Tag Archives: illness

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!

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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!

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Mental health update 26th May 2021

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Maybe tomorrow will be different?

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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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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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Munchhausen victim

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

When you are ill and ailing and feeling very blue

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

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

I learned to lie awhile ago about how I truly feel

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

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

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

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

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

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

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

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A plan, lost time and mindless jealousy

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

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

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

“Why are you wearing your uniform on Sunday”? 

“It’s Thursday mum” he says.

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

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

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

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

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

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

 

 

 

 

 

 

 

 

 

 

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I try to (for Henry’s sake)

Although I seem to rot away

I try to stay so bright and gay

To help your miseries stay away

I hope that someday pain will allay

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

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

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

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

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

That’s my situation. 

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

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

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

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

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

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

Ho hum, there you go.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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