Heightened Senses

Hello. I'm Imraan. This is the only thing I own outright; I write from time to time, in the hopes that free-association might save a trip to a sanatorium.

Category: severe-ME

Sweet dreams, pray hard …you scumbag politicians, complicit and bought-off media, and Godless institutional oligarchs…

‘Let’s be clear what it at stake: services, people’s health and even lives. As Professor Terence Stephenson of the Academy of Medical Royal Colleges put it last week, doctors’ warnings had been ignored, and “unnecessary competition [would] destabilise complex, interconnected local health economies, in particular hospitals, potentially having adverse effects on patient services.”‘ Owen Jones, The Independent.

Please read this article – and if you’d rather not – here are my thoughts on the reforms to the NHS in a slightly broader context.

For those of you who voted Tory (that’s ‘Conservative) at the last election, and New Labour at the previous ones…thank you so very, very much.

As a disabled person who is in need of NHS services regularly, I have experienced first the sub-standard care that comes when you turn healthcare into a racket based on the coldest, most dehumanising economic principles…from being unable to see the specialists that I need fourteen miles away from my home, in the very city in which I live, as ‘there is not enough funding in the PCT to justify it’; to waiting over a year for an application to be heard with regard to getting in-patient rehabilitation (as yet with the case in limbo sandwiched somewhere between a bureaucratic fat-cat’s wallet and pool of blood resting in his chalice..)

..to being discharged by physiotherapists and occupational therapists repeatedly because my recovery has been ‘too slow’ to justify me ‘being kept on the books’ (how’s that for economic?) –  maybe four times in the last year – twice after just two visits…. – my being forced to see psychiatrists because the institutions were at a loss (both in terms of finances and morale, and even expertise) to be given drugs, effectively to shut me up and stop complaining (incidentally, these drugs have only had a negative effect on my health)… as I said, thank you, dear comrades.

…Yet there are countless others who have both lost their lives or have suffered the most dehumanising cruelty at the hands of an institution, and a government, and a complicit public, whose responsibility has been to protect the vulnerable. I didn’t plan on falling sick at 18 and not being able to contribute to the services on which I became forced to be reliant (no, I don’t have a sense of entitlement – just had a hope that I might be able to leave a better NHS behind for my own, and your children)… but thanks to those of you who justify propping up a godless financial behemoth, killing millions in far-off lands with money you have stolen from your own fellow citizens to fight for natural resources that you were never entitled to… you know what….thank you again.

…Forget just the atrocities committed against those of us reliant on the ‘welfare state’, and what grief we have to go through to ‘prove’ we are sick or in need, with less than 0.5 percent of us as fraudulent claimants to disability support… think how many months we are cut off from financial support etc, to be forced to rely on people who can barely afford to feed themselves…. There is blood in your hands, in all of them, in mine too… in your bellies because of the unjustified sustenance procured at the hands of your soldiers, in your wallets because of the circulated wealth that has come from robbing it out of the pockets of those who needed it the most through ‘savings’ (not ‘cuts’)…

But of course if you know not of anyone who is in desperate need of these services which were a birth-right to them, and to you, a part of the compact they have made as contributing citizens to this country, and to each other (that’s you included), you will sleep in relative peace tonight as the lives of millions of them are ravaged further after today. Sweet dreams, comrades.

…Hopefully Hell won’t spit you out in disgust… I say this not flippantly – but if you happen to believe that Christ died and arose for your sins this weekend…Happy Easter to you. Enjoy the festivities with your families… but think about this… how many others are you killing off for your sins? That you will never be able to be vindicated for nor redeemed, without an act of all-out sacrifice and nothing short of Grace… pray hard for your souls…pray very, very hard indeed.

A Struggle for Compassion – (Please share, reblog, etc.)

There are those beings that have touched our lives in profound ways – guiding us with that torch of Hope where we only saw Darkness. Emily Collingridge was one such being…a Saint…a human manifestation of Mercy, of Patience, of Love.

