ME

ME
Showing posts with label moderateME. Show all posts
Showing posts with label moderateME. Show all posts

Saturday, December 29, 2018

and so it goes ...


For the past few weeks my health, and emotions, have been on something of a roller-coaster ride; it’s difficult enough living with chronic-illness / chronic pain but, when more mundane bugs (doing the rounds) place an additional burden on one’s already low stamina reserves, an unwelcome veneer of despair enters the frame. Fortunately, these more mundane viral attacks tend to dissipate after a couple of weeks, but never before time.
Exhaustion still seems to hold control of the reigns, even when one is experiencing an apparently more alert and energized spell. As agonizing pain & exhaustion takes control so one’s temper frays and, against one’s better judgement, expletives tend to fill the air.
This evening the pain in upper limbs, joints and lymph nodes, has defied the efficacy of 100mg of tramadol. Malcolm is not a happy bunny but, still manages to put on a brave smiling face in an attempt to deceive himself. More happily, I am still fortunate enough to be capable of deriving tremendous enjoyment from a catholicity of music, DVDs, poetry and paintings.

Sunday, October 21, 2018

random onset - chronic & acute


This happens far too regularly and yet, it still catches me unawares, a total surprise. This afternoon, just relaxing with my faithful pooch laying beside me on the sofa,, when a sudden griping, annoyingly discomforting, ache in the armpits, brings back the feelings of nausea. Shortly after this griping ache a throbbing pain takes over my elbows, whilst wrists ache in a manner similar to carpal tunnel syndrome.
Sometimes the application of elbow and/or wrist supports serve to alleviate the nausea sensation and, the throbbing aches gradually subside; on other occasions even opioid painkillers fail to dispel the more severe discomforting pain. Quite frequently the armpit pain occurs when I’ve been holding a tabloid size newspaper or a tablet PC for more than a few minutes; when this occurs I have to discard my cardigan as the armpit seems overly constricted but application of a shoulder support, which settles more tightly in the armpits, can sometimes alleviate the discomforting pain.
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The first two paragraphs were written on two separate days, the usual problems, as described above, prevented me from spending sufficient time on the laptop to rediscover the document so far. I’m managing to keep posting to my twitter feed and almost keeping up with facebook posts, primarily via tablet, but concentration tends to dissipate as soon as the aches and pains begin.
Today the armpit pain came on more acutely, even though I wasn’t holding either newspaper or tablet. Donning of a shoulder support which fitted quite tightly in the armpit did distract me from the initial acute pain but, within a minute it was necessary to don wrist and palm supports to alleviate an intense, tear inducing, discomforting pain in my wrists. It was necessary, today, to resort to a couple of 50mg Tramadol.
I realize this may be much ado about nothing but, it may help to explain the paucity of posts from yours truly.

Thursday, May 10, 2018

ACHES and GAINS


Just when you think you’ve recovered from the roller-coaster ride, a sudden smack of reality makes you realize that you’ve stepped onto the ferris wheel and this time it’s supercharged. Stomach and oesophagus have never felt so close, a moderate underlying nausea takes on a more prominent role. The head feels giddy as if too much time has been spent on the ‘waltzer’, and knees, ankles and elbows throb as if stray balls from the coconut shy have found fresh targets.

You’ve maybe guessed it, I’m talking payback; a reasonable period of (partial) remission had almost persuaded me that life had been restored to normality. As I’m now into the fifteenth year since my collapse, succumbing to ME (myalgic encephalomyelitis), one would think I’d know better than to miscalculate my reserves of stamina. I’m not talking of any undue exertion, just twenty minutes of mowing the lawn with an electric powered mower seems to have knocked me back. Mind you, this additional exertion came at a time when I’m just coming to the end of a course of antibiotics and antimicrobials.

