Tag Archives: disability

Price of ink and financial rants

My situation is such that when I write I will print off as I go along, because I don’t trust clouds and data saving technologies, because they have failed me numerous times before.

Recently my finances have become worse and this has affected my novel writing more than anything, now I am able to get back into novel writing since I had Covid, it has meant that because of the decline in my finances I can no longer print the seventy pages a week I used to, I can only afford to print twenty a week at most and one week in the month, nothing at all.

If it is novel writing, I will print it as I go along, because of two reasons – I do not trust data saving technologies and I find it difficult to read and edit from a screen, whether I create a blue background to read from or not.

It’s frustrating because I want to write towards four ideas immediately and I can’t write by hand anymore because my arthritis is getting bad.  Every time I write more than an A4 page of handwriting, my hand swells up to the extent I can’t properly hold the pen anymore and if I ignore it, the cramps come on.

My arthritis has meant I have had to give up my knitting hobby altogether, because not only does it exasperate the arthritis, but it has also reawakened my carpal tunnel problem too!

I miss knitting, because of the style of gloves I used to make for myself and the scarves – because the style and colours I like can’t be bought cheaply, like it can be made!

I don’t have the money to buy a knitting machine or else I would do that, I also liked making toys for children I knew, but now I have been thinking about learning felt crafts or sewing the toys instead – because for some reason or another sewing doesn’t affect me.

At the moment we have a printer that is breaking down, because it appears not to be getting a hundred pages per cartridge anymore and we can’t afford to replace the printer for at least a year.  The cost of the ink is always £15, cheap in comparison, but for us it’s three days meals.  We’re near the brink of needing food bank help again – and no Lee Anderson, I can actually cook thank you very much, in fact I cook most things from scratch and manage left overs very well so there is never food wasted here!

Amongst my cooking skills are homemade pies, cakes, soups, casseroles and pasta dishes, not to mention the fact that I have been fakeaway cooking at least ten years before it became “fashionable”!  But when your colleagues Mr Anderson insist that because I have a bus stop outside my house which is within the walking distance I can do without an asthma attack they cut my mobility money by £100 a month, which meant that I could no longer afford to manage the finances which included getting medical help to try and get me back on my feet (in order to work), because you took the money I needed to travel to the local hospital 20 miles away in another town, which costs me £20 a time and I need treatment around twice a week quite a lot of the time – which meant I had to decide to become anorexic and get treatment, or just give up fighting to get my life back and make sure my family doesn’t starve to death!  Which one would you choose? 

Because when I had to do the above we had £10 for the week for food and I often had to cancel at last minute the doctors, because I couldn’t afford to get there – because doctors don’t house visit anymore, no matter how poor you are!

Along with this, we’re still not getting a lot of free stuff sending our child to school.  We had to cancel his eleventh birthday last year and all household birthdays and have the crappiest Christmas ever just to save up to get him school uniform for his new secondary school, because you can’t get it free here and there was no way in getting second hand, we checked.  The child gets reprimanded at the school if their uniform is not complete, whether you can prove poverty or not!

We would love to give up the internet in order to get £6 a week more in our pockets to eat better and maybe get some medical attention – but that would mean my son can’t do his homework so losing the internet is not an option for us!  The irony is, they say that they are doing more and more for kids in poverty these days, honestly I don’t see it!  His meals aren’t free at school; it costs him an average of £3.50 a day for a hot meal in winter.

Don’t you dare blame the poor for poor management!

Free schools, meals in schools, the NHS was all originally created for the poorest in the community, but these days the poorest in the community are not reaping the rewards of yesteryear, it basically is slowly turning back to how it used to be.  Everything is slowly privatising again and they think we don’t see it!

I don’t normally turn my posts into political rants, but this Lee Anderson has a lot to learn and remember about the society he is trying to lead!

Funny thing is, despite being bed bound and housebound sick for around twenty weeks of the year, I could work, at the pace I can.  There is some work I could do, but the problem comes with practicality – I’ve tried slogging on looking for a job outside of the house whilst managing my sickness and nobody wants me!  No one wants someone part time three hours three days a week, even on a check out, because I have ailments which embarrass the company!  I have what appears to be a permanent streaming cold!

No one wants to work alongside someone who is sniffling all year around and then needing three weeks off four times a year because she can’t even get to the bathroom she’s so sick!

So I told the benefits OK, there are other things I can do, I can write, I can do art, I can upcycle things to sell, help advise me in how to set up my own business to do that and teach me what I need to know to run a business from home.  They won’t.