Yet I had never met her – but the hope and help that she provided through her invaluable book on Severe M.E let me know, when I relapsed almost two years ago to the day, that I was not alone. When I was cast into a very dark and scary world of Severe M.E.Today marks one year since she passed away at the age of 30 – after a long-fought battle with Severe M.E – a disease which had crippled her since the age of 6. Yet in her ‘later’ years (and it is such a tragedy just to call it that), she wrote a book from her bed, over the course of a few years, even when she couldn’t physically write, to inspire both hope and pragmatism to the lives of the so many who have had to endure this vicious, crippling illness, not just because of what it does to their bodies, but the emotional trauma it causes to them, their families…and perhaps most tragically, to the strain it puts on the humanity of those who are supposed to be working in the compassionate profession.For me, Emily – through her book – provided as space of hope, of empathy, of understanding, where the medical establishment could do no such thing and shrugged their shoulders in bafflement.

I periodically post things about this condition – not only because it has contributed to making my own life extremely difficult these past six years, but because there are those whose suffering is much greater than mine. This condition has a way of ravaging almost all of your resources – where the physical act of living can be a struggle for your sanity. There are those who cannot raise their heads from their beds, who are fed through tubes, whose physical pain would be deemed unbearable if a ‘healthy’ person would experience it just for an hour.

Yet this disease is constantly mischaracterised in the press, is dismissed by much of the medical establishment, and is granted virtually no funding to help to find treatments that might take the edge off, or help to promote recovery. Please read Emily’s Appeal today, if there is one thing you can do – I am a firm believer that change will only come for this community if we start from acts of passive compassion. Just try to understand it first…be ‘aware’, pray if you can.

If you can then do more, please do so; yet if you ask many patients, the first thing they’d say is that they would just appreciate some awareness. Not because they’re martyrs – they are already living with such a plight – but because they are systematically victimised and betrayed by the institutions that are supposed to protect them, and all those that are vulnerable.

May she be at Peace, finally.Links:
Emily’s Appeal:http://www.blogistan.co.uk/blog/mt.php/2011/05/28/me-awareness-emily-collingridges-appeal

An Obituary for Emily Collingridge:
http://www.blogistan.co.uk/blog/mt.php/2012/03/20/emily-rose-collingridge-1981-2012

http://www.stonebird.co.uk/contributors.html#lifewithme

Silent Screamsmy account of life with Severe M.E for M.E Awareness Week 2012.

M.E Awareness Video by Daisy H.:

Seyyed Hossein Nasr – “Sunnism and Shi’ism: Yesterday, Today and Tomorrow”

Here is an awesome lecture delivered by a scholar that I admire a great deal – he is perhaps the most important Islamic philosopher (certainly the most prolific, as far as I know) of the last century.

This talk outlines the theological differences between the two schools of thought, and he goes out of his way – and rightly so – to demonstrate that in terms of jurisprudence and for a great deal, theology, the differences in the schools of thought are quite minimal. He clearly demonstrates how the major theme in Islamic Thought today (especially that which is promulgated by certain state with petrodollars) resembles far less traditional Sunni orthodoxy than we in the West might think.

The fact that more books exist today about the Shi’a than traditional ‘orthodox’ Islam (which comprises the largest majority as a percentage from within any major religion today) tells me, at the very least, that our faith is being highjacked in favour of a more ‘puritanical, rationalistic’ Islam. Moreover, his analysis of the modern state that is now Saudi Arabia is very astute – especially in his reference to the transfer of technology from the US to SA.

If you can take an hour out of your day to watch this lecture (and even take notes), I would certainly attest that it would be well-worth your time. We need more people like Dr Nasr who will try to highlight how similar the competing narratives of Islamic thought actually are, and that how historically we, as Muslims, lived in very congenial circumstances – and to a large degree still do. Predominantly, the great cause of this discord within the community is proliferated by the Islam that al-Qaeda tend to promote – not by those very minimal theological and jurisprudential differences orthodox (Sunni) Islam has hen compared to mainstream Shi’ism.

In fact, the major point of this talk is that we as Muslims can continue to coexist despite these differences, and despite the catastrophes and humanitarian disasters being created in the Middle East today; efforts are still ongoing today to build bridges and continue to acknowledge one-another – but I fear that to a large extent these efforts are being undermined by that new, puritanical form of Islam which underpins a tyrannical regime which is actively creating discord in the Muslim world.