These additional medications had been prescribed as a result of a visit to A&E at the district hospital last Thursday evening, following a flare-up of diverticulitis (and probably gall bladder as well). There have been many occasions recently when I’ve felt as if my moderate ME had turned to a milder form but then, brainfog, alongside excruciating discomfort in upper and lower limbs, and nagging pains variably dispersed around the torso, randomly exert their authority.

Putting those ailments aside, I am fortunate that I am still able to enjoy listening to a wide range of music (via CD, radio and vinyl sources) and am generally able to accompany Piper (our beagle – podenco  rescue dog) and my beloved OH Helen on short evening walks. A few years ago there were occasions when it seemed / felt like an effort too far]just to walk the few yards to the corner of our road. I really miss it when I’m not able to manage these short walks but the love and attention, received and given, by Piper compensates more than a little, and I’m still amazed at the therapeutic value of this charismatic canine.

An additional source of joy is provided by not infrequent visits from our grandson Alexander, now in his ninth month of bringing and receiving an abundance of smiles to the house. Piper is intrigued by Alexander, even though he’s never sure of how to take the infant’s reciprocal interest; the boy stretches out to feel / stroke Piper but has already managed to grab his tail on one occasion as well as being drawn to his ears (always a sensitive part of the pooch’s anatomy).

Tuesday, November 15, 2016

UPROOTED

A general mode of tetchiness rapidly transmogrified into an explosive compound of anger, frustration and despair. All of a sudden, slow oozing droplets of distress became a raging torrent of tears. The trigger for this outburst was the conclusion of Zadie Smith’s “NW”, as dramatised for lasts nights transmission on BBC2; the drama itself had plenty of pathos, quite brilliantly portrayed, but much of this, though moving, still left me as an involved observer of the characters lives but, far from an emotional wreck.

What really led to my emotional eruption was the closing scene where Natalie and Leah, regardless of their present more prosperous middle class status and location, almost yearn for the life and companions of their far from glamorous early lives together with their friends from that era. That early life was in Kilburn, an area with which I was quite familiar when I lived in NW6 in the early to mid-1960s. Even so, it wasn’t even the specific location that triggered my emotional collapse; their awareness of having roots in a community where friends and acquaintances retained significance.

It was almost as if a curtain had been raised on my social and emotional stage, a platform on which I stood alone and rootless. Having been born in Canterbury, where doodlebugs celebrated my nativity, I have absolutely no links or memories of this place. My parents moved us on a couple a couple of times in my early preschool childhood in Sussex and Hampshire, there was little chance of having or retaining any significant friendships. My clearest memory of our time in Bournemouth is playing with a toy red lorry whilst shouting out “mackerel, fresh mackerel” and misguidedly crunching an acorn or two. I also recall being in isolation hospital, together with my big brother, and seeing my parents on the other side of a glass screen, and also simultaneously remembering the excitement at having my very own tin of dentifrice.

From there, we moved to the industrial north, to parts of Lancashire, West and North Ridings of Yorkshire, and county Durham all before leaving school at the age of sixteen. Shortly after leaving school I travelled alone to the Sussex coast for my first temporary employment, whilst in the meantime my parents had moved to rural North Devon where I subsequently joined them and found further employment until I was able to start nurse training in Exeter. Since the age of 14, whilst a patient in hospital, I’d known that nursing was my ideal job but, sadly due to an inability to adapt to nightshifts it didn’t work out so, a brief return to N Devon preceded my move to London NW6 to work in Ministry of Labour HQ. Once again, whilst residing in the big smoke, my parents had moved on, first to Staffordshire then, three years later, to a small market town in rural Lincolnshire.

Having burnt the candle at both ends, indulging an appetite for various intoxicants and exotic substances, a mental health breakdown ensued and, I visited my parents for a few weeks rest. This rest swiftly took on another form as a cocktail of beer, spirits and sodium amytal, led to me putting my fist through a few windows before being picked up by the local constabulary, and a consequent period of sectioned containment in a psychiatric hospital on the edge of Lincoln. Ten months later I emerged back into the real world, returned to London, only to discover that I could no longer cope in that environment and, a return to Lincolnshire was in order.

