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!

that old familiar routine

There seems to be an increasing amount of times that I begin to feel (unjustifiably) guilty; at the same time I’m perhaps forgetting many incidents about which I perhaps should have felt guilt. The recent feelings of guilt are invariably related to my (chronic) illness; I can’t help but feel that my inability to socialize, or even far too frequently not being able to go out anywhere at all, places an unfair imposition on my beloved OH.

For the past several weeks I seem to have reverted to an older pattern of routine discomfort. Shatteredness is my routine daily state of being; far too frequently my sluggish emergence from the duvet lair necessitates a further rest after the effort of getting dressed. 

My gradual emergence into the new day, from the nocturnal duvet realm, usually takes place between 10.30 and 11.00am. On a good day, after a reviving intake of caffeine, I’ll go up to the garden pond to feed the fish and, stamina permitting, water the tomato plants in the greenhouse. If it’s a really good day I’ll maybe saunter, stout walking stick enabled, to the neighbourhood parade of shops; other times it will simply be back indoors for a rest.

Unfortunately, at present, I lack the concentration or attention span to settle down to read and enjoy any of the seductive volumes that can be found in abundance chez nous. Where once I enjoyed reading, both for pleasure and study purposes, I now impatiently await those rare intervals when a sufficiency of both physical and emotional stamina is available.

A variability in times it takes for sundry muscular, joint, and other aches and searing pains to set in (and drain my stamina reserves) means that my body imposes a need for further laying down rest any time from early to late afternoon. By this time I’ve often had to don wrist and elbow supports to help ease quite severe discomfort in my limbs. When ma belle is at home she easily recognizes when such rest is needed as pallor suddenly sets in.

By 9.00pm, or shortly thereafter, acute tiredness envelops me, and aided by a dose of amitriptylene and some tramadol to ease pain and muscular spasms, I head up the wooden stairs in anticipation (rarely, if ever, fulfilled) of a good nights sleep!

a little bit forward and a few steps back

 After thirteen hours bed rest, and subsequent slow saunter downstairs and into the kitchen, I boldly strove to prepare a curry for Sunday and at least one subsequent day’s dinner. It turned out to be one of the most satisfactory curries I’ve ever produced from scratch; a subtle balance between heat and flavour (or spice and other ingredients) proved most enjoyable.

 

After my recent achingly exhausted days, I started to feel as if a modest recovery was in the offing. Before dinner I wandered up to the garden pond to feed the fish and then watered the tomato plants in the greenhouse.

 

Mid-afternoon a painful ache in my left wrist was swiftly followed by a throbbing pain in the elbow of the same limb. I swiftly strapped up the aching joints to make myself feel  a little more comfortable*. Within ten minutes my lower limbs were afflicted with a dull throbbing ache whilst I simultaneously began to feel dizzily light-headed. By this time my face had, apparently, drained of all colour – an appropriate pallor to accompany an essential lying down to rest.

 

It wasn’t long before a nausea inducing discomfort in the armpits took its rightful place alongside aching knees and ankles. All that was needed to complete the picture was a recurrence of the abdominal spasms; fortunately this symptom was only mildly represented on this occasion.

 

The adventure continues.

 

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*unfortunately this didn't preclude a necessary resorting to some heavy duty pain-killers

 

 

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.  

a joyous combination

A wonderful combination of garden, sunshine, and gentle breeze helps lift the spirits. Having fed the goldfish in the pond, and watered the tomato plants (both in the greenhouse and the great outdoors), a sit down on the garden bench, slightly shaded from the sunshine’s full glare, provided a rich reward.

Birds, bees and butterflies, a kind of fluttering congregation, hovered and winged around in close proximity to me. I couldn’t really say whether they were oblivious to, or acceptingly aware of, my presence. I even enjoyed the shadow play on an adjacent wall, an animated conversation between shadow and light.

It was almost as if this simple celebration boosted the efficacy of the preceding dose of tramadol. If only thinking positive thoughts could provide a cure, today I’d be the healthiest creature on planet earth.