As a Muslim who tends to fall closer to the Shi’i tradition, I still hurt when I read about the highjacking of the faith because no doubt do these people commit a great injustice to the Sunni tradition – I call on the Shi’a (though many already do this) to equally rise up to the challenge of defending the Sunni orthodoxy for all its beauty and contributions, as well as academic integrity and diversity. It is our duty as a community to not let the legacy of or beloved Prophet – the Mercy for all the worlds – to be desecrated in the name of these illegitimate ideologies; we ought not be divided at their hands and their colonial masters. Islam has so much good to contribute to our world – without unity and the acceptance of each other, we will fall short of creating the best possible world. The Shi’a tradition emphasises heavily our duty to the Mahdi – we cannot be fatalists and let our creed, and the dignity of our brothers, be destroyed from within.

Simon Wessely gets courage award (from a bunch of his mates)

Simon Wessely gets courage award (from a bunch of his mates)

How tragic is it that such people, who shouldn’t be allowed to work with the vulnerable in the first place, are treated with such high esteem. I’ve heard of countless cases of patients who claimed to feel as if they were tortured under his department.

For how long are the community going to stand for this? Marginalised when we protest the inhumane treatment under the model devised by this doctor, or treated as malingerers when these treatment protocols fail to help us (as in my case – I relapsed during the process of being treated using the protocol devised and favoured by him) – what ever happened to patient-focussed medicine? Or rather, care-focussed treatment.

Silent Screams

‘Silent Screams’

Opening Quote, from Emily’s Appeal:

“As I lie here, wishing and hoping and simply trying to survive, I (and the thousands like me – severe ME is not rare) should at least have the comfort of knowing that there are many, many well-funded scientists and doctors who are pulling out all the stops in the quest to find a treatment which may restore my health and that the NHS is doing all possible to care for me as I need to be cared for – but I don’t. This wretched, ugly disease is made all the more so through the scandalous lack of research into its most severe form and the lack of necessary, appropriate support for those suffering from it. This is something that must change.”

When does a life lived become a life lost? This isn’t an attempt at being clever nor rhetorical, for I am neither. However, as I write this, my heart – and those of countless others – beats and in between those beats resonates almost nothingness.

The plight of those afflicted is beyond words, not because it is indescribable but because the level of empathy required to appreciate its severity and extent goes beyond ordinary human capacity. Yet on the rare occasion when one is afforded such dignity in the form of the understanding of her physician or specialist, there is not much that can be done.

How unrelenting are the nights, or how treacherous are the days? How many countless lives go hidden, and forgotten, except when they reach out, demanding to be heard through ‘silent screams’ because their ears cannot bear to hear the owners’ own voices, or when a cry for help results in countless hours of physical pain and suffering?

There are many reasons for which I write this piece. I warn you now that to a great extent, I intend it to be a piece of activism for a condition that, though well-known in the UK, has had a negative press, separating the condition from the sufferer.  I have no major expectations for this article; I can merely hope that, by helping to inform some of today’s students and tomorrow’s leaders, the discourse would be made more flexible, and that something would consequently be done about M.E.

This week is M.E- Awareness Week; a period intended to bring to the public consciousness the plight of the two-hundred and fifty-thousand (or plus) sufferers in the UK, of a condition whose origins and causes remain unknown, whose experience is very subjective, and whose reality can be terribly cruel.

(Note, this is a long piece. If you’d like to read the conclusion, click here. )

I often think of it as a selfish disease because it is a very inwardly affecting condition; contained within the body is (for want of a better word) an ‘entity’ which can mar every aspect of one’s life, [from communication, cognition, movement, mood, to the sensory perception of the world]. I’m sure fellow sufferers would agree that their bodies, for much of the time, can turn into cruel prisons. And this isn’t an attempt at rhetorical flourish. A prison, in my view, is a peculiar social institution; far more restrictive, regimented and self-contained, entailing entrapment of the inmate’s ability to do the smallest of things, for which s/he is at the mercy of the guards.

