The Invitation

Ah, the invite. The one thing that leaves me both quaking in fear whilst simultaneously buzzing with anticipation. But to accept an invitation is a dangerous undertaking, for while the heart is full of hope and willingness at the prospect of going out into the big wide world and meeting actual real life people, the body’s attitude to anything that requires a modicum of movement, energy and wakefulness, is “meh.” This is because the heart deals with wishes, desires and expectations, whilst the body is steeped in realism. It knows that at any given time, from being invited to accepting that invitation, it could cease to function at the click of an arthritic finger. And so the invite becomes both a perplexity of joy and a thing of dread. The dread of disappointing others.

The truth is, whenever I accept an invitation, two things immediately start to happen. The first is that I am grateful that anyone has even remembered my existence on this planet, whilst my second response is, “how do I can get out of this? It’s not that I don’t want to go, it’s just that I don’t want to go. Or rather, I don’t want to deal with the consequences of going. As anyone who suffers from any kind of chronic illness, knows, getting up, showering and then getting dressed, equals a 26 mile long marathon sprint. So readying oneself for a night out, soon becomes akin to going 10 rounds with Mike Tyson. And it’s not just the fatigue of dressing up and dolloping on make up just to look like a street walking geisha girl, it’s the pain that every movement makes. And by the time I’ve finished getting all dolled up, I’m far too exhausted to do anything but crawl back under the duvet and wrap it around my exhausted meat-sack like a burrito.

Now let’s go back to the last line of the first paragraph. The part about the dread of disappointing others, because that’s ultimately what will occur. When accepting any kind of invitation, we are making a commitment, a commitment dedicated to the cause of painting the town red, (and by that, I mean partying, not going on a murderous rampage through town) going to see a movie, dining out at a restaurant etc. Now for the healthy, this is an easy task to achieve but for those doped up to the eyeballs on so much medication that we rattle when we walk, there is a danger that illness will raise it’s ugly head and stick two fingers up at the notion of even leaving the house. For the invitee, this is a problem. It seems that they cannot fully comprehend that sickness does not adhere to a time schedule. That there are no mystical witch doctors or one eyed Oracles that can predict when we are going to become ill. It simply happens when it happens.

Unfortunately, whenever there’s a cancellation, the invitees seem to take personally the fact that we my not be up to twerking for 7 hours on a dance floor. There are even those who would come to the conclusion that we are simply using our disabilities as a form of excuse. Just recently, a friend berated me for cancelling a night out even though she had been well aware I had been unwell the previous few days. After screaming that she would no longer be organizing any more days and that I could make my own arrangements from now on, she threw a temper tantrum with such apoplectic rage, that toddlers everywhere threw down their dummies in disgust. And you know what? That was fine by me, because if you’re going to be put out by the fact that I am incapacitated through no design of my own, then maybe it’s better that we’re no longer friends.

Of course I get the frustration of planning and organizing an event only for it to not come to fruition but a little compassion and understanding goes a long way. Do people really think that staying home and looking at the four corners of our cobwebbed enclosure, is a better alternative to meeting friends, having fun and laughing until we have to reach for the Tena pads? Because I can tell you, it isn’t. Having a chronic illness is a lonely experience to begin with. We feel enough guilt and sadness when we have to decline any invitation. But it becomes an even lonelier place when the people we consider to be friends, think that we are doing so because we’re either lazy, cannot be bothered, or are just being inconsiderate. Worse still, and what hurts the most, is the assumption that we are using our disability as some kind of ‘get out’ clause.

The Miracle We’ve All Been Waiting For…Kind of…

Let’s talk about exercise. (Anguished groans of despair emit from the gallery) Let’s have a show of hands from those of you who have been told that your condition is due to a lack of physical exertion, or that the cure to all of our ailments lies in the mantra of “no pain, no gain?”

