as a police dog trainer but my mother made me turn it down, because I have to bring my work home with me and she didn’t want extra dogs in the house.

A bloodhound will be a new experience and I have done a lot of research on the breed to see if I can cope.  Physically maybe not, but if all else fails you can walk a dog with a disability scooter, lol.

But I think… though Paul disagrees and thinks I am way too optimistic…. That I am only as sick as I am because I am not motivated for doing things for myself.   I live for others; I have never lived for myself.  Paul has always endeavoured to take a lot of my responsibilities away from me because he wants to indulge in caring for me and also Henry.  So Paul doesn’t need me and neither does Henry, every time I try to do something for either of them, someone else takes over.  I guess that’s why I am so sick, it’s a form of depression – I don’t feel needed.  I don’t feel I would be missed.  I have absolutely forbidden both Paul and Henry to do anything with the dog if we get one.  Because I think, I need that needed feeling back again and I think a dog is the answer!

I am trying to find new ways to feel needed.

I know I sound like a sad bugger saying all this.

But I need to try to find something that makes me feel that I have some value.

So, I have a webcam and mic now – I am researching skill share and other things about how to set up a YouTube channel and how to create an art and writing business.

I am hoping to start the YouTube channel by January 1st, perhaps sooner; I don’t know how long it will take me to learn all this technological stuff to do it.

I’ll keep you posted.

Thanks for reading!

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Mental health update 26th May 2021

The thing about mental illness is that it grabs you and sometimes even the sufferer doesn’t even know why or what caused them to cry at that precise moment.  I have been having times like this a lot over the last few weeks, but in the past couple of days in particular it has been really a big struggle.

For the first time in almost two years the suicidal thoughts have come back, but along with this is a reasoning thought, that if I were to try and commit suicide right now, I am likely to be saved and therefore my life would be worse to live in the aftermath because of whatever damage the attempt may have done to me, I would then have to live with along with everything I am trying to escape from.  I am already under scrutinised watch, because of my past breakdown a few years back, so it is quite probable, that I will be saved – whether I like it or not.

I am in the situation that I know why I feel this way, but I really don’t have anyone to talk to who is not going to be conflictive with me about those matters to talk it through with.  I am too deaf to use a telephone helpline and I don’t really have enough privacy to talk about matters online.  I barely have the privacy to type this here now.

Well, Paul knows how I feel, but he is painfully irritating with his responses and usually end up making me feel worse, he isn’t the sort of person you can rely on for too much emotional bolstering or betterment.  He knows I think this way about him, and yes, it does put a strain on our relationship – especially as I try and tell him that he shouldn’t feel emotionally responsible for me despite this.  But he always proclaims that he does anyway and how could he not? 

He is in denial of his own depression, I know this, because instead of trying to help me see the Brightside of life or help me take my mind off things, he is one of these people who will wallow with me and we both sit there in our pit of despair, talking ever deeper and concentrating ever more on the crap that’s in our lives – that’s not a place of healing.  Alternatively on his more positive days, as he does have them occasionally, he will talk to me about stupid dreams of “if we win the lottery” or “if we built our dream house”, those conversations helps him in his dark times, those dreams, but it just makes me a whole lot worse!  There are times and I am sure he knows it by the looks I give him, that when he talks of me of those big pie in the sky dreams, that I just want to take those dreams he talks about and shove them down his throat.  Because, who wants to be reminded of things that are unreachable when you are in a time of struggle?

My problems are not primarily financial, that is something he can’t get his head around, I think.

My main focus is the lack of love, the lack of attention, friendship and family.  I am also very sick and I am tired of that, I am tired of constant pain, constant illness and no one to sit there and snuggle with me for more than just five minutes a time, because no one has the time.  No one has the time for me.

I talk about this to Paul, but he is so exhausted all of the time and struggling with his own injuries and pain as he is my main carer and Henry’s main carer and the household carer, that when I do talk to him, within twenty minutes he has literally fallen asleep during our conversation and wakes up with a jerk when I probe him about it.

