Tag Archives: illness

Meningitis watch

My Henry has been sent home from school and thankfully Paul actually took him to the doctors immediately today because the doctor said that Henry is showing some early signs of meningitis and so he is off school for the rest of the week for meningitis watch!

Scary stuff!

He seems ok, a little headachy and stiff neck and dizzy spells but other than that there is no fever yet or rash, so we’re keeping watch on that right now.  He has had a headache since Sunday evening but Paul put it down to the fact that Henry is on the computer all the time and declines to wear his much needed glasses!

So to say I am a little frightened is an understatement!

A lot because I am his mother and I love him but also I am frightened for me, because my auto-immune inner ear condition and my former mastoid problem raises my likelihood in having meningitis by 20% and some kinds of meningitis is contagious – so yeah, I am petrified really.

So, there’s a heads up for you all.

If you don’t see me around for a while, you probably can guess what’s happened?

I have 2 scheduled posts for tomorrow and 1 for Friday, so if there isn’t anything more being added, you know something is afoot! 

Thanks for reading!

Leave a comment

Filed under Home and Family

Why tardy?

The name of this website is called TardyCreative for many reasons, one being I am renowned for being very tardy about updating social media posts and this blog – but why?

Mostly as you all can guess (or at least those that have followed me for a while now), that one of the main reasons is ill-health, now I am not just talking sniffles and worries here, I am talking full on bedbound and housebound style sickness!  The kind where I get the influenza that knocks you off your feet type of illness, but I get it for twenty weeks of the year on average – yes, that’s my average, not just small sniffles, full blown knock out!  What’s funny about all of this is that by and large I am considered hardier than most with things, definitely hardier regarding pain than most others, to the extent a doctor was concerned that I had a problem with pain receptors, but I don’t.

Another reason for my tardiness is that I am easily distracted, I have what Paul thinks is undiagnosed ADD and ADHD.  I have issues concentrating for prolonged periods and do things in fifteen minute spurts, outside of this and I wander off mentally and can get tired easily.

I can hold many conversations at once, in fact I thrive doing that, but hold me on a subject for too long without a break and I get stressed and sleepy!  Sleepy is funny because normally outside of being forced to concentrate for longer than I can, I actually have problems sleeping because I am generally quite a hypoactive person, health provided.

I am easily distracted by windows and animals, plants, TV, and ideas.  I can be sitting down watching my favourite unmissable TV show when an advert for Warcraft comes up and I am researching the latest of the game or the movies on my phone and the next thing I know is I have missed fifteen minutes of my show!

I write my stories and overhear a conversation between Paul and Henry about ancient Britain and I pause to answer questions or research things we’re unsure about.

I have never been able to focus for long; this is why when I work on my creative pursuits, it is essential I have more than one thing going on.  Because when I get distracted it breaks my roll and when my roll is broken on one thing, it is hard to get back on it the same day!

I often get flustered with too much stimulus, I was settling down to bed last night and watching YoutTube to calm me down, some art tutorials, when an advert gave me the idea for a new story and art project and I ended up writing by hand for an hour longer than I wanted to and didn’t get to finish the art video I wanted to watch! 

I was then distracted halfway in writing my notes because Henry’s gastric flu is still quite bad and he had another bout of sickness at 3:30am when I was trying so hard to wrap things up for me to go to sleep!

When Henry’s little bout finished, I tried to continue my notes, but I put them aside and just as I thought about turning the TV off finally to go to sleep, I started thinking about fairy art projects and picked the note books up again.

The thing is, it isn’t just my creativity I am tardy with, I am like this in all areas of my life and I am often met with aggressive impatience by others, who hate my dithery behaviour!

I am easily lured by anything that sparks an interest in me, which is why shopping is a nightmare for people who are on tight schedules, because I am worse than a child in a candy store if I walk past something that is vaguely anything I like!

The problem is, despite being sick, my mind wanders off so much that I do not realise how much I am actually exhausting my body with my antics, until I literally pass out!  I used to faint a lot, be warned, why don’t I do so as much anymore?  Because Paul is incredibly strict when he sees me wandering or being too physical beyond my bodies capabilities, people who don’t understand my situation can think he is off for how he seemingly dominates and talks to me, but it is necessary, he knows that I will pass out if he doesn’t do or say something harsh!

