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

Hope to move…

This past month has been absolutely treacherous in terms of my health; a scare about a damaged liver, not being able to eat food, and something strange happening neuro-chemically that amounted to night-terrors, severe panic attacks to the point I couldn’t be left alone – apparently due to my liver not detoxifying sufficiently –  and of course, pain.

Now, in the midst of this, I receive a letter. I had more or less forgotten about sending a thank-you note to an ER doctor last year who kept an eye on me as I was struggling to breathe due to pain, and I not long ago received his reply. I truly don’t feel I wield any kind of power as such, nor the ability to transform a life. But, in this state of profound difficulty as I’ve been panicking over worse news, or contemplating my mortality, I receive a response from that kind doctor. He wasn’t able to do much for me that day, but he patiently listened, empathised, and treated me with a profound degree of respect.

If I’ve learnt anything… it’s that if possible, spread a kind word when you can. I didn’t think I’d share this letter, but I think it found me at a time when I needed to read it as much as mine did my doctor. So I transcribe parts of it to serve as an example.

“Dear Imraan,

“Your letter brought tears to my eyes. It reached me at a time that I was losing faith in people and this career.

“You have motivated me to not give up, and that I can make a difference in people’s lives.

“I have never received such a heartfelt message from my patients.

“I was on holiday with my now fiancé when I received your letter, it made it an even more special moment.

“…I do remember you. I hope you’re doing well and I’m sorry for all the difficulties you are going through. Hang in there.

“Thank you Imraan.

“I cannot put into words how much your kind words have impacted me.

“Your message will always stay with me and keep me going.

“Best wishes, “

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NYTimes: My Year of No Shopping

My Year of No Shopping https://nyti.ms/2k1AuLR

Definitely worth a read, as we descend into further materialism still. Sickness and chronic difficulties make this endeavour that much harder – Lord knows how many supplements, health foods and creature comforts I need to make it through the hour, but this (whilst a little superficial) might tap into a religious impulse that society has so-quickly lost, a rage against rampant Capital and value-materialism. Even if it’s not as radical as I’d like! 

“Are Christians Supposed to be Communists?” By David Bentley Hart in the same newspaper 

https://mobile.nytimes.com/2017/11/04/opinion/sunday/christianity-communism.html 
Perhaps a little more theological, but an intriguing (and perhaps not all-too-controversial) reading of the Gospel

On Loo Roll, Decay, Emptiness and Death.

Today, I had the fortune of having a mini class-reunion of sorts; naturally I had to be stoned on my medication in order to attend, and the loudness of all of the chatter in the restaurant was only tempered by a fair dose of clonazepam, baclofen, nortriptyline, gabapentin, paracetamol and a couple of other things. It was interesting to see how quickly since the last time, people’s lives had moved on. Of those who attended, all were in serious, long-term committed relationships, two had married. Others couldn’t attend because of work and the great distances they had to travel, and others still had family-type commitments. Professional training, finishing off qualifications, taking on multiple degrees, and still able to juggle having dinner with us.

Now, I usually avoid social gatherings out of the house; whilst I can get out in my wheelchair when reclining, I’m usually warned by relatives to avoid it if possible as my health can make a scene of its own accord, as it briefly did this evening. Crippling chest spasms – thankfully, I was in a class of bona fide geniuses who are now doctors, so I knew I was in good hands if things went wrong. But I reclined at the restaurant with my feet on the wheelchair to regulate my blood-pressure, and eventually with more medication, it abated.

Thereafter, I had to attend another venue where I expected to be picked up, but it would appear life had other plans and I was delayed for an hour and a half. A decent hour and a half – but I had to at the hour mark, ask for some assistance to use the restroom.

When in there, I saw an empty roll of tissue paper (or whatever the cardboard type insert is) and its emptiness horrified me. I of course replaced it, praying I wouldn’t catch e. Coli or some bizarre infection from it. What surprised me was how much a roll of tissue paper could speak to me.

But I couldn’t quite interpret what it said. Either it suggested that my life had run out of steam, that I was quite literally empty with nothing of substance or use to anyone and a kind of annoyance, as an empty roll in a public restroom might be, or that I had quite literally (again) been used up.