Well, I’m here to tell you that exercise does work…up to a point. You see, after my diagnosis of diabetes, I decided to embark on a campaign of health and fitness that would have me bouncing around with glee and wild abandon, like a roller skating bint from a Tampax advert. I had become fed up with various doctors telling me countless times, that all I needed to do in order to be miraculously cleansed from the afflictions of my maladies was to exercise. I’m not sure if I took up the mantle of woman in charge of ‘Activity Requiring Serious Effort’, (ARSE) in order to prove them wrong or right but I needed to know once and for all, if exercising could legitimately be responsible for an overall improvement in both my physical and mental health.

Because of my limited movements, I started off with simple chair exercises. I raised an arm here, outstretched a leg there and soon I was doing the Hokey Pokey with no effort at all. After a few weeks, I moved on to Chair Pilates, which is exactly what it sounds like and soon enough, I found that I was not made of plywood and that my body could actually bend and flex. Being emboldened by my new found dexterity, I then decided to incorporate other methods of exercise into my daily routine, starting with low impact walking Tabata (short periods of extremely demanding activity which are alternated with shorter periods of rest) as well as low impact kickboxing.

But it wasn’t all punches and kicks and sweating so profusely that I often waterboarded myself. I had to change my diet too and that’s when I came face to face with my mortal enemy…kale. I childishly surmised that if I wanted to eat some leafy greens, I could go out and graze on the grass in my backyard like the moo cow that I am. My friend Madilyn had often espoused the goodness of kale and like any normal person would, I quickly came to the conclusion that she was indeed possessed by Satan. Of course she wasn’t and I admit defeatedly, that I and the leaf cabbage are now firm friends. Soon the weight was dropping off. I had gone down three dress sizes and felt better than I had done in years. I was still in pain, nothing was ever going to change that fact. After all, chronic pain is chronic but I could move about and was no longer bed bound. Gone was the bed frame which I used to hoist my meatsack off the mattress in the mornings. Gone was the use of the stairlift, as I trotted up and down the stairs like a cantering but slightly awkward show pony (I am that girl who trips going UP the stairs) and with flexibility came the realization that my dreams could possibly come true. That I COULD finally became a pole dancer, sliding down a greasy metal pole, legs akimbo and with a come hither look in my eyes.

And then it all stopped.

I got up at 6 am, like I did every morning and my body just didn’t work. Back came the stiffness. Back came the heaviness. Back came the nausea and the inability to even raise myself from my bed. Back came the wheelchair and the anxiety. The pain, which had never gone away, became even more crippling and it seemed like the last 8 months of well-being had never taken place. I still got up and I still exercised, pushing my body into a routine that I did every day but which now felt alien as my arms and legs failed to cooperate with each other. So now I’m in this kind of fitness limbo where my body will let me exercise but it wont allow me to do anything else. The highs of endorphins coursing through my veins, no longer lasts for the rest of the day. Twenty minutes after exercising, I am back to being unable to walk or stand for long periods of time, or dance around my room whilst tunelessly belting out K pop, leaving the cat and the Womb-Fruit, holding their ears and running for cover. The chronic fatigue which had been manageable, is now back with a vengeance, as is my low mood and I am left exhausted and feel at the point of when I was first diagnosed many moons ago.

The doctors have no explanation as to why I seem to have taken a step backwards. Why my body decided to no longer fight the fight and to be honest, it sucks. I had a glimpse of what it felt like to be “normal” again and I miss it. But no matter how hard I try, the joie de vivre of the last few months, seems to have alluded me forever. So, exercising when you’re chronically ill, does work…up to a point, well, for me at least. I’m sure that there are many people out there who have had some genuine successes and I feel both happy and a little envious for them. But at least I gave it my best shot. The only upside to all of this, is that I no longer have to hear the doctors telling me that all I need in order to get better, is to exercise.

Don’t Trust Me, I’m A Doctor

So, can anyone tell me the correct etiquette for when one discovers that their Doctor is a treacherous, meritless, duplicitous, Janus-faced piece of human excrement? You see, last year, I asked for copies of my medical records. I was quite prepared for a large file full of my ailments but what I received were several tomes of utter bullshitery, lies and discrepancies.

