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).

REFRESHED or NOT

To sleep, perchance to dream; no that’s not it, I dream that I may once again experience a sense of refreshment from my sleep. I have, quite simply, lost track of how many months, or even years, have passed since I last remember having felt really refreshed after a night’s sleep. The one thing that’s for certain is that I now require at least eleven hours of bed rest per night just to function quite modestly.

What has brought this state of affairs to a head is the (apparent) payback I’ve experienced the past couple of days, a result of having an early appointment at the local hospital on Monday morning. By early, I’m talking a 9.20 appointment which incurred my curtailing my bed-rest by just over two hours; that experience may, perhaps, demonstrate that I do in fact receive a certain amount of refreshment from my normal extended bed rest, hence the payback yesterday and today.

Yesterday was the first time, for a while, that I was totally unable to tackle the short evening walk with Piper; a sudden onset giddiness alongside unsupportive (de-boned sensation) lower limbs. Today, I started the evening walk but was suddenly overwhelmed by a sense of breathlessness / gasping for breath accompanied by a not unfamiliar discomfort in the upper abdomen, alongside a bruised tenderness in the armpits (axillary lymph nodes).

Apart from the sleep deprivation (early appointment), the hospital visit went well; I saw consultant, went for X-Ray, saw consultant again and, in spite of having heard an apology for delay in the clinic, was back on the road home, with ma belle chauffeuse, within 80 minutes of the clinic appointment time. I now await an appointment for an arthroscopy of the right knee.

The excitedly enthusiastic welcome home from Piper, our delightful hound, was overwhelming; he re-acted as if he’d missed the pair of us (ma belle et moi) for at least a couple of weeks. Of course my excursions away from the immediate vicinity of the homestead are quite rare occurrences so, the simultaneous absence of both his people may prove a little unsettling for our boy Piper.

Flummoxed by Circumstance

The heat and humidity of the past week have certainly, but unsurprisingly, had a detrimental effect on my relative state of well-being. Even before the hottest day arrived, I was already suffering payback, for over-exertion, in my desire to optimize the length of time & distance spent walking our gorgeous dog Piper.

Already impaired by that payback I'm somewhat flummoxed when trying to determine how much of my current ailments, tenderness of lymph nodes (both axillary and cervical), aching bones feeling somewhat as if they've been hollowed out and lined with lead and undergoing extreme gravitational tugs of war, are a continuation of the earlier payback and how much solely a response to climatic conditions.

I've reluctantly had to resort to supports applied to wrist, elbow, knee, ankle, and even tubular bandages covering most of my arm. I don't know whether this use of tubular bandage serves as some kind of lymphatic massage but, it certainly helps. Unfortunately, alongside the physical ailments, a re-active depression has had a deleterious effect on my ability to respond rationally to any minor physical or emotional setback.

Yesterday morning as I lay on my bed, chokingly sobbing, Piper ran up the stairs, placed his head beside mine and lay with me for a few minutes; that in itself demonstrated that his presence in our life proves therapeutic. I have actually managed a couple of shorter walks with the boy in the cooler parts of the evening.

Piper is certainly becoming more confident since joining our family, barking a confident disapproval of large darkly coloured dogs encountered on his walks, yet offering friendly sniff-based greeting to many other canines that he had at first cowered away from. Judging by this behaviour, I suspect that the scattering of scars on head and torso, received whilst in the pound, were caused by a really large dark coloured canine. He has certainly gained a good knowledge of our nearby footpaths and bridleways and seems to let his walker know when he's ready to head back home.

his mistress's scent

Piper

Piper

Although I spend much more time with the dog at home, than my beloved OH manages (owing to other commitments), she is definitely his dominant other. Fortunately, he now spends less time dolorously searching for his mistress when her other duties call and, this weekend he has been left solely in my charge, as his chosen other ventured down to the south of the country for a couple of days and nights. Now, after 10 hours of Helen's absence he has just been casting a few longing glances at the door of the lounge but, then goes trotting around the garden, looking for possible sources of mischief. On returning to the house he welcomes my attention before checking out the door once more, anxiously awaiting his mistresses return.

These days I hate, almost fear, spending evenings and nights alone in the house, feeling rather vulnerable, due no doubt, at least in part to my sundry physical (and reactive emotional) ailments but, I'm sure that Piper's companionship will help.

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

#ME – There and Back Again!

Sometimes it seems that even that moderately low plateau of stamina, is a level too high to return to. At present, a dispiriting pain and ache level of exhaustion seems intent upon taking permanent residence in my limbs and torso; at times its tentacles seem to stretch discomfortingly into head and psyche as well!

There’s always a price to be paid for even a modest additional expenditure of physical and emotional stamina, even when that expenditure itself seemed beneficial. Recuperation from payback seems to be tidal in nature; just when one thinks that the energy tide is in it swiftly ebbs away.

On Saturday 17^th some long standing friends made their way across the Pennines to Harrogate. Upon their arrival at the Cedar Court Hotel they ‘phoned to invite us over for beaucoup de catch up conversation and an early evening meal. The three to four hours spent with them passed in what seemed like one hour tops! Stamina resources didn’t seem to be a problem at all, I simply basked in the socializing experience.

Next afternoon, our friends joined us chez nous, for further chats and an early evening meal’ Fortunately, I’d already prepared a curry, earlier on the Saturday, so there wasn’t too much effort involved in dinner preparation.