The thing with Severe ME, chronic Neuro-Lyme Disease, Ehlers-Danlos Syndrome, Fibromyalgia, some sort of congenital myopathy, trigeminal neuralgia, migraines, Multiple Chemical Sensitivity,  Postural Orthostatic Tachycardia Syndrome, Osteoporosis, scoliosis, and whatever else I’m not currently remembering…. is that all of these things sap you to a husk of what one once was. Sure, today I was lucid compared to the last reunion three years ago – thankfully clonazepam helps with brain-fog and spasms to some degree – but there is a kind of emptiness I noticed as I was being wheeled into this public restroom. I remembered Elvis – what would happen if I had gone in and not made it out?

What would have been left of me, and by what would I have been remembered. For a brief moment I pitied myself, yet on the other hand I couldn’t help but consider what kind of relief it might be to others if I was gone. I returned home this evening, was helped into my room after a short rest-period, and helped to change my clothing, and then I said to the person who helped me, I’m in extreme pain.

“I’m off, call me if you need me.” And she shut the door tightly on me. I realised then that I had sucked this person dry to the point of exhaustion, and that my pain levels were really no consideration of hers. That I was unable to eat from exhaustion annoyed everyone anyhow, but what was treacherous was the coldness with which the door was gently slammed (!) on me as I complained of being in severe pain. Ho hum; technically it’s not their business unless I need an ambulance, and in honesty, perhaps I might if this goes on.

However, I have clearly tugged at the toilet-roll a little too much in my years of sickness, having just passed the ten year mark from when it all started, and much like an empty roll, it felt as if I had no purpose other than to be discarded.

And that brings me to the question of meaning; what is it the chronically ill have to do in order to live fulfilling lives? A couple of years ago an aunt of mine said, if not admonished, (to) me -” you know disabled people can still get married, they can still study,” and so on – which in and of it self is true, but of course it cannot apply to me in my current state. I try to read as much as I can, and study what interests me in-between scheduling hospital appointments and trying to sleep, sometimes when no amount of sedation is of any use. A relationship – at least a religiously sanctioned one – is out of the question and that’s fine. It is something with which I can live, but can I live with having to sleep so much?

Chronic illness is isolating in this regard – I’m surrounded by people – yet why do I feel me, or that the likes of me,  are so alone? What difference does any purpose or goal I set for myself, such as a half hour’s study in a day, or making it to the kitchen once a day for a meal, or trying to spend a half hour in total silence..what does any of that have to do with serving another human being other than myself?

Not long ago I found myself nearly paralysed to the couch, unable to move because my heart and chest felt like they were on the verge of explosion; someone said, “I’ve got to go”, to which I curtly responded, “so, I could be dying but you need to go to sleep? Fair enough.” I know I shouldn’t have been snarky, and I was likely not going to die that night (nonetheless afraid of having to call an ambulance), but still, that I needed or expected someone to assist or serve me when I had nothing in exchange to give made me sound like a selfish jerk.

With chronic, treacherous illnesses, where there is no end in sight or no real treatment available, especially where the illnesses overlap (my two attempts at hydrotherapy and the subsequent ambulance visits thereafter resulted in the cancellation of this physiotherapy because I could not just cope, and my doctor considered it dangerous), and very little can be done at a very slow pace, one considers the meaning of life. And of death.

You can’t help but ask, would others be better off if you died, because then they would have one less major burden in their life? I don’t anticipate death would bring sweet relief, and I’m not at all saying it’s an escape. Nor am I encouraging anyone to seek it.

We’ve all had those three a.m conversations with ourselves in terms of “what is the meaning of life?” – yet my existential question is, what could I contribute to make meaning?

Meaning in this sense seems inherently selfish – if I had meaning, it’d make me feel better primarily, with a service rendered to others secondary. Is the order of priorities wrong? Probably. But what is there about which I can do with regard to it? It seems all we can do in these states is to serve ourselves.

I happen to be a theist, and at some level find myself having to accept that the gift of life is still a gift, whatever the hardship. And that Graces abound – I am not poor, I have friends, I can finally wear my clothes without screaming in pain, I can tolerate lights and sounds to some extent because I have expensive earplugs, ear-defenders, sunglasses at the ready, sedatives to depress my central nervous system. But to whom is the service rendered if not to me?

