When Purgatory Beckons

I’ve always heard about the road to hell being paved with good intentions and, have more recently discovered that another’s good intention can bring severe dis-ease to the one being benefited by their deed. The past few weeks have not been easy for me to cope with, the aftermath of my minor stroke and that of my step-daughter’s accident, the latter needing my beloved’s assistance to dress and shower herself.

Over many years I learned to live both in communal houses and alone, much of the time at peace with myself. In more recent years I have lived in relative peace and harmony solely alongside my beloved OH. As I’ve mentioned before, since the onset of my chronic illness I have become increasingly tetchy, even over apparently trivial matters.

This morning my semi-invalided step-daughter suggested that the dust in our (that of mine and my OH) bedroom  was rather un-healthy and, decided with her one (currently) usable arm to take the vacuum cleaner upstairs to do the cleaning. You can only imagine, or maybe not, my dismay at being told, by a young lady who has four cats romping about in and out of all rooms, that our bedroom was unhealthy! I had already been made to feel guilty at my relative inactivity when a person with one arm immobilised, and purportedly in intense pain, could manage domestic duties of a kind which my physical and emotional stamina levels require that I ration.

The final hump-breaking straw was her decision to mop the floor using a pot pourri scented thick disinfectant, as a result of which I later had to struggle to regain my balance as I took a slipper shod slide across part of the bedroom floor! Fortunately that struggle ended successfully but, it was yet a further warning that a good deed, if ill considered, is certainly a step into purgatory.

CHANTING PSALMS out of ANGER and FRUSTRATION

Currently, my temper is running on a very short fuse, swift to anger but sluggish in calming down. At its worst I end up upsetting those whom I love and even, at times, keeping temper simmering long after the immediate (sometimes trivial) cause for letting it loose has disappeared. There are many times my anger is justified especially when I look at the policies pursued by our Tory government, that of the US of A and, indeed, the governments and people of all nations that punish the vulnerable and worship private wealth. Very little regard seems to be paid to the unethical practices that have enabled that wealth accumulation in the first place!

My less justified outbursts usually occur when I am in rather acute pain and discomfort; one word out of place, from another party, can so easily release a vehement stream of verbal chastisement and abuse from yours truly. These are times when my response / reaction leaves me ashamed and guilty for the distress which I may have caused.

Having expressed that mea culpa I can move on to the more regular occasions when the air around me becomes filled with expletives and near blasphemy. The frequency with which limbs and torso are acutely and crushingly subjected to intense discomforting pain has recently increased, reverting to that state I experienced not long after ME (myalgic encephalomyelitis) first held me in its thrall. The main trouble is that the discomfort strikes so suddenly, whether in wrists, elbows, knees or elsewhere on the torso, it almost inevitably transforms the axillary lymph nodes into a discomforting, nausea inducing, dis-ease. During the night, as I futilely hope and pray for refreshing sleep, restless legs, painful feet, and lymph node tenderness compete for my attention, the only reaction that rears its head is a ferociously spitted out “Jesus Christ” followed by a torrent of expletives as I vainly attempt to find a comfortable position either in or out of bed.

This morning, as I checked out my Facebook homepage, I stumbled upon this quote from Blake Chastain – “Sometimes swearing is just a minimalist psalm”.

So, even when I find it difficult to pray, I find myself enthusiastically chanting Psalms.

In the Book of Psalms there is so much anger and despair amongst the ritual hymns but, none as succinct as the involuntary F-word that spews from my mouth when pain and discomfort is at its keenest.

of enjoyment, endeavours and frustrating limitations

I’m just so grateful that I became more alert as Tuesday afternoon progressed. By early evening I really felt on good form as Beth, Helen and myself enjoyed a meal at Brios to celebrate Beth’s birthday. I do feel really blessed with such an adorable wife and wonderful step-daughters, they have made my life so much richer.

Although it took quite a while to settle down to sleep, after dining out, I didn’t have too bad a night’s rest albeit with the far too familiar intermittent bouts of sleep! Wednesday morning, I ventured out into the garden by 11.00am to perform a few minor chores, the primary one being to split up a clump of globe thistles (echinops ritro) which had rather outgrown their particular situation. I potted up a small clump, to set aside for a friend who had expressed an interest in them. No sooner had that task been performed than Cathy arrived to visit us, and join us for lunch, just before she was due to head off back to her work in Switzerland. I must admit I was grateful for the break.

