ME

ME

Thursday, June 02, 2016

Shatteredness Conundrum

A SHATTEREDNESS CONUNDRUM


It's not so much the chicken and the egg as the pain or the tiredness.

Does weariness simply allow a latent pain to exaggerate it's presence or, is it the tired bodies vulnerability that allows a deep pain and discomfort to take hold? Today, a day of only minimal exertion, a sudden onset overwhelming sense of fatigue was swiftly subsumed into an entangling, nerve jangling, multiplicity of pains.

These acute pains, not the overly familiar dull aching wearying variety, swiftly took hold in ankles, knees, armpits and wrists.  The intense discomfort resulted in a sudden welling up, and gushing forth of tears; tears of frustration and, temporarily, despair.

I hate to take my pain medication other than when it's absolutely necessary although, I'm coming back to the notion that I should take the occasional pre-emptive dose as well. The problem then arises as to how I discern whether a lower or negligible level of pain is the result of this pre-emptive strike or, could it simply be a normal spasmodic reduction in pain level.

Wednesday, June 01, 2016

Garden Aspects








I always feel at peace with the world when I step out into our garden -
sometimes I even forget the copious nagging ailments 
that play such a (largely negative) part in my daily experience

****************
there are more snapshots - Apple Blossom Time chez nous - on Mal's Murmurings

Friday, May 20, 2016

restorative nature




Sitting in the summerhouse, listening to a trill (I could say a thrill) of tweets, croaks, piped and fulsome whistling song of the birds; all seems right with the world. This, after a most reluctant transformation from bed-dweller, lacking in self-affirmation, to house and garden roamer, seems nothing short of a miracle. Yesterdays emotions took quite a heavy toll on my preparedness for the new day and, indeed, little short of an overwhelming terrified sense of aloneness.

Performance of the most simple task began to feel like an insurmountable obstacle, but just as a (claustrophobic) fear of utilizing the new shower room can most likely be resolved by changing the door to open outwards rather than inwards, there are no doubt obvious solutions to other fears which, in any case, are not problems when my reserves of physical & emotional stamina are at their normal restricted plateau.


Anyway, the abundance of birdsong proffers a temporary renewal, and I enjoy watching the avian visitors to our various feeding stations. Lots of starlings from fledgling to mature, a goodly number of blackbirds and house sparrows, the occasional goldfinch and, this morning (a first for many months) a bullfinch, are among today’s visitors At least the feathered community travel to me; the only effort required from yours truly is to open my ears and eyes.

Thursday, May 19, 2016

The Guilt of a Spoonie Wimp





Convulsive weeping, the pattern of my day; a sense of failure, weakness or betrayal, none of it makes sense! After weeks of feeling further under par, a decision to increase my dose of amitriptylene (up to now used to deal with some nocturnal discomfort) towards an anti-depressant level just made me feel worse. Persistent headache, intensified abdominal bloating & discomfort, loss of appetite (difficulty swallowing even), postural hypotension alongside a more general dizziness, all seemed to coincide with the increased dosage.

Recent weeks had seen a marked increase in my stress levels, as work on the new extension kitchen, dining room, and walk-in shower, dominated my conscious awareness of every day-time, and the added confusion of life in total disarray in other parts of the house proved more burdensome than either of us had anticipated.

Sleep and pain patterns have become even more erratic than usual but then, always at the back of my mind was a proposed visit to Worthing to celebrate the Golden Wedding Anniversary of my brother & sister in law, Dave & Janet. Having plucked up courage to book an hotel room, sometime last week, for a four night stay, the imminence of the travel became more real but, I felt the special nature of the occasion would somehow enable me to carry it through.

Today was to have been the day of travel (more like travail) – a journey of approx 6 hours duration – but although the car was packed with our case and rucksack, necessary medications having been packed last evening, the event was not to be. At present even the five to ten minute journey into town can seem like an arduous expedition so, I should have realized that this event was not to be. First mistake was removing myself from the duvet lair, after an all too familiar restless night, over an hour earlier than is my norm.

Wham, the enormity of the proposed venture hit home with pile-driver force; I would love to have been there for the celebrations but, my own wimpish nature resisted the travail. That’s when the tears got into full flow, a deep rooted feeling that I was really betraying my brother & sister-in-law, I began to wish I didn’t love them, that would have made it far easier to turn down the invitation. The vicious circle followed – yes, I should make the journey, no matter the deleterious effects that may have – no, I’d be foolish to travel but, that’s letting my brother down.

Sadly, the journey is not taking place, the sense of guilt weighs heavily. 

Sunday, April 24, 2016

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?    

Wednesday, March 30, 2016

The Common Cold - A Rare Event (an accidental posting)


Life goes on, recurrence of the old familiar aches, pains and dysfunctions (primarily ME related) nag me into acknowledgment of my presence in the material world. Don't get me wrong, whatever  ailments are thrown my way I still manage a smile, a laugh and, dare I say it, pure enjoyment and delight in the presence of my beloved.

The last few days I've been quite knocked out by a quite severe cold and, who knows, this may be a good sign - fingers crossed for the moment but I won't hold my breath; last time I had a real cold was best part of thirteen years ago. In 2003, a cold or flu-like symptoms seemed to accompany my every day, never materializing as a full-blown anything. Two thousand and three was also the year of my major collapse leading to an eventual ME diagnosis; in the meantime, whatever discomforts and anguish I've been heir to, a full blown cold has eluded me.

Actually I had no intention of writing a full post, just wanted to say that I've posted a brand new poem (both text only and illustrated version) on my Mal's Factory poetry weblog. It very much reflects the present ambience in which I have my being.

