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).

Gratitude for the NHS

Saturday and Sunday I still felt somewhat shocked and shaken, by the fall I had on Friday evening, as full sensation and feeling hadn’t yet returned to my right foot and ankle. As I stood up it still felt as though I had a spongy platform sole on that foot.

My beloved rang my GPs surgery first thing on Monday morning and, she explained to them what the paramedics recommended, so the Wednesday appointment offered wasn’t soon enough. About half-an-hour after that, a practice nurse ‘phoned me back and, when I explained the situation, I was soon granted an appointment with Dr Desha at 12.40pm. Although there was a delay before getting in to see the doctor she was extremely thorough in her examination of me, blood pressure, reflex, touch, response to hot & cold in the foot etc. She prescribed 4 dispersible aspirin to be taken immediately, Clopidogrel and Amlodipine, to be taken each morning, to deal with my high blood pressure, and prepared a referral to the TIA clinic at Harrogate District Hospital.

As the time was getting close to that for the House Group / Bible Study chez nous, my beloved left me waiting for my prescription at the local pharmacy whilst she went home for the car to collect one of the attendees at our meeting. Sat in the over-chilled air conditioned pharmacy I suddenly felt quite shaky and weepy. The pharmacist kindly phoned my beloved to see if she would bring the car around to collect me.

The house group had already started in the meantime and I was eager to participate rather than sit on my own, feeling broodingly sorry for myself. Around 3.00pm, mid-way through the meeting, the ‘phone rang and, it was the hospital informing me that I had an appointment at the TIA clinic at 10.00am Tuesday.

Next morning I saw Dr Brotheridge at the clinic and, as the symptoms had not completely cleared within 24 hours it couldn’t be classed as a TIA but was likely some kind of minor stroke. Within an hour I’d had a CT brain scan done and, on returning to the clinic he informed me there was no sign of a bleed and the brain looked normal and healthy. He also said that the medication my GP had prescribed was exactly right and he would expect me to remain on that. Meanwhile an appointment was made for me to have an ultrasound of my Carotid and Aortic arteries at 1.00pm; this left time for ma belle chauffeuse and I to pop home for a cuppa and a snack, but before that we had time to go for some blood tests which my GP had requested.

The attention given, and the efficiency, in each department was really special.

Eyewitness - Timeline - Headchange

This post also appears on Mal's Murmurings :

Eyewitness – Timeline – Headchange

150116 –  15.50hrs Attended Boots Optician for a (routine) eye test, reassuringly thorough, and made to feel at ease by optometrist, optician and all staff.

190116 Told to stop taking amitriptyline, usually taken at night, and sertraline, usually taken AM, with immediate effect. This was to be replaced immediately with trazodone, to be taken at night. When reading, as the pack advised, the enclosed Patient Information Leaflet it advised that one should not take trazodone if they have taken amitiptyline in the preceding fortnight!

As doctors, at surgery, were not forthcoming with a response to my concern, I quit amitrip and sertr. cold turkey, without taking the disputed new medication!

More details of these events can be found on my blog posts of 19, 29 and 25 January.

250116 Went to collect new spectacles from opticians – whilst en route to the opticians a most disconcerting sudden onset of a problem with my left eye occurred, A large floater, in the form of a black ring pirouetted through a full 360 degrees, dancing about and intermittently shooting at supersonic speed to a position several feet beyond my right side. My arms felt impelled to reach out to grasp this illusory element.

A few tests were carried out by the staff at the opticians but eye health seemed pretty good. I duly tried out and collevted the new spectacles.

020216 – took first dose of trazodone @22.20hrs

050216 – 12.30hrs fwd. Dramatically sudden decrease of vision occurred in left eye, an intensifying blurry veil stopping just short of total blindness, and a deep throbbing pain behind and surrounding the eye socket. When my beloved arrived home about 14.40hrs she immediately saw the need to drive me to the opticians pronto.

Both the opticians and optometrist carried out further thorough tests and scans, noticing a marked deterioration in my vision compared to my prescription of 15 January. The scans didn't reveal any damage or tears but, they made an appointment for me at Harrogate District Hospital Eye Clinic for 12.00 noon the next day.

By 23.00 hours my vision had improved significantly.

060216 – 12.00hrs attended Eye Clinic. Further tests and scans were performed before I went in to see the clinic's Consultant. After further tests, whilst I attempted to describe the experience, she gave a diagnosis of 'ocular migraine',(although typical episodes tend to disperse much more quickly than was the case for me!)