But understood only this… you said you can work?  OK we’re taking your ESA away and making you go to job search centres five days a week all year around and if you don’t turn up for three consecutive days because you are sick, we’ll pull your benefits again and it will take six weeks to reapply for benefits again, meanwhile there is no transitioning money…

So, who is going to opt for all their amenities to be switched off and starving your family for six weeks solid?  What sort of incentive is there to actually get your ass off benefits if you are sick?  What kind of incentive do they give the sick to try and work out their own ailments in order not to be a scrounger?

Because seriously, this is how it is here!

So people who call sick people on benefits scroungers, talk to your government about their crackpot schemes, and don’t go attacking us!  It’s not our fault!  Most of us would love to be independent and work and get even £5 extra a week in their pockets, because no one likes going through those humiliating interviews every year!

Paul and I had thought about going to Ireland as they take care of artists and writers on sickness benefits more than they do here in England – but lately we’ve seen the news, there are political issues cropping up – will we be welcomed in Ireland?

I know my great grandfather was Irish (from Roscommon) and I know that genetically I would be accepted with opened arms, but it’s still looking complicated…

I am very frustrated, because there are lots of things I need in order to get myself a job and there is absolutely not help at all and the money is being cut again and again, to the extent, that I haven’t impulse bought a thing since 2017 and I am losing a huge amount of weight, but can’t afford to replace my clothes as the weight falls off and I am looking ridiculous!  I have lost four dress sizes in nearly a year.

Doctor says that they don’t find that a worry because I was so large to begin with.  I was a size 28, I am now nearly a size 20, they won’t worry until I am a size 12 potentially – potentially I might be dead by then, before they investigate why!

They know I have an IBD because of my high markers, but they won’t investigate until I literally start screaming in pain at A&E, seriously, been told that, NHS is so badly stretched financially that they are now only dealing with life threatening conditions as they appear, cancer not one of them, government recently warned the UK that if you get cancer now, you are more or less fucked if you rely on NHS!

Also, I have a new cholesteatoma growing in my left ear, but my ENT specialist said his department is in so much debt right now, he will not deal with it until it is life threatening! I have been through this before when I was a teenager, I really don’t want to go there again, but I have no fucking choice, because he won’t help me! That means, if the worse comes to the worse again, I won’t be able to physically care for myself bathing wise for nearly three years again nor bend down! I will also be 100% deaf!

Anyway, I am going to close this rant up, because people are home now.

Happy reading everyone… if it was that kind of experience, which I doubt. 

P.S sorry for being an Eeyore today!

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Open honesty and healing

Henry is my inspiration to keep on going despite the depression, Henry is my son and he turned twelve on Sunday.

Other than him, the other things which keep me going are things I have to work hard to find and think about – it can take some training to learn how to remove yourself from your present state and look at yourself as though you are a stranger or a friend. 

Most people can’t bear to look at themselves in a positive light, because most of them feel too attached to who they are, that they forget that everyone and everything is changeable and that if you just forget that you are you, for just a few moments, you can then see clearly and work things out in yourself. 

For me, I stand back and pretend I am as perfect as I want to be – I imagine seeing the imperfect me right in front of me (easier to do in front of a mirror) but instead of judging who I see, I imagine that I love this person tremendously, because they have potential that they do not see – that they are in effect = my child!  A child who is very sensitive and a child who has been treated badly by others, a child who you have rescued and adopted!

You have to see yourself this way, so that you act cautiously and lovingly towards this frightened, abused and mislead creature; because you are going to be the one who rescues it wholly, changes it for the better and you are going to be the one who will make it happy and healthy!

Don’t see this person as the adult it might be, see it as a very young child, because that will trick your brain, a good method in making it more believable would be to make yourself look more childish, dress the part and put a mirror at a lower level than you, so you are looking down (effectively making yourself look smaller).

This works for me at times, when I have the opportunity to be alone. 

For me, one of the biggest healing methods is the “inner child nurturing therapy” I have kind of learned about in dribs and drabs over the years.  Your parents were either good or not, but now you are an adult, you have to parent yourself and you must do it with the kindness of a good parent!

As a good parent, if something happens in your life that makes you uncomfortable or someone says or does things to you that makes you uncomfortable it is your responsibility to take it into hand and to tell the person that you don’t like it and to please stop.  You need to think in your mind, that this child needs someone to stand up for it and you are the only one who can do that, because this child needs to be saved from anymore turmoil.

