I Think The Government Is Trying To Kill Me.

Can you imagine how much people like me cost the government in free prescriptions and hospital treatments each year? I mean the amount must be huge, hence it makes sense why they would want to kill me off.
No, this isn’t the mad rantings of a conspiracy theorist on how the powers that be have devised a convoluted plan to knock off the weak, the poor and the disenfranchised. (though it wouldn’t surprise me if they did) But what else explains the reasons that doctors and consultants throw a truckload of meds my way, (which are no use an don’t work) whilst limiting the drugs needed to keep me alive?
The discrepancy in the way they hand out these meds makes no sense either. For example, I have to take 125 mg of a particular drug which comes in two forms. One pack contains 100 mg and 2 blister packs, the other 25 mg, again containing 2 blister packs. But where I’m given 4 boxes of the 100 mg, I only receive 1 box of the 25 mg. This means that whenever the time to review my meds comes around, I’m always invariably short. No problem if I have a repeat prescription, but if I can’t go out and collect the bloody thing, then what?

Right now, every single joint in my body is in pain. My bones are sore and my face and jaw ache and feel tight. There are sharp shooting pains in my chest, abdomen, side and back, while my head is pounding and my sight fading. And all this is further compounded by the worst case of nausea I have EVER experienced. (and that includes the hellish morning sickness that comes with being pregnant)
I have however, noticed a kind of pattern to all this. First the head will pound, then the face and jaw will tighten. The sharp pains will then kick in followed by the extreme nausea and all I can do is lie there and not move, because to move would mean emptying the contents of my stomach everywhere. (as I soon found out) I can’t eat and the only thing that keeps the vomiting at bay is sipping ginger beer. Essentially, my body is shutting down and the lack of that 125 mg is the reason why. It’s a drug that I need to take for the rest of my live and I’ve been warned about what would happen if I don’t, which is what in effect, is happening now.

So when will I be receiving my next batch of medication? Well that will be on Thursday. But the pharmacy closes half day on Thursdays and I can’t even walk the 4 steps to the bathroom let alone take a 30 minute trip to the chemist. So in all probability, it will probably be Friday after the womb-fruit is able to collect it after school. And will they double up this med so that this problem never arises again in the future? Hell no! There’s more likelihood of a Zombie apocalypse or an alien invasion happening. So yeah, Imma stick to my unapproved assumption that the government is trying to kill me off in the meantime.

Why I Hate My Consultant. Part One

Today I had to fill out a form. At the part where it asked for my medical history, I wrote the following:
Osteoarthritis
Fibromyalgia
Chronic Fatigue Syndrome
Myofascial Pain Syndrome
Lupus
Degenerative Disc Disease
ME (I refuse to combine CFS with ME)
Hypothyroidism
Allergic Rhinitis
I didn’t even bother writing down the illnesses within those illnesses, which would have equalled The Britannica Encyclopedia in size, just  handed the completed form back to the receptionist who read it and then gave me a look.
I had seen that look a thousand times over the course of each diagnosis. It was a look that said, “you’re kidding me right? There’s no way you have all of these.” In other words, she was calling me out to be either a liar, or  at very the least, a hypochondriac. I glared back at her and watched as she perused the list once more. That’s when her resting bitch-face, which had been firmly at repose, suddenly became animated and arranged itself into a full on venomous she-devil face as she tartly asked, “Isn’t chronic fatigue and ME the same thing?” Obviously as well as working the desk, she also had a certification as a medical practitioner.

“No”, I replied, although it took every ounce of my being not to tagged “bitch” at the end of that one simple word. Then I continued, “there are very acute differences in both conditions. It’s only those who don’t do their research who lump them together because of their similarities. It’s a lazy diagnosis, but you can place them together if it makes your job easier.” And then the bitch “Hmph” me! She actually closed her mouth in order to produce a sound that denoted a “fuck you!” I almost told her that if she didn’t like her job, then she should go back to her original occupation as a woman of the night, but instead settle with a remark that she needed to go back to training in order to learn how to deal with patients in a polite manner. This time she remained quiet and I went and took a seat awaiting my appointment.

Fast forward and my name is finally called. On entering the room, I try very hard to stifle my disappointed groan, because this particular consultant and I have had words on more than a few occasions. He’s the type that thinks because he has risen through the ranks to become a specialist, he now holds superiority over all human life. I note the equal look of disappointment on his face as he realises who his first patient is, and match my genuine smile at that, to his own wolf-like grimace.
As we both make idle conversion, neither one of us caring about the other’s answers, I take a chair and wait patiently for the battle to begin. It doesn’t take long.

I may be overreacting but…

fibro

Every time I see the picture above posted on social media, it stirs up something in me not unlike a pot of boiling rage. It’s quite a strong message but It doesn’t tell me anything about the daily struggle the poster is going through, nor does it tell me what they’re feeling. It doesn’t impart upon the reader any information except to say, “take pity on me” and even though I’m a great supporter of the ‘pity party for one scenario,’ (It’s a skill I’ve mastered well) I don’t need a picture to do the job for me.
I’m not saying that every picture has to detail someone’s daily struggle or must contain vital information about their condition, but I feel as though the words used could garner a negative reaction.

