Tag Archives: disability

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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Bedlam, chaos and disorganisation

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Tis bedlam here.

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Other hobbies

What do I do when I am not writing?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

 

 

 

 

 

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Money free world

Money’s a problem all over the world

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

It used to be reality, for everyone around

But men fell in love with shiny rocks in the ground

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

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

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

But I just see greed and exploitation

Unfairness and hunger and lots of discrimination

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

We are smarter than this, our minds have been swirled

I have heard of a time where everything was free

Money is an illusion, you just can’t see

Warmth, food, water and a place to call home

Are all basic needs which everyone should own

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

So why has humanity invented this strife?

It’s a puzzle, it really is

I hope we’ll soon all work out the quiz

But suffering world over would end in a jiffy

If everyone thought that money was whiffy

Everyone all living a life they deserve

With food, warmth and water, what a learning curve

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

Money is a barrier in this modern world

Money needs to go now, a new system should unfurl

A system of voluntary work and good will

A system where people go to work still

But system where freedom is always a choice

A system where people in their lives could rejoice

A system with a world united where barriers should fade

A system where teamwork is always displayed

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

But society is good at not keeping people there

People are good at motivating the herd

People who are lazy would be considered absurd

Even the sickest has their worth

But whilst there is still money, plenty resent their birth

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

It’s imprisoning you

Not just you but all of mankind

Money is very, very, unkind

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

How would you live?  Who would you help?

Please do think about this, it might self help

It will open your mind to what you can become

I wish more people thought that money was dumb

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Here is my no money list.

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

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

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

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

Money is evil, it makes us heartless.

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

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

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

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

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

That’s my situation. 

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

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

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

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

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

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

Ho hum, there you go.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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