I subsequently discovered that anitriptylene has (not infrequently) been prescribed as a preventative for ocular migraine!

Perhaps if I'd remained on amitriptyline the ocular migraine would have been postponed. Alternatively, these events may have occurred nuch sooner had I never been prescribed the drug (to assist with night pain alongside tramadol)!

080216 – A severe overwhlming headache, cheek ache, eye ache persisted for much of the day, accompanied by giddiness and nausea.

Every day since commencing with trazodone(on 2 February) I've emerged into the day with a throbbing headache and in a stateveering towards total collapse – accompanied by a grey pallor.


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PS after posting this blog, a friend, with considerable medical experience, was chatting with me on Skype - he happened to mention that 'blurred vision' was a known side effect of trazadone! He was also well aware of contra-indication re amitiptyline / trazodone.

General Practitioners may be Bad for one’s emotional Health

General Practitioners may be Bad for one’s emotional Health!

Seven days ago my Patient Information Leaflet saga began and, on this the seventh day, I received an early morning telephonic communication from the medical practice. Once again it was a receptionist making the call and she duly read out a (quite lengthy) statement from the prescribing doctor declaring his infallibility. It actually stated that he was well aware of side-effect and contra-indications but as he was prescribing a very low dose (100mg when the capsules are made in only 50 & 100mg); I would have considered 50mg to be very low dose in this instance.

My primary concern was the positive declaration that one should not take this medication if they’ve taken the specific medication I was on within the last two weeks. Of course being some sort of God the GP obviously didn’t feel it was worthwhile to deal with this specific.

Of course it was said that I could arrange an appointment with said doctor to discuss the issue but, what’s the point of consulting a GP who offhandedly (as witnessed by my wife who sat in on the appointment) ignores anything the patient says if it doesn’t suit his agenda? In any case it always takes ages to get an appointment. Although I had been quite prepared to start taking the new medication two weeks after having taken the last dose of the previously prescribed ones, this wasn’t presented as an option so I now have misgivings about taking it at all, which as the receptionist says “that’s the patient’s prerogative”.

I can only assume that patients are supposed to ignore Patient Information leaflets, as they may prove challenging to the GPs’ omniscience. 

MEDICATIONS Mess Up - Contra-indications

The two previous posts refer to this same topic! I suppose this is simply an update.

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MEDICATIONS: Current state of play. I've now stopped taking both amitriptyline and sertraline ('cold turkey' as followed GP's advice to return unused ones to pharmacy - that was before I'd read the leaflet with the Trazadone that he recommended I started that evening) but am not taking Trazodone.

My beloved OH visited my GP's surgery to point out the information warning me not to take the Trazadone; the receptionist took the details saying the duty doctor would contact me this afternoon. Mid-afternoon one of the practice receptionists called me to say that the duty doctor said it had to be dealt with by the GP I saw yesterday but he won't be there until next Monday. It seems obvious to me that contracted GPs are afraid to challenge even wrong decisions by a practice partner.

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 !!!

from the frontline

Sometimes it’s difficult, if not impossible, to describe the exhausting ache of self-questioning, veering towards a sense of guilt for being ill and hence, a burden or embarrassment to those who you really care about. I must be honest that even this preludium to a post doesn’t really express the underlying frustration that prompts it; at root, the knowledge that even the best of days carries a stamina rating of perhaps 20 - 30% of my pre-illness norm.

 

What I was really wanting to say is that the relative paucity of postings, arising from a desire to communicate (with and for whom I know not), bears little distinct correlation to my present levels of pain, discomfort, joy or plain normality. There are times when I wish to write but simply lack the necessary energy to place the written words in any meaningful order; at other times I am positively glowing with the enjoyment of spending time with my beloved, excited by the variety of avian visitors to our sundry garden feeding stations, or even the refreshing joy of a brief brisk venture out into the bracing air, can fill me with such glorious images which, were I to write them down, would sound like an overblown description of some utopian paradise.

 

An evening cocktail of tramadol and amitriptylene tends to curb the night pains, even though sleep is invariably of a restlessly intermittent unrefreshing variety. In the morning I continue to take a low dose of sertraline which seems to control the reactive depression which this disease can so frequently carry in it’s wake. Currently I am also taking mebeverine (3 x daily) and lansoprazole (2 x daily) in an attempt to ease my IBS and gastro-oesophageal reflux problems.

