memo to myself and others re chronic illness

I've just been reminded, once again, by a friend's misunderstanding whilst communicating via Messenger, of how much one loses when living with a chronic illness - in my case moderate ME (myalgic encephalomyelitis). 

What they had failed to understand is how impossible it proves / has proved to plan any events ahead. Even a meal out locally, with my beloved, can only be cofirmed at last minute and, even so, is an extremely rare occurrence. I have lost contact with most of those I had considered "friends" prior to succumbing to this illness, almost 15 years ago, and have had to rely, to a large extent on the proverbial mountain coming to me.

Of Conversation and Being Wallopped

Another shattered day, or should that be another day of shattered tiredness; perhaps a tired shattered-ness will suffice. Drained, wrung-out, exhausted; none of these quite hit the mark, although I feel quite walloped out by all of them.

Just working out the cost of spending time arguing, discussing, with an old acquaintance! Today is the 13^th August and, the incident to which I refer occurred somewhere in the hours between 11.00 on 1^st August and 15.50 the following day.

It was something of a shock to discover how Neanderthal the political thinking / imagining of my old friend had become, since he fell under the spell of the Daily Fail. Once he had a mind but, now, I began to wonder if that was a false memory. Only when the conversation turned to matters philosophical, theological, and even metaphysical, did the verbal exchanges become rewarding.

Once upon a time my mind and spirit revelled in such conversations, with friends and acquaintances, not infrequently running through from late evening to dawn. In those days, the conversation could be accompanied by a bottle or three of vino, and a few mugs of tea to prevent dehydration. Nowadays, a mere few hours of chatter and discussion, even in the absence of alcoholic refreshment, seems to overwhelm my physical and emotional resources. Two days after our late evening chat a painful exhaustion,  from which I’m still recuperating, hit me.

For a couple of weeks before the visitor arrived, I’d been having to resort to wrist, palm, and elbow supports, attempting to alleviate the nauseating discomfort, which frequently seems to emanate from the armpit lymph nodes. At its most discomforting phase, as I curl up, clasping my upper arms tightly to my torso, foul expletives emanate from my vocal organs as if seeking a magical miracle of healing, before the flow of tears erupts. So, perhaps, extended conversation is not the sole cause of my current exhaustion.

Lost for Words

It’s one of those times when language seems to be somewhat limited, lacking in pertinent words to describe a particular mode of being. What I have been experiencing, earlier today, is an intense discomfort that not only induces nausea but, also brings me down into a tearful state. This sensation, however, feels to me totally distinct from anything that I would normally describe as pain; more like a dis-ease with the way my flesh and bones fit into their enveloping skin.

Quite out of the blue, whilst doing a bit of catching up (on e-mails, twitter feed etc.) on the laptop, my elbows suddenly began to throbbingly ache in response to simple tapping on the touch-pad, a sensation of tenderness in the axillary lymph nodes followed with only a minimal delay; the nausea induced by these events meant I had to immediately desist from any laptop activity. In response to this sensation I swiftly donned my elasticated elbow supports to help alleviate the discomfort.

As I attempted to relax / recline on the sofa, I suddenly became aware of a discomforting ache in both knees. Next step was to don my elasticated knee supports. At this stage, I would still describe what I was experiencing / undergoing as an intense discomfort rather than pain; perhaps what I would describe as pain is more the experience of a sustained sharply stabbing irritation rather than the initial chronic dull throbbing ache of discomfort and dis-ease.

There are times that the simple donning of supports eases the nauseating discomfort but, on other occasions they prove less efficacious. As the discomfort moved more towards my pain zone, time seemed appropriate to resort to pain-killers (100mg of tramadol); within half-an-hour the discomfort and impending pain began to dissipate.

I’ve got to admit that the moment when discomfort (chronic discomfort) and pain (acute pain) merge or transpose is extremely hard to define, or even recognize. Sometimes, words quite simply fail me and, the cussin’ swiftly takes over.

just so story - zambalouked

absolutely zambalouked - that's it - zambalouked; there's no other word for it, it's indescribable without its forbears, and the whole interminable history of signs and symbols encountered en route.

First we had that dance routine, it starts with the knees this time. A dull throbbing ache vibrates through shins and sets the feet in motion. Next it's the wrists that ache, a slow burning fuse that sets the heavy upper limbs in discomforted motion, and then the nausea begins.

