a modicum of exercise

Although I have never considered ME as primarily a ‘fatigue’ condition, pain, cognitive difficulties, postural hypotension, sensitivities to sound and light, and post-exertional-malaise, being more distinct identifiers, the past several days have found me in a quite sustained  state of shattered exhaustion. Intermittent, unrefreshing, nocturnal episodes of sleep, do little to relieve fatigue, even as a component of quite prolonged periods of (supposed) rest.

This afternoon, although still somewhat achingly tired, I took Piper for a walk, accompanied by ma belle OH, and, in spite of having to shorten the circuit on which we roamed, I felt (emotionally) better for the exercise! Admittedly, a couple more painkillers were necessary to ease the aftermath experience.

All in all, the presence of Piper as a family member has proved wonderfully therapeutic, and the warmth of his adoring gaze is more than sufficient to melt the heart of this hardened cynic, regardless of how under par, physically and/or emotionally, I may be feeling, as the blessed recipient.

Much as our beloved pet enjoys both bounding leaps, and slow, nose led, meanders around the garden, he has developed an undue readiness to dig holes in the grassy area, frequently followed by an attempt to sneak back into the lounge before we have a chance to check the cleanliness of his fore-paws.

As recompense for the brevity of this posting, I’m adding a few recent snapshots of the garden (and Piper in it’s environs)

HOUDINI HOUND - The PIPER Chronicles

HOUDINI HOUND brings on payback but provides much therapeutic HEALING – the PIPER chronicles

Wednesday night was a time of moderate payback for the additional (voluntary) exertion / exercise I’ve been taking since the adorable Piper came into my life. Generally though, the dog is proving almost miraculously therapeutic, enabling in me a calm which I’ve not experienced in more years than I care to remember, as well as taking longer walks than I’d been able to manage in the preceding 13 years.

The form the payback took was not at all conducive to sleep, not even of the far too prevalent non-refreshing variety. A simple flick of the bedsheet across the top of my toes, or even an individual digit, caused an unwitting flailing of lower limbs and a hard to suppress need to scream out a string of expletives. Big toes were overwhelmed with a throbbing ache, whilst the full complement of subservient digits tingled with what felt like a potent electrical charge.  During Thursday I experienced a not insignificant degree of confusion and reduced power of concentration.

To be perfectly honest, I’m quite relieved that the payback has remained relatively mild! Our little Piper seems quite sensitive towards my de-energized state of being, leaning in to me rather than demanding a deeper rough & tumble commitment.

I’m constantly amazed and charmed by Piper’s character and personality, especially the winning way in which he commands one’s attention and affection. The sudden burst of energy which emanates from an apparently dormant canine must cause terror in any feline character that dare trespass on his territory, his home patch. The vigorous way he wags his tail, when greeting his people, is a sight to behold – more like a full body shake. I’m pretty certain that a simple greeting, from Piper, expends far more energy than any (so called) long-life / heavy duty battery could ever produce!

His late night bounds into the garden will occasionally produce a basso profundo woof that belies the originators size! Sometimes it may be a feline intruder, which swiftly flees from his territory, at other times he’s somewhat bemused by the little sphere of spikes which appears as he approaches a strolling hedgehog. The boy seems to have an inbuilt hedgehog sensor and, as a result we’re discovering that our long term efforts at developing our garden a wildlife friendly environment is proving successful. On one occasion I observed a couple of juvenile hedgehogs, snuffling along, at one edge of the longer grass area whilst Piper found another source of interest at the opposite side of the same area. Quite remarkably he responded to my wilfully distracting call, made to lead him away from the juvenile ‘hogs path, as he came and trotted by my side, tail held aloft, back into the house.

After he’d found it possible to utilise a garden bench as a springboard, to surmount a quite high fence into our neighbours garden, an immediate re-siting of the planter laden bench was essential. The amazing thing is that he gave us a demonstration of how easily he’d managed this astounding feat shortly after returning home from the scene of his accomplishment.

The day following the great escape, Piper demonstrated, to yours truly, that with a clearer run-up to that section of fence he was already close to making another leap to freedom. Immediate DIY work was called for, as an old Mothercare fireguard was quickly dis-assembled and it’s component parts utilized to add additional height to that particular section of the fence. Our bundle of boundless energy has certainly brought much added colour and joy into our lives.

       

                             Piper tries out his new bed

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.

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.

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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.

  

Progress or Regress

 Over the past few weeks I’ve managed a bit of gentle socializing, a couple of meals out at Al Bivio, lunch at Café Culture, and even a wonderful buffet lunch at Wesley followed by a stimulating talk, necessitating conversation with ones neighbours at table, from the President of Conference.