In order to do this, you need to start understanding that you need to heal, you need to acknowledge the fact that you need change and that you and only you, can speak up about how things make you feel and to explain that this bad thing another person has done to you, is a trigger – so please stop.  If the person is a true out and out bully and they find amusement in this and continue their behaviour or it gets worse, then you need to remove yourself from this person or seek professional help via the police, because no one has the right to make you feel like a laughing stock for your sensitivities – no one has the right to do this to another person, so please stop taking their shit!

Would you tolerate a bully doing this to your adopted badly neglected and abused child?  If not, then why are you tolerating it for yourself?  What makes you different from that child?

Nothing, nothing at all!

You only believe you are worthless and you deserve it, because for so many years you have allowed other people to dictate to you how you should or shouldn’t think about yourself, instead of understanding that it is just lies to control you  in order to inflate their own egotistical needs!

So stop it, stop it now – stop feeding their egos – stop making them feel good, when you feel so awful!

Consider this…

What wonderful changes have you done to the world simply because you exist right now?

STOP THINKING TOO BIG ABOUT THIS ANSWER!

The little things count too!

I remember things I have done in my life that have helped others, without me, they would never have got through certain things – everyone on this planet has done this!  Only you were so busy abusing yourself that you didn’t realise and remember you did it.

I will give a few examples from my own life, which make me feel better about existing…

When I was 6yrs old a new girl came to join my class late in the year, she had muscular dystrophy and couldn’t make friends because other children saw her as very different, she was also mixed race and at the time this was still considered rather strange in the community I was raised in.  I was very popular in this school and I had a lot of friends, I didn’t like how people treated her and I told them all how I felt about what they are doing to her.

I told them I was very sad that people find enjoyment in hurting another person, especially a person who is so sick and very scared because she is new, that because they are mean to her I will sit with her and I will play only with her until they feel that they can be kind to her.

This changed and the girl became very popular too by the end of the week.  This young girl has always remembered me and she found me some years later to let me know that she is working towards a career in fashion now and she insists that this one day, changed her own opinion about herself and that it was because of me!  I never thought anything about it, because I left the school a few weeks later and literally thought everyone there would have forgotten me – but she didn’t!  She recognised me when we were in college, I didn’t recognise her, yet she still had her walking frame and though she did kind of stand out, I didn’t specifically associate this girl as her!

I have helped several complete strangers, one of which was an old lady in her eighties, she had her shopping bag on wheels caught in a drain and I was walking past and pulled it out without thinking.  She stopped me for a moment to thank me, and I said think nothing of it and walked off.  The old lady tried to call me back but I was late for work at the time and told her so – she eventually found me, it was easy because I was in uniform and she came to my workplace to seek me out and told my manager how nice I was to her and that she wanted to do something for me.  But I wouldn’t let her, she was so surprised at my kindness and said it was so rare these days that she tried to work something out with my boss.  But I wouldn’t let her reward me, she always remembered me as after this day, whenever we passed each other she’d say something friendly.

This same job place, there was a woman who was having a heart attack in store, she was frightened and the company said that in first aid situations like this, if you are late for your duties forego your humanity and get to your post – but I couldn’t leave this woman who was scared for her life.  I was reprimanded by the manager for being fifteen minutes late for the checkout services, but I wanted to go with the woman on the ambulance like she requested, but I was told I would lose my job.  She died, but later on in the week her daughter sought me out and told me what her mother said about what I tried to do for her and she gave me a gift.  Meanwhile, they spoke harshly to the manager about their mistreatment of me.

I also found a lost child, a young boy around ten years of age who couldn’t speak English, his mother couldn’t speak English either, when she found I was comforting her little boy and trying to find her, but her actions spoke louder than words.  Because she gripped my arm and bowed her head several times to my arm and I presume was thanking me wholeheartedly.  I think they were Chinese but I am unsure.  But that little boy could have come to great harm where he was, because he was so frightened he was curled up in a ball crying when I found him in a place where a car could have parked and hit him as in that area, cars often parked up onto the pavements without thinking.

I have also rescued a handful of people from suicide, spoke them through their hard time online (people I never met, but had online friendships with). 

A few people have also turned away from a life of crime because of comforting words I supposedly had said to them which changed their ways and even gave a child a father.  What I mean is, I had a friend who fathered a child and his instant response was to run away and pretend she didn’t exist because he wasn’t ready to be a father.  I told him to speak this through with his girlfriend and work something out together about it, because running away will only cause both his girlfriend and daughter to hate him potentially.  He told me he was brutally honest to her about how he can’t commit to the child but he will do whatever he can to help her as long as he doesn’t have to live with them.  This worked out fine for them and in as little as eight months down the line he felt he had value as a father and eventually moved in and married her and now he is a happy present father.