I know I am a selfish cuss, because he struggles to balance everything for me, but he really could help himself a lot more by communicating with people who are willing to help him, but he doesn’t.  He just plods along doing all of this and coping with all of this on his own and I do literally nothing.

He is 27yrs my senior, I am terrified of how I will live if he dies.  That’s how selfish I am.  I do love the fellow, I do, but I am shit scared of what will I do if he goes?

I can’t do a thing for myself these days, on an emotional and mental health level I could barely anyway, but now the body is falling apart, I can barely even cook for myself these days.

We have no one.  We only have two adult nephews who visit once or twice a year and that is all.  We have nobody, not even a reprieve of a friend who’ll come to tea anymore.  Not since I have got too sick to reciprocate and Covid has made socialising with professional’s non-existent now.

I am ultimately desperate for two things, to move out of this house into a house that is not riddled with rising damp and holes in the roof and the ceiling literally falling apart in some rooms and I am desperate for more love and attention, especially long snuggles!

Oh I could add a third, to have a decent allergen free diet on a consistent basis, not having 2 weeks of feast and 2 weeks of famine in every month, which is how we live now.  Well, I say we, Paul and Henry eat properly, I don’t, because I am the one with the intolerances.  Gluten, lactose and occasionally egg, flax, pineapple and a few others; Gluten free foods are fine if they don’t contain flax, but most do.  My body can’t cope with chocolate more than once a week either, or beef and my body can’t cope with a high fat diet, which makes things very difficult on a diet front these days.

When I went through a phase of anorexia as a teenager, I actually ate more then that I do on the famine weeks in the month and that scares Paul, but the doctors don’t batter an eyelid.  I am still overweight you see and I am nearly a woman in her 40s.  They don’t take the food problem seriously – if I had been 8 stone, maybe they would!

Yesterday all I had eaten up until 5:35pm (the time I am writing this post) is 1 slice of gluten toast (because we are struggling with finding decent gluten free locally in the past few weeks) and 3 slices of bacon.  Later I will have a cereal bowl size of tuna pasta with new potatoes and herbs; the pasta is at least gluten free.  Because of the toast today, it will mean tomorrow I will wake up coughing up phlegm for an hour and my asthma and blood pressure will be bad.  But I needed quick food; I was feeling light-headed, shivery and headachy.

The food wasn’t ideal and I feel sick since, but I was hungry.

Anyway, this is just another bad day for me and I needed to get it off my chest.

Maybe tomorrow will be different?

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What I am trying to do as from now…

I am more than a little irked at the concept that my followers could have been scammed or duped by a poser; I had not planned to start writing on my blog or become active on social media for another couple of months, because I am taking a long time to heal from a current chest and ear infection.  I am very ill at the moment to the extent of being permanently exhausted. 

However, I think that I should start again right now, when I am at my worst physically because it seems likely I am having more bad days than not and I am sick and tired of being sick and tired and not doing what I want to do in life, even the most sedentary of things.

I often struggle with the idea that I must always produce a poem or a short story for my blog, because this blog was created with creativity in mind.  I was meant to use this as a portfolio of sorts; for my creative writing, photography and art, instead it has become more of a journal.

I think therefore, that this blog is likely to be 50/50 journal and creative outlet.  Because I am going on a big journey spiritually, physically, mentally and hopefully career wise too.

My blog will show you more of me, my personal life, my art, my thoughts and feelings and I will try not to be too bias when I do so.

A lot of my day to day stuff will probably be talks about how I am trying to manage my mental health and disability whilst trying to be a productive creative and housewife/mother.

I will also talk about my medical journey, because it still is not entirely clear what it is I have, other than it seems to the doctors that I have around 4 different types of auto-immune disease, deafness, PTSD and potentially a serious neurological disorder too, which they are leaning more towards MS on, but irritatingly it has not been thoroughly confirmed yet.  Sometimes they say yes, sometimes it’s again, no, it’s all presumption by my GP because I haven’t been tested yet.

