A Fruitful Misery

Seems like I have a permanent ticket for a roller-coaster ride, not that I particularly requested or enjoy the experience! The journey involves states of physical and emotional health, by which I mean health shortcomings.Just as I’m getting used to feeling a dose of well-being, random pains and discomfort have a habit of leaping out to chastise me; whatever task I’m managing at that particular time, a throbbing burning pain in wrists, a sharper pain in elbows or, the nagging hollow bruised, nausea inducing, discomfort in the armpits strikes, calling an immediate halt to whatever activity is in process. (By activity I mean something akin to reading a newspaper or magazine, or maybe surfing the web on tablet or laptop: it is indeed only on very rare occasions that any of these activities are permitted as prolonged a period as thirty-minutes!). An added joy is the Damoclean sword of permanently imminent, frequently occurring, gullet, stomach and colon flare-ups.

More recently, the familiar neurological ailments have been partnered with an unrelated depressive anxiety. Some days I find myself in sudden floods of tears, concerning love, beauty and transience, fearing being alone and upset at the brevity of human life, especially as I’m now in my mid-seventies and, have become increasingly in awe at the amazing interdependence of everything in the whole cycle of life and, that nothing is wasted in nature’s economy. The primary cause of my current bout of anxiety is related to concern about my beloved OH’s impending aortic heart valve replacement operation. The operation will be of four hours duration, followed by a couple of days in cardiac intensive care then, four or five more days in the hospital.

This will be the longest period that we have been apart since our wedding over nineteen years ago. Apart from being my wife, lover, companion, confidant and chauffeur, she has increasingly become my carer. Whilst she’s in the hospital I won’t be able to visit her, owing to travelling involved. Since the onset of my chronic illness (moderate Myalgic Encephalomyelitis) even the, less than two mile, trip into town can prove emotionally and physically overwhelming, but ma belle will be in a neighbouring city some eighteen miles away. My (step-)daughters have offered to take me but, the prospect of such a journey makes me realize that I’d be in no fit state to be a bedside visitor (as I’d have to anticipate the ordeal of the return run).

A sizeable bleeding rodent ulcer (presumed basal cell carcinoma) has in recent weeks become an additional irritant and, I will shortly be attending an appointment in the dermatology dept of the District Hospital. Oh, what joys we are all heir too!

Of Resting and Sleeplessness – postlude to Stress of the Normal

Come early evening and tiredness verging on exhaustion takes passing hold of me but, as a notoriously bad sleeper, I hoped not to drift off at such an early hour. Of course resting / relaxation, in the form of a movie, was the order of the evening; my usual evening entails the playing of CDs and / or DVDs at some point, rarely anything too taxing on my limited resource of stamina. Admission time; I did sleep through some of the movie but, come the time when my beloved was ready for bed I was feeling wide awake. I wonder if my readers will understand the sensation of being simultaneously wide-awake and yet 95% drained of energy both physically and emotionally.

You will have noted that as I headed to the bedroom, to join my beloved, the signs were not exactly propitious. Those forebodings were proved correct! As I prepared for bed a generalised sense of discomfort / dis-ease overwhelmed me and, the night turned out to be one of tears, screams and bellowed expletives.

Restless legs took control after an initial burning sensation of sore tenderness took control of my toes, and that alongside of a tortuous throbbing ache in both knees and hips. Within a short time, a tenderness of the armpits lymph nodes began to rage alongside screaming aches in elbows and wrists. My mind seemed to be preoccupied with a relentless darkness as I sought for comfort and rest.

The darkness of the room created an overwhelming sense of isolation, in spite of the fact that my beloved was soundly sleeping beside me, almost oblivious to my cries to and against the Almighty as I tossed, turned and struggled to find a state of composure. The blessed, albeit temporary, release of sleep took many hours to attend to my needs.

Another day of rest is desperately sought and, I little care whether it’s opioid, prayer, or straightforward Mother Nature assisted.

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.

Just A ... Day

The day started with a generalized non-specific ache, nothing major this time, aching rather than painfully discomforted. Part and parcel of these aches is a sensation as if an arterial infusion has embalmed one into a state of physical, spiritual and emotional shatteredness, a temporary shutting down of any apparent future light. I manage to upset my beloved OH as a result of my wimp inspired tetchiness, a fear of being alone, a fear of physical collapse.

As the day went on, utilizing a 7" tablet pc seemed to put too much stress on my arms; an ache in the elbows transmogrified into a sensation of bruised tenderness in the armpits and down the inside of both upper arms. The application of tubular bandage and elasticated support to the elbows seemed to alleviate the most nausea-inducing element of the discomfort although, by this time I was already donning knee-supports in preparation for the dog's evening walk.