I soon found out that several illnesses that I had, were not listed and conditions that I didn’t even know I had, were. These included Parathyroid disease, Esophageal Motility and Cardiovascular disease. None of these have ever appeared in any discussion between my doctor and myself. I also discovered that this man, this supposed paragon of virtue, had tried to put the kibosh on any kind of walking aid. This is the man that has seen my descent from healthy individual to someone who was unable to walk or talk and this is the man who has witnessed the accelerated deterioration of my mobility and yet he still saw fit to leave a note to the Patient Appliances specifying,

“Please see attached referral. Patient appliance service. Do not supply any walking aids, ie crutches, walking stick, frames etc…”

Fortunately, the Surgical Appliances Officer disregarded the request and agreed to send crutches and extra stoppers (the old ones were dangerously worn) but that was back in 2014 and  I still haven’t been told about these items. I’ve been using a wheelchair for the last year but a part of me wonders if Doctor E. Go. Maniac, had also tried to fight that decision, because it seems as though my doc is a man who will happily put on the mask of friendly, empathetic GP to my face, whilst all the while, metaphorically stabbing me in the back with a 10 inch blade.

The man is a weasel, the lowest of the low. He is a wayward surly onion-eyed, clay-brained gudgeon, mumbling guts-griping punk (you just gotta love those Medieval cuss words) with no moral compass. For years, I’ve been trying to find out about my body tremors. I’ve had countless neurological tests and have been told sod all. But right there, in plain black and white and written in my medical records, is the word Hemiballismus, along with a description of my jerky movements. Hemiballismus is a rare neurological disorder caused by several dysfunctions in the brain and 500 times rarer than Parkinson’s disease. But I didn’t know about any of that because I was never made aware of it. That diagnosis was made back in 2014.

The worst part of all of this, is the utter betrayal from someone who I have known for over 20 years. He has known the Womb-fruit since he was a mere bump in my tummy. He has shared private info about his life and family, which no doubt, breaches his ethical code. We have chatted, gossiped and laughed. He has seen me breakdown on numerous appointments and has always appeared cheerful, empathetic, sympathetic, caring and nurturing. He once assured me, after a particularly bad episode of depression, that he would omit certain information as to not impede my job opportunities. And when I could no longer work, wrote letters to the powers that be explaining why I couldn’t join the work force…except he didn’t. He was obviously at home throwing daggers at my picture and sticking pins in a voodoo doll of my image.

It turns out that the good caring Doc had lied on a large scale. Lies that could have potentially caused a lot of damage. There were secret meetings with certain authorities which he asked for but never attended. Stories that detailed occurrences that never were. Tales of drug use throughout pregnancy. Threats supposedly made by me that would endanger the lives of others. Reports that I was more than fit to work and I, was unaware of all of it. No wonder his secretary turned a whiter shade of pale when I had originally asked for my records. It’s no wonder that she kept putting back the dates of when I could collect my weighty tome. It’s no wonder that she looked nervous when I arrived to pick them up and it’s no wonder why she seemed hesitant to hand them over to me, a nervous smile upon her frightened face. 

I admit that the whole thing left me angry and depressed because for the life of me, I cannot fathom why Dr I. Keel Yew, would act in such a manner. Did his smile hide his disdain for me? Did he think that I was lying about my failing health? Putting on a performance worthy of an Academy award.  Now I’m left facing the decision of what to do next. Do I report his treacherous arse? Demand answers? Ask for an investigation and an apology?  I am by nature, a fighter but this has sapped every ounce of strength that I have. We as patients are meant to trust our physicians, I mean they literally hold our lives in their hands. But it’s hard to trust the Doctor paid to heal you when they seem more intent on causing you harm.

“Doctors are sadists who like to play God and watch lesser people suffer!-Bren MacGuff”

Juno (The Movie)

 

According to the government, you aren’t really ill.