Elbows insist the arms must stretch, release the terpsichoreal spasms that shudder down from the armpits. Turn onto belly, cross arms behind the pillow, stretch legs and hook toes over the mattress end to stop their flailing burn.

*******

Do you know that, this time, I thought I'd gotten away with it.

Nice bright weather coaxed me out of my cocoon, just a little light weeding here, tack down some mineral felt there. Can't have been more than a couple of hours exertion spread across two days.

Then there was the modest change of 27litres of water from the 180litre aquarium, 3 buckets full either way, and that's my exercise!

I wallowed in that grand illusion; this time no payback. Guess what ...

*******

A couple of days later the nocturnal dance followed by this achingly shattered, confused emptiness, a totally zambalouked experience. Absolutely zambalouked, that's all I've got to say! 

Entranced by the strangest zambalouk.

Of genuine woes and fraudulent transactions

Today provides one of those unusual mornings, at only 11.45 I feel almost awake; a rare instance indeed! Just over a week ago I intended to write a posting, more a catharsis for me than a word for others, but an intolerable lethargy weighed far too heavily. My scribbling that day went as follows :

“And wimpishness knows no bounds, the tears flow freely, the sinuses discharge an uninfected load as earth’s rotation slows right down A flood of fear and selfishness combines

A flood of fear

And selfishness

Knows no bounds –

The tears flow freely

And sinuses discharge

An uninfected stream

Of hopelessness …”

My brain seemed blocked; no words would flow until, some twenty-four hours later, the above emotion transmogrified into the following doggerel:

                                            Dog Errol

                                          It never pours

but when

there’s more

to follow.

Rain never follows

an unending drought.

If once a mouse

should catch a cat

the fox would say

I smell a rat

Whereas earlier in the year, despite all too familiar aches, pains, and wooly confusion, I managed to remain quite upbeat, by early March my reserves of emotional and physical stamina had fallen from their quite low plateau. Even the most modest exertion seemed to wipe me out. It was as if I had to make an exhausting conscious effort to persuade my legs to move in the right direction, as I ventured out into the hallway; this would occasionally be followed by a strenuous mental effort to remember why I’d headed there in the first place.

Earlier today it seemed as if the sun would make an appearance but, as I turn back towards the window, hailstones are flailing down from the heavens, their rebound, as they leave the ground, makes mockery of my prevailing inertia.

No sooner had I jotted down the previous paragraph than the sun, in full glory, burst through the residual cloud cover as grey skies turned to blue. The swiftness of this transition would be hard to believe were it not experienced first hand by one’s own senses. So, you may add, “your senses are working, even if much else of your corporeal being seems to be giving up on you. Why don’t you stop moaning?” the latter question I’ve frequently asked myself but, it’s far too easy to succumb to more negative attitudes when your feeling several degrees below an iffy par.

*********

A gum infection, and accompanying toothache, really set me back and, as is its wont, the worst flare-up occurred on a Friday night and the dentist doesn’t work at weekends. Strangely, the pain seemed to emanate from beneath a crown; intellectually this made little sense as I knew that tooth had been root-filled many moons ago. The worst of the pain then presented itself under a wisdom tooth; when I had an emergency appointment with my dentist she noted that I nearly went through the ceiling when she tapped the offending tooth. She duly prescribed a course of antibiotics to combat the infection, halfway through which the pain seemed to have magnified, and with my somewhat iffy immune system sundry familiar ME symptoms returned to bite me, affecting my balance, brain fog, aching muscles, chronic IBS and diverticular disease symptoms seemed to think it was carnival time; they rejoiced as I slid further downhill.

I was feeling so dreadful that when I realized my beloved was going to visit her brother, and would be away overnight, the floods of tears mentioned at the beginning came into play. My only utterance, through my wimpish blubbering, to ma belle was that I was afraid that I was going to die alone.

Matters weren’t helped when an early morning ‘phone call wakened me from my fitful slumbers on the morning of ma belle’s departure. The call was from a credit card company suspecting there may have been a “fraudulent use” of my credit card and, I must contact them on an 0845 premium number. I went immediately to saynoto0870.com where I found an alternative number to contact card services. Just as well that I used a free number as I was talking to (or being talked at) the bank for 40 minutes when palpitations and breathlessness took over. My beloved fortunately had not yet set off, as she had to take over the conversation from me.