Add a touch of IBS and a throbbing headache to the equation, and what do we have? Just a(nother) perfect day.

out of the kitchen and missing the heat

Although each hour, of each day, may seem to drag at present, it still amazes me how swiftly each year seems to pass. Most of the time each day has seemed to pass far to quickly, no sooner is one getting into it’s swing than tiredness sets in; gosh, I’m sounding like a real Grinch today.

The (current) absence of not only a functioning kitchen, but even sans kitchen sink, or even a single gas or electric hob, just seems to leave a hollow at the core of my being. Who would have thought that once, not too many years ago, I subsisted on a diet of predominantly microwaveable (so-called) meals; even in recent days, the cooking bug having for some time since had a hold of me, preparation has felt at times a chore too far, only reluctantly pursued. No working kitchen and an echoing void of proposed kitchen diner exuding its presence into the lounge, leaves one feeling achingly hollow.

I am indeed fortunate to have a roof over my head, a partner to love and be loved by, yet still I find temporary inconvenience a source of veering close to a state of reactive depression. It would be easy, of course, to blame my dispiritedness on my permanent condition of aches, pains, disorientation and unrefreshing sleep, which admittedly doesn’t help, but then I feel overwhelmed by guilt at my self pity. In a land where the government is determined to punish the poor, the  vulnerable and disabled in response to a crisis caused by their banker friends, what right have I to feel at all sorry for myself?    

A Further Post Script to previous post

This post is a further postscript to 

FRUSTRATIONS of a Medical and Medicinal Kind

 as someone who has been taking amitriptyline at night for more than a couple of years it's a good job that I thoroughly read the Patient Information Leaflet! To replace amitriptyline and a low dose of sertraline my GP has prescribed a drug (which I'm supposed to start immediately) which explicitly states that one "should not take Trazodone if I've taken amitriptylene within the last two weeks".

It also states special care should be taken if "your age is above 65years, as you may be more prone to side effects" and "take special care if you suffer from conditions like abdominal pain, muscle weakness, mental confusion"

I am 71yrs 7months of age, and suffer intermittently with abdominal pains and muscle weakness as part of my general state of unwell-being (ME). Even mental confusion was present not long after I first succumbed to ME at the end of 2003.

FRUSTRATIONS of a Medical and Medicinal Kind

This post also appears on 'Mal's Murmurings' under the title 'CONSULTATION FRUSTRATION'

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It shouldn’t really be like this; anger and despair turn out to be the result of a visit to the GP. Having finally yielded to my beloved’s advice, I got around to arranging an appointment with my local doctors practice. My reluctance to make this appointment is the knowledge that they’re only equipped, or allowed the time, to deal with a specific singular ailment, not a complex multiplicity or whole people.

First annoyance came when he (being the doctor) stated that the medications I was on had a tendency to conflict / counteract each other to some degree. Considering the length of time I’ve been on this assortment of potentially self-conflicting cocktails, I begin to wonder why the practice had been oblivious to this over the course of the past couple of years.

When conflicting advice, between medics in the same practice, as to whether certain meds should be used pre-emptively or only when absolutely necessary, adds a further quandary for the patient as to the efficacy of using the practice at all.

Anyway, a couple of the prescribed medications are no longer to be used; they are replaced by a single different medication. Worrying for me is the following statement, on the Patient Information leaflet:

 take special care if you:

suffer from conditions like abdominal pain, muscle weakness, mental confusion.

[there are times – regularly for the first two, occasional for the latter - when I can tick all those boxes]

The doctor further suggested that I should use co-codamol instead of tramadol, even though I’d had to stop using co-codamol, because of the effect it was having on various abdominal organs, a few years back. Tramadol, thankfully, remains on my prescription.

Next came the little prep talk suggesting Graded Exercise Therapy would help, even performing the same limited exercise on ‘bad’ as well as ‘good’ days. Obviously he has no understanding of what a PwME’s (even moderately so) ‘bad’ day is like. I explained that even the visit to the opticians, a limited amount of exercise involved, was sufficient to cause payback, his response was that obviously was too much exertion!

Well, it seems that I’ll have to stick with my own pacing regimen which essentially curtails any exertion on bad days and, ensuring that I always have some spoons in reserve when I exercise on good days.

The preceding events, at least their physical & mental toll, necessitate a temporary postponement of my visit to hospital for further blood tests

I’m quite proud of myself for refraining from the use of expletives during this little rant; expletives remain in my personal domestic space for the time being

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Malcolm Evison doctor even told me that there's no connection between overload of pain stimuli and the corresponding nausea that I experience !!!