Last Friday, I received my Health and Assessment form from the Department of Work and Pensions (DWP). For those outside the UK, the point of this form, is to prove that one is ill and how that illness(es) affects one’s day to day life. What it in fact does, is to call people who are truly disabled, liars.
You will be asked to provide medical evidence which they will then promptly ignore. They will ask for confirmation from those involved in your treatment, from doctors to physio therapists to mental health professionals and then ignore them. They will lie and use words to minimise your condition(s) and ask claimants to describe their condition while avoiding words like “chronic” or “degenerating” because they “sound worse than they are”.

 They will paint you out to be a fake and a benefit scrounger and when that happens, you will be deemed “fit for work.”
It doesn’t matter that every year, hundreds of people who are found capable for work, will face sanctions, which in turn will lead to poverty, mental breakdown and death. Their aim is solely to hold back on giving any monetary assistance. Their tagline is that working is known to make an individual feel better about themselves, and to some extent, that is true. But for those who cannot get out of bed let alone enter into employment, this is a potential death sentence.

Of course, those in power do not care, We are dispensable, one last parasite for the government to care for. Those of us under the “disabled” banner, have no rights and no voice, or as one friend so perfectly stated, “It seems every year, every month, every week and day, we move further into a world where the ill and elderly are cast aside, silenced, and damn near killed off.” And so begins the fight to yet again, prove that I am ill. It isn’t the first time and I’m damned sure that it won’t be the last.

This pain

This pain is a new pain. A constant, gnawing, clawing pain.
It’s an unremitting pain, a “can’t get away from it” pain.
It’s a can’t walk, can’t stand, can’t sit or rest pain.
It’s indescribable and overwhelming, an “I can’t take anymore” pain.
It’s a breath stealing, teeth gritting, tears flowing pain,
and it’s exacting in it’s brutality and unforgiving in it’s relentlessness.
But more than that, it’s just bloody exhausting.
It’s wearing, soul destroying, and all consuming
and unfortunately, it is the reality of my life.

Have you ever had one of those days…?

Have you ever had one of those days/weeks/months/years where you think, what the fuck is the point?
It’s not just the relentless fatigue nor the unremitting pain, it’s being surrounded by a sea of faces and still feeling alone.
It’s the never ending doubts by some and the infinite judgements of others.
It’s the constant eye rolling and the non too quiet sighs.
It’s refusing to explain my illness because even if I do, I’ll be met by the self-prevailing wisdom of the “well I’m ill and I still managed to get out/work/exercise etc,’ the competitive nature of the “I’m sicker than you” brigade and the pig ignorance of the “there are people worse off than you’ fan club.
It’s the lack of support, the always having to be there for everyone even though there is no one there for you. It’s the old symptoms, the new symptoms, the intermittent symptoms and the permanent here to stay symptoms.
It’s mourning the past, ruing the present and fearing the future.
It’s everything and more all rolled into one and the constant thought that this is not how my life was meant to be.

Dear Chronic Illness…

Dear Chronic illness(es), I’d love to say that it’s been a blast but then I’d be lying.
I think the time has come for us to call it quits. Listen, It’s not me, it’s you. You’ve been a big part of my life for 10 years now, but in the last 3-4 years, you’ve changed. You’ve become more aggressive, more controlling and your need to take over every inch of my existence is wearing me down both physically and mentally.
At first I tried to ignore what was going on. Back then, I was still afforded some freedom and a sense of normalcy, but now, now I feel trapped and weak. Because of your interference in my life, I am no longer the person that I used to be. Where there was once sunshine, now I see only darkness and the little flickering hope that used to posses a corner of my heart, that tiny glimmering light that indicated that all would be as it once was, has been blown away by a faceless breath.