What I am saying is…well, like the empty piece of cardboard roll, I feel pulled empty; and the longer this illness goes on, I’m pulling on the toilet paper of the lives of those who have to look after me. I saw tonight what happens when I complain of pain when others are running on empty.

I am thankful for the graces that I have, and the humanity with which others are so wonderful at/in serving me; yet my soul feels as if it’s dying and decaying, and that life is somehow passing me by whilst I live this existence of illness. I’d hate to think that this is the reason for which I was created and set into being, it is hard to accept. I don’t want to be a hero and ‘give meaning’ to someone else’s life, the white knight archetype or anything – I’d just like to give back.

Is the purpose of my existence to surrender? To turn almost entirely inwards, to steer into the sickness and its usual limitations and essentially become a hermit who lives a life of prayer. As the brilliant writer/author/theologian Sara Maitland once said (I paraphrase), “The more time for prayer one has, the more interesting prayer gets.” And she aspires to about 80 percent silence, being pulled into religious experience.

I, long ago, gave up on doing advocacy for these illnesses, as alas, I create an echo-chamber; at one point I thought that advocating for this state of illness would serve others; but life is precious, tiring, and busy. Maybe I might lay in bed henceforth, as I usually do, and just contemplate myself at the point of death, because then and then only might I wake up to the fact that I’m a fickle and frail being, or will I perhaps wake up to opportunities I currently cannot see?

But that’s not to say I didn’t realise the same thing, the emptiness, the void of meaning in my life and actions,  when it came to having run out of toilet-paper in that public restroom.

Fear, Pain, Death

(Edit – I was on a heck of a lot of medication when I wrote this, so I apologise for all manner of errors found in this piece, but I hope the sentiments come across as I had intended them.)

I don’t know how they do it. Honestly. Hospital workers, nursing-staff in particular as opposed to doctors who are, by design it would seem, colder and more clinical. Anyhow, this is the second time in four days I’ve been ambulanced (sic) off to the Emergency Room to deal with pain issues that I thought were akin to Satan straddling upon my chest. Satan, and an elegant the size of Satan, too.

Of course, when you have Severe ME, Ehlers-Danlos Syndrome, Neuro-Lyme Disease, and Postural Orthostatic Tachycardia Syndrome, no doctor really know what to do with you.

This post isn’t so much about what happened -and not much – the fact that I was writhing around in so much pain despite the fact that I was on enough painkillers to stun one of The Rolling Stones at least twice over was suggestive that there is something going on beneath the surface. But they couldn’t find it, and so here I am, back at home, somewhat tranquilliser and utterly exhausted.

An increasing sensation upon entering a hospital these days, however is one that really does grip me to the core. The impending sense of my mortality, and by extension, Doom. Sure, the Almighty proclaims His Mercy supersedes His Justice, according to Scripture, but yet there is so much for which I need to atone, still. My body is increasingly breaking, the doctors know-not what to do, and the ever increasing chances of a life lived with any sense of normality without battling symptom after symptom after symptom – well the negative possibilities multiply as we speak, to borrow from our friend Griffin, the Fifth-Dimesnional being.

What I cannot get to the root of, however, is my utter sadness every time the ambulance staff decide to take me into hospital. Pure and utter grief. On laughing gas today to help with the pain (the second canister I used-up this week), I was on the verge of tears. Both in resignation that I could not get a transfer to the right hospital nor have anyone manage my pain levels for me, alas, is that the world seems to cave in around me just a bit every time I’m admitted, or offered a new diagnosis. This is what is so utterly heartbreaking. My fear of the Afterlife is rather profound, I admit, but what about the fear I suffer of a life not-yet lived. Ten years have gone by, and we’re closer to no-answers, but umpteen diagnosis. What happens at the next crisis of pain, or the one after that? What happens as I watch the cycle of life and death all around me in a sterile, artificial environment where most professionals have to be detached from the patient in order to survive? Aside from my own sins, why do I fear death so much, when  I have so many friends who have systematically tried to end their own lives?

Why he utter dread upon entering the hospital, a place where I expect to be helped, where most people expect help, too? Is it because I’ve been let-down too many times and am seeing the fires of Doom ahead? Or because dismissive doctors insist that there is no other pain-type medication available to me to take, whilst I writhe around in unholy discomfort begging for them to make it stop?

