Tag Archives: asthma

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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Update November 2019 AKA I am still alive!

I didn’t continue Inktober from day 5 and I haven’t done anything towards NaNoWriMo this year either, my health has got quite bad in the past few weeks, for some reason or another I have developed something new where I am sleeping an average of 10 to 15 hours a day and when I am awake, I wished I was asleep and this is something strange for me, because I not a person who loves their bed (unless I am making love in it)!  I don’t find sleeping a productive venture, other than maintaining health (which I don’t have any more anyway).  I am living in constant pain too; painkillers aren’t cutting it anymore for me, not even the occasional co-codamol, I am having almost permanent nose bleeds and other strange bodily phenomena, such as the feeling that I have a glass splinter in my foot and my arms are going numb and losing strength at random unpredictable times.

My IBD markers have also risen and my rheumatic arthritis has decided to wake up again, it often goes away and comes back again, remission I think it’s called?

My depression had got better until last week I received a medical request which puts my ESA medical due around Christmas week again, just as I felt that Christmas might be financially impossible this year I get this as an added assurance, because I don’t think I will pass it this year due to the fact that my consultants are very laxed in actually giving me a name for some of the things that are wrong with me.  I knew my local NHS is struggling as it the NHS nationally, but yesterday on TV I finally learnt why my consultants are particularly lacking in their treatments of me – they are part of what the government consider the notorious Nuffield branch crisis.

I never heard of it before now.  I don’t really understand what it means, but there seems reason to be concerned according to the news I watched last night about being part of the Nuffield problem.

I don’t vouch any knowledge on the thing.

All I know is that someone advised me to take a certain person to my medical this year as it may help my claim, because I am a client of a specific charity and apparently this could give my claim some weight.  I just hope I don’t sink.

I haven’t been able to practise my recorder for a month either, because I have been getting a little chesty, I was expecting this, because every year between November and March I get bronchial issues – I have been given medication for asthma but the doctor declines calling me asthmatic, I don’t know what that is about, but there is no name for my breathing problems when I get them.  When they get really bad the doctors say I might need to stay in the hospital as I always seem to get bad enough that they feel I am borderline of pneumonia or pleurisy.  Hopefully that won’t happen this year; I am tired of the fact that I haven’t had a decent healthy Christmas in almost 7yrs.  It is starting to make an Ebenezer out of me. 

I haven’t written anything other than 9 poems since my last post and I don’t think I like them enough to share.  Some of them touch very delicate subjects.

I have also managed to list whilst in bed, all of the story ideas I have had had over the years and number them, 187, that is scary and I felt instantly depressed that more than half will likely never be started let alone finished.

I noticed that I shouldn’t really call myself a horror writer too, as most of my stories are comic fantasy or dystopian, I think all in all there are only 6 non-vampiric horror stories in the list, about 12 vampire stories in the list, but mostly comic fantasy.

I have an idea for a sequel of a top Broadway musical, but I know I wouldn’t rightfully be able to write it as it will be an infringement of copyright and it is a shame because I really think that this sequel would be amazing.  The musical has always been one of my favourites, Annie.  I love most musicals anyway, but that one is special to me as I remember watching it the first time when I came out of hospital for the first time aged 5.

I won’t say my plans, but if anyone needs a sequel to it, please let me know – I am not a dunce, I will know if you are of genuine sources or not.  I have often thought about writing a letter to the source of the musical or current copyright holders, but not sure when I will take the plunge – as I am embarrassed, because of my health I may not be able to deliver on a strict dead-line.

Another thing I need contact from is from anyone who knows how to get my Henry onto junior MasterChef, he really wants to be a chef when he grows up, he has decided – he also wants to do a baking marathon for Children in Need next year, but I have no idea how he can do that, I can’t afford to give him ingredients for 100k of cupcakes, ha-ha, he will be 10 at the time too.

Wasn’t it amazing what Rylan did as well this year?  Henry always thought the guy was awesome, but now he is inspired to do a 24 hour baking challenge because of it, I said he won’t be allowed he is too young!  So then he thought of a specific number of cakes – though he says they have to be gluten and lactose free so I can have a couple!  Isn’t that lovely?  He thinks of his mummy?

I don’t know if it is a sign, but I have nearly finished a novel, when I get the energy back to continue it I will have about three chapters to do before I consider it done and coupled with this, I have been getting dreams.  Those dreams are of me moving house, every night I am in a different house in a new dream, what is weird is I accidentally found a house that is identical to my dream in Derby with identical surroundings in the town, specific shops and maps, it has blown my mind away about how I found that.  Thing is, I don’t think I want to leave Rugby.    I think it’s a nice little town, the people know me well like I have always been here and it is really is in the centre of everything you need in the UK – an hour from London, 45 minutes from Birmingham, 90 minutes to Manchester, it’s just a great spot to be!

I have discovered after reading several books in bed over the weeks that one of my main problems creatively, is that I overthink things.  I play too many ideas into others and eventually lose their uniqueness, I have learned to let go.  I have learned that it is ok to repeat themes in my writing in order to make things more interesting in places, but also learned that various themes can be used only once and there shouldn’t be any regret.  I have also learned that mentally I use the excuse of not having much experience in anything in life as a way of holding me back from having a life.

I am on a big learning curve right now, my mentality is changing and it is growing me.  I am also changing on a personal level – I used to be a very meek and obedient person who was afraid to make people unhappy even at the expense of it making me unhappy, but that too has changed.  I have started to learn that if I am not happy with something I will tell that person and I will try to maintain kindness as I do, but ultimately I won’t suffer anymore, not for others, especially as it was never appreciated in the past or even recognised.  I do however insist that I maintain kindness as much as possible and maintain a positive attitude, I have an intolerance for misery still, that is innate within me and I think that is in part the reason behind why I am more of a comic/comedy writer.  I know this blog doesn’t show that, as my poetry is often very dark, but my stories, when I eventually release them for the world to see, will be quite light hearted and funny – well I hope so anyway.  My poetry may still be dark and bleak in a lot of respects, because it helps release what is soaking my insides up, bad things from the past, my deepest yearnings, my tears and fears, I have to release this emotional cancer somehow, don’t I?

I never intended to be a comedy writer, it just happened.  I always intended to be a horror writer but as funny as it sounds, writing horror is horrible and I don’t like to do it anymore.  I used to relish in making people scared and feel sick to the stomach, but only certain people and now they are gone from my life I realised how neurotic they made me and how horrid they were making me.  So now I only want to make people smile, laugh is even better, inspire would be a jewel, but I would be happy with a slight upturn of the mouth from my readers and nothing more if only to make the world a bit more brighter.

(was written on the 14th November but only just got around to copying it for this blog – I have not been well, in fact the whole house has had the flu this week on top of everything else).

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