Late afternoon found ma belle et moi back out in the garden. This time I transplanted some of the thistles, elsewhere in the garden, before shovelling out some of the wonderful humus from the bottom of our compost bin. The latter task proved quite exhausting and, it wasn’t too long before I found myself achingly on the verge of collapse. I thought it wise to listen to my body! My beloved supervised me as I took a shower before settling down to a very lazy evening. Even though I felt exhaustedly tired when I retired au lit, at about 10.00pm, an extremely restless night followed. Intermittent sleep took over from around 4.00am and I finally emerged into a beautiful new day at around 11.00am. It seems that, these days, regardless of my levels of activity / inactivity, my bed rest requirement is generally between 11 and 13 hours.

Earlier attempts to write this blog were thwarted by a nausea inducing discomfort emanating from the armpits. It’s really hard to describe this sensation, which forces me to clamp my arms tightly to my side or stretch them behind my back but, it totally disrupts any attempt to concentrate on reading or web-surfing. I’ve discovered that this type of discomfort can, occasionally, be moderately alleviated by applying my arms to a more directly physical activity but that’s entirely dependent on my having a sufficient reserve of stamina.

ME/CFS - Challenges of daily living

"Christine Milner is one of 250,000 in the UK who suffers from chronic fatigue, or ME. Here she gives a personal insight into what her life is like.

You wake up in the morning with a pounding head, aching from head to foot.

Your arms and legs feel like lead, your brain seems stuffed with cotton wool.

You console yourself with the thought that by this time next week you'll feel better.

Except you don't. No medication makes any difference to the way you feel, and over the coming weeks and months various doctors and well-meaning friends encourage you to "just do a bit more each day", even though you have as little energy and as much pain as you did that first day."

This is the beginning of an excellent article on living with ME/CFS - the full article can be found in the Yorkshire Post of 04 March 2009 ... Learning to live with challenges of chronic fatigue one day at at a time

Sleeping - Waking - Waiting

 

It’s no longer sleep that’s the problem but rather waking. Great as it feels to be getting some real deep sleep, having previously experienced so many painfully restless nights, the necessity of sleep now seems to be overplaying its hand. Whilst I am really appreciative of the extra time (theoretically) I have to spend with my beloved, as she has been taking a few days leave, my extra sleep requirement has somewhat eaten into these precious moments.

 

Presently, my pain management routine seems to be kicking in; it’s almost a case of pain remaining at acceptable levels, permitting one the ability to think, and even concentrate, for a somewhat more sustained period. There is just so much to be grateful for!

 

This afternoon, I received a ‘phone call from my GP’s practice and, have duly made an appointment for Wednesday morning to discuss the results of my MRI scan. I’m not committed to anticipating either the worst or the best from these results; it’s simply a case of remaining patient until I get them. It was quite a surprise to hear so soon as, when I’d had the scan last Thursday, they informed me that it would be approximately two weeks before my doctor would have the result.  

Returning Home from Being There

 

An endless numbness, a dull sullen hanging sense of nausea and, barely the energy to read a single word, listen to a note of music; if only I had the stamina to put a thought together it would probably turn into a single-syllabled question. The querulous word would, I suspect, be more on the lines of “What” rather than “Why”.

I’ve long since given up on the existential / metaphysical why; more an exercise in futility rather than to proffer any result. “What” keeps the world alive, “why” seems more like an evasion.

Well, that’s yesterday dealt with; today I have returned to me. The preceding days, and nights, had been dominated by intensely excruciating pain, ranging from the numbing tourniquet, to the slightly blunted arrow; the bone and muscle crumbling ache in combat with those swiftly-fleeting nerve-tingling darts that seem to take one’s breath away; a kind of Topsy-Turvy Terpsichore:

Dance rules over all – it prevails against reason, common-sense and substantial portions of ritual belief. Trouble is that, we are never in control; I am currently in thrall to a kind of voodoo dance –nature’s response to a crushing debilitating pain scenario.

When all else fails, randomly fling limbs in whatsoever direction they feel like; if it causes further discomfort then that adds a whole new terpsichorean overlay, disclosing hitherto undreamt of fraught sequences of space displacement.

On Monday my pain-killing medication was changed, to a 3 day slow release opiate patch. Having applied the patch, late afternoon, my familiar discomforted restless night was in attendance, so nothing different then but the following morn was quite a different proposition. A total inability to concentrate, a generalized dull ache underlining the spasmodically erupting specific sharp pains; all was eventually blanketed under a heavily nausea spiced  airless cloud of unbeing, crushing a body wracked in turn between hot and cold shivering sweats.