Anyway, there is something about pain that is so humanising. It’s almost primal. It forces you to interact with a form of yourself so both physical and psychic that has no necessary root cause, nor one that can be treated with any simple solution. But the humanising aspect of it is that you find yourself begging for death during such an episode, or praying, or doing both…desperate for some release, sick to your stomach that you’ve wasted an evening of a relative accompanying you to the hospital to almost no avail, and finally praying that there was ‘something’ that could be done. I ramble here, but I’m trying to get to the root of why this pain has the habit of making me face-down mortality in ways not imaginable.

In years past, when I was healthier, I could easily visit the sick an the frail in hospitals, show something akin to love and make the m comfortable in my own capacity. Now, in severe discomfort and paramedics not knowing what to do with me other than “well we can’t keep giving you gas and air every time”, suddenly my comfort has taken precedent, and my own self has become the locus of my own being – that selfish part of me that only sees me and my immediate pain.

I long to see transcendence and patience, the state of riḍā, yet on the other hand how do you got about it when your immediate physical experience is only competing you to sink into the swamp of despair. Sure, you truly feel helpless, and God Almighty before you with prayers, but otherwise, where is the real semblance, even, of gnosis? Why are there days in such situation when you beg for death so you might not burden those around you, or feel guilty for having called a paramedic to you when there are genuine people dying? Sure, no one knows this for a fact, but equally pain and humility don’t seem to go hand-in-hand for me these days, for all I see is death every time I try to get some help.

Allah is Greater, and I guess I have to make peace with his will. But my life seems so lost to me, direction and purposeless, only battling symptoms and not realising how insular the conditions have made me. Maybe it is a part of a Plan, though to be let in on it might be a pleasure, too…

Pride and Indignity

The psychologist whom I visit from time-to-time suggested to me some months ago that I’m living a life of utter indignity. It’s not something that would naturally occur to me; I live in a time where all manner of proclivities, lifestyles, quirks, inclinations, and even illnesses, are, if not entirely embraced, well they are at least tolerated or given some modicum of acceptability. We live in an age of identity-politics, do we not. The greatest marker of being able to write your own narrative is to have your identity embraced by, well if not the entire populace, then at least by the ‘establishment.’ But that’s more a digression, I suppose, from my main point about indignity.

But recently, this cuts close to home. This isn’t unusual to me, in fact, many who suffer from chronic, tedious, gruelling illnesses who remain in the care of mere mortals will experience this. Some of them have told me.

After years of chronic illness, particularly with one that shows very little sign of letting-up in the medium-term, it’s only understandable that the patience of your carers wears thin. Oftentimes, we find ourselves subject to all kinds of abuse, psychologically, and sadly, in other cases, physically. It gets to a point where those that have cared for you suddenly make you think that they’re doing you a favour by doing it in the first place.

I suppose, it could be argued as such. That no-one actually owes us anything. And so, when my parents keep their adult son in their home, rent free, whilst he spends all of his money more or less on all variety of expensive alternative treatments which they reckon is wasteful, I suppose I could just turn inwards and shut-up about how hard things can be, sometimes. Yet, at other times, I cannot help but wonder why it is that the least of us is made to feel so small.

“We all have problems!” is one that I often hear. I’ve never denied it. Sometimes, I want to say, “well talk to me when you’re bedridden!” before I remember how cataclysmic my problems seemed in a past life.

I’ll give you a terribly small example. On the grand scale of things, this is not world-changing. Yet, after years of being made to feel this way, some things really get to you.
Today, I started panting from having to stand up from my wheelchair after dinner. I was already bent-over, exhausted, from the mere strain of sitting at the table. So, once wheeled back to my room (I try to walk the short distance on most days, today I did not have the energy), it wasn’t supposed to signify anything; I had not ‘intended’ anything by this panting, yet someone in our homestead took it as an opportunity to remind me of how negative I was being. I had said nothing, and had behaved as I would have was I on my own in the room, but apparently the moral they drew from the fact that I was panting had to so with, “well, some of your friends got better without needing [such and such need] from us; you need to change how you think.” Basically, stop demanding things. I hadn’t mentioned ‘such and such’ demand just at that moment, though had asked for it in the hour previous to it, though, I’m in no way able to enforce said demand. But apparently, it really got to them and they took this as the opportunity when I was most vulnerable to remind me that I was being unreasonable.