I want my life back. I want to be normal again, FEEL normal again but I can’t do that with you still lingering around. You’ve taken so much from me already, my independence, my sense of self, my longing to see what the future holds. The only positive is that I’m bent but not broken. I will never allow you to fully break my spirit, although you’ve come bloody close.
I am tired of living this pathetic life of doubt and solitude and would be most grateful if you would untether these chains of ineptitude and crippling sorrow.
All I want is to be free to be me once again. I want to live and not merely survive, so if you could kindly piss off, I will forever be in your debt.

Lily.

The Miracle Cure

heal
verb
3rd person present: heals
to become sound or healthy again.
synonyms: make better, make well, cure, treat successfully, restore to health, get someone back on their feet, put someone on the road to recovery; More

I’ve just read an article that boasts of a cure that will “heal” the most hardiest of disorders. Vertigo, Lupus, Fatigue, Arthritis, Fibromyalgia, Thyroid Issues and many more, will now become a thing of the past, thanks to this miraculous creation. Now that’s quite a bold claim to make considering some of these conditions, so what is this extraordinary elixir that can do what many medical professional have, throughout the centuries failed to achieve? Thyme. Yep, you read that right, thyme.

Apparently, drinking this herb with a touch of honey everyday, will stop your bones from thinning, (arthritis) halt the deterioration of cartilage, repair tissue damage, (osteoarthritis) stop your immune system from attacking the healthy cells in your body, (Lupus) regulate your thyroxine levels, (Thyroid) and correct any neurological disorders that affect the structure or function of the brain or spinal cord. (Fibromyalgia)
Not only that, but it’s also great for multiple sclerosis and even Hashimoto’s.

Why then are we not bowing down and worshiping this aromatic perennial evergreen herb? Why is it not given on repeat prescription? Why isn’t there a treatment whereby this glorious plant can be administered intravenously? And why is there not a God dedicated to the wonders of the Thymus vulgaris? WHY?!
In all seriousness, I know that certain types of thyme have medicinal properties and contain antifungal, antibacterial and insecticidal qualities, and no doubt can help in soothing some of the symptoms of many serious medical conditions, but those are a type of thyme cultivated for medicinal use. The article that I read only mentions dry or fresh thyme and not the various kinds such as wild thyme, which research has shown can induce cell death in breast cancer cells. To suggest that it can therefore “heal” is a dangerous proposition to put forth. No amount of drinking thyme will stop my bones from deteriorating or stop my body from attacking and damaging its own tissues.

To claim that something can heal, preys on those who are desperate for an answer to their pain and brings expectation and hope. And when that doesn’t work out, it leaves behind depression and a sense of hopelessness.
If the article had stated that thyme was a useful herb that could help alleviate certain symptoms, I’d have no problem with it. It’s the word ‘heal’ that consigns it to the ‘quack’ pile of medical articles.

WARNING-Cuss laden rant in progress…

When the toilet was first invented in the 16th Century, customers all used the same piece of rag to wipe their delicate posteriors. Well today, I feel like that rag.

When I was younger, I was once told by a doctor that there was “no such thing as stopping breathing whilst you’re asleep. It simply isn’t possible.” I remember leaving her office feeling somewhat depressed, ignored, angry, suicidal and exhausted. I knew that I wasn’t imagining the fact that my breathing was being interrupted up to 30 times a night, or that I woke up several times gasping for air and unable to breathe, but that doctor made me feels so utterly worthless, that I never mentioned it again until years later and instead, continued to suffer in silence.

Nowadays, we all know that sleep apnoea exists as a very serious sleep disorder, as well as the danger that such a condition poses.
Today, I received a letter with the results of my recent sleep test, I mean, what the actual fuck?! It came back as negative for obstructive sleep ‘apnoea and nocturnal hypoventilation’ and now I feel as though history is repeating itself again. That I am not being heard or taken seriously. I am so pissed, I could spit in a Camel’s eye!
The goat felching boiled brained barnacle of a doctor, didn’t even list any of my medical conditions except for fibro and suggested that I be fitted for a mandibular advancement splint device to stop me from snoring. What a bunch of fuck-witted twattery!