The annoying oiks on the banks end of the phone line endlessly repeated the same questions re a gambling website that I’d never heard of and had I made a £500 payment to that site on that morning. Although they acted on the basis that a fraud had been committed, somehow this payment had been accepted and would appear on my next statement. They then explained that in a fortnight they would be sending me a legal letter which I would have to sign to say I had not made this payment. The attitude of the people I spoke to left much to be desired, especially when dealing with people who have a chronic debilitating health condition. I was definitely made to feel that I was a prisoner in the dock being grilled by a particularly abrasive prosecution counsel.

The card was only renewed earlier this month and has never left the four walls wherein I live, breathe and have most of my being! It had only been used a couple of times online at companies with whom I have had regular secure transaction completed via a “verified by” security check so, one can only surmise that there is somebody either at the bank or one of these companies who has filched my card details.

Sorry for such a sustained moan but, it only serves to illustrate my roller-coaster ride.

 

                                          

living moderately

Well hello again! I’m not sure whether its weeks or months since I last proffered a “proper” blog post and, I must admit that the prospect seems rather daunting. No excuses, there’ve been good times and bad times, rough days and smooth days, since my last full offering and my stamina reserves have been used on other pursuits.

Upturns are represented by my casting aside the walking stick on several occasions, managing a moderately brisk walk of several hundred yards, whilst still lamenting an inability to manage a few miles. Some people are never satisfied!

I still enjoy our garden, no matter what the season, albeit from a passive observational perspective; what would we do without the professional services of our friend Martyn? Although I sometimes pride myself on my pacing, I still find myself suffering the payback penalty when enthusiasm for a modest task leads to even a modicum of over-exertion.

The usual problem is recognizing the exertion that may be demanded to fulfil an apparently simple undemanding task. One such example was a recent successful attempt at re-potting a contorted hazel shrub. Initial preparation of the new container went smoothly but, once I’d placed the plant in situ, the task of infilling turned out to be the proverbial straw. Brain fog, an amplification of all my familiar sundry aches and pains (muscular, joints, lymph nodes, abdominal spasms etc) and an inability to control my legs as I headed back to the house – a kind of conscious restless leg syndrome! The next couple of days passed in an achingly painful, mentally hazy, sense of being; it took a little more time before a tingling sensation of being trapped in an undersized skin receded.

It’s a few weeks now since my beloved retired from her salaried employment, at the doctors surgery, so I’m really enjoying more of her company. Mind you, she’s still meaningfully occupied as a local preacher, an assistant on computers at the Acorn Centre, Fair Trade issues and involvement with the local Labour Party.

 Until recently it has been somewhat difficult to persuade her to take much needed recuperative rest. Having always pushed myself, working and playing hard, prior (and probably causally related) to succumbing to ME, I do worry that some people ill-advisedly over exert themselves rather than listening to their bodies and ensuring they always have some stamina in reserve.

                                                            ++++++++++++++++++++

Encountering ME - a selection of poems, reflecting my experience of living with moderate ME can be read online or available as a free download from Scribd.

Mal’s ME Jottings – a selection of blog posts are also available on Scribd – read online or available as a free download.

  

no more the adventurer

You’d think, by now, that I’d have learnt to pace myself, after all the theory is quite simple! All one has to remember is to keep some physical (and emotional) stamina in reserve; one has of course always to remember how much lower the energy reserve plateau is than it was pre-illness onset.

 

 Before I succumbed to this condition, (moderate ME), I would think nothing of walking to work, being on my feet most of the day, then coming home, going out to concert, gig, cinema, exhibition preview, attend house group, and later return home all on foot. Very few hours abed would serve to restore energy levels to the necessary level. Socializing always came easy, only rarely did any event attended / ambience prove at all stressful. Thankfully, I had no idea that this comfortable mode of being was going to be taken away from me, unless by the grim reaper.

 

Yesterday morning I’d reduced my bed rest time from 12 to 8 ½ hours, as we were expecting delivery and erection of our summerhouse, which had originally been promised for the 8^th July, and ours was the delivery team’s first drop/job timed for an 08.00 - 10.00 am slot.

