memo to myself and others re chronic illness

I've just been reminded, once again, by a friend's misunderstanding whilst communicating via Messenger, of how much one loses when living with a chronic illness - in my case moderate ME (myalgic encephalomyelitis). 

What they had failed to understand is how impossible it proves / has proved to plan any events ahead. Even a meal out locally, with my beloved, can only be cofirmed at last minute and, even so, is an extremely rare occurrence. I have lost contact with most of those I had considered "friends" prior to succumbing to this illness, almost 15 years ago, and have had to rely, to a large extent on the proverbial mountain coming to me.

Going Viral - a random note

Just gotta be honest; as I feel at the moment I don’t want to see of hear any reports of any text, video or image going viral. Since the end of last week I’ve been the victim of something viral, albeit of a gastro- intestinal variety. The diaorrheal component began last Saturday evening and by Sunday had become quite chronic; this symptom remained constant throughout Monday and Tuesday, without regard for my having substituted modest amounts of plain food (and avoidance of caffeine) in place of real food, alongside doses of loperamide / immodium.

In the early hours of Wednesday morning, four urgent visits to the loo were necessitated prior to 04.30hrs, so a further dose of loperamide was required. Miracle of miracles, no further visits to the aforementioned loo were required, other than false alarms, before a further twenty-six hours had elapsed (06.30hrs on Thursday morning) and things seemed to have normalised. A cause for rejoicing, albeit of short duration; by 11.30hrs the old enemy had returned.

I trust my friends will avoid mention of things “going viral” when in my presence!

just the start of another normal day

Where to start; how to define; what words can be used to describe another normal day. I wish to God I understood what is a normal day? Even my days, curbed by health restraints, proffer plenty of variety in terms of food ate, music listened to, DVD’s  viewed, even times of dining may vary, yet somehow they seem to belong to what could be considered a normal day.

This morning I arose from the duvet realm shortly after 10.00hrs, earlier than some but not much later than most days. Even before I left the bed, a throbbing ache in the sides of both knees caused a little discomfort which, strangely, felt like a painful hollowness between upper and lower components of the lower limbs. Nothing unusual there, apart from the degree of ache and discomfort, for this time of day; a mug of coffee and a bowl of cereal were definitely needed. Of course Piper, our beloved hound, greeted me with tail and rear portions wag and sway as he carefully directed me towards his doggy treat store.

So far so good, it’s just another normal day. Having breakfasted I settle down to read the tabloid-sized i-newspaper for fifteen minutes or so before acing wrists cried enough. After a little doing-nothing break, switched on my android tablet, for a cursory visit to twitter-land and newspaper summaries, surfing for about twenty minutes. Another caffeine intake required to keep me awake, followed by a further few minutes with the i-newspaper, only to have a discomforting sensation, tenderness of the lymph nodes, in the armpits. Time to move to the larger sofa, put my legs up and allow the music from radio 3 to wash over me; Piper swiftly leapt over my lower limbs to snuggle beside me.

Not many restful minutes passed before a throbbing discomfort in my toes demanded I put  some pressure on the soles and arches of my feet to somehow eliminate the toe-tingling sensation. Next, almost as a matter of routine, pains from the armpit had extended a nauseating discomfort to whole of upper limbs.

Yeah, I suppose it is just another normal day; shortly after 13.00hrs my first resort to painkillers (tramadol 2x 50 mg) since late yesterday evening (on that occasion alongside amitriptyline) as I prepared for my return to the bed zone. Of course by this time I have recourse to my usual pre-meal medication as I anticipate a little lunch-time bite to eat.

Amazing how hard one has to work in order to be busy doing nothing; for now I revel in the music zone, forget my minor worldly woes. For music, love and life, I give thanks. Just the start of another normal day!

ACHES and GAINS

Just when you think you’ve recovered from the roller-coaster ride, a sudden smack of reality makes you realize that you’ve stepped onto the ferris wheel and this time it’s supercharged. Stomach and oesophagus have never felt so close, a moderate underlying nausea takes on a more prominent role. The head feels giddy as if too much time has been spent on the ‘waltzer’, and knees, ankles and elbows throb as if stray balls from the coconut shy have found fresh targets.

You’ve maybe guessed it, I’m talking payback; a reasonable period of (partial) remission had almost persuaded me that life had been restored to normality. As I’m now into the fifteenth year since my collapse, succumbing to ME (myalgic encephalomyelitis), one would think I’d know better than to miscalculate my reserves of stamina. I’m not talking of any undue exertion, just twenty minutes of mowing the lawn with an electric powered mower seems to have knocked me back. Mind you, this additional exertion came at a time when I’m just coming to the end of a course of antibiotics and antimicrobials.

These additional medications had been prescribed as a result of a visit to A&E at the district hospital last Thursday evening, following a flare-up of diverticulitis (and probably gall bladder as well). There have been many occasions recently when I’ve felt as if my moderate ME had turned to a milder form but then, brainfog, alongside excruciating discomfort in upper and lower limbs, and nagging pains variably dispersed around the torso, randomly exert their authority.

Putting those ailments aside, I am fortunate that I am still able to enjoy listening to a wide range of music (via CD, radio and vinyl sources) and am generally able to accompany Piper (our beagle – podenco  rescue dog) and my beloved OH Helen on short evening walks. A few years ago there were occasions when it seemed / felt like an effort too far]just to walk the few yards to the corner of our road. I really miss it when I’m not able to manage these short walks but the love and attention, received and given, by Piper compensates more than a little, and I’m still amazed at the therapeutic value of this charismatic canine.

An additional source of joy is provided by not infrequent visits from our grandson Alexander, now in his ninth month of bringing and receiving an abundance of smiles to the house. Piper is intrigued by Alexander, even though he’s never sure of how to take the infant’s reciprocal interest; the boy stretches out to feel / stroke Piper but has already managed to grab his tail on one occasion as well as being drawn to his ears (always a sensitive part of the pooch’s anatomy).