Why I am like this?  I don’t know!

But it is me in every single sense of the word.

I am just that, I am tardy because I can’t help it; I am tardy because I am too interested in everything and want to do everything at once all of the time!

If I had a magic wand, I would find a spell to split myself up in thousands of different bodies and do everything that distracts me, so I can at least be more dedicated to them, than I currently am!  But then again… would I be?

Thanks for reading, I will try and post again soon!  Stimulus willing!

Leave a comment

Filed under About my work

Sickness and feng shui

Covid hit my Henry in the first week of April, then it hit me a few days later, because of this I have been functioning at zombie level, because not only did I have Covid at the time but I was recovering from a non-Covid chest infection and gastric flu – which coincidentally, happened again just a couple of days ago.  More gastric flu hit the house on Wednesday and apparently gastric flu is spiralling in and out of everybody’s lives a lot in the last few weeks or around here in any case.

Because of all of this, I haven’t written a word towards a novel since the 2nd February 2022, ironic considering this was going to be my hardest working year in writing and I wanted to start as I meant to go on for the year.

I am exhausted but recovering slowly, my asthma seems much worse these days and my bronchial tubes seem to be permanently filmy and half opened, along with this it is also a bad hay fever allergy year for me.

Just existing is difficult these days, but I am trying to push through and though I have never been a huge coffee drinker, Covid has made me become one of the worlds many addicts as it seems to be one of the main things which is helping me through it all!

I don’t know if it is my neurological problem or Covid which has made this happen, but recently I am struggling to walk in a stable manner and I am finding it hard to sit up from a laying down position.  My legs feel like they have weights on them, however the weird thing about it is, it is as though I am walking on air at the same time, or that the ground has become marshmallowy.

My appetite has decreased further, where a simple dish of a small salmon fillet and half of a small a jacket potato with nothing else, is a feast to me!  This has meant, finding highly nutritious and varied foods on a small scale has become hard to manage.  I literally need micro-meals, I don’t mean microwave meals either, I mean small meals, miniscule for an adult, perfect for a 5yr old and I need to eat at stupid times.  I now regularly have to have a small meal at 10:30 pm just to get enough calories and nutrition in the day, which doesn’t help the insomnia.

A positive thing though, is I have discovered I am not actually lactose intolerant at all – I have found I have issues with gluten and lactose purely because those foods contained soy, since eliminating soy completely from my diet, I am now able to eat gluten and lactose again and let me tell you, its pure joy!  Though being a Chinese food addict means I can’t indulge in that anymore unless it is homemade and without soy!

I found out because twice I accidentally consumed things containing milk and then expected a bad night of gastric like proportions, but no, nothing happened.  Then I had another food which had milk and soy and I reacted, Paul thought that maybe it’s because I ran out of enzymes, but then we noticed that my lactase pills were not working for certain food items.  So I began a soy elimination diet, as suggested by a friend.

So I had been spending £18 a month needlessly on lactase pills, because it wasn’t a lactose problem at all, it was a soy one!

Despite being ill a lot this year, there is a noticeable improvement in other areas of my health, since going back onto lactose and gluten.  My skin and hair have improved a lot and a couple of other personal issues.

Henry is currently sick with very bad gastric flu and his fever broke earlier today, he had a temperature for so long that the doctor had said that on Saturday, if there was no improvement, he would have had to of been admitted, so there is a lot of relief there that the fever has now broken!

Because of all these health issues and so on, I decided that I should reconsider the house in a feng shui style, I knew certain aspects about feng shui, but not a lot, and I realised that things were better in certain years when furniture was in different places and worse when it was moved in other places.  Considering this, I read some books about what I did right back then, but was doing wrong now.  I found that there is a lot of blockages in areas that was good, particularly the health – which explains why we’re sick potentially.  The health centre of our house was established around the time I started to get sick eight years ago as a laundry pile area – not good feng shui, also we have small mirrors which we glued around each other so our reflections are always fragmented and cut up into bits, again not good feng shui!