To which I said, “none of them got better from mere positive-thinking alone, though.”

“Well, maybe they did,” they said, before walking off leaving me standing, still panting, in agony, left to think that somehow it was my fault that I was feeling this tired.

And so ended the conversation. What do you do with such intransigence? I suppose, that’s what they were thinking of me, too, what with my clever retort.

“Imraan, every time we call, or you call us, you’re constantly groaning. Makes me want to take a knife…no, [they said, thinking that it was too violent an image] a hammer and clobber you on your head and tell you to be more…happy!” was another one I heard today.

I said, “but that’s not always the case, and it just happens to be the case when I call you I’m feeling at my worst [ergo, that’s why I’m calling you in the first place!]”

To which they said something about how I sound different with people outside of the house but am never a positive person to be around.

Violent imagery aside, for obviously they didn’t mean it [you can tell by how they said it], the point stands that somehow it is expected that if you’re in agony or struggling to speak, you ought not show it. I don’t tend to ‘show’ it for the sake of showing it, but it just tells you a bit about how such things are received .It upsets me that, if they’re telling the truth, that I need to work on being less negative in disposition and haven’t quite mastered how to be someone that doesn’t suck the oxygen out of a room; but equally, the point I was trying to make was entirely missed on them.

But the point remains, there comes a time when you live with such a condition that it has not only taken all of the fight out of you, but seems to have taken some of the humanity out of your family.

Maybe, again, this says something about the age in which we live, too. Look at it socio-politically  – the most needy among as are somehow made to feel that they’re being done some huge favour by benefiting out of some of the welfare policies designed to promote some (increasingly feint) notion of social-justice or wealth-redistribution. Foreign migrants with legal rights are reduced to criminals among some sections of the media. Ethnic minorities with full citizenship are somehow treated as if they’re pariahs in their own country.

Or – parents who really ought to be cared for by their families are shipped off to ‘homes,’ whereupon they’re made to feel grateful for a weekly visit from their eldest child for an hour.

Or – somehow, we need to be grateful for the fact that the ‘City of London’ brings in masses of revenue that props up our beloved nation-state and the system that maintains the status-quo, whilst the poorest in our midst are robbed of their remaining dignity and well-needed resources because of the recession brought on largely by the ‘City’ and the system upon which it is predicated.

But back on point, and forgive me, for I don’t mean to come across as whining. I don’t mean to sing the Blues, as it were. But the larger question, of course, is how do we respond in such situations.

There are very few ways in which I can escape my current situation. Earlier on in the night, I found myself begging for death, with tears streaming down my face. Only so that I could be lifted from this indignity. In all honesty, I’m terrified of meeting my Maker. I have sins to atone for, yet. That said, I’ve never considered myself a terribly proud or haughty person – though perhaps some part of me wonders why then, I was so bothered by the fact that I felt and feel so utterly belittled by them?

It’s not the first time, nor will it be the last. But the question is, is when you are in such a position, how are you to actually respond to such situations?

Mum’s always taught me, “beggars can’t be choosers,” as a means to tell me not to expect ‘too’ much out of life, especially when I’m at the mercy of some other person. But the question, I suppose is, should I be made to feel that way in my own home?

Sometimes I think she might be right  – I don’t exactly ‘expect’ that my family has to look after me, when there are other options, technically. At this moment, any other option seems a bit unfeasible; at a stretch, was I to give up my alternative treatments and claim independence from my family and be set up in a government-owned home by myself, with the state sending carers periodically to help me with my needs, I might be free of this. I suppose, then, if I really ‘wanted’ to, I could just move out, and not feel so hurt at my family, and they not resent me so much.

But on the topic of responding, there is a time when chronic illness will teach some of its loftiest lessons. I’m still to learn it, for if I had, I wouldn’t be so upset, or bothering to voice my thoughts. Humility. I think a major reason why I hurt so much is that I seem to think that I’m ‘worthy’ of being treated in a particular way by my own family, or that they really ought to give me the type of care that I would like from them. But of course, we’re dealing with other human beings. A microcosm of problems, worries, anxieties, hopes, dreams, aspirations, fears lives inside of someone else, too. Mine are obviously most apparent to me.  As are theirs them. What gives me the gall to believe that they should set aside theirs and somehow avail themselves to mine?!