A lot of people mess up their lives because they are afraid of being honest, because they think that their honesty is going to make things worse… how ironic, it is usually always the opposite!

Whenever someone has difficulties in their lives and they need a loved one to fully understand, they normally choose not to communicate it and things blow out of proportion.  I often suggest, well just tell them, but the answer is always – “I can’t, because (insert irrational fear here).  Those who have felt confident to do so, come back to me a few days later, thanking me, because, literally – their fear was worse than the reality of it!

My attitude is this… if a person hates you for your honesty and mistreats you for your honesty, then they don’t love you enough to be worthy of sharing your life!

Believe me when I say, there are more than enough people in the world who will share your beliefs, your traditions, your ways and ideas, you have just got to make the effort in looking for them and the only way you can do this, is by living your life as honestly and as openly as you can!

That is the key to good relationships – open honesty.

Thanks for reading!

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Embarrassed by being overly optimistic

This is embarrassing, but for the past few weeks, life here has been difficult and almost non-existent;

Henry became ill and had a lot of time off from school, this made my vulnerable immune system become overloaded with new bugs to deal with and I had a chest infection (not covid) that was so bad, I sprained all the muscles in my chest and back so badly all I could do for the past four weeks was sleep or just remain in bed.

I am still not over the infection, but a majority of the pain is leaving and I am able to be on my desktop for no longer than an hour a day now.

I have tried to write my stories on the laptop but I am still not used to typing at my speed in a different angle and it isn’t working as well, I tried to go back to my preferred writing method of handwriting, but my hands are swelling and holding a pen is becoming difficult.

Along with this my appetite is minimal and I am barely able to consume more than 1000 calories a day anymore, without purging, to say the least, I am becoming sicker by the day and I am still determined to fight whatever it is doing this!

But my ideas about timelines of productivity may just be an over optimistic approach which will inevitably lead to more failure than I am willing to tolerate.

I am trying despite the challenges.

I must admit that I am afraid of becoming a published author, simply because my health dictates to me already that I do not have the energy or the health behind me, to even maintain my own house and personal relationship commitments, let alone going out and having to commit myself to marketing and book signing events.

So with this as a factor in my life, I know, I may be accepted for publication, but I may not ever make it the big time, simply because my health dictates that I am housebound almost all the time and bedbound for around 12 to 16 weeks a year!

With that said, I do hope that I will find a compassionate team to work with some day and maybe, perhaps, I won’t need to stress myself out about failing people within the publishing community.

Hopefully there are agents and publishers I can work with, who fully understand the complexities of disability and failing immune systems, I mean, there are authors who manage to have a career in prison, so why not someone like me who is housebound through sickness?

Thank you for reading and take care!

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What is my secret?

There is a new category I have created today, called “Diary”.

This is not going to be updated daily, but will be as often as I can.

You will find out more about me and my life day to day, it will mostly focus on my mental  and general health more than anything else.

Why am I doing this?

To be honest I have no one to get certain things off my chest to, plus, I want people to understand mental health better, not just mine, but how it affects a person who lives with it as a whole – their ups and their downs and what helps them when they are this way and what things can make them worse!

I also want to show you how my mental well-being affects productivity. Sometimes I throw myself into my work and other times my mental problems make me hate my work altogether and the mere idea of writing anything just makes me cry.

This is not because I hate writing or I feel that my writing is failing in anyway – one thing I have kept to myself, one big mystery that people are trying to understand about me and I have never been open about before TO ANYONE until now – it’s like a coming out, but I have a personality disorder.

Yes, people know I have mental health problems, but I have always leant to telling them it was mostly anxiety and recovering from toxic relationships from my past, this is true!  But not the whole story!

I have a personality disorder, a type of schizophrenia, I have anxieties, body dysmorphia, eating disorders that are erratic from gluttonous to starvation, and it depends day to day!  I am severely co-dependant – suicidal – manic depressive – there is a lot to know about me.  Day to day I even change my whole personality, what do I mean by that? 

Well I consider myself bisexual, I mostly love being female and trying to be as feminine as possible, but some days I wake up and I want to cut my hair short and dress like a man, I feel more masculine at times, then I regret my decisions and go back into dark thoughts, because the mostly feminine me is back again.  I don’t have the money and the resources to change the way I look dramatically day to day to match my fleeting desires.  If I ever won the lottery it would be so much easier to just say, cut my hair, but a ton of wigs and buy all styles of clothes I love, just in case I wake up wanting to be like that tomorrow. 

