Fermentation and Percolation - Abdominal Joys

Wearied by humid heat, each minor task seems Herculean, even more so when it involves a trip into town. For many years now I’ve been unable to face travelling any distance but, it has become increasingly difficult to steel myself sufficiently for the very short journey into the town centre. Chauffeured by ma belle Helen it’s only a matter of 5 to 10 minutes in the car, but even that becomes quite arduous when the stifling heat seems to amplify the sensory overload of passing traffic and scurrying pedestrians both whilst journeying and on arrival at one’s goal.

Earlier this week I had to travel into town to collect my new glasses, of the spectacles not the drinking vessel kind; a short trip on a day when the heat proved overpowering to me. An additional problem, on this occasion, was a diarrhoeal flare up of my IBS. A quick visit to the toilets at the shopping mall found all cubicles temporarily “out of order”; the subsequent scurrying to a large store, and ride up the escalator, proved somewhat disconcerting as the whole abdominal area felt as if an excruciating fermentation or percolating  process was occurring.

Having reached the necessary facilities in the store both cubicles were occupied as I waited cross-legged and anxious for a unit to become available. As I’ve said before, visits into town are always a discomforting experience for yours truly but, this time, the humidity of the day alongside my turbulent abdominal spasms caused additional distress, on top of a familiar state of sensory overload.

It was really touch and go as to whether I managed to keep the appointment to try on and collect my new prescription eyewear. On the verge of a panic attack, I did manage to collect the optical item although I was more interested in getting back home than giving myself sufficient time to fully check that they were OK. Whether or not they proved satisfactory was of far less importance than the rest and facilities waiting for me at home.

The Stress of the Normal

So, five days after my birthday I was going to get around to spending /exchanging a couple of gift vouchers. My visits in to town are exceedingly rare, albeit just a few minutes drive (courtesy of ma belle chauffeuse) and scarcely longer via the regular bus service but, today, I had to be in town for an eye test in the early afternoon.

We quickly found a suitable free parking space and headed to the HMV shop, upstairs in the shopping mall. The layout of the store seemed rather random, to put it kindly, and the temperature in there felt more like a sauna and equally airless. Admittedly I was already freaked by the movement of people and traffic, albeit on a reasonably quiet afternoon for a town centre, and the rather bright lighting did little to alleviate my sensory overload.

I managed to find a CD that I’d noted down a few weeks ago, Joshua Redman “Still Dreaming” and also picked up a John Scofield / Pat Metheny album that complemented other CDs & vinyl in my jazz collection. In this same small section of the store I also picked up a cheap CD of Miles Davis ‘In a Silent Way’, my 1969 vinyl copy having been overlaid with a crackling surface after being overplayed on various turntables. Another album, Miles Davis ‘Bitches Brew Live’ performances from Newport Jazz Festival 1969 & Isle of Wight 1970 came at a very low price and was added to my basket. I couldn’t face up to any further searching around and felt an immense sense of relief to get out into the air.

A short amble through M & S demonstrated that it was possible to have a tolerably cool and airy sensation in a store, nor were their lights over bright. There followed a short walk down to the opticians in Boot’s store, where optician and optometrists promptly carried out the necessary tests. Last year the change in my vision was so slight it wasn’t worth replacing the current spectacles; on this occasion my right eye had become marginally more short-sighted and, there were early signs of cataracts developing in both eyes.

In retrospect, I realize that I shoudn’t have attempted to tackle more than one task during a visit to town; having spent much of my working life in or close to a town city centre, since 2003 I have rarely been into town more than a couple of times in any year. Any future purchases of CD, vinyl or DVDs will be done online.

GOOD TIMES - BAD TIMES - Strangely NORMAL TIMES

Wrists in strong supports, left hand clasped tightly in armpit by right upper arm, right hand grasping left shoulder, upper left arm clasped tightly to side, and I want to scream. The nagging aching pain and discomfort little eased by 100mg of tramadol swallowed a couple of hours ago.

Everything felt fine when I decided to move from reclining to upright posture, but then just switching on laptop and tapping a few keys was sufficient to bring back the heavily aching nausea-inducing pain in the upper arms; the sensation not too dissimilar to a state of total exhaustion when one is prohibited from rest or sleep.

When lying down a throbbing ache envelops my knees; bending knees to make a tent under my shrouding fleece temporarily alleviates the gnawing knee pain. Next it’s the toes that are the problem, a sudden burning sensation in lower digits all too swiftly feels as if my skin is being grated by the restraining pressure of what are usually quite normal socks. This latter item swiftly becomes an instrument of torture and, their removal does little to relieve the sting.