 

Essential as these socializing occasions are for one’s morale, I once again, misjudged the amount of activity I could manage without payback. I’m afraid my payback threshold is much lower than I’d hoped. Payback rewards usage of reserves of both emotional and physical stamina.

 

Shovelling compost from bin to wheelbarrow, not much more than a dozen shovel loads at that, and hence to a small section of garden border proved several shovel loads too much. Not only the refreshed aches and pains in the lumbar region but, a full torso and limbs spread of irksome twinges, peripatetic clog dancers stomped their repetitive way across and along muscles of upper and lower limbs whilst a vague dull headache gave way to waves of giddiness, as if to emphasise my reward for a job well done.

 

On another occasion, just changing twenty litres of water from my main aquarium was the camel’s backbreaking straw. At least the far too regularly recurring shooting pains in the upper arm (armpit to elbow and vice versa) have withdrawn their attention, in response to a more regularized tramadol habit!

Pacing can be a Pain

 

 Since yesterday lunch-time the discomfort has become quite extreme, in fact I don’t know why I try to soften the sentiment by substituting the word discomfort for what has ranged from excruciating pain through agonizing, nausea inducing, aches.  For several days back pains have flared up, presumably related to the herniated disc, to the extent that it has proved virtually impossible to find a comfortable position seated, reclining, or attempting to shuffle about, for considerable periods of time.

 

For a couple of days my lower limbs have had that achingly rubbery feel that I always used to associate with a bad bout of flu. Cervical and axillary lymph nodes, in neck and armpits, have once again taken on a most disconcerting tenderness, as if striving to draw my attention away from those aches that seem to flit between elbows and wrists. Gosh, as I write this down, it’s just dawning on me what bodily excitements I bear witness to.

 

Chronic abdominal spasms, and erratic spasms of irritation in the upper digestive tract, make almost perfect companions to the not infrequent chest pains. It’s almost as if some great controller has decided that no part of my torso or limbs should feel lonesome; I must admit that my body’s erratic thermostat, with the dance between overheated and over-chilled clamminess, is beginning to feel absolutely normal.

 

A couple of weekends ago, I was so proud of my achievement in attending two events

of moderate socializing on consecutive days, but within thirty–six hours payback had well and truly kicked in. On the Monday, after the social weekend, it came as something of a surprise to hear my GP utter those unexpected words, “don’t push yourself”. When it comes to an illness like ME, there couldn’t be any more sensible words of warning. Trouble is, on those rare occasions, when one feels able to manage a modest amount of exertion, it’s not always obvious where the boundaries lie.

 

Pacing is so vital but, at times, one seems to be set on an almost interminable learning curve.  

Of Celebration and Payback

And just when you think it’s all going well, the old devil returns.

 During the past few weeks I’d been enjoying copious doses of Advent and Christmas music, predominantly of the sacred variety, as I looked forward to our quiet Christmas celebrations (just ma belle Helen, Beth and myself). To be perfectly honest, I was quite surprised by how well I’d managed Christmas decorations, food preparation, and sundry minor pressures such festivities may place upon one. Admittedly, the run up to Christmas week wasn’t without an occasional venture into the realm of shatteredness, with spasmodic eruptions of acute pain.

As lunch-time on Boxing Day approached, my chronically throbbing aching wrists allied themselves with intense convulsive pains in both biceps and shoulders. It felt as if my torso was being crushed whilst, simultaneously, being stretched on a rack. The effort of holding the DVD recorder’s remote control, in readiness for starting off a recording, seemed to set every nerve-ending on edge; a kind of pulsating bruise surged through my forearms and shoulders which, in turn, contributed to an all pervasive feeling of nausea.

For the first time in ages, the degree and intensity of pain and discomfort produced a convulsive sobbing response.

I love and adore my family, every moment spent with ma belle amoureuse affirms the privilege of love, and I always wish to affirm all the most positive values and emotions that the season represents. The joy of the season is somewhat marred by the realization / recognition that even my somewhat low-key exertion, as we prepare and celebrate, seems to demand a degree of excruciating payback in return.

surrounded by lights - kept in the dark

It's truly amazing how much, or how little seeming like so much, has happened in the past week. After the gardening exertions of the previous week, everything seemed to be going so well, not even a hint of post-exertional kick back. Sunday morning, woke up and robotically began to apply dermatological cream to my lower limbs when a snapping twinge locked my back mid-rub. Yep, I'm always aware that my back's rather vulnerable, herniated disc and all, but it always takes me by excruciating surprise when it un-elastically responds to the meagre stretches that I've imposed on it.