I will talk about my past, if I feel it would be therapeutic at the time to do so.

I will discuss life with my pets and gardening, what little I can do there.

I will discuss most aspects of my life, whilst throwing in my poetry, songs, compositions, short stories, art, snippets and advice.

I am working on far too many stories at once, most of the time.  I am also practising art, because I have an idea for a children’s picture book and I have also two ideas for comics.  I don’t buy the fact that the comic industry is dead, sorry!

I have also learned recently that there are many people who like reading my reviews; I have had so many requests for reviews recently that I have considered to be more proactive in that.  But I tend to review old stuff, because I am pretty slow to reaching out for current social trends.  To me, something is a current social trend if it has been published or bought out within the last decade.  Oh dear, well you see what I mean – non-fiction science aside that is.

I am one of these lame people who love the 50s & 80s and are waiting for a huge retro bash that will last a decade or more in fashion, movies and music.  So you won’t find me any time soon, sporting the latest trend of anything that is currently major, if it is not retro based. 

Personally I feel the best decades for fantasy were 1860s, 1870s, 1890s, 1950s, 1980s and 2000s, 2010s;  I am a huge Lewis Carroll, George MacDonald, Frank L Baum, J.R.R Tolkien, Terry Pratchett, Neil Gaiman, Susan Hill, Stan Lee, Tim Burton, Stephen Spielberg, The Frouds, Colleen Doran and Neal Shusterman and oh so many more I better stop listing them=  fan.  This was just fantasy; don’t get me started on horror, Sci-fi and dystopia and lets not be picky between artists, writers and directors either! 

There is a lot of people I have missed on the above list that deserves to be here!  This is how I know; I really can’t sit back and say I have no idea what I post for my blog.  I was just being too picky about what I should put.  I didn’t think I should really put reviews and personal feelings towards other people’s work on my blog, but you know, if it keeps the blog active, then maybe I should start?  At least it will give you an idea of how I became who I become; the kind of things that I devour for my hungry creative soul that made me produce, what I produced.

Until next time, happy reading!

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A tardiness update

Hello everyone, long time no writes, I know, sorry about that!

I want to say that I have been having a lot more infections than usual and a lot more chest and breathing problems which are not Covid related; I have not been infected with Covid luckily.  I have completely self-isolated since March 2020, I have only left the house twice in that time for dental appointments – I have been scared of Covid especially as I have a history for chest infections and pneumonia anyway!

Other than dental appointments I must admit I have steered clear of all doctor clinics and hospitals because I think that if I go, I am more likely to get infections – now this is frustrating because before Covid the doctor could care less for my health problems and whilst Covid has been a factor I have had to turn down huge amounts of appointments because the doctor is now ready to try and solve them… it is like the world is conspiring to trap me to get Covid lol!

I think there is one good thing about the fact I was isolated all of my life by my mother, that is, Covid19 isolation is literally a doddle for me as I have always learned to cope with what I have and make the best of being at home.  But it is also deeply depressing that again, I feel like the world is conspiring to keep me cooped up for all of my life!

I have mental health issues because of my past and so many people have been concerned for how Covid isolation may be affecting me mentally.  But they don’t understand that it is normal for me, I have been so used to it for so long that it is second nature.  So unlike the rest of the world that has always had some kind of freedom, I don’t go stir crazy just because I can’t leave the house for a time.

Staying at home or even cooped up for prolonged periods inside a single room really doesn’t bother me as long as there are things I can do.  If the room was empty, that could be a completely different matter, I may go crazy after a few days, but I would make do with meditations, visualisations and if I were not causing trouble to do so, singing and reciting poetry etc. 

The thing with me is, imagination is easy.  Imagination is my friend and I have learned to harness it on command for any situation.  I do meditation and visualisation so well, that there has been times I have been hungry and I have visualised eating a meal and I have come out of meditation not feeling hungry anymore!