I know that I have sleep apnoea. I have woken up gasping for breath, horrified at the thought that that night could be my last night on earth. I have felt the moment when my breathing has stopped and I’ve had to kick start life into my lungs by forcefully expelling what little air I have left. Both my mum and my womb-fruit has been witnessed to many an episode, but that beef-witted, maggot pie weasley arse-clown, is basing his diagnosis on 4 sodding hours of broken sleep. How is that bollockery akin to an in depth sleep study??!

There is no way in Hades that I’m accepting the results. I have fought long and hard and waited a lot of years just to be taken seriously and now some prat-faced testicle wants to tell me that my problems are due to snoring and that my fatigue stems only from a lack of vit D and iron and not the fact that I suffer from ME and CFS (along with several other conditions were fatigue is also a symptom). Well Dr Vladimir Yeasty Measled-Tosspot, better don some armour wear for our next meeting because it’s gonna be an all out battle of a war…the ignorant twat-waffler. If it comes down to it, I will by my own CPAP machine because I am so bloody tired of being ignored and made to feel as though I’m  some hysterical female suffering with a touch of the vapours, who doesn’t know the workings of her own body.

Okay, that ends my Medieval worded cuss laden rant for today.

The Problem With Fibro…

The problem with Fibromyalgia, is that it is a PR nightmare. Often seen as a trendy disease because “everyone has it”, it is often derided on TV programs, films and in newspaper articles, mediums which also portray those who are affected by it as something as a joke. This is made more so by the fact that there are no outward visible signs of the disease or that there aren’t any definitive blood tests, at least in the UK. (although there is a FM/A test in the US which costs just under 1k) Instead, diagnosis is made by a process of elimination as well the 18 Tender Point Test, the results which few ascertain, can be easily fabricated. Some class it as a modern day pandemic, a hypochondriac’s dream. And because many of its symptoms are often linked to other ailments such as lupus and arthritis, Fibro isn’t really seen as an illness at all, but rather a myriad of symptoms of something yet to be diagnosed.

Fibro’s PR isn’t made any better by the fact that half the medical profession doesn’t believe in it’s existence or insist that it is all in the mind. Something that a few sessions of CBT therapy will sort out. To talk about it is to risk ridicule and disbelief and thus the bad press is set to continue. Some even believe that to talk about it is to enable it. But to talk about it is not the same as enabling it. Talking about it does not continue the illness. As one woman told me, her family demanded that she not speak about her illness as she was “making it real.” But it is real and to talk about it is to bring about awareness and understanding of something that is a genuine and disabling condition to those who live with and suffer through it daily.

There is another problem which backs up the negative attention that Fibromyalgia garners, and that is the disunity among some Fibro groups. Instead of binding together under a common cause, arguments centre around whether it’s an auto-immune illness or not. Whether it is brought on by trauma, illness, injury, is hereditary or congenital, and there’s huge debate on what to call it. Is it a disorder, a disease, a condition, or just classified as widespread pain? Some of these discussion tend to become quite heated with people being cited as “not really having the disease” or being accused of faking it because they dare to have a differing opinion. So how then can those who know nothing about the condition make sense of it when there is so much discord going on within it’s own community?

When Lady Gaga made the announcement that she too suffered from Fibro, she was lauded by some as a possible saviour, a much needed advocate. Someone that the world would listen to and take seriously. She would be the one to put Fibromyalgia on the map. But soon, even she was drowning under a river of scorn as people proclaimed that it’s was okay for her to be ill because she had the money to afford the best medical treatment. How then could she speak out on behalf of the rest of us?

Until we stand together and cease to belittle one another, I fear that Fibromyalgia will never be taken seriously by the public at large and that the majority of us will continue to suffer with the indignity of being seen as “fakers.” We need to stand up and be counted, to come forward and to tell our stories. But above all, we need others to believe that this is real, that we are valid and so is our illness.