Those guards, or symptoms, which are often present in many cases include extreme fatigue – far beyond any fatigue imaginable, to extreme cognitive impairment, ‘brainfog’ – where speaking, planning and executing of the smallest tasks becomes a gruelling battle of will against oneself; and very disturbed sleep or insomnia, or hypersomnia. Pain, which in many cases can affect the joints, muscles (and sometimes) skin, makes physical contact, exertion and movement very limited. Sensitivities are heightened – (though I don’t drink) I imagine it as having a perpetual hangover; one can become so sensitive that even the dimmest of lights and sounds can send me and others howling with pain, although really, the screams in this case might be silent as sometimes even our own voices can be too much to handle.

Other symptoms can include nausea, muscle weakness, cardiac problems, vertigo, depression, inefficient thermal regulation, abdominal pains and irritable bowels, compromised immune systems, post-exertional fatigue lasting for days, weeks, even months. Perhaps most would agree with me that in whatever way it manifests, one can’t help but to actually feel very ill almost all the time. According to some, there are over sixty symptoms recognised in this condition. Of course, merely listing the symptoms doesn’t begin to do justice to the actual experience of them.

Quite likely is that you have passed someone who lives with this condition; although you might not always recognise that this person is unwell, that (more often) her body is undergoing immense strain, that she is feeling so physically sick that it taints her every experience. Around three-quarters to four-fifths of sufferers experience ME in a mild to moderate capacity, where they may experience some degree of many of the symptoms, and even then, it can have dramatic consequences on the quality of their lives.

And quite likely is it that in their position, they couldn’t (quite justifiably) perceive that their experience could get any worse. Not just in terms of living with and in a body that reacts horrifically at the slightest exertion, but getting support from doctors, social services, benefits agencies, simply because they don’t ‘look’ unwell, or because there aren’t any tests which categorically can diagnose this condition.

You would be quite within the mainstream (and possibly very logically so) if you thought that by this point, M. E. sounds a ridiculous or made-up illness; and unless you had experienced such a plight or similar, or seen it first-hand, you could not understand what a toll this disease, often (flippantly in my view) called ‘chronic fatigue syndrome’, has on a person. I, along with many, would (probably) long for a day when this ‘fatigue’, as defined in the general lexicon, was our only barrier to leading an ‘ordinary’ life. But for most, the reality is much grimmer. To most, the sensation of feeling so incredibly sick, as if [one was running a gruelling marathon whilst suffering the worst flu of their life], is in many cases, something which consumes most of one’s daily life.

Only that they’re not running a marathon; instead this feeling of dis-ease would be brought on by simply preparing or consuming a meal, getting dressed, brushing one’s teeth, reading a few sentences – all of life’s mundane activities that need doing somehow –  become a battle of physical, mental and emotional resources.

Yet at its worst, M.E might feel like not merely a prison, but a slave-labour camp where cruel torture is executed on the inmates, often without logic and with extreme prejudice. Again, no flourish intended. Some fifty-thousand sufferers in the UK are predominantly housebound or even bedridden totally, for years; leaving their houses rarely, but always in wheelchairs or on stretchers. The symptoms can include transient or even long-term paralysis, (often extreme) jerking of the body, seizures and unholy pain for which morphine is often not enough.

At its worst, sufferers are confined to their beds, not able to sit up, are fed through tubes going through their noses or directly into their stomachs; they can even often become temporarily blind and mute, and without necessary cause. Unable to bear the slightest light or sound, these patients are denied the luxury that is mere conversation for even a minute, constantly needing to reside in a dark and silent room to stop the body from experiencing even worse pain and overreacting to the slightest stimulus, and the (feeling of) suffering which, to the untrained eye, is incomprehensible, but to the sufferer, is incomprehensibly real.

What is scandalous is that the trained eyes, for example, doctors and other healthcare workers, often refuse to believe, let alone acknowledge, that the suffering exists. This applies to all cases of M.E., mild or otherwise. Governmental funding is extremely limited, despite the condition’s relative frequency, and even larger than we know, as many cases are misdiagnosed, or dismissed by doctors altogether. Many fall into the cracks of a rather broken system.

It is a well-known fact, at least within the M.E. community, that much of the funding goes to psychiatric interventions, or graded exercise in the form of physiotherapy, which, though helpful to some, have made others more ill due to forced rapid overexertion.

