Easter Greeting

utilized day but what a night

And yesterday I was gifted with a little extra stamina and, I also felt capable of correctly pacing my utilisation of this resource.  Took advantage of this little power surge to top-up and refill the sundry avian feeding stations in our garden; meal worms, sunflower hearts, black sunflower seeds, suet treats etc. most of which swiftly attracted a miscellany of birds ranging from starlings, blackbirds, finches, blue, coal and great tits, collared doves and the odd wood pigeon were all ready for some superior dining experience. I swiftly realised that all the birds’ watering stations needed de-icing so heated up some water.

Already my halo was shining and, I felt totally in control of my physical stamina resource. Mid-afternoon was time to sort out the main aquarium, changing 30 litres (out of the tanks 180litres) and changing nitrate removal filter and a couple of others. Proud of my achievement I relaxed a little before par-boiling a few potatoes, ready for roasting alongside the already simmering casserole which I’d prepared on Sunday.

That’s when the tiredness hit but, fortunately, not uncomfortably so. Come bedtime, I started to feel that I was being punished for the day’s moderate exertions. Perhaps I’m not handling my pacing all that well. Tenderness of the glands under my chin and in the armpits seemed to be sufficiently calmed by a fairly light dose of painkillers but, obviously I’d been deceived again!

Having joined my beloved au lit, decided to watch a diverting little sitcom on TV before snuggling down.  Within about ten minutes of attempting to settle down, the peripatetic clog dancers decided my lower limbs were an ideal place to practice. The duvet felt as if it was scrubbing the skin off my toes as a nausea inducing bruised aching feeling ambled from calf to thigh and back again. Whatever angle I positioned my legs bent or straight, stretched over the end of the bed, hung out over the bed side, the disconcerting ache continued. At one stage I half fell from the bed, my right calf resting on the rug whilst my left lower limb remained in bed, a real groin stretching experience. I can assure you that this posture wasn’t the result of any voluntary action.

Next thing, the old familiar nauseating aches in both arms began to do their darnedest; applying wrist support splints initially seemed to make little difference. I found myself unwittingly whispering, and occasionally screaming, profanities against the Gethsemane night, alongside whimpering like a lonely puppy. Many hours later I started to enjoy a little post-dawn sleep.

Reluctantly, I emerged from the duvet lair, and returned morning greetings to the bright shiny sun!

TRYING TIMES

And suddenly I’m swamped, drowning in the muddy wastes of isolation. It’s not that I’m alone, nor am I not loved; the problem is the endless nagging of sundry aches and pains, the loss of contact with those I once considered friends as if it’s some kind of punishment for being exhaustingly unwell. Where once I was a social and political activist of a somewhat gregarious disposition, attending clubs, concerts, theatre, cinema, I’m now trying hard (although it often comes quite naturally) to be content with a lifestyle where all my entertainment has to be served at home, and campaigning becomes virtual via the internet.

I must admit to the blessings of TV, radio, CDs and mp3s but, they never fully compensate for the more participative experience of actually being present in the theatre, cinema, concert hall or jazz club. For much of the past ten years I’ve had neither sufficient stamina or confidence to think of attending / coping with the duration of a church service, although previously a regular attendee and house-group leader, especially if there’s a reasonably large congregation.

Much of the time I manage to accept these health imposed limitations without too much grieving, at others – such as today, a sense of frustration and despondency verges on despair. Perhaps the frustration really began when I didn’t feel really up to dining out with my beloved and her daughters; a sense of guilt swiftly ensued as I felt, albeit needlessly, that I was being anti-social. At times like this, I start to feel that I’m a burden on my beloved OH and family, although they reassure me that I’m not!

As I write my own report card the familiar words, “must try harder”, take on a marked significance. It’s so easy to be trying, even when it’s difficult to try.

sunshine and celebration

Sometimes it seems as if the day is almost over before I even get started. In one way this is good, it’s generally a sign that I’m appreciating each waking moment, so much so that it’s sometimes a real struggle to stop myself resenting the earth’s rapid orbit.  Recently we’ve been sighting a bright glowing orb in the sky, bringing a little warmth and elevating one’s spirit; after weeks of dull wet days the sunshine has proved most welcome.