Link: http://malsfactory.blogspot.co.uk/2016/03/twice-removed.html

Wednesday, March 02, 2016

A SLOW SLIDES JOURNEY INTO DAYMARE

A SLOW SLIDES JOURNEY INTO DAYMARE

Today would be best forgotten but, it’s my failure that I find it hard to forget, just as I find it almost insurmountably difficult to forgive. Much of today’s problems, other than the generally ongoing ME related ailments, emanate from the inappropriate prescribing by a certain medical professional. That GP I am unable to forgive.

This morning I was forced to emerge, from the duvet lair, a good
1 ¾  hrs earlier than is my norm, to keep a previously postponed appointment at the hospital’s orthoptics department. The morning, apart from my unearthly hours emergence into the day, was also greeted with a quite heavy snowfall.

Anyone who knows me, at all well, is all too aware of my difficulty with travel of any kind and, this morning’s short journey, following the main roads rather than our usual shortcuts, was one of following and being followed by skidding and stalling vehicles.  This was just like living through a nightmare for my sensitivities. At one point, even my beloved chauffeuse thought we’d maybe have to call the hospital to cancel the appointment, this time at much shorter notice. In spite of prior weather warnings of snowfall the responsible(!) authorities hadn’t bothered to grit the roads.

Whilst my beloved queued, waiting to access the hospital’s car park, I made my way to the relevant department. As I looked for the right place I wandered past the turning, having been told it was to the left, by a volunteer near reception, whereas it was actually to the right. Having ambled along the corridor a notice clearly stated that patients for Visual Fields Test should take a seat “here”, which I duly obeyed. Several minutes later a couple of hospital staff ambled by and asked if I was alright; I in turn informed them that I was waiting for the visual field test. Evidently I should have first reported to a reception staton some twenty to thirty yards further along the corridor.

By this time I urgently needed the loo, and had a bout of re-active diarrhoea, before entering the surgery. The clinician was quite concerned that my head felt so hot, and I explained how this wasn’t unusual as I could sweat in a freezing environment, my body thermostat being shattered / wildly erratic ever since succumbing to ME.

About halfway through the tests on my first eye I required a break as my chin and forehead were so uncomfortable, and I needed a drink of water before I continued. No sooner was the patch transferred to the other eye, and appropriate lens in place than I became quite headachy and totally incapable of concentrating as all spun around me. I informed the clinician that I wasn’t able to continue the test and also cancelled and discharged myself from tomorrows appointment with ophthalmology.


I simply cannot cope with early hours or concentrated attention. The appointments would not, in any case, have been necessary had my GP not messed haphazardly with my medication. [Earlier postings have already dealt with this situation]


Tuesday, February 23, 2016

Tuesday, February 16, 2016

REALLY THE armPITS


My status on Facebook, posted early evening yesterday, read as follows:


“Much of yesterday went far beyond the Gethsemane experience, more towards identity with the flaying on that early Friday morning. Just as one form of deep discomfort, of a tear and nausea inducng variety, seemed to be easing, elsewhere along the ley line of the nervous system came a sensation of searing tongs being applied to sundry areas of the upper limbs & armpits.

Application of supports (wrist, shoulder, back etc.) at times preceded a necessity to discard oppressive items of clothing, such as socks, cardigan, shirts. A necessity to spread out one's fingers, their proximity to each other promoting a tingling dis-ease, was accompanied at times by a the need to clench upper arms in an almost impossible tightness to the torso, aided at times by having a scarf strapping them down. Lower limbs flexed and turned - so much so that I became unsure about how many of the positions were consciously attained as opposed to a rather sustained involuntary spasm. it seemed as if painkillers were refusing to act as burning searing discomfort imprisoned me for much of the late afternoon and evening.

That was yesterday. Today is a better day thus far. Really enjoyed the House Group / Bible Study chez nous this afternoon. A wonderful time of fellowship.”



Sadly, it was only a matter of a couple of hours before the torment returned. Even picking up the small tablet pc or a newspaper, instantly caused a gnawing discomfort in wrists and armpits and, clasping upper arms tightly to torso did little to alleviate the onset of a nausea sensation. I remained grateful for those afternoon hours of relative ease, hanging on to the gratitude response by way of compensation for the fresh onset of dis-ease.

Last night (from at least 02.30 this am) I had one of the most sustained periods of sound sleep than I’d experienced in more months than I can remember;  that certainly seemed a good omen for the belatedly entered new day. The sense of being enfleshed in an undersized skin soon returned and much wrist-strapping, arm clenching (tightly to torso) was required. As ailments seemed to ease, my beloved and I ventured out for a meal at the local eatery, a    pre-emptive celebration for our upcoming anniversary. It seemed a good opportunity to dine out, as on both Thursday and Friday I have hospital appointments to attend at around the apposite time, and other arrangements already in hand for tomorrow.

No sooner had we been seated at a suitable table than the act of holding a simple menu card released discomfort in the armpits and upper limbs. I just wanted to scream out loud, take off jumper and shirt before clasping shoulders with both hands –  arms crossed in St Andrew’s fashion.  This particular treat was not to be, so we returned home to catch up on a TV programme (‘Trapped’) that we’d missed on Saturday. At least at home I could clasp myself tightly, whilst sitting shirtless with arms firmly at attention. Meanwhile
 I sought out my toe separators to place between discomforted / discomforting fingers in  a vain attempt to eliminate bouts of nausea.

Armpits seem to serve solely to alienate me from my body at present but, hopefully. a fresh dose of tramadol will eliminate the still too pervasive pain.