I for one, am confined to bed for about 21-22 hours a day; I spend most of the day reclining or propped up, either with my eyes covered or wearing specially made darkened sunglasses in a room with blacked out windows, as far away from the noise of the house as possible, yet still often having to wear earplugs. I have ongoing experience of the seizures, the (thankfully very transient in my case) paralysis and extreme pain for which five painkillers (including morphine) doesn’t always suffice. As a student, I have twice dropped out of university, due to ill health, and experienced times where reading a couple of sentences resulted in my falling asleep on the floor of the university library floor for hours.

But others aren’t so lucky as I. I can have fairly lengthy conversations (for which I often suffer immensely afterwards), or can be propped up by pillows and cushions for some time. Once or twice a month, I can have friends over for short visits, sometimes longer ones. I have the luxury of being able to go for a short wheelchair ride out of the house, given adequate preparation and rest beforehand. I can eat a meal because my nausea can be controlled by three different medications. Other luxuries include being able to watch the odd TV programme if the light and sound sensitivities subside. To sit unsupported for 25 minutes at a time. To hold up a mug most days. To use cutlery. To wash my face or hold up a toothbrush to my mouth. But, like I said, others aren’t so lucky.

Link to conclusion should lead the reader here.

The recent death of activist and campaigner Emily Collingridge, piece (whose death was only covered by the Guardian here) who died earlier this year at age 30, after her 20 plus year battle with severe M.E, goes to show how horrific and tragic M.E can be. Her appeal to the world can be found here, which I urge you to read; from which I drew much inspiration for this piece.

I am in no position to say that mild or moderate M.E., is less significant in terms of the sufferer’s plight, as compared to that of the severely affected patient, because I have been there and at the time found it unimaginable to get any more sick; but I hope I can do some justice to those more severely affected than me who have simply been whitewashed out of the public discourse, whose ‘silent screams’ (as a fellow sufferer Chlay put it in her charity single for the ME Association, Silently) whose silent screams, go unheard, because, conveniently, they are unheard.

Countless cases exist where patients have been denied access to benefits, care (even from unbelieving family members), support from their doctors who could often dismiss them as being ‘depressed’, and thus, due to forced overexertion became far more ill than they might have been, had they received the correct support early on. Patients are left self-doubting of their illness, often forcing themselves to simply ‘snap’ out of it, trying to push themselves further in the hope that what ails them would simply disappear. But this often results in is relapse, an exacerbation of all of the previous and new symptoms, rendering them worse-off than before, plunging them into new, unimaginable levels of M.E.

 As yet, there is no cure nor a known cause for M.E, and in a way, one might wonder as to how an illness can exist, if the miracles if modern medicine and science don’t know what it is.  Some moderate cases, even severe ones can make full or significant recoveries, though a combination of very strict pacing, some graded exercise (**though this can be counterproductive or even damaging if not done very, very gently, and under proper guidance**), nutrition, and luck.

But even so, its grim reality is one that sufferers have to accept, and sometimes, it is by virtue of having to accept its grim reality very fast that is the only way of coping and adapting to this often relentless, sometimes remitting, and always uncompromising and volatile condition, which we include in the folds of the definition of our lives, because it is so pervasive.

We find comfort and hope in the idea that one day, our bodies might rally, as they occasionally do; or in the friends we have; or the activities that we can manage without too much difficulty, because life, even ours, is a precious commodity. It’s such a shame, it can often pass us by. Looking out of one’s window at life, for now, has to suffice in many cases.

Lives stand still, yet the world outside continues to speed ahead with almighty force. It’s not as if we live in isolated bubbles; for those whose eyes can actually bear to see light or have not been blinded by this awful condition – and many of us spend most of, if not all, our lives behind blackout-blinds or thick curtains or lenses of sunglasses in our bedrooms – the seasons and climates change, flowers bloom and die, families grow up and expand around us. All observable, all certain. There is no quest for eternity here, no hidden agenda that the sick continue to cry out for more than what life owes them, no unreasonable demands are asked.

But what life does owe them, aside from certain death, is life itself. And in order for us to die, to have lived would be all that was asked. They would, as I’m sure they’d tell you if they could, those who were not rendered mute or forced to speak in whispers, look forward to death after having lived.