As my beloved took a few days off work, around the time of our wedding anniversary, time seems to pass even more sweetly as we enjoy each other’s company. Visits to Café Culture, for a cuppa and cakes, and Al Bivio Ristorante helped heighten the sense of celebration. We also paid a visit to the garden centre at Otley where I acquired a new bird feeding station for the garden, finally using the vouchers that I’d received for my birthday last June; although the centre is less than ten miles away this was the first time I’d really felt up to spending a little time there browsing around. I especially enjoyed looking at the reptiles in the centre’s pet shop.

Meantime, I’ve acquired 5 more golden and 5 white cloud minnows which, having first spent ten days in my quarantine tank,  have now been added to the Main aquarium.  It’s really quite strange that, having introduced my beloved OH to blogging. I have to check out Helen’s blog to see what I’ve been up to!

On Wednesday I had an appointment with my GP, a lesion on my leg, which I’d been attempting to alleviate with a 1% hydrocortisone preparation, wasn’t showing any improvement (quite the opposite in fact) so I was going to see the doctor who specialized more in skin disorders. He was quite baffled by this particular sore spot, it was quite unlike anything he was familiar with, definitely not discoid eczema or Bowens etc;  so he prescribed a potent topical corticosteroid (Mometasone Furoate) which I’ve to apply once a day for a fortnight. He also checked a small occasionally weeping lesion on my chest which he says is a basal cell carcinoma and has duly referred me to the District Hospital. [I’ve had previous experience of having a bcc excised – see ‘Sunshine and Blanket Stitch’] If the ointment applied to my leg hasn’t healed the lesion he suggests I also have the specialist look at that when I have my appointment for the bcc!

Another positive outcome of the visit was to confirm that the recent X-Ray of my hips, following a quite prolonged period of chronic pain, apparently emanating from the right hip, showed no abnormality on the right hand side but, it did show that I had arthiritis on the left-hand side. Fortunately, after copious doses of tramadol & co-codamol the pain had eventually abated!

I received a further acupuncture treatment on Thursday and, I’m no longer averse to expecting resultant miracles. Life goes on and I’m determined to enjoy it – if only I could discover some refreshing sleep all manner of things would be well!   

for this ordinary day ...

What a relief; today I feel much more my usual “better-day” self! Yesterday was the kind of day one always hopes to avoid; from waking-up, after a familiarly intermittent non-refreshing pattern of sleep, and throughout the whole day and evening I felt numbingly exhausted, despite the fact that the excruciating pains in my hip and left limb were quite markedly in abeyance.

 

Last night, as I [un]settled down to sleep, that once far too familiar painfully hollow sharp bruised ache in my left arm took over. Having already taken painkillers, I duly applied a wrist splint which seems [occasionally] to alleviate the nauseating discomfort. A nausea inducing dull tenderness in the armpits soon became apparent; I had to remove my [not at all tight fitting] pyjama jacket which began to feel as if it was constricting armpits, upper arms and shoulders.  

 

The minor setback followed eight days in which I had felt the brightest I could remember for a considerable time. Concentration, alertness and general sense of wellbeing were on a, far too rare, high consequent upon the acupuncture treatment received on 31 January.

 

I feel really blessed in having visits from a physiotherapist, trained in both Eastern and Western models of acupuncture, who has considerable experience / understanding of ME [Myalgic Encephalomyelitis] both as a practitioner and a fellow sufferer. Being enthusiastically athletic, it must have come as quite a blow when she succumbed to this wretched neurological condition. Working as a physiotherapist, she had noticed the detrimental effect that exercise was having on some of her clients; at the time I doubt whether there was any inkling that this could become part of her own experience.

 

Today has been a wonderfully relaxed time in the company of my beloved, exchanging sweet nothings, and catching up with some recorded TV programmes. For this ordinary day – I give thanks.

Reposted on Mal's Factory

The Leicester car park skeleton having been positively identified as that of Richard III, the last Plantagenet king,

I deemed it appropriate to repost the poem

'Mission Betrayed' [Redemore 22 August 1485],

on 'Mal's Factory'

and I'm feeling fine ... ailments excepted

Oh, the sheer delight of a nice warm shower; there are so many things we tend to take for granted, thus depriving oneself of that real appreciative thrill. I admit to having gone through quite a long period of avoiding too frequent a shower, having found the effort involved far too enervating; by the time I’d towelled myself dry I needed a further bout of bed rest.