Unfortunately, there are too many occasions when even the necessary stamina for true relaxation is in abeyance.

a lack of progress report

It happened again yesterday, on my way back home from dropping in a repeat prescription request form; I bumped into an acquaintance of mine from my more active days of yore and His (seemingly inevitable) first comment was about how well I looked. I had to admit that I’d had worse days; after all, it’s only on those most welcome better days I get out for even a short gentle stroll.

In the past few weeks all my endeavours to walk down to ‘Open Church’ have been thwarted by a combination of rubber leg syndrome, aching joints, and a disturbingly acute onset lack of stamina. Even the utilization of a good strong back support and sturdy walking stick do little to alleviate these symptoms. At other times the erratic behaviour of a spastic colon and diverticular disease has prevented me from even venturing away from the house.

This afternoon I set off with my beloved to collect my prescription; this time after walking barely a couple of hundred yards, a return home was essential for me. My legs were suddenly heavy, it felt as if my torso was being supported by two loosely wrapped felt tubes stuffed with sodden kapok. Back in the house I collapsed into my chair as aches and pains raged and spasmed through my right hand side pectoral muscles and across my upper abdomen. A sharp gnawing pain in the left armpit and inner upper arm played a nerve jangling counterpoint.

Totally disorientated, my head felt as if it was stuffed with some heavily brocaded fabric. Sudden unprovoked perspiration oozed from my head and torso as I became frightened by the prospect of fear itself.

The order of horizontality was essential to restore my equilibrium!

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 ….

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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!

A Traveller's Tale

 As the names Sheffield & Leeds appeared on the motorway signs I felt able to breathe freely once more. There really is no other place on earth quite like God’s own county and, having just travelled up from deepest Hertfordshire, the thought of soon being able to set foot once again on Yorkshire’s sacred ground proved truly heart-warming! To be totally honest, the ‘heart-warming’ was probably in response to the prospect of arriving home on the third day. Although born a “man of Kent”, and having inhabited points North, South, East & West of England, I am proud to be a Northerner and born-again Yorkshire man.

Our outbound journey, on Thursday, was not without its little hiccups as (what should have been) a three and a half hour journey turned into a more tortuous five hours of intermittent frustration. I’m not a good traveller at the best of times and this was most certainly not the best!

We received a most friendly welcome when we finally arrived at the Red Lion Hotel, in Radlett. The purpose of our venture southwards was to attend the wedding of one of Helen’s nieces; the wedding service was being held at St Paul’s Church in St Albans and the reception at Shenley Cricket Centre, the Church approximately seven miles and the reception venue just over one mile from the hotel we’d booked into.

The meal we had in the hotel’s restaurant was really excellent, at the time I thought it almost made the journey worthwhile. A most obliging waitress came back with the recipe for the sauce served with our main course as I’d been so enthusiastic about it and, she also printed out the route to be taken from the hotel to St Pauls.

After a most restless night, I managed to make it down for breakfast even though sundry muscular and joint pains had begun to kick in. The rest of the morning was spent lying down, attempting to get some rest before we set off for the wedding. Come the time we were due for departure to St Albans I knew there was no way I’d be able to cope with neither the journey to nor the ceremony itself.

My attempts to rest and relax whilst ma belle had headed off to the wedding were thwarted by the blaring/beeping of car horns (by the aggressive southern motorists as they approached the mini-roundabout in close proximity to the hotel). By this time a pounding headache and a disorientating spinning sensation, closely akin to that experienced when I suffered with labyrinthitis, joined the by now familiar aches and pains searing through my limbs whilst the ribcage was feeling rather bruised.

I should add that by this time I’d begun to be overwhelmed by a sense of despairing self-pity, after all this same Friday was also my birthday and here I was in an alien land feeling quite alone and desolate. When my beloved returned from the wedding service I reluctantly agreed to take a taxi to the reception. That decision proved totally disastrous as I was unable to cope with the babble of conversation and (joyous?) laughter – a total sensory overload. Within fifteen minutes we were in a taxi back to the hotel.