 

I was already feeling a sense of giddy light-headedness, and general nausea inducing discomfort, before the delivery team were due to arrive. When they arrived, at around 9.00am, I went out to make sure that they were going to position the doorway, and windows in the required direction. They wondered whether I wanted it positioning in such a way that one array of windows would be running parallel to, and approx 2’6” away from the back of our prefabricated garden shed. I quickly put that right but I was also informed that they would need to chop a significant branch from a tree behind the base that we had prepared, and which had been inspected and approved by someone from the supplying merchant who made no mention of this requirement. [Obviously the base was inspected for suitability without any attention being paid to any other environmental factors which may impede the erection of the aforementioned building!]

 

By this time, the frustration of circumstance seemed to exaggerate both the nausea and the crushing disorienting sense of light-headedness. I reluctantly gave them the go-ahead to dismember parts of the tree before ‘phoning my beloved at her place of work; having informed my OH of how crap I was feeling and warned her that I would soon be likely to turn the air blue, she said she’d pop back to deal with any problems that may arise. No sooner had I put the ‘phone down, and started a necessary/essential period of rest on the sofa, than one of the workmen tapped on the door. They had noticed both mould and a split in the back section of tanalized timber, rending it unfit for purpose. At this juncture I let loose a string of invective concerning the company that they were working for and, said that as far as I was concerned they could take it all away, refund our deposit and give us a couple of hundred quid compensation for all the inconvenience we’d been put through. I also suggested, somewhat more measuredly, that they may as well wait for my OH to arrive and see what she thought.

 

Having taken away all the components of the summerhouse at ma belle’s request, they said that they would get the supplier to ‘phone her at work to discuss compensation and re-arrange delivery and erection of a building ‘fit for purpose’!

 

It was only after the kerfuffle had passed that I fully realized just how shattered I was. The (supposedly good) weather recently, above average temperatures, sunshine and cloying humidity, always play havoc with an already erratic body thermostat. Not only had I been deprived of necessary bed rest but, I was also receiving a degree of ‘payback’ for some minimal over-exertion in terms of cooking, domestic chores, entertaining and dining out with our special friends, Peter & Pamela, who had traversed the Pennines in order to see us at the weekend.

 

As I suggested earlier, what once I would have taken in my stride would now appear to be the most foolhardy kind of adventuring! 

 

 

*************

 

I commented on Twitter yesterday:

 

 this time the outpouring
of expletive laden invective
fails to alleviate
the nausea inducing malaise
- otherwise I'm OK!  

from the frontline

Sometimes it’s difficult, if not impossible, to describe the exhausting ache of self-questioning, veering towards a sense of guilt for being ill and hence, a burden or embarrassment to those who you really care about. I must be honest that even this preludium to a post doesn’t really express the underlying frustration that prompts it; at root, the knowledge that even the best of days carries a stamina rating of perhaps 20 - 30% of my pre-illness norm.

 

What I was really wanting to say is that the relative paucity of postings, arising from a desire to communicate (with and for whom I know not), bears little distinct correlation to my present levels of pain, discomfort, joy or plain normality. There are times when I wish to write but simply lack the necessary energy to place the written words in any meaningful order; at other times I am positively glowing with the enjoyment of spending time with my beloved, excited by the variety of avian visitors to our sundry garden feeding stations, or even the refreshing joy of a brief brisk venture out into the bracing air, can fill me with such glorious images which, were I to write them down, would sound like an overblown description of some utopian paradise.

 

An evening cocktail of tramadol and amitriptylene tends to curb the night pains, even though sleep is invariably of a restlessly intermittent unrefreshing variety. In the morning I continue to take a low dose of sertraline which seems to control the reactive depression which this disease can so frequently carry in it’s wake. Currently I am also taking mebeverine (3 x daily) and lansoprazole (2 x daily) in an attempt to ease my IBS and gastro-oesophageal reflux problems.

 

I am extremely fortunate to experience a fair number of days where pains and muscular spasms are quite simply a faint background hum, futilely struggling against my enjoyment of the day. Unfortunately, at night, as my body strives for rest the fitful pattern of sleep leaves one more vulnerable to these pernicious nauseating pains and spasms.

 

This afternoon, my far too familiar nausea-inducing nagging pains, emanating from the armpit and apparently gnawing through bone and muscle down through biceps to wrist, vengefully returned. A combination of painkillers and splint type wrist supports eventually alleviated this as I rested on the sofa. And so I come to post this, in the hope that at least some of my words convey their intended meaning.