The acquisition and installation of a secure shower seat alleviated some of the more dauntingly exhausting aspects but, even then, when I stand up my sense of balance (within those steamy environs) is insufficient for me to feel at all secure. Fortunately, my beloved OH is there to proffer assistance at my now more usual, although spasmodic, evening shower time.

******

Anyway, last evening’s shower proved especially beneficial; a most recently acquired acute pain extending from the neck and upper spine across the shoulder blade had made it difficult to even put on my shirt as I rose from my bed. My beloved applied generous amounts of ibuprofen gel all around the affected area. An attempt to lay back down proved even more painful so I persevered with getting dressed as, in any case, ma belle chauffeuse (aka Helen, ma belle, my OH, my wife, my lover, my bestest friend) was preparing to take me to the hospital for an X-ray and blood tests. The shower certainly alleviated the shoulder pain, even though it rarely seems to help sundry other painful ailments.

It seemed strange hobbling into the X-ray room posture made awkward with the shoulder pain, as the area to be photographed was my hip! What’s the connection, you may well wonder; so I proffer an hypothesis. On Tuesday evening, the night before last, ma belle et moi ventured out to the branch labour party meeting at the Catholic club. The meeting was due to start at 7.30 and, we duly arrived in good time on a blustery rainy evening. Unfortunately the doors of the venue were not due to be opened until 7.30 so we had a little time spent exposed to the elements. By the time we’d got in and sat down, my hip and lower limbs felt extremely uncomfortable, so I had to keep shuffling around to try to get comfortable; I suspect the changing postures involved, in  these hip-pain alleviating manoeuvres, were responsible for unusual stresses on the shoulder.

******

This afternoon the physio arrived chez nous to apply the magic needles. As I relaxed a beautiful warm glow seemed to permeate my limbs, after which I experienced a wonderful carefree rest in my favourite supportive high back armchair. Over recent years acupuncture has proved a great source of pain reduction and stamina boosting for me, a convinced sceptic until I tried it!  

And, I’m feeling fine!

ailing and rejoicing

It seems really strange how quickly the days, weeks, months and even years, scurry by! I often think of how little I manage to do each day, and yet, time still manages to pass almost too quickly for comfort. Even on days where my sundry ailments are crying havoc, and I wish the pain and discomfort would quickly pass, I can never wish the day to end as I look forward to my OH’s return from work. I wish the ailments would disappear but not the day.

 I appreciate every moment of my existence, the piscine activity in aquarium and pond, the birds visiting our garden but, most importantly,  the more time I can spend with my beloved the better; each moment of life is to be savoured and I give thanks that I still have the ability to appreciate it.

As I write I’m sitting in comfort at the fireside, listening to Berlioz’s Overture to King Lear (courtesy of Radio 3) and, casting an eye over the garden; I never thought multi-tasking was something I could manage! My furthest ventures out in recent weeks have been to the local shops and, on one occasion, the extra few minutes trudge to see my doctor.

Even after 8½ years, since succumbing to this illness, I still find it difficult to accept that I can no longer take a “proper” walk! I can at least manage many things better than was the case in the not too distant past. As long as I remember to PACE myself, take appropriate medication, and feel and express gratitude for all life’s blessings (including the ministrations of my physiotherapist – herself a PwME – as she applies the acupuncture needles ), I do experience reasonably long periods when many of the symptoms appear to have gone into remission.

I am currently battling (unsuccessfully for the past six to eight weeks) with acute, although spasmodic, pains in the hip and left lower limb joints and muscles. Externally applied Ibuprofen gel had barely any effect. A thorough examination by my GP, who I saw once these symptoms started interfering further with an already erratic pattern of unrefreshing sleep, left me feeling rather more bruised and battered. He prescribed 2 x Co-codamol 15/500 to be taken (in alternate doses) with my usual 2 x 50ml tramadol and the usual pre-bedtime amitriptyline.

 So far the results are not at all promising but, tomorrow I’ll be going to the District Hospital for a hip X-Ray and blood tests, and the possibility of a further scan.