But that said, why can I not yet see past ‘me,’ yet? Is that ‘home’ where I think I ought not be a beggar in the first place even ‘mine,’ to begin with? How many people have I known who’ve been thrown out of their parents homes because their parents refused to accept their illness, for example? And they’ve perfectly, legally and apparently legitimately, had no recourse to any other alternatives. How many people do I know for whom the term ‘family’ bears little significance over some rudimentary formalities and a couple of legal obligations, aside from the odd social one.

Why should I or anyone expect that my own family treat me better than I would expect strangers to, in the first place? (I admit, largely, I am treated pretty-well here, and it’s not all doom-and-gloom; but the larger point remains!) What is so magnetic or electric about me that I would expect others to somehow feel duty-bound to my own cause?! Please don’t get me wrong, I don’t pretend to be a martyr. Considering I live in the United Kingdom in this century in a thoroughly middle-class part of the country, I really have nothing great about which to complain; on the whole, my life is pretty-darn comfortable.

But the point will stand, what is it in me that demands to be treated in a certain way, or wishes for better behaviour from certain people; surely, they can equally expect it from me!

To this I have no real answer; I can only keep remembering that if the only reason why I expect better treatment is by virtue of the fact that its because of ‘me,’ then I’ve completely missed the point. What is so special about ‘me’ that I can dare to deign to expect anything? No-one owes me anything. What have I done (and I mean, ontologically) to ‘deserve’ that my expectations be met? To ‘expect’ anything, in the first place?

This world is, by design intended to break our hearts. Not such that we could grieve over it, more so that we could truly realise the fact that we are in the first place not intended for it.

 

Pain and Presence

I’m writing this, not so much as to tell the world about what’s happening with me these days; rather it is so that I might have some-place where it is recorded.

Last night, I went through a (small) ordeal, which necessitated a trip to the Emergency Room to tackle an extreme bout of pain to my abdomen, and chest. In fact, as I speak now, it feels as if it might recur and I’d need carting-off.

Pain,  which I’m not exactly a stranger to, is something that when it seizes your being, it feels as if it consumes you.

Something happened, though, when this particular pain took. It was so intense, so extreme, I was writhing around in agony, sweating, retching, burning, shouting, shaking… it was unrelenting in a way I’ve never known. Its appearance to me was profound as in a sense, it was the one thing by which my reality was defined entirely at that moment.

But I realised something at that moment, when things felt so bleak.

My mother was running around fetching me drinks to cool off, rubbing on my legs to stop them from writhing around, whilst we were waiting for the paramedics to arrive.
Read the rest of this entry »

On Tennyson, and on M.E.

“‘T is not too late to seek a newer world.
Push off, and sitting well in order smite
The sounding furrows; for my purpose holds
To sail beyond the sunset, and the baths
Of all the western stars, until I die.
It may be that the gulfs will wash us down:
It may be we shall touch the Happy Isles,
And see the great Achilles, whom we knew.
Tho’ much is taken, much abides; and tho’
We are not now that strength which in old days
Moved earth and heaven, that which we are, we are;
One equal temper of heroic hearts,
Made weak by time and fate, but strong in will
To strive, to seek, to find, and not to yield.”
——-

Tennyson wrote that. (I think!) It made me reflect on what resolve my family and other loved ones wish that I had. But what could they see of it when Will alone is not reversing the treachery that is M.E?

I am not terribly eloquent, so you’ll have to excuse my musings tonight.

I’m sorry that it seems to you that I’ve given up. I know no other way to keep the symptoms at bay – I am literally trapped in my own body that betrays me at every hurdle.

Sometimes, I see no way out from myself.

Despite my best efforts.

The physical pain is unbearable and I have borne it. The exhaustion is inexhaustible and I’m exhausted by that fact.

Being ceases to ‘be’ in any meaningful sense sometimes, yet I have no choice but to exist, awaiting its passage from me. At least in this world.

Often this seems the most pragmatic. But it lets me reflect on the blessing that it is to ‘be’ at all.

You claim my bed sucks me into an abyss, sometimes you see in me no more than my physically debilitated self. You identify me with this bed.