Once again the few hours together seemed to pass at supersonic speed. For a while I felt as if my stamina was heading back to pre-illness levels and, I felt quite on form to co-host our monthly Bible Study group, chez nous, on the Monday afternoon. The study and fellowship proved rewarding as usual.

On Tuesday 19^th a degree of payback kicked in. A shattered painful exhaustion, swiftly metamorphosed from simple over-tiredness,to a sharp burning sensation on the uppers of my feet and simultaneous excruciating pains in my upper limbs, Meantime my torso felt crushed and bloated. That’s just a fragment of the discomforting regimen of the day. Wrist, elbow, and back supports were intermittently required, alongside a frequent recourse to tramadol.

By the Wednesday morning I felt as if I was being gradually restored to normality, only to regress on subsequent days. At least I’m now having less recourse to painkillers.

By the beginning of this week I feel as if emotional resilience has returned; all that remains are my more regular aches, pains, and sudden onset bouts of exhaustion.

 As I look out on blue skies, all’s well with the world.

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.

Moany Moany not Mony Mony

"Which way do I turn?" and "dare I turn?"; these related questions come to the fore at erratically scattered instants of day or night. In the past few days, tortuous pains have danced from left side of the back (a hollow bruising ache just below the shoulder blade, as if one was undergoing a sequence of blows from a felt coated lead lump hammer) to a more acute nagging pain in the left side of the back just above hip level. These sensations tend to overlap with a more constantly recurring gnawing ache just under the rib cage and, other old familiars returning with a vengeance. 

 A nausea inducing throbbing pain, on the inner side of the upper left arm - accompanied by a tenderness in the armpit, frequently prevents my attaining an appropriate period of rest during the night. As exhaustion overtakes me mid-afternoon, a gnawing ache, occasionally becoming more acute, in wrists and elbows necessitates the donning of wrist splints (both arms) and the taking of additional pain killers.Today, this discomfort in upper limbs vied for honours with a throbbing pain around the knees which seemed to ease slightly with the donning of elastic supports.

 A sensation of giddy light-headedness, alongside not infrequent griping reminders of my IBS and diverticular problems, does little to help me feel at ease. Despite all the above, I did manage to enjoy a celebratory lunch at The Park yesterday for our wedding anniversary but, even that didn't come payback free!

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!  

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.  

crash

just when I seemed to be bearing up well, a sudden shatteredness occurred - intermittently extreme discomfort in limbs & torso, aching eyes and ears, together with ultra touch sensitive back & shoulders - fatigue is the least of my worries!

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.

A Step Forward

Last night I managed to attend a Labour Party branch meeting, the first time for some months.  Colin Burgon’s most stimulating, inspiring and entertaining speech, “What can the Left learn from Venezuela?”, was followed by a lively discussion. A chance to replenish our glasses, hand-pulled ales being a rare treat for me these days, was followed by the more routine branch business. And, as if that wasn’t enough, I even managed to stay for some post meeting conversation.

Earlier in the day, I’d been seriously wondering whether it would be yet another occasion for me to proffer my apologies. After 13 -14 hours of bed rest / restlessness, it  had required a tremendous effort of both willpower and physical stamina to remove myself from the duvet lair. The gamut of emotions and felt body temperature was extremely broad, both limbs and torso felt shudderingly cold during the first hour or so, applied hot water bottles making little apparent difference. After two discomfortedly restless hours, au lit, the situation had reversed as perspiration oozed from head, torso and limbs.

Cramping pains in the left upper arm, spasmodically accompanied by aches across the upper chest and both shoulders, and a painful tenderness under the chin, conspired along with abdominal bloating to ensure that sleep remained a distant dream, or vain hope, for the next few hours. The gnawing spasms in the left upper arm persisted well into my ex-bed waking life.

Having experienced that degree of dis-ease in the preceding 20 hours or so, it came as a pleasant surprise to be able to participate in the LP meeting. Today I’m experiencing a little payback, a tawdry collection of gut-wrenching abdominal grumblings, searingly painful sinuses, aching limbs, jangling nerve ends and, an underwhelming sense of exhaustion. In terms of morale, the meeting / socializing experience, on this occasion, far outweighs any consequent additional discomforts.

from twinge to twang

Payback of an unexpected kind, for last weeks gardening exertions, slammed in to me this morning as I took a shower. The shower seat, which has previously proved an invaluable aid, turned out to be this morning’s site of reckoning. Having creakily lowered myself onto the said seat, the task of standing up again proved quite excruciating; the twinge experienced during the descent became a searing twang as my spine convulsed in the vicinity of the herniated disc.

Exiting from the shower proved an intensely painful nerve-wracking experience, and I subsequently needed the assistance of my beloved to towel myself down and get dressed. It’s just as well that ma belle’s recovery is, slowly but surely, getting underway.

A first attempt to move downstairs, walking stick aided, proved abortive. As I tried to lower one foot, onto the first step, a more sustained convulsive spasm toward the base of the spine erupted; a sudden leap up the pain scale from six to nine point five. Thus thwarted I returned to the bedroom and sat down for a little while until I summoned up the courage to attempt the staircase descent once again. With my right hand firmly grasping the handrail, and supportive walking stick in the left hand, I tentatively lowered the right foot onto the first step, and utilized the right foot lead mode on each subsequent step.

A sense of achievement and relief at thus shuffling down the stairs was its own reward.