Although I initially thought it may just be a bout of sciatica, rather than a recurrence of my herniated disc problem, I’m no longer prepared to self-diagnose.

As I continue writing the Red Kite has entered my field of vision, circling just beyond our garden boundary. I’m quite surprised to see it today as conditions are wet and blustery. At lower level, blue tits, coal tits, and a robin have been visiting our feeders.

This evening, emotional and physical stamina permitting, I’m hoping to attend the AGM of our local Labour Party.

I rejoice and am glad in this day the Lord has made.

simple pleasures and a heartless regime

Sometimes, far too frequently in fact, I forget to count my blessings.

Quite recently I was able to enjoy Christmas to a far greater extent than has been the case for several years past; I actually managed to pace myself reasonably well, with a minimum of twelve hours bed rest per twenty-four. Medications and grace combined to keep the worst excesses of pains, aches and sensory overload at bay; even my limited reserves of emotional stamina held out well for this time of grateful celebration.

In the past few days I’ve crashed a little; sudden bouts of fatiguing exhaustion during daytime hours are (almost invariably) followed by restlessly discomforting nights. At least I’m able to do a bit of reading, even though my concentration wavers considerably more than in days of yore! Most importantly, I’m able to enjoy the activity without it seeming a chore.

I always feel privileged to love and be loved by ma belle Helen, just to hold and be held by each other brings with it a tremendous sense of wholeness, going a long way towards alleviating that sense of isolation arising from a greatly restricted ability to socialise in the wider world since the onset of this debilitating illness.

Sat in a comfortable supporting armchair, I can watch all the avian activity in our garden; in recent days we’ve had plentiful visits from coal, blue, and long-tailed tits, alongside the sparrows and starlings. Their antics are always a delight, as are the regular sightings of red kite, gracefully riding the thermals overhead.

As a recipient of a state pension, alongside a couple of small company pensions, I am fortunate that I no longer have to be dragged through the arduous demeaning benefits medical assessments, that so many sufferers of chronic illnesses – mental or physical – are so unfairly forced to endure, adding further stress to their already vulnerable state of being.

I am truly blessed, having food in my belly, a roof over my head and, we are still able to afford to keep ourselves warm (despite the profiteering greed of the privatized utilities). These things, that should be a right, are increasingly becoming a privilege under a heartless ConDem regime.   

To Sleep Perchance ...

Just what’s going on in my body; I neither understand nor have the appropriate vocabulary to realistically express it. Sometimes I can feel mentally/emotionally well whilst my body feels excruciatingly below par; I didn’t think this was supposed to happen! At other times, whilst my corporeal aches and pains are in temporary abeyance, I can feel emotionally drained. I sometimes wonder if the sundry prescribed medications I take can become part of the problem.

I regularly resort to mebeverine (antispasmodic) to deal with my spastic colon/IBS; at other times a little motility aid such as domperidone (dopamine antagonist) is required. Alongside these I always have to take lansoprazole (proton pump inhibitor) to tackle a major gastric reflux problem.

I have recently been taking a small dose of sertraline daily, to deal with an anxiety/reactive depression issue, whilst at night 30mg amitriptyline is prescribed to assist (theoretically) with sleep and pain management. Currently, I also need to take 100mg tramadol a couple of times a day to deal with muscular and neurological pain.

That little diversion, into a pharmacopoeia, was not intentional; it just seemed easier to scribble down than a description of how exhaustedly crap I’d been feeling in the past couple of days. Sadly I’ve had to forego a couple of Christmas social evenings this week, both of which I’d been looking forward to; mind you, that simply reflects my general lack of physical and emotional stamina since 2003.

When I do manage to sleep, I’ve recently been having very vivid audio visual Technicolor dreams, not infrequently drifting from ultra normal situations, with many familiar faces, into the edge of nightmare territory. In one such dream friendly banter amongst friends took an horrific turn as an ogre broke into the room. The ogre, which I understood to be a “Cam-Moron”, had a smug superior grin as his cheeks blushed with roseate anger. “We’re going to put all you lot down”, he sneered. At that point I woke up to a fuller realization of what the ConDems were doing to the poor and vulnerable! 

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this post also appears on 'Mals Murmurings' under the title 'We Are Such Stuff ...'