The bed that I despise. Or, as I once heard said, I try to unshackle myself from her bondage, yet the symptoms Amplify and I’m filled with anxiety.

Your Will clouds your Vision. I wouldn’t have it any other way, though; what right have I to ask you of anything else – you persist in feeding and sheltering me despite your Will for me? How dare I?

Life speeds on ahead at thundering pace, and is leaving me behind, and holding you back as you care for me whilst I lay, almost always limp, yet tense, in my bed.

I fear sometimes that your comments hold a great deal of Truth. Yet the relentless illness, that strikes with such caprice in her manifested symptoms, are the only kernel to which I cling that convince me of what is Real. Or at the very least, what seems Real to me.

Though the fear of the Next Life haunts me – did I really fail to do my best to rid myself of this state?

Often I wonder what His Will holds for me; and what vision I can manufacture of it. It’s hard to know the Mind of God.

Tell me what choices I have, and I will tell you that you have freed me.

What is it like to have M.E?

I thought I’d share an excellent video by Giles Meehan – speaking about the condition from which I suffer severely.

Yes, it’s a downer. But it is so important for other people to understand…because the last fifty years of clinical abuse, misunderstanding and mismanagement, have devastated and cost the lives of hundreds of thousands, if not millions, of us. This needs to change.

Please watch, and share in a bit of the experience of what it is like to live with this treachery, truly a ‘Modern Plague,’ that is M.E.

With thanks, and love,

Imraan

http://about.me/gilesmeehan

Silent Screams

Days when your body doesn't want to hear...to see...to sit...to move...to live. I spend perhaps 18-20 hours a day like this...sometimes more...sometimes looking into a computer screen next to my bed to distract me from the pain...even the boredom.  But this lifestyle is essential to maintaining my remaining fragile health. Yet I am lucky. Others are like this all their lives.

Days when your body doesn’t want to hear…to see…to sit…to move…to live. I spend perhaps 18-20 hours a day like this…sometimes more…sometimes looking into a computer screen next to my bed to distract me from the pain…even the boredom.
But this lifestyle is essential to maintaining my remaining fragile health. Yet I am lucky. Others are like this all their lives.

Please share, ‘like’, tweet this piece if you can. 

It’s about that time again in the year where for a few days I try to inform you about M.E, or just to promote some awareness of the illness that has devastated my life, and decimated six years of good health from it. The journey continues, and though there have been some improvements for me, I’m still predominantly bedridden conserving the energy so I can leave the house periodically, or walk a few metres…so that I can eat two meals a day at a table with my family…so that I can plan trips to the bathroom…so that I can go on living as normally as I can. 

But this goes so far beyond just ‘me’, M.E has devastated the lives of millions the world over; the trouble is that they live in a world where they are met with disbelief, resentment, hostility from medical professionals, family members, society-at-large, institutions that are supposed to protect the vulnerable. I, too, never understood such conditions, until I fell ill with it in December 2007; I never realised how severe it could become because of mismanagement and a lack of medical knowledge, until I became overwhelmingly bedbound in May 2011… a state that I am still trying to overcome every day.

I promise you, at whatever severity, M.E is an unrelenting, gruelling, and even treacherous opponent – don’t underestimate how difficult it can be to live with, at whatever severity; M.E also devastates the lives of families and carers who are left to pick up the pieces after medical mismanagement and relapses… relationships are severed, lives are put on hold, friends are lost, income-streams are broken indefinitely.

So I ask you to please read and share some of the links I will be posting in the coming few days, and perhaps we can begin to change the way M.E is understood. The following is a piece called ‘Silent Screams’ which I wrote last year for M.E Awareness Week, and perhaps it’s worth sharing this again. These are personal accounts but maybe they can provide some insight to you.

With love,

Imraan

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‘Silent Screams’ ( from April 2012)

“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.” 

(From Emily’s Appeal).

 

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 youth (who overwhelmingly seem to use social media) 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.

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.

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.”)

A Great Rant on Fibromyalgia

If you’ve fallen prey to this awful condition, I must recommend this video to lighten your spirits! It is so tragic that there is a tremendous amount of disbelief and abuse out there in the world…but this is something that made me laugh a great deal and inspired hope in my day! And it’s just really funny, too.

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