 

Communique ends.

Aching Days and Restless Nights

Do you ever get the feeling that the soles of your shoes are sprung lead platforms; the bass notes, from each drudge-like clomping step, resonating through the apparently hollow tubes that connect each ankle to the knee bone. Forgot to add the feeling that the tube walls themselves are composed of compressed felt, specially treated to retain an aching bruised sensation. Each several yards travelled feels like a half marathon. To be quite honest though, those are not my best days, and as for the worst days even those several yards would be well nigh impossible!

At other times there are the joyous shattered sleep deprived nights, frequently starting with a disconcerting and discomforting acute ache in the upper arm, armpit and elbow, or fitful muscular spasms in the lower limbs, a generalized sense of disorientation swiftly takes over. A complete nauseating distraction from the sleep intention seems itself incapable of distraction; sore throat, nausea, tenderness of lymph nodes, and a refreshing of one’s IBS symptoms are just about par for these wee small hours disturbances.

It always seems quite ridiculous that the more one requires refreshing sleep, the more difficult it is to attain. Neither striving nor yielding seems to result in the anticipated balm!

Ailments aside, I feel truly blessed in the warmth of my relationship with Helen, my beloved OH, and constantly wallow in (and yearn for) her presence. Although I can no longer cope with cinema, theatre, jazz club or concert going, I still have, and revel in, the opportunity via sundry technologies to enjoy music, film and concerts. This enjoyment is always enhanced when the experience is shared with ma belle!

At times our garden is so full of avian activity that it is a privilege quite simply to be sat in my armchair observing all their comings and goings. Come to think of it, I am truly blessed and surprisingly content much of the time!

tidings of discomfort and joy

The gaps between postings seem to be increasing; don’t know why I tell you that, presumably you’d already noticed. Sundry muscular aches and pains almost got the better of me during recent weeks, not so much the intensity of pain (barely halfway up the scale) but rather a disconcerting all pervasive sense of dis-ease. At present it feels as if a generalized discomfort proves more disabling than spasmodic acutely intense pain.

The question constantly arises whether codeine, tramadol or any general painkiller can tackle these dull persistently nagging aches. On occasion simply putting on wrist, elbow and shoulder supports seems to alleviate all but a background purring nausea, at others only the combination of pills and  strappings seem to do the trick.

It’s strange that some nights, following on from a more comfortable day, the discomfort only begins its nagging and gnawing routine when I attempt to settle down to sleep; brief interludes of dream laden sleep interrupt my sadly familiar restlessness. At times I could swear that the amitriptyline is working as a stimulant rather than benefitting me with its supposed gently sedative properties.

For the past several nights I’ve pre-emptively dosed myself with tramadol before retiring au lit but, I’ll never know whether it’s the medications efficacy that grants me a more comfortable (albeit still unrefreshing) night’s rest, or have these nights just happened to be ones that were destined to be more comfortable anyway.

At its worst the discomfort is such that I become nauseatingly ill at ease inside my own skin ….

                                                                                    ***

I’m now beginning to see a reason for not posting; all the preceding spilt out as if I’m having a miserable life whereas in fact I continue to feel rather blessed.

My love for ma belle grows ever deeper and, what’s more, that love is reciprocated. The assurance that one is loved somehow overwhelms life’s more negative aspects, simultaneously building one’s reserves of emotional stamina in readiness for the ongoing struggle for justice and compassion for all.

Having always been of a somewhat gregarious disposition I still, not infrequently, find myself mourning the loss of the ability to socialize (other than on the most modestly minimal scale) but still feel fortunate that I can enjoy all kinds of music and drama via television, radio, and sundry recorded formats. It’s strange the way that sudden unexpected sounds can serve to shatter my nerves, almost crushing the breath out of me, whilst dramatic transitions in a musical score never (or perhaps very rarely) seem to play such a disruptive role.

The garden too is a source of constant delight and refreshment, even when it’s getting a bit out of hand, and the avian activity (viewed from the comfort of a supportive high-backed armchair) is a constant source of pleasure.

Come to think of it, perhaps the reason I’m not posting so regularly is that I’m far too busy appreciating life!