Later in the evening I felt almost ready to eat so, Helen and I ventured down through the bar to the restaurant only to be informed that the restaurant was closed (due to the extra bar business where the televised soccer seemed to be a major attraction and shortage of staff). I muttered to ma belle, “typical, it’s just not my f…ing day; it’s the most f…ing wretched birthday I’ve ever experienced, a bloody nightmare”.

Suddenly a degree of sanity overwhelmed me; I went to the Hotel Reception Desk to make an official complaint that we, as paying guests, had not been informed that the restaurant would be closed on a Friday evening. A few minutes later we were taken to the restaurant where a waitress took our order and the chef came to check whether and when we needed anything. This is what I consider service beyond the call of duty. I’d mentioned to the waitress that part of the reason I couldn’t cope with the noisy environment (of the bar) was because of my moderate M.E. As we finished our desserts the waitress volunteered that we could exit the restaurant via the kitchen, thus avoiding the bustling activity of the bar.

Although I didn’t manage to attend either the ceremony or the reception, for which we’d made the journey down, it was a delight to experience such real hospitality proffered by the Red Lion, Radlett, Herts.

Our return journey, on Saturday morning, passed without a hitch – the exact reverse of the route we’d intended to take on the outward journey – and we reached home in just three and a quarter hours. Recuperation from the adventure may take quite some time but, it’s slightly easier to cope with sundry ailments when at home in familiar territory.

just as I am - and do not wish to be

Tuesday morning I removed myself from the duvet lair bright and early, feeling unusually alert and refreshed. It was only later in the day that I started to suffer for this foolhardiness, as I became a totally shattered wreck, and I’m still struggling – four and a half days later - to regain my usual familiarly limited reserves of stamina.

Headaches, giddiness, muscular pains and spasms, tenderness in armpits and under the chin, a bruised feeling around the ribcage alongside a sore throat and roof of the mouth, such have been the rewards for my carelessness.

To be perfectly honest, I suspect the ‘early morning’ was simply the carelessly thrown match landing on a tinder pile which would have self-combusted sooner or later.

Another bout of perspiration, suddenly oozing from forehead, chest and arms, seems to prefigure a renewed surge of shattered exhaustion. Frustration swiftly follows as I teeter on the brink of despair, feebly yielding to a flow of tears; a plenitude of gnawing aches destroys any semblance of composure.

Whatever Happens - (or A Customer Dis-service)

Whatever Happens don’t expect a reasonable service. Early this morning I had occasion to contact PC World’s ‘Whatever Happens’ service as a Packard Bell desktop, purchased less than two years ago (from PC World) and covered by a three year “Whatever Happens” warranty, had gone dead.

On ringing the necessary number on this 24/7 service, and having pushed sundry  buttons on the telephone in an attempt to follow the commands issued by a disembodied telephonic voice, I eventually got through to a real life voice. At this point I was urged to disconnect all leads from the non-functioning PC and press the power switch on whilst repeatedly tapping F8. Not even a beep was heard as I could have told him; no BIOS – no anything.

This wonderful service promises an engineer on the next working day but, according to the technician, that no longer applies as there were too many call outs and the engineer didn’t necessarily have the right components. Why they didn’t have the right components is something of a mystery as they have full knowledge of the machine model which they’re going to be servicing!

Next, he told me that they would collect it tomorrow but was unable to give me a time. Evidently it is the customer’s responsibility to go online after 9.00pm to get a rough idea of when they will be calling. Service obviously isn’t their concern whatever happens. Even the phone call (some 40 odd minutes duration I think)to an 0844 number, is at the customer’s expense and, the PC base unit will be away for a full week. So much for a next day service!

Whatever happens, remember their warranties are subject to change without informing the customer.

 Don’t expect good service – WHATEVER HAPPENS! That way you’ll not be disappointed.