From Lincolnshire we moved to a village in West Yorkshire from where I decided to apply for university to study Philosophy and Theology as a ‘mature’ student. Having received four acceptances, purely on the basis of interviews, I decided on University of Hull and one year after graduation pursued post-graduate studies in Sheffield.

I have lived in my present part of North Yorkshire since the late 1970’s but, it took considerable time before I took on any sense of belonging, eventually attaining a wide circle of friends and acquaintances through both my arts related and, subsequent, church related employment. My social life expanded greatly from the eighties of the twentieth century through to the early noughties of this century. Meeting ma belle Helen in  the last year of the old century, and marrying her early in the first year of the present century, has been by far the most wonderful event in my life. My love for her grows with every passing day but, I still manage to upset her with an angry tetchiness that simmers just below the surface of me.

Since succumbing to moderate ME (myalgic encephalomyelitis), late 2003, all contact with (apparent) local friends, indeed the friends themselves, have evaporated from my life. From being quite gregarious, I was transformed into a semi-housebound sad-happy git; no longer able to venture out to (or cope with) gigs, theatre, jazz venues or church services, even visiting the town centre (in the company of ma belle chauffeuse) can turn into a most daunting venture.

Where are my roots? I don’t seem to have them!

The church, where I had latterly worked as caretaker/ steward, turned its back on me because my illness, which lead me to an abrupt termination of employment, was interpreted by both vicar and curate felt as my deliberate letting them down. Indeed, when early in the illness I managed to attend a service, John the curate suggested to me that I was brazen/ had a nerve to show my face there. The only lay  member of the church, at which I had been a housegroup leader, a group leader on the Alpha course etc., came to visit me was to invite me to be another bum on a seat for Back to Church Sunday. Localised secular friends have been equally negligent, since the illness took hold of my life.


Isolation, loneliness, is the baggage that seems to accompany the onset of this dreadful illness – Myalgic Encephalomyelitis.

Sunday, January 17, 2016

GOOD TIMES - BAD TIMES - Strangely NORMAL TIMES

Wrists in strong supports, left hand clasped tightly in armpit by right upper arm, right hand grasping left shoulder, upper left arm clasped tightly to side, and I want to scream. The nagging aching pain and discomfort little eased by 100mg of tramadol swallowed a couple of hours ago.

Everything felt fine when I decided to move from reclining to upright posture, but then just switching on laptop and tapping a few keys was sufficient to bring back the heavily aching nausea-inducing pain in the upper arms; the sensation not too dissimilar to a state of total exhaustion when one is prohibited from rest or sleep.

When lying down a throbbing ache envelops my knees; bending knees to make a tent under my shrouding fleece temporarily alleviates the gnawing knee pain. Next it’s the toes that are the problem, a sudden burning sensation in lower digits all too swiftly feels as if my skin is being grated by the restraining pressure of what are usually quite normal socks. This latter item swiftly becomes an instrument of torture and, their removal does little to relieve the sting.

It’s beginning to feel like some sort of punishment as atonement for having two reasonably good days. On Friday I finally managed to visit the opticians, first time I’ve managed that since 2003, previous attempts having been thwarted by sensory overload and/or panic attacks. I t really felt like quite an achievement to have undergone a range of tests by both optometrist and optician. The optometrist was genuinely interested to learn a little about ME (and my denouncing of the wastebin CFS diagnoses) and really put me at ease.

Fired up by this amazing achievement, next day I decided to attend to one of my problem PC’s that I hadn’t touched since September. No amount of online research (and subsequent application) resolved the issues that had thwarted my efforts last year. There was nothing for it other than fresh installation of Win 7 and countless updates to be applied.