It’s amusing really that I am overweight; when I consider that I can do this.  But I will be completely honest with you; I am overweight for only three reasons.  As part of the abuse I have been victim of, a large part of that was being fed constantly, my abusers were feeders.  I have lost a huge amount of weight since being away from them, but not enough to be of healthy weight.  Secondly, I am addicted to caffeinated sodas such as cherry cola and Pepsi, but still, not as bad as I used to be.  I have gone from a 5 litre a day habit to only 1 litre now -still trying to fight the addiction.  Third reason – the biggest one of them all is.  I lost a majority of the weight I had because when I moved in with Paul and got away from the abuse, I started to religiously walk 9 miles per day and I that was doing the trick with normal eating.  Since becoming sick back in 2012 I then walked only twice a week for about 2 miles and since Covid I walk nowhere at all, except around the house.

In my humble opinion I need to lose a lot more.  I have tried to go on a diet, but diet alone is not working at all.  I have stuck religiously to a diet for 3 months and I haven’t lost a pound!  It’s only going to go via exercise, which this body just can’t cope with right now.  Every time I try to exercise I get weird symptoms of lower back shakes and unsteady shaking legs and hands.  I am residing myself to the fact I can’t garden anymore, not for longer than 15 minutes a time.

I have to make do with trying to think about what I want to do versus what I can realistically do these days.

I love gardening, but short of sitting at table with pots, that is something I can no longer do the exact way I love the most – which is to kneel down with my hands in the dirt, pulling and pruning and chipping and replanting from ground to ground in true food forest garden fashion.

I have to reside myself to the idea that someday, if I get a little money, I can get someone in to pull my whole garden out for  me and make me hip high raised beds with seating around them, so I can sit and garden the lame man’s way.  Sorry, but to say I don’t feel bitter about not being able to do it the usual way, would be a lie!

My disabilities are affecting my creative crafts too sometimes.  Hand shakiness (presumably not Parkinson’s) are sometimes affecting me using utensils when eating as often as once a week, as well as hand cramps and so therefore drawing and painting on those days is a no go. 

My writing can sometimes be affected on bad pain days; sometimes pain is so bad I misread things, miss-type things, mispronounce things and even have spoonerisms coming out of my ears!  Hand shakiness and pain can affect how much I read in a day too as well as depression.  On a good week without much pain or shakes I can read about three books, if the depression isn’t there.  I think I mentioned this before.  You can more or less tell how I am doing by how much I am reading on Goodreads.com

But don’t be overwhelmed with sympathy for me not getting down to my art and writing however!  There are other factors besides health which leads to my tardiness – the phases I go through.  I tend to find it hard to narrow down precisely who I want to be.  So I go through weeks at a time being so involved in one thing or two and then move on again. 

For example; Between October and April, I have got into the phase of watching around 3 hours a day of YouTube videos from people who are homesteaders and food forest permaculture gardeners, as well as food preservers and artists.  February and April 2021 I have gone through another spiritual soul searching phase.  I have read books based on spirituality and cosmic ordering and I have been thinking about my self-definition a lot.  Since the start of April I have re-established my love for The Sims 4 and have been playing that daily for literally 6 hours a time.  Disgusting I know.  But I have still been practising my art approximately 3 days a week for an hour a time, which is becoming a record now, because that too, used to come in phases!  If this is an unusually long phase, then I have been in this once since last summer!

Writing is on a severe back burner, I am writing about 90 minutes three times a week since March, whereas I wrote a lot more, before then.

On a very positive note however; my art practises are for the very reason that I have decided to make a children’s picture book series and I am practising my art to get the same characters right in several different poses.  Now I know, you are all thinking that I am not a children’s author and that would be very true!  But something happened in my mind, where I just have to have this children’s series about a dragon in true infant picture book form.  I don’t know why this is happening, but I am going with the flow!

But I will tell you now; my main genres are dark fantasy and dystopia that will never change!

Until next time, thank you for reading.

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Reality is hitting home

Paul and I have agreed that I can’t write like how I used to anymore because I am just too tired and ill a lot lately, especially with sleeping problems occurring. 