 

I am extremely fortunate to experience a fair number of days where pains and muscular spasms are quite simply a faint background hum, futilely struggling against my enjoyment of the day. Unfortunately, at night, as my body strives for rest the fitful pattern of sleep leaves one more vulnerable to these pernicious nauseating pains and spasms.

 

This afternoon, my far too familiar nausea-inducing nagging pains, emanating from the armpit and apparently gnawing through bone and muscle down through biceps to wrist, vengefully returned. A combination of painkillers and splint type wrist supports eventually alleviated this as I rested on the sofa. And so I come to post this, in the hope that at least some of my words convey their intended meaning.

 

Communique ends.

tidings of discomfort and joy

The gaps between postings seem to be increasing; don’t know why I tell you that, presumably you’d already noticed. Sundry muscular aches and pains almost got the better of me during recent weeks, not so much the intensity of pain (barely halfway up the scale) but rather a disconcerting all pervasive sense of dis-ease. At present it feels as if a generalized discomfort proves more disabling than spasmodic acutely intense pain.

The question constantly arises whether codeine, tramadol or any general painkiller can tackle these dull persistently nagging aches. On occasion simply putting on wrist, elbow and shoulder supports seems to alleviate all but a background purring nausea, at others only the combination of pills and  strappings seem to do the trick.

It’s strange that some nights, following on from a more comfortable day, the discomfort only begins its nagging and gnawing routine when I attempt to settle down to sleep; brief interludes of dream laden sleep interrupt my sadly familiar restlessness. At times I could swear that the amitriptyline is working as a stimulant rather than benefitting me with its supposed gently sedative properties.

For the past several nights I’ve pre-emptively dosed myself with tramadol before retiring au lit but, I’ll never know whether it’s the medications efficacy that grants me a more comfortable (albeit still unrefreshing) night’s rest, or have these nights just happened to be ones that were destined to be more comfortable anyway.

At its worst the discomfort is such that I become nauseatingly ill at ease inside my own skin ….

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I’m now beginning to see a reason for not posting; all the preceding spilt out as if I’m having a miserable life whereas in fact I continue to feel rather blessed.

My love for ma belle grows ever deeper and, what’s more, that love is reciprocated. The assurance that one is loved somehow overwhelms life’s more negative aspects, simultaneously building one’s reserves of emotional stamina in readiness for the ongoing struggle for justice and compassion for all.

Having always been of a somewhat gregarious disposition I still, not infrequently, find myself mourning the loss of the ability to socialize (other than on the most modestly minimal scale) but still feel fortunate that I can enjoy all kinds of music and drama via television, radio, and sundry recorded formats. It’s strange the way that sudden unexpected sounds can serve to shatter my nerves, almost crushing the breath out of me, whilst dramatic transitions in a musical score never (or perhaps very rarely) seem to play such a disruptive role.

The garden too is a source of constant delight and refreshment, even when it’s getting a bit out of hand, and the avian activity (viewed from the comfort of a supportive high-backed armchair) is a constant source of pleasure.

Come to think of it, perhaps the reason I’m not posting so regularly is that I’m far too busy appreciating life!

Nursing ma belle - update

Just been hitting the tramadol again, hoping that they’ll alleviate the excruciating painful ache in both upper and lower limbs. During the night it was my legs that succumbed to lightning bolt spasms whereas, by lunchtime, it’s now the biceps that are undergoing erratic spasming. 

It’s really good to find my beloved able to manage a little food today; after I’d posted yesterday’s blog my beloved’s condition deteriorated further, necessitating further contact with her GP practice who decided to change her antibiotic to erythromycin as well as prescribing some anti-sickness tablets.

No sooner had she swallowed her first erythromycin than it was vomited back; in the circumstances it was difficult to see how she could manage to take an effective dose. Throughout the day (yesterday) even bland fluids could not be retained, occasional sips replaced her normal enthusiastic swallowing.

Having managed a boiled egg and toast for breakfast, I prepared a couple of smoked haddock fishcakes for her lunch and she seemed to really enjoy them. It seems rather strange that when she was running a high temperature she was shivering and shuddering yet, today, with her temperature closer to normal she feels quite overheated. 

For myself I had a lunch of my own unique recipe spicy beef meatball pasta – I’d actually prepared it at the weekend and, in normal circumstances both casserole dishes would have already been devoured – which I didn’t feel would have been quite suitable for ma belle’s temporarily sensitive stomach.