For me however, it’s an image that’s both blaming and condescending. In life I flit between wanting to be acknowledged and not accused of “faking it,” but I also want to be treated much the same as anyone else. Yet the line ‘I hurt at places you couldn’t imagine’ separates me from others, creating a ‘them and us’ status. it’s defeating and patronising, especially the part which reads, ‘beyond your comprehension.’ Okay, so it may be true that the pain that I and others feel is beyond most people’s comprehension, but that’s because most people haven’t experienced it. Everything can be beyond someone’s comprehension if they haven’t been through it themselves, but that particular line feels like the finger of blame being pointed at those who do not have a chronic illness.

And do I really need people to know how strong I am so that they can say “well done you for doing what so many other people with chronic illnesses do every day?” If the person who wrote that really was strong, would they need to advertise that fact?
In saying that, many people find solace in those words. It says what they think, which is that those who don’t have it, don’t get it and I understand that completely. But here’s the thing, many people who don’t know our story already view us as whiny, self-obsessed complainers with a fake illness that’s all in our heads, and posts like this do not help with that stereotyping. It could have so easily been written as

‘I hurt at places which cannot be imagined, at a level beyond comprehension. If this pain could be felt by anyone for just one day, then they’d realise how strong they really are’.

There is no divide in that statement, no finger pointing or self pity because both the person posting and the reader, are encompassed within those few words. Most of us want understanding and compassion, not a sense of ‘woe is me’, which is what this sadly portrays.

 

Calculations.

My kitchen is a jamboree bag, because on any given day, you’ll never know what you might find in it. Would it be the scene of a mass murder? The location of a horde of pillaging Saxons? Or the site of a 1980s acid party?
Last weekend for instance, my poor kitchen with it’s solid wood cabinets and marble countertops, bore all the hallmarks of a herd of buffalo rampaging through it. Not only did it appear as though a violent and frenzied charge had taken place, it then seemed like the herd had made their way back from said rampage and decided to stop and fornicate upon my worktops, thus spilling everything onto the floor.
Today however, It was the turn of the food fight in a crack house look. But where I see crack house food fight, the Womb Fruit sees only a couple of crumbs and a speck of dust.
So, usually after looking around to assess the damage, I quickly calculate the amount of time that it takes for me to clean the cooker, scrub the counters, mop the floor and wash the dishes, as well as the type of pain that would come with each of these tasks…and then I promptly burst into tears and hobble back upstairs to hide under the duvet.

This time, the tears didn’t last long however. Five minutes later and like an arthritic tortoise on steroids, I soon set to work on getting my crack house looking like a poppy den, which is one step up from crack so I call that progress. I even made myself some toast and a cup of coffee afterwards. The downside to all that activity, was that I couldn’t carry said items up the stairs and so just stood there, cup and plate in hand and wept instead.
I had calculated correctly the parts of my body that would pay for my domesticity, and that’s exactly what life has become, a series of calculations.

Let me explain further by way of a few hastily constructed diagrams.

no1

In the morning, I often have to calculate whether or not to take a shower before I iron the Womb-fruit’s school uniform, or if it’s best to iron first and shower later. Now having a shower depletes any energy that I may have and so a rest is needed, usually for up to 20 minutes as time idly ticks by. The upshot of this is that I’m then late in smoothing the crinkles from the Fruit Of My Loom’s uniform, thus making him late for school. However, if I iron first, then I will be in too much pain to take a shower later.

The same principle also works for cooking versus cleaning.

cvc

Similarly, a day of shopping allows for more calculations.

ivs

Each  trip to the shopping Mall means calculating the distance of each escalator and lift to the exact shop/floor I wish to visit. The journey and mode of transport itself must also be carefully calculated and arranged because time spent sitting down means less time where I’m able to stand.
You may discern that there is a pattern to every outcome, and that pattern is time spent in bed. But this varies from task to task and can be anything from 20 minutes to a few days. Everything from socialising to putting on my tights before I leave the house and the cost that each one has upon my body, has to be ascertained.
And thus, my life becomes a series of calculations.

Nature Is A Bitch. Part 1

Nature is a bitch.
Don’t get me wrong, I love nature, but lately she’s been treating me like the unpopular kid at school and is thus refusing to have anything to do with me. What a bitch!
And like that unpopular kid, I can only bask in the glory of Nature without truly engaging enough to show her just how bloody awesome I really am, on account of the fact that, well you know, she’s a bitch.

It wasn’t always this way. Once Nature and I were best friends. I would spend countless hours frolicking gaily through the woods and singing a merry tune as birds, deer and other woodland creatures fed from the palms of my hands…Oh wait…no, that was Snow White…
I would however marvel at the wonderful assortment of earthly insects. This was before I became a lady after which, I would then scream loudly at the assortment of earthly insects. I would make gloriously long daisy chains and caress the bark on trees, though not sexually you understand. I may be single but I’m not desperate…yet, and generally just spend my time thinking how insignificant I was to all the things that surrounded me.