Needless to say, all the remaining patches have been returned to the pharmacy and, my routine has been switched back to Tramadol, this time of a non-modified release type, to enable me to remain in control, modifying the dosage as necessary. Meanwhile, I’ve once again been referred to the hospital for further investigative work.

The 18 hours respite, including some ‘real’ bed rest, between removing the patch and taking a further pain-killer, has served to enhance my appreciation of the home environment. For the first-time this season, I was aware of the seasonally decorated dining table, and the various Christmas ornaments and tinsel sundrily scattered around our abode. This awareness of one’s habitation, the taste of food, the sound of music and always one’s loving companion is a gift to be truly celebrated. The return from a pain-riddled drug addled stupor makes me feel like the fabled Prodigal Son; although at heart I am always aware of the love that surrounds me, it’s good to receive a whole-hearted reminder, for one’s abode to find it’s rightful status as Home.

 

collapse of the stoical front

Occasionally the stoical front collapses and tears catch one by surprise. That sudden inexplicable low, amidst the sundry serial and perpetual ailments that beset one, tips the balance. Is it the constant pain, the seemingly interminable incapacity, the sense of isolation resultant from that same invisible disability, or a more general existential angst? Perhaps it’s the combination, of all those things, that sets the tears flowing; for a while I teeter on the brink of self-pity and it proves a real struggle to regain my general positivity. [No sooner have the symptoms of a recent chronic bout of sleep disrupting sciatica receded than a case of TMJD (temporal mandibular joint dysfunction) takes pole position in the table of well-being assailants.]
I’ve always suspected that it’s much harder to witness and share the suffering of a loved one than it is to suffer oneself but, when one does suffer from any ailment, or dis-ease, the awareness that those who care for, and about you, somehow share your pain, intensifies the sense of spiritual suffering. The sufferer also feels guilty at imposing, on the one who loves and cares for them, some of the restrictions (on the socializing front) implicit in one’s own condition. I frequently find myself apologizing to my beloved for my, all too familiar, achingly fatigued condition, and the consequent wearyingly low stamina levels; it’s not that I blame myself for being ill but, to be honest, I’d prefer to be an enabler rather than a burden.

This posting is also on Mal's Murmurings.

Mal's new murmuring

Today's posting, ME and my shadow, can be found on 'Mal's Murmurings'.

'Tis better to arrive ... than having journeyed

After all the apprehension regarding a forthcoming journey, the whole experience is now behind me but, not without having once more vowed that I’ll never embark on such a venture again. Truth be told, the outward journey went reasonably smoothly as we journeyed via A1, M1, M42, M40, M25 & A24 from our abode to that of my brother on the South coast. The only little panic attack I suffered was during a break at Oxford Services; it was just so bustling with other travellers that it caused a bit of sensory overload on my part. Breathing exercises duly performed, I was soon ready to move on.

Shortly after we arrived, at our hosts, a delicious lasagne was appreciatively devoured by hosts and visitors alike. Food and wine throughout the visit was much appreciated. Both Helen and I were ready to retire au lit, during our stay, at an earlier hour than is our norm; the sea air seemed to be laced with knockout drops.

Of necessity, for me, life and the events / activities therein has always to be taken at a leisurely pace; I am far too well aware of the deleterious effects of overdoing it. Although I managed to do more during our weeks stay than would normally be my monthly quota, I found it impossible not to feel guilty when I couldn’t readily jump at the opportunity for further outings or activities. At times like that a sense of helplessness / hopelessness becomes overwhelming, until my beloved reminds me that a couple of years ago I wouldn’t have even been able to contemplate taking a trip anywhere; even routine visits to the hospital proved daunting at that time!

Visits to Littlehampton, the Wildfowl and Wetlands Trust at Arundel, and the Istanbul restaurant in Worthing were all experiences to be savoured but, the real highlight of our stay was a visit, on the Saturday, from my (nearly) four year old great-niece, with her Mum and Dad in tow. Apart from the delightful antics of Ruby herself, it was a real pleasure to see Dave and Jan in action as the doting grandparents.

The first panic attack of the return journey home occurred before I’d even got into the car and then, three loo stops were required before we’d even arrived at the M25. To my surprise, the journey went smoothly as soon as the major motorway part of our route was underway. No matter how much one may have enjoyed their stay away, there’s nothing quite matches that feeling of exhilaration at arriving home. I appreciate home at any time but, each return there (from whatever locale) is just the greatest feeling imaginable. For me, familiarity breeds content!