I don’t really know what this disorder is called, if it is a disorder at all, because although I have had therapists in the past for other things, I generally try to avoid any psychological help as much as possible, because I don’t want to be pumped full up with drugs.  Various therapists in my past have suggested oodles of medication for me and I have refused – only to have them look me stark in the eyes and say, that if I actually do harm myself or another person to hospitalisation, then I will have the choice taken away from me!

I do self-harm, but not enough to become hospitalised… yet.

There are times where I am super social and I love being around people, but occasionally, though it is not that often, I just want to shut myself away and completely ignore the world.  There have been times where I have been so used to living in a forced isolation (by toxic relationships in my past) that self-isolation comes so easily and I don’t fall apart like other people do when I do it. 

I am also a germ-o-phobe, because of this, I am terrified to go out since Covid happened, because I have had pneumonia five times in around four years or something like that.  I have only gone out six times since March 2020, to a doctor, a vet and the dentist.

All of this is the primary reason why I have not approached publishers and agents yet.

I will do so eventually and this is not idle talk, because I have a couple of good online friends who really believe in me and they are trying to teach me how I can become a published author, without being thrown too much into the deep end, because of both my disabilities and mental health problems – people who are actually within the profession themselves.  Whether they will stay true to their word, who knows?

But this is the big mystery about me.

Not much of a mystery now is it?  Just a revelation about just how sick I really am.

This is why at times my posts can seem very flighty – I find it easy to control at times how I behave around people, but it is all too easy to be spontaneous at times and post things without thinking about it first. 

Most of the subjects I talk about are very controversial and I have never really learned how to behave and react around certain subjects, purely because I have been socially isolated my whole life.  I am not using this as an excuse; I am telling it how it is.

I am a person who can seem heartless and blunt in certain subjects at times.  I am one of these people that when I am in social situations I am often put into a situation where I have put my foot in it again – I tend to leave early and beat myself up over it for months!  Some people are very forgiving and understand and have told me not to worry, but still, months down the line I am still punishing myself for my stupidity.

I’m not a loose cannon in the sense that I am overly insensitive and gun ho – but I am in regards to not thinking about how sensitive a subject can be for others.

Yes, this is an indication about my recent poll on here that I have now deleted.  But I had hoped that the poll would spur on a friendly discussion about why such subjects pertaining to “suicide” as a theme for a book was so controversial and disgusting to readers and publishers, when someone like me who struggles with such a thing day in and day out finds reading characters who are suicidal, helpful in my own problems.  I need the world to try and come out of their little boxes and help me understand society, because I have been shut away my whole life!

Is this so difficult to understand?

Is the concept of a person staying inside their house day in and day out and not socialising much their whole life offline –  so alien to so many people that they cannot even empathise with the stuff that a person who has lived in such conditions haven’t experienced or learned to become?

What I mean is – when a person has been socially isolated their whole lives, they have never had the opportunity to learn from their mistakes as a child; to grow with a society and understand the rules that others take for granted.

I am in that situation, have been my whole life and I tell you now; I am puzzled by how “normal people” are and how they behave.  I am puzzled by how society has progressed how it has, because whenever I have smiled at someone in a waiting room, they look at me nervously and back away, whenever I start a general conversation in a queue at a shop I am ignored or get a sarcastic remark as a reply!  When I used to go to the school gates to take my son to school, most parents couldn’t be bothered to talk to me, but would talk in their small circles instead.  I am confused how people have friends outside of their families basically, when in my experience, nobody wants to talk to a stranger!

How the fuck does society do it?

I am never rude, I am never gross, I always start with open ended questions, like self-help socialisation books tell me to, I never pry with personal questions.

I hate to say it and I could lose what little friends I have over this, but the only people who have maintain contact with me when I have done this are people with social awkwardness themselves who are more than thrilled someone has spoken to them first hand and they didn’t have to approach me first!

Out of desperation they invite me to theirs for a cup of tea, or in some cases a mutual café or library meets up, before introducing each other to our homes.  I understand them, I feel the same when someone approaches me – I feel honoured someone wants to talk to me, oh my goodness, someone has spoken to me, try not to screw this moment up Tina and say yes to anything they suggest if it sounds nice!