By mid to late evening I was quite shatteredly exhausted but, having go to bed sleep proved extremely elusive. Illusory sleep turned out to be the lesser nocturnal oppression. Wrists, elbows, lymph nodes, and lower digits screamed out for attention. Tubular bandages over elbows and much of the arms, elasticated metal spined wrist supports offered little in the way of pain and discomfort relief and, the burning flayed skin of the toes screamed out in accompaniment to my expletive laden vocalising. An application of moisturiser to feet and toes proffered temporary alleviation but, I’m not sure whether it was the emollient or the massaging effect of its application that provided this relief. This procedure was repeated several times during the course of the next couple of hours.


 By 11.19 this morning I reluctantly emerged from the duvet lair only marginally less exhausted than the previous late evening. What of today? You may well ask! The first paragraph describes some of my afternoon.

Thursday, May 14, 2015

From Storm to Calm

That all too familiar nausea producing tenderness of lymph nodes, particularly axillary & cervical, has returned; the accompanying discomfort frequently seems to precede a more acutely throbbing pain in the upper arm.

Wrist splints and supports, tubular bandages, elbow supports and tramadol are very much in demand at the moment. Omeprazole, mebeverine, and mometasone fuorate seem currently (but hopefully only temporarily) rather less effective, in tackling reflux, IBS, diverticular problems, and rhinitis.

Quite frequently, a variant (as opposed to my more regular nocturnal tradition) of restless leg syndrome seems to take control in the hours out of bed. As I arise from a seated posture, it feels as if I have to make a conscious effort to issue the necessary commands to my lower limbs, to ensure they travel in the intended direction, rather than making a random displacement / detour,  and assuring them that they’re quite capable of supporting my torso.as I move across the room.

Even quite minimal exertion seems to take a disproportionate toll on my shattered constitution. I don’t think I’ve become more lax in ‘pacing’, but rather that my stamina reserves have diminished somewhat, over the years, from their already low plateau.

Apart from the foregoing minutiae of my current state of unhealth, I still feel rather blessed that I have a roof over my head, food in the larder, and other home comforts, but, the real icing on the cake is the love that I share with ma belle Helen. Love is such an amazing thing, a symbol of transcendence in a world dominated by the forces of greed.


To life and love, I raise my glass.

Sunday, January 25, 2015

what's in a day



It seems, and logically must be, impossible to know what’s going to happen one day to the next. Whenever we arrange any kind of appointment it’s usually made in good faith but, circumstances can so often thwart the noblest intention. I’ve been feeling quite vulnerable, health-wise, with a recurrence of sudden onset sundry joint, muscle and lymph node pain.

It’s rather hard to describe how (what starts as) an acute breach of one’s pain threshold transforms itself into a prolonged groan and nausea inducing pulsating bruised sensation.  Occasionally the application of wrist, knee, elbow and shoulder supports provides temporary relief but at other times they have to be accompanied by taking a couple of tramadol. For a few days in the past week, with the aid of a little preventative pain-killer consumption, I seemed relatively free of the above aches and  discomfort; even my IBS symptoms were in temporary abeyance.

That should have seemed too good to last but, I so enjoyed the welcome break that, I was rather shocked when the above symptoms alongside others returned with a vengeance. A chest crushing response to sudden unexpected sounds, IBS, post-nasal drip, sore throat, loss of appetite and sudden pallor overwhelmed me yesterday, and I became quite frightened. My body imposed a regime of rest on me; I kept dozing off intermittently throughout the day even though I’d had my normal twelve plus hours of bed-rest, with intermittent but not necessarily refreshing sleep, as prelude to this ultra-discomforted day.

At present it seems as if my sundry prescribed medications are failing in their duty, reflux, post-nasal drip, IBS are all nagging me into acute awareness of their presence. I still am able to count my blessings, welcoming each new day to bask in the love of ma belle amoureuse, having a roof over my head, water on tap, essential heating,  and food in the larder. My heart goes out to all those less fortunate than myself.

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This post also appears on Mal's Murmurings