So, it has been agreed to cut my usual word count down by a thousand words per day.  Making my word goals 2k a day, because I am struggling to get past 2500 words and I am finding myself in consistent writing debt of 400 to 1350 words on a bad day. 

Like today, I was meant to write no less than 4458 words before tomorrow, because yesterday I was lagging behind as my auto-immune condition has decided to step up its game.  So today I am even worse and needing to go to bed again at any minute (it is nearly 6pm) and I am only just at 2300 words today – so the debt tomorrow would be even greater. 

Before all this crappy ill-health stuff started to happen I would easily vomit out 3k to 10k words per day, depending on how much time I had spare to write.  I felt that I could force myself to fart out 3k a day as an average but I think I have to sit back and realise I am not as healthy as I used to be and I have to learn to manage my health and disabilities better, instead of literally flogging myself to death, just so I don’t – whatever… You know, right? 

I am exhausted emotionally and physically a lot of the time.  I think I have to reside myself to finally realising that I am never going to be how I used to be anymore and I should just learn to make do with what I can do.  Stop pushing myself as hard, especially as stress can make your health worse, I already have enough stress I can’t control, and I may as well cut out the bits that I can.

Not only this, but I am starting to resent my writing today, because it is taking me around three to five hours to do my goals and that meant that my time for other things, such as reading, playing games and just chilling with my family was getting less and less.  So I can’t start resenting work I love doing, because that is not good.  I need to always stay in love with my writing and art, since I found out I have fell in love with it again.  Writing should be a pleasure, not a bind.

I have just got to manage myself better around my illness, better than I have been doing.  I have to start being kinder to myself; as I have been a right bully to myself recently.

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Health update & cataloging books

For the next few days I will be cataloguing all of the books in this house (with maybe the exception of my son’s bedroom as I want to live till the end of the week), to put on Goodreads.com as there has been some debate from some of my reader friends about just how many books I actually own because according to what they see on Goodreads I don’t have much.  Well I only used to add those that I bought at the time I have been a member of Goodreads, not all the ones I had before I became a member of the site – so, apparently I have to prove my hoarding addiction to the world – lol.

So that is my challenge for the week and it is back breaking!  You’re probably laughing your heads off at what you think is an exaggeration, but for me it is a reality.  Being bed bound sick for the last 7yrs has severely weakened my core that even standing up for more than 15 minutes at a time is very painful.  I think the diet I have been doing for immune boosting is working, because I am having more days out of bed, in fact I haven’t had a full day in bed since around the 21st of January.

I still need to go back up there regularly, but I am definitely seeing an improvement.  I am also taking extra vitamins with it all too.  I am not losing any weight, in fact gaining it – which is disturbing for me, because my calories are less.  Sugar and fat content is less, food is more nutritionally dense than before and I am slightly more active than I used to be.  It is puzzling why, I have the weight gain.  I am eating approximately 400 calories a day less than I did before these changes and I am doing more around the house, I am now able to care a little for the rabbit and even make snacks and lunches whereas I hadn’t been able to since 2016.  The weight gain is only 5 pounds, but it is freaking me out – somebody suggested my insomnia could be a reason for it, because your  metabolism is determined by your sleep patterns, not sure what to think of that!

My sleep patterns are all over the place.  I usually can’t sleep before 5am and sleep 9 hours a day on average, sometimes I need 13 hours, don’t know why.  I hate sleep, I really find it a time wasting thing and I resent that I need more than the average person because of my infections, arthritis and so forth.  I am trying to force my body into a sleep pattern, by forcing myself to wake up by 10am regardless of when I slept the night before; I started doing this 3 days ago, and last night I think my body decided OK, I will sleep now and the last time I saw the clock it was 02:10am, so I think it’s working a little.

I am really trying to discipline my body.  I am pleased also that whatever is happening to my body, I am able to do around 15 minutes of exercise before getting really tired – it’s a big thing for me, because as I said, I have hardly been able to move for a few years and all of this has happened much quicker than I thought it would.  But all in all there is not a massive difference in my pain levels or infections. 