Also I noticed that I moved dragon ornaments away from the places that they would like to be according to feng shui, we did better financially when a dragon and a tortoise was in the south west corner of the living room, but things have changed since I put them both in the south area of our bedroom!  Effectively moving them from the transformation area to the career area – career wise things may have improved as we are developing good contacts, though have not dedicated ourselves fully into creating a career just yet – so we will not move them back to the transformation area, but instead, move a spare dragon from another area to the transformation area and then move the tortoise out of the bathroom, which is a bad area to keep it according to the practise, especially as the bathroom is half in the health area!  Because our health centre is split into two rooms, which is unusual and complicated in Feng shui terms!

I love Chinese culture a lot, I believe a lot in the Chinese astrology and I do not like western astrology, I believe Chinese astrology to be more accurate in my life.  So, the idea of throwing me into Feng shui as well, I think, is a good idea!

My grandmother always said there was Chinese in my family, but I found out that she was slightly wrong about the nationality; they were actually Vietnamese and Singaporean ancestors, which kind of explain my so-called throwback eyes as some people call them (I actually think it’s kind of rude, but there you go).

 I would love nothing better than to move the furniture around again, but at the moment the family is sick and the areas I want to move would cause bad things to happen moreso this year, because those areas are all the areas of this year’s sha chi, which means if you move those areas outside of good construction days (according to chinese astrology) you will activate the bad energy there and make things much worse.  So we can’t make improvements until the 9th of May or the 23rd and 24th of May, as per the household’s astrology signs.

I am a water dog, Henry is a metal tiger and Paul is a fire monkey!

Anyway, thank you for reading and maybe in the future there will be more about the feng shui as I learn more.

Leave a comment

Filed under About Me

Health update 12th June 2021

Because I am spending more time in bed due to my immune system having a major crash for the last week, nearly two weeks now, I have re-established my addiction to Codeword puzzles.

I seem to be completing them faster these days; I am starting to become a bit more of a word geek than I was before. 

Also, I tried to get back into playing online word games such as word tornado and scrabble on my laptop in bed as I decided I could do things in bed on my laptop as at least I would be more productive than just watching YouTube videos on TV and reading books.  But guess what?  BT decided to update this areas exchanges so internet connection has been tetchy and almost non-existent, so I can’t do that or watch YouTube on TV without a disruption every 15 minutes.

I thought only last Thursday to do this, take the laptop upstairs, play word games and update my blog in bed as I don’t like how my illness dictates to me how much work I do, because I’d rather work downstairs on the desktop computer.  Friday afternoon BT alerted us for the coming week that they will be updating everything and they apologise for any disturbances that they might cause during this time.

I would say “typical” but I am not that kind of person, because I know that certain thought patterns can affect your reality and make things happen.  But I do take it as a sign that Paul is right about the universe trying to get me to rest, because it is hard for me to sit back and rest entirely.  I have never been the kind of person who relishes in relaxing and living with Paul has been an education in that at least.

So, I am here, on my desktop again, only to update this blog and have my dinner before going back up.  I am having a really bad day with my arthritis, inflammation, ear infection and migraine.  I can barely eat because my IBD and IBS is bad too, in fact it is becoming a major concern for Paul and the doctors, because I am now eating in deficit, I am losing inches but not weight which is also confusing.

Since Christmas I have lost 3 and a half inches but no actual pounds, it is visible loss but not scalable other than measurements.  I am not exactly changing my diet either, I just physically can’t eat a whole sandwich anymore, I am having what Paul terms as micro meals or not-so-posh-nouveau-cuisine, just to eat something.  Thing is, I really need a tiny half tea plate of food around 5 times a day to be at the calories I need, but I only really get around 2 now.

My mother if she knew about this wouldn’t believe how little I am eating lately and it’s not by choice, it’s because of pain and the inability to keep things down.  If I eat a whole sandwich, I will vomit some of it back and that’s not bulimia, it’s just my body rejecting it.  I have a stupid amount of vitamin and mineral tablets I have to take daily because of this.

I joked to the doctor once about how I must be the only fat person they will know to die of malnutrition, in fact they shocked me with their reply; “it’s more common than you think”.  He said.