I swiftly sought the assistance of the old faithful walking stick, for additional support, as I headed downstairs. Extra doses of tramadol were required for the next few days, an essential supplement to the efficacious application of ibuprofen gel. Care had to be taken not to remain seated, for too long, in any particular position, not even on a supportive high back chair, in order to avoid a painful lock down.

Wednesday evening things took a slightly more dramatic turn, around 9.20pm, having spent the evening listening to the radio and catching up with the latter stages of that day's epic Wimbledon set, I was feeling quite shattered. Decided to have a cup of Decaff just before going to bed, took a sip and suddenly felt sick. Simultaneously it felt like a vice was closing in on my chest, right from top of ribcage down to the floaters. A sharp bruised sensation made it difficult to catch my breath and,of course, the more frightening the experience became the more difficult it was to get my breath. I turned simultaneously clammy and totally drained of colour. The paramedics took ecg's and simple prick test to check my blood sugar level; ecg's seemed fine but they could sense my general discomfort and thought I should be checked out at the hospital.

Arrived at A&E just before 10.00pm, had my blood pressure taken a few times and further ecg's. The duty doctor consulted further and decided that I should be admitted for observation. Eventually a bed was found in the acute ward and I was transferred there just after 2.00am, and they  immediately strapped me up to a monitor and told me to get some rest; now that was a tall order, within five minutes blood pressure and temperature were being taken again. By 3.00am the house doctor, from cardiology, came to examine me and told me that I would have further blood samples taken at 9.00am and, if the test was OK (meaning negative) I could go home. Shortly after this visit I was asked whether I'd mind changing to a different bed, an offer I greeted with enthusiasm as the one I was in was most uncomfortable. Around 6.30am, had a visit from the cardio consultant (along with one or two acolytes) and he informed me that he would want a further ecg taken after the blood sample and muttered something about a treadmill test. The noise, lights, and being kept in the dark about what exactly was going on were certainly not at all conducive to restfulness.

Blood samples were taken just after 9.00am and, a further ecg done at around 10.15am, the rest of the time was spent hanging around not knowing exactly what was going on. I'd got out of bed to have a little breakfast but, felt unable to note everything about the environment, or my fellow inmates, my vision being minorly impaired as I didn't have my spectacles with me. My sandal clad feet, and ankles, were getting extremely cold and I had no socks with me to warm them up at all. Come lunchtime, the food was absolutely disgusting - I'd settled for the salmon & dill potato bake in which the miniscule flakes of salmon looked like the scatterings of an infants overfull mouth bonded together with what looked like and had slightly less flavour than wallpaper paste.

Visitors had been arriving but, no sign of ma belle, I thought I'd be heading home at any moment. All this anticipation of imminent reprieve became increasingly frustrating as it failed to materialize. When ma belle arrived, at 3.30pm, she was already aware that my reprieve wouldn't be until the afternoon as she had contacted the ward (twice) earlier in the day, although I hadn't been informed of this. In fact, I only discovered that the blood test was negative after pursuing my own line of enquiry; strange how the staff had plenty of time to chat to each other but no time to communicate necessary information to the patient. Once it was known that the blood test was negative they were able to release me from the monitor leads.

Suddenly. whilst ma belle was visiting, they informed me that I was being transferred to another ward which came as something of a shock, as I was still anticipating an imminent leap into freedom. By this time I was getting ultra-tetchy, bothered by the lights, noises (on and off stage), and the general sense of being left in the dark; to placate me an annoying light was switched off and I enquired about discharging myself from the hospital. The staff on this ward were really helpful and chased up the coronary unit to speed up my treadmill test; rather than waiting for a porter to take me down (five minutes later) I was accompanied by one of the staff from the ward. I'd determined to exert myself to the nth degree on this test, although well aware there would be some slightly delayed post-exertional consequences, as I would risk anything to gain my freedom from this internment!

By 5.30pm, Thursday, I was on my way home, leaving it to the hospital to forward my discharge papers to my GP rather than incur any further stir craziness by waiting for same to be prepared. The post-exertional effects had really begun to hit home by Friday evening, followed by a very restless night with sharp aching pains being felt in chest, shoulder and leg muscles, along with my old familiar foe of intense discomfort in the armpits. The general feeling is one of a rather disconcerting fragility, a generalized discomfort; this post-exertional-malaise, unwelcome as it may be, is easier to deal with in the free world than it would be within those formidable clinical walls.

lack of progress report

Frightening how the shatteredness persists, it's rather like I've reverted to a stage I thought I'd overcome. Room-spinning, legs collapsing, griping sense of nausea and feeling as if my bones are bruised from the inside. Hope it's just a passing trend!

All I can say is, thank God for the garden; just spent a pleasant hour alternatingly sitting on bench at back of house, seats beside the pond and the arbour seat, shuffles between them ably supported by a stout walking stick!