I’m just trying to force myself and it is torture, I will tell you.  I need to get back to my athletic self again.  I used to be very athletic, I was always up and doing things and loved sport and I miss it so much!  Honestly, this was NOT a lifestyle choice for me, I genuinely became too ill to move and this is why I resent people who think they know about overweight disabled people, people like Anthea Turner!

I have been the victim of disability discrimination and fat discrimination for the past few years and I have seen the worst of humanity – it is especially prevalent with doctors who should know better!

Let’s pray you assholes who fat shame and hate on disabled people are never put into a situation where you are injured and sick enough not to be able to move and that you get fat too and get karma kicking your asses like you would deserve!

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Research what your doctor diagnoses you with!

As someone who has had pneumonia once a year for the past 5yrs, I was told when Covid19 came into the world that I should consider never going out as I am on the very vulnerable list especially as I have other health issues on top of it all and Covid19 as we all know is known as a super pneumonia! 

Being used to isolation since childhood, it seemed to me to be a doddle of a thing to accept.  But it is frustrating, because I was just starting to get my life into gear and I am starting to feel that this is some kind of curse my mother has put on me.  I know it sounds ridiculous because the rest of the world has it and surely she can’t have cursed the whole world?  Of course I know that is nonsense, but it still crosses my mind a lot!

How ironic that this has happened just as I am free from her isolating me and shutting me away?

Well anyway, Monday was the first time I went out since the first ever lockdown in the UK, because I have dental issues that need to be seen to and I am due to have an IV treatment for my teeth in February – coincidentally today I have woken up to feel as though my chest is bruised and I have a cough and a cold on top of my usual respiratory problems.

A few days ago I started getting into the habit of making smoothies, particularly green ones, because I wanted to boost my immune system for when I have my tooth seen to in a couple of weeks’ time; when I get a cold and a cough like this after being on a really super rich high vitamin and mineral diet for the last 2 weeks, it makes me wonder why I bothered in the first place?

Surely I would be stronger by now?  But no, I have a cold or something…

Well anyway, desperate I am to find any recipes for immune boosting so I found something called Goot, made it myself, lemons, turmeric, ginger, cinnamon, apple cider vinegar, garlic and honey, going to take 2 spoons 4 times a day to see if I get better any sooner than I would normally – which would normally be around 3 to 5 weeks’ time – a lot of colds and flu turn very chronic for me and last up to 6 weeks on average at the chronic level, something doctors could never understand!

Well anyway, a few years before I met Paul, I remember being diagnosed with pernicious anaemia, but nobody explained to me what that meant so I presumed, much like my mother did, that it just meant really bad anaemia – well Paul after hearing me reminisce this, decided to research it to find out it is an auto-immune problem which can make absorption or development of vitamin B12 very difficult for me, which would explain the neurological problems I seem to be developing!  I have been living with pernicious anaemia for a little over 15yrs and no one told me what it meant or treated me, no wonder I am falling apart!  I have also been diagnosed with and untreated for 17yrs with rheumatic arthritis!

Pernicious anemia can severely damage your nervous system and digestive system over a course of years if untreated, it is an autoimmune disease which can make you severely malnourished of certain B vitamins!

So because I am scared to go out unless absolutely necessary because of Covid19 I am waiting until things die down a bit so I can tell my new doctors here in Rugby, Warwickshire about my health past and how I have never received treatment and see what they got to say about that!

I think perhaps this is what my doctor meant when he phoned me a few months ago about a medical review, because I gave him a list of symptoms in an email and he was concerned and said he is going to look into my files etc. about other things and see if there are links – but I never got back to him!  Perhaps he has seen my medical records and understood I am not being treated right!

My doctor knows that I have suffer from chronic anxieties at the best of times and I am very OCD, so getting me out of the house unless it is an utter emergency during covid is going to be a huge challenge!

Just thought I say this to update you all!

Hope that the UK takes lockdown seriously this time around so I can get my health back into check by keeping to my appointments and investigations!

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