It’s beginning to feel like some sort of punishment as atonement for having two reasonably good days. On Friday I finally managed to visit the opticians, first time I’ve managed that since 2003, previous attempts having been thwarted by sensory overload and/or panic attacks. I t really felt like quite an achievement to have undergone a range of tests by both optometrist and optician. The optometrist was genuinely interested to learn a little about ME (and my denouncing of the wastebin CFS diagnoses) and really put me at ease.

Fired up by this amazing achievement, next day I decided to attend to one of my problem PC’s that I hadn’t touched since September. No amount of online research (and subsequent application) resolved the issues that had thwarted my efforts last year. There was nothing for it other than fresh installation of Win 7 and countless updates to be applied.

By mid to late evening I was quite shatteredly exhausted but, having go to bed sleep proved extremely elusive. Illusory sleep turned out to be the lesser nocturnal oppression. Wrists, elbows, lymph nodes, and lower digits screamed out for attention. Tubular bandages over elbows and much of the arms, elasticated metal spined wrist supports offered little in the way of pain and discomfort relief and, the burning flayed skin of the toes screamed out in accompaniment to my expletive laden vocalising. An application of moisturiser to feet and toes proffered temporary alleviation but, I’m not sure whether it was the emollient or the massaging effect of its application that provided this relief. This procedure was repeated several times during the course of the next couple of hours.

 By 11.19 this morning I reluctantly emerged from the duvet lair only marginally less exhausted than the previous late evening. What of today? You may well ask! The first paragraph describes some of my afternoon.

Hopefully - just a little phase I'm going through!

I really hate that sudden feeling of confusion, an un-preparedness to pursue that task or goal which, only a few moments before, you knew you were fully capable of fulfilling. It's not even anything out of the usual, perhaps even part of a regular routine, that suddenly becomes daunting. Even one's thoughts seem to be jumbled up, impossible to decipher. 

Quite a while since I last experienced that but, yesterday, it suddenly hit me and I can't even remember what the task was that I either completed or cancelled. At lunch-time today it seemed more like a panic attack as I began preparation for this evenings meal; I'm rather pleased with myself that I was able to continue despite a sense of emotional exhaustion.

Glands, at side of my neck and under my chin, have been feeling a kind of sharp bruised tenderness for a couple of days now whilst my eyes have reacted with extreme sensitivity, spasmodically and hopefully very temporarily, towards any light source -  a kind of sensory overload. Sudden waves of overwhelming exhaustion, as if something's achingly gnawing through my bones as well as muscles, serve to remind me of my quite routine state of being for months at a time during the past decade.

The bright side is that it has made me feel most grateful for a fairly sustained run of reasonably good days. I'm just hoping and praying that I'm not heading for a total relapse.

the impossible is slightly difficult

Some things are just so difficult to explain that one just goes on with life, as best one can, unable to share their "different" experience of "normal" everyday activities. Some chronic conditions, even in their relatively moderate forms, can have the most devastating impact in terms of isolation; the combination of pain, sensory-overload - both auditory and visual (and the accompanying agitation and frustration) as well as an excruciating fatigue (caused by unrefreshing sleep patterns) are quite simply impossible to explain to anyone who has not been there and, together, they conspire to prevent much normal socializing!

Even when the worst symptoms are in some kind of remission, my coping mechanism has hardly returned to it's pre-illness state. There are times when, on a social outing, one feels they are going to explode in response to the immediate environmental activity - be it talking, music, lighting, or quite simply the presence of too many other bodies - then comes the difficult task of making one's "excuse" to depart early from the event.

Frequently I notice concerts, gigs, exhibitions etc that I'd like to attend but, I feel unable to pre-book ( even in my current reasonably well phase) as I'm never sure whether I will have the necessary physical and/or emotional stamina to cope come the day! Even when there's no requirement to pre-book, if an admission fee is involved it always seems an incredibly extravagant outlay bearing in mind that, in all likelihood, I will be ready to leave (unable to stay the course) whilst the event is still in progress. At the recent farewell party for the local vicar, it was amazing to be able to sustain concentration for that part of the entertainment I managed to cope with. My recent visit to Liverpool was a different experience altogether when I wasn't "up to" attending any of the exhibitions I hoped to see, or even dining out at a restaurant in close proximity to the inn where we were staying.

I am blessed in obtaining so much satisfaction from spending time in the garden, watching the avian activity, taking photos and videos etc., playing about on the PC, painting and writing as and when urge and stamina are in sync. I've become, in the process a contented homebird! On many occasions I'm able to manage a short walk but, even that activity has its own little idiosyncracies. This afternoon I took a little walk, at a somewhat slower pace than my recent norm; as I tried to speed up it seemed as if the lower limbs hydraulics were in serious need of an oil change; each movement required a conscious effort, as if I was required to lift my feet from some kind of cloying quicksand. And that was on, what had earlier seemed, a "better" day.

I have no desire to be a Moaning Minnie, it's just that I wanted to try and share something of that which I deemed, at the outset, to be impossible.