I know I sound like a sad pathetic moron, but people need to understand how it is for some people.  It is hard enough when you have social anxiety and mental health problems as it is, but when you throw in thirty three years of social isolation, it is unbearable!

Especially when you do socialise with people who have nothing better to do than to try and ruin your life, wreck your reputation before you’ve even got one and is just downright bloody nasty and manipulative to boot!

Because of my mental health and my lack of social hardiness, I have found some very rotten people who have introduced themselves into my lives more than readily in order to manipulate me for their own pleasure and amusement and in turn, it has damaged me more and more.

So this is the mystery of The Tardy Creative, Tina Victoria Cousins.

This is who I am, in my rawest form and these are my challenges I am sharing with you!

Happy reading! 

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New system

All year I had been planning to do NaNoWriMo, the one for July, but that was cancelled due to the loss of my computer desk and sickness, then the one happening tomorrow – but I have changed my mind.

I remember that on two occasions I have participated in NaNoWriMo only to burn out by the twentieth because I felt I wasn’t as good as other writers who had already proclaimed that they have finished their novels and were now in the editing process.  By the way – don’t be perturbed by this, as I eventually learned that a majority of writers, who do this, have had words in progress long before NaNoWriMo even started!

I have a handful of writer friends online who started two weeks ago on their projects and one of them even started in the second week of September!

I find writing hard these days because I am not alone anymore when writing; I have no personal private, quiet space.  I have to write around my family and their noises and demands in very cramped conditions!  My work, both art and writing is spread in many parts of the house, because we lack space and there isn’t much cooperation in helping me get a larger space to put everything into, just so I can work like how I used to.

I am also doing all of this with very bad health, bed bound for at least four or five months of the year, so I don’t even have the comfort of my desk at times!

I used to write thousands of words per day, for my stories, poems, songs and a huge amount of online articles that were published daily on various websites!  There were times that Paul remembered me doing 12k in total in an entire day, he used to laugh and call me his future wife Barbara Cartland!

Regardless of my health, I could still produce that amount of work per day, if I did not constantly have to move around the house getting notes and using things in different locations all the while, whilst fighting to get to the places through mess and dodging fidgeters who are constantly on the move around the house! 

I have copious notes for each project and used to have postcard snippets to help too, but I have no table space to see them all at once, so I have to try and look at things by hand and put them back into places all the time so they are not lost!  This is difficult for another reason too, because I have a badly deformed underperforming left hand!  It is amazing that I am able to type 60 to 80wpm with that disability!

Before I lived in these conditions, I had half an entire room, the size of 10ft by 15ft and an L shaped desk that took up two whole walls.  I could use my swivel chair to slide from side to side and have up to twenty sheets of paper out or one hundred postcards, to constantly view whilst working, as well as having two large corkboards on the wall around me!  With this, I had total privacy and control over all stimuli that surrounded me!

I could still have that here in this house, but there are two rooms that are unused purely because we have a leaking roof and rising damp in them so it is not comfortable nor safe for electrics and paper!

We simply can’t move there is no option but to stay here because the cost of the house in such conditions would mean we would need to move thirty miles or more away from this village and Paul’s family and entirely out of our county, in order to buy a property of a similar size!  Henry has a three hundred year ancestry in this village, he is not eager to break it.

The roof will cost 5k to fix approximately, once it is fixed, I will gain two rooms and one of those rooms could have a C shaped desk set up that is even bigger than my previous set up.  So eventually, I will have what I need again and more.

Instead of doing NaNoWriMo this year, I plan to write differently.  A new way, in my tight noisy space, that will help me get less noise and more words done in a day, rather than sparse times in a month. 

My new plans are to write for ninety minutes before Henry comes home from school and ninety minutes on my laptop in bed when everybody is asleep.

By doing this, I will be producing an average of three to seven thousand words per day as an average, because my average fifteen minute timer says when I have planned words I can produce up to eight hundred words and on a bad day that is unplanned five hundred words. 

At the moment I am able to squeeze in twenty minutes around three times a week without hand notes, in between family quiet time or when Henry is in the bath or whatever.

Given the right environment I was very productive and proactive and very addicted to my work and was never tired nor burned out by it!

Happy reading!

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

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

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

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

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

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

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

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

Obviously still write and do art, but what else? 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Happy reading!

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A scary thing happened today…

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Happy reading!

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new working areas

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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Update on whereabouts

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I am trying to find new ways to feel needed.

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

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

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

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

I’ll keep you posted.

Thanks for reading!

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Mental health update 26th May 2021

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Maybe tomorrow will be different?

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