Once, my friends and I decided to meditate in a particular forest. It didn’t matter that that particular forest has a reputation for where one hides the bodies of the slain and the fallen and is also known as a murderer’s paradise. It was majestically beautiful, hidden away from the bustle of every day life and a quiet postscript to the world waiting outside. And it’s only now as I look back in naive innocence, reminiscing fondly on my past youth, that I can truly see what a bunch of pretentious twat-waffles we were to even think about frequenting such a place. Seriously, what a bunch of bloody morons!
Anyway, after the four of us had finished our mantras, swapped clothes (don’t ask!) and wondered why all the crickets and birds had suddenly gone quiet, we decided foolishly and like the fools in a horror movie where you’re begging them to be slaughtered painfully and gruesomely because of their foolishness, to explore the rest of the forest. And that’s when we came across the bouncy tree.

This tree was spectacular. Centuries old, it looked as if it had been standing there since the beginning of time. I can’t remember what type of tree it was, but it’s boughs were thick and long (resisting urge to make lewd and obvious comparison) and when pulled, would spring high up in the air before bouncy back into place. (urge for lewd and obvious comparison becoming stronger) So we decided to go for a ride. (MUST…RESIST…)
Taking turns, one of us would straddle the huge limb (okay, I’m just gonna forego anymore tree descriptions. This is turning into 50 Shades) holding on for dear life, whilst the other three would first pull and then release it.
Soaring through the air like an magisterial awkwardly screaming bird of prey was an exhilarating experience and despite seeing my life flash before my eyes a few times and whimpering my mama’s name, it was wondrous. Also, I may have peed myself a little.
Still, it’s a moment in time that I will never forget and a testimony to the wonders of Nature.

But that was a long time ago. Since then, Nature has abandoned me and taken up with a group of bullies who are intent on making my life a misery The chief ringleaders?
Fibromyalgia and Allergy.

As The World Goes By…

I’m listening to the sound of the rain falling outside my window. It makes me want to snuggle deep under the duvet, a huge mug of hot chocolate at the ready.
I can hear the wheels of the cars as they race through paddles gathered on the roads and the sound of children on their way home from school, unconcerned about the wetness that soaks through, their only intent on telling their parents about the day they’ve just had.
I can hear an exhausted mother berating an errant child and the slam of car doors going to and fro destinations unknown to me. They echo through the chatter and laughter and dribbles of conversations that reach ears nosily straining to hear the parlay of a dialogue that I cannot decipher.
As I continue to write, the school run ends and the cars drive off and a peaceful quiet descends upon the street on which I live. A street for where life passes me by. A street where the world goes on without me.
The quiet, punctuated by a few hasty driven autos, sometimes reminds me of the loneliness that I feel stuck upstairs in my bedroom. How I am no longer an active participant in this thing we call life, but how I wish vehemently that I was.
But sometimes the quiet brings with it a sense of determination, of maybe one day, things will be different. One day.

The Twilight Hour

Snot running down your face and eyes teeming with tears, is never a good look on anyone. Making that shit look classy only happens in movies. The only positive outcome about it being three in the morning, is that there’s no-one around to see how broken I am right now.
It isn’t even the pain that’s keeping me up…well, not this time. The fault lies solely with two bloody annoying conditions, hypersalivation, the production of too much saliva and dysphagia, which is difficulty in swallowing.
Both conditions usually occur separate to one another, but for the last couple of days, they have been happening simultaneously.
First my mouth will become dry with a feeling that my throat is closing up. This brings on a mild panic attack (I say mild because I know it really isn’t) and each swallow feels as though it’s stuck mid gulp, which brings on yet another panic attack because it then seems as though I can’t breathe. Then the hypersalivation comes into play and I feel as though I’m drowning in my own saliva. Of course, this doesn’t go down too well, quite literally, as I’m having difficulty swallowing in the first place.

And I’m tired. So bloody tired.
Every time I look at the clock and see the minutes passing by, I cry.
It’s now 4 am and I have to be up at 6 am to make the womb-fruit’s breakfast and iron his school uniform, because despite my Aspie child also being my carer, I will not let my incapabilities be responsible for him receiving third degree burns, or burning down the house.
The worst part, is that I’m utterly alone.
Gone are the days of being able to pick up the phone in the early hours of the morning and weep about what is ailing me, because like those days, my friends are long gone.
It’s always in those twilight hours that I realise just how much I’ve lost. That at the end of it all, I only have myself to rely on, and that no-one is going to come to my rescue.
There is no-one there to hold my hand or offer up a gentle hug. There is no-one who will be there to tell me that everything is going to be alright. There is no-one to just sit and hold me when I cry and there is no-one to pick me up and piece me together when I fall and break.

It’s at times likes these that I feel like a ghost walking through life. A dead among the undead. No-one sees me, no-one hears me, yet I am here and I exist…just.
I try so hard to take life as it comes. To make the best of what I have and to be grateful for the small things. But sometimes, just sometimes, it all becomes too much and I hate that I exist. Fortunately, those moments are fleeting. A whisper of a bad thought.
4:24 am. Time to attempt sleep once again.