Again this is no attempt at rhetoric. In fact, rhetoric is what serves to undermine the cause, to strip us of our dignity to actually just be ill.  The rhetoric of arrogant psychiatrists, unsympathetic relatives, cruel friends and, harsh realities of social institutions designed precisely to protect the vulnerable. To change those things, even without an imminent cure lining the horizon, could make a world of difference.
 Links:

 –     Emily’s Appeal (can make for very hard reading. But please read it if you can find the will).

–     Chlay’s Chrity Single for the ME Association Silently

–     A great M.E-Awareness video  from last year’s appeal by a sufferer, Daisy. Please share via Facebook, Twitter etc.

–     The Association of Young People with ME (a charity that has helped me immensely by providing a support network, for those looking for such help):

–     The Hummingbirds’ Foundation for ME (has some great articles on the subject)

–     Emily Collingridge’s Website – which gives information about her book, which she wrote whilst bedbound when she was more well (and an excellent resource for patients, parents, carers, siblings, etc.), sold through AYME (see above):

–     The ME Association

–     Action for M.E  (“Action for M.E. is the leading UK charity for people with Myalgic Encephalomyelitis (M.E.) and their carers.”)

Trapped

An unfinished-extract from my diary from a couple of weeks ago.(edited a little bit):

 

“Whilst I was resting today, though I cannot remember if it was early this morning or when resting in the afternoon…I had a little time to think from my bed. Anyhow, it was to do with whether ME is a physical or mental illness. Some months ago, one of the BBC radio stations broadcast a programme where an ME-researcher said that she received death-threats for suggesting that ME might be a mental condition, or have a mental-health aspect to it…in fact, it was because she was researching whether there was a psychological aspect to it. It was revealed that this was the case for manyother reasearchers.

 

Whatever this might reveal (or let’s be diplomatic, indicate) about the prejudices of the “institution” against ME-sufferers -or whether these incidences give a bad name to the ME-afflicted – my thoughts were more focussed on what the state of understanding of mental-health illnesses is.

 

Though I do not in the slightest believe ME to be rooted in psychological origins, or at the very least that psychology or psychiatry cannot explain why ME occurs in patients (convincingly anyhow), what if ME was proven to be a psychiatric condition? What would be so bad about it? What difference would it make to our suffering?

 

Of course- the sometimes latent but often explicit agenda of medical researchers and medical professionals could discourage patients from coming forward to receive the help, or it could result in patients receiving types of treatment and care not suitable to their very-delicate conditions; but if that agenda didn’t exist…

 

Is it a taboo still to have a mental illness?  Though wwhen we hear that someone has a psychiatric condition (I’m using mental-health/psychiatric condition interchangeably), we mighht imagine them in a white gown, strapped to a trolly in a padded roomm at the end of a ward in a sanitarium; we know that mental-health issues are fairly widespread and do not necessarily warrant such imagery – their manifestations may be subtle, but to the patient, they are still very real.

 

I think that part of the ‘fear’ of having a psychiatric condition might cause the afflicted to believe that their suffering is subjecctive, and therefore less real! And it doesn’t help that medically there are few, if any biomarkers for their conditions; this is compounded further by the prejudice of the medical professionals we so rely on to help us manage our condition, and offer at least support if not sympathy, as it is rarely gotten from others.”

 

But if you were in the state where you really, truly believed your body to be malfunctioning and others suggested that it was all by virtue of the tricks your brain played upon you, you might start to doubt all your thoughts, all your motivations, and the very fact that you were sick. If it was in fact the case that your mind, ego, brain  – whatever you would wish to call it – was at the root of your illness, and that the only filter you had to view the world was through this mind and you were a slave to your consciousness, doesn’t that warrant even more support from those who were paid to care for you? But it goes beyond this. We are trapped in bodies that are unrelentingly uncooperative – the extent to which they malfunction are magnanimous (just ask an ME patient who gets temporarily paralysed or experiences seizures or blackouts randomly) – what care couldbe provided to patients who suffer so. Part of the fear must be that if a psychiatric cause was found, then ME patients would be subjected to conventional therapies. So far as I can tell, I’m not sure how you can think yourself out of paralysis or stop a seizure midway by changing the way you think about it.

 

Isn’t it a testament to our mental and inner-strength that we live our lives in acceptance of this grim reality?

 

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