Let’s put it this way, my mother used to serve me up 6 to 8 fish fingers with 2 or 3 fish cakes, 2 slices of bread, half a can of beans and half a plate of chips as a regular once a week meal.  These days, she doesn’t feed me; she hasn’t seen me in years.  But now if she still knew me she would be shocked that I could only be served 2 fish fingers, two slices of bread, 1 fish cake, 1 spoon of beans, 1 tong serving of chips and I won’t eat everything before my stomach plays up!  This is a bad example of my regular food intake, because that is what I am eating today.  Usually I have stir fry, salad, and veggie frittata (despite egg problem), casserole with veg, or chili (for some reason my stomach can cope with chili despite the disease, which is baffling to everyone).

Yesterday I had quinoa, with beef chili, loads of Mediterranean vegetables, yesterday’s meal was the biggest meal I ate without a problem all week, but I still only ate half of it, but at least it was around 800 calories.

Which was a big contrast to the day before that, as that dinner was 2 slices of vegan cheese on toast, onion, tomatoes, peppers, and a side of celery and carrot and that was it, I couldn’t eat anything else the whole day!

But this has been normal for almost 2yrs, just got worse around 3 months ago.

I’m permanently exhausted and in pain and I am bruising way too easily too.

In a nutshell, my life sucks.

Happy reading!

Leave a comment

Filed under About Me

Spider porn

My entire immune system is going through a major crash in the past few days as well as my internet connection!

Though I have done nothing but sit staring at a corner most of the day, it was quite interesting; I spent two whole hours staring at a spider in the window that has lived in my lemon tree for the past six weeks. 

It was quite interesting and a bit of an education, because she had two male visitors gently tapping her web in the hopes of becoming her mate.  I thought this odd because spider mating season is usually in the autumn, not early summer! 

Anyhow after two hours one of them, the biggest one, finally got approval and the other one went scuttling off down the radiator when he found out he was rejected.

Thinking that spiders will mate less than five minutes (as that is what I have seen on TV) I was surprised to see that it lasts around 45 minutes with this couple.  She also wasn’t very aggressive with him either, he got away unscathed and when he ran away she ran after him, they kept running backwards and forwards from each other a lot for another hour before he slipped and fell into the radiator and didn’t bother coming back.  He is still alive though, I checked. 

She on the other hand has settled back in her same old position in the web just 6 inches underneath the rim of my lemon tree pot acting as though nothing has happened.

Although I am scared of spiders because I am allergic to their bites, I love them.

Happy reading!

Leave a comment

Filed under Brain Drain

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?

Leave a comment

Filed under About Me

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.

Leave a comment

Filed under About my work

Other hobbies

What do I do when I am not writing?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

 

 

 

 

 

Leave a comment

Filed under About Me

Money free world

Money’s a problem all over the world

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

It used to be reality, for everyone around

But men fell in love with shiny rocks in the ground

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

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

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

But I just see greed and exploitation

Unfairness and hunger and lots of discrimination

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

We are smarter than this, our minds have been swirled

I have heard of a time where everything was free

Money is an illusion, you just can’t see

Warmth, food, water and a place to call home

Are all basic needs which everyone should own

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

So why has humanity invented this strife?

It’s a puzzle, it really is

I hope we’ll soon all work out the quiz

But suffering world over would end in a jiffy

If everyone thought that money was whiffy

Everyone all living a life they deserve

With food, warmth and water, what a learning curve

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

Money is a barrier in this modern world

Money needs to go now, a new system should unfurl

A system of voluntary work and good will

A system where people go to work still

But system where freedom is always a choice

A system where people in their lives could rejoice

A system with a world united where barriers should fade

A system where teamwork is always displayed

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

But society is good at not keeping people there

People are good at motivating the herd

People who are lazy would be considered absurd

Even the sickest has their worth

But whilst there is still money, plenty resent their birth

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

It’s imprisoning you

Not just you but all of mankind

Money is very, very, unkind

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

How would you live?  Who would you help?

Please do think about this, it might self help

It will open your mind to what you can become

I wish more people thought that money was dumb

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Here is my no money list.

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

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

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

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

Money is evil, it makes us heartless.

Leave a comment

Filed under About Me

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

Leave a comment

Filed under poetry