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 !!!

Pacing can be a Pain

 

 Since yesterday lunch-time the discomfort has become quite extreme, in fact I don’t know why I try to soften the sentiment by substituting the word discomfort for what has ranged from excruciating pain through agonizing, nausea inducing, aches.  For several days back pains have flared up, presumably related to the herniated disc, to the extent that it has proved virtually impossible to find a comfortable position seated, reclining, or attempting to shuffle about, for considerable periods of time.

 

For a couple of days my lower limbs have had that achingly rubbery feel that I always used to associate with a bad bout of flu. Cervical and axillary lymph nodes, in neck and armpits, have once again taken on a most disconcerting tenderness, as if striving to draw my attention away from those aches that seem to flit between elbows and wrists. Gosh, as I write this down, it’s just dawning on me what bodily excitements I bear witness to.

 

Chronic abdominal spasms, and erratic spasms of irritation in the upper digestive tract, make almost perfect companions to the not infrequent chest pains. It’s almost as if some great controller has decided that no part of my torso or limbs should feel lonesome; I must admit that my body’s erratic thermostat, with the dance between overheated and over-chilled clamminess, is beginning to feel absolutely normal.

 

A couple of weekends ago, I was so proud of my achievement in attending two events

of moderate socializing on consecutive days, but within thirty–six hours payback had well and truly kicked in. On the Monday, after the social weekend, it came as something of a surprise to hear my GP utter those unexpected words, “don’t push yourself”. When it comes to an illness like ME, there couldn’t be any more sensible words of warning. Trouble is, on those rare occasions, when one feels able to manage a modest amount of exertion, it’s not always obvious where the boundaries lie.

 

Pacing is so vital but, at times, one seems to be set on an almost interminable learning curve.  

of appointments and pent-up frustrations

Last Saturday found me out in the garden doing a bit of lopping, pruning and trimming of sundry shrubs. I must have spent a little over an hour enjoying a gloriously sunshiny day, as the shrubs ensured work for idle hands. Two days later, by way of reward for these endeavours, a day of numbingly aching body and soul when even switching on a kettle seemed far too great an effort.

Mid-way through my waking hours on Tuesday, I started to feel reasonably recovered (from the tortuous preceding day) so there was little to suggest the tear-fuelled emotional response to a visit to my GP’s surgery the following day.

My appointment on Wednesday afternoon was with the same GP referred to in the post “once more to the land of A&E”, and therefore a most positive prospect. Once in the consulting room, the atmosphere seemed overwhelmingly business-like as, within the allocated 10 minutes, he wanted to focus solely on symptoms of breathlessness and chest pains, thereby excluding all other aches, pains and painful disorders, from the equation. He said he was going to arrange an appointment with the cardiology department and was also sending me for further blood tests, as well as a Glucose tolerance test (requested by one of the practice nurses who had been checking my NHS Health Check results). It was also mentioned, in passing that I’d not kept appointments with the Chronic Fatigue Unit and, they had now discharged me! For the truth of this see my post “psycho-fatigue”, (which describes my departure from an assessment visit at which I informed the psychologist I wouldn’t be paying any further visits to the Unit and, hence, discharged myself).

As I headed back home, with my beloved, I was overwhelmed with a pent-up frustration and tears flooded out. I felt as if I was being treated as a chest-pain, not at all as a person! When I got home the tears flowed even more freely and I declared that I wouldn’t bother with any of their b…dy tests. Being told that I’d failed to keep appointments at the psycho-fatigue unit, a false surmise, turned out to be the final straw that released all the pent-up frustration.

Ma Belle swiftly contacted the surgery to inform them how distraught I was after the appointment. A short time later I received a ‘phone call from the same GP I had seen earlier, as he wanted to understand why I should be so upset and, at the same time apologized if he’d misread the situation and seemed too business-like!

Early evening our doorbell rang – an unexpected visitor had arrived! The doctor, having finished his surgery duties, had in his own time called around to visit us and enquire what he could do to help! I was assured that he hoped to take a holistic approach and, he once again apologized for misreading the situation. Talk about going the extra mile! The visit ended most amicably and I will be seeing him again on Monday for a further twenty minute consultation.

Meanwhile I’m bracing myself for tomorrow’s early morning bloodletting session at the District Hospital.

how strange the change ...

How swiftly things change, at least on a superficial level. Although the cause of the sundry ailments my flesh has been heir to of late is somewhat elusive, the symptoms have somehow been alleviated by ... unknown!

What a difference a day makes; after yesterday’s ropiest of starts, as the day progressed, my appetite (for food) commenced a restorative process. After days of picky snacking, and with the comforting presence of ma belle, by early afternoon I felt fully able to contemplate a real lunch; the swiftly prepared baked salmon, served with new potatoes, brocolli  and beans, seemed like a real treat and I even enjoyed a post-meal shared pot of Earl Grey without any adverse reaction. By this time I’m beginning to suspect that some of my most recent discomfort has been a reaction to the Amoxicillin prescribed last Saturday but, I doubt whether I can hold that responsible for the mornings flow of tears.

Late afternoon I got in to see the locum doctor, at my GP’s surgery, and he proved to be a good listener – to me the most important  prerequisite for any GP. After a few minutes, having checked my medical history, he asked whether I felt a need to go back on Citalopram or whether something to help me regain a reasonable sleep pattern would be most appropriate. I settled for the latter as, quite honestly, with the exception of those spontaneous re-active outbreaks like that experienced yesterday morning, my general disposition (even allowing for the aggravating dis-ease I’ve been experiencing of late) is pretty positive.

To assist with my sleep he has prescribed Trazadone ( which I notice is an anti-depressant) but only in a very low dosage, one 50mg capsule to be taken an hour before bedtime. After the first dose I haven’t noticed much change but, at least I had no recourse to wee small hours radio listening. Although my beloved had left a glass of water at my bedside, before she left for work at 7.30am, it wasn’t until 9.30 that I was sufficiently awake to utilize it as I swallowed my cocktail of lansoprazole, tramadol and amocxicillin. Removing myself from the duvet lair, at around 10.00am, I felt really quite refreshed – a relatively unfamiliar early morning sensation - and by shortly after 11.00am had corralled the necessary stamina to manage a quite brisk walk down to 'Open Church'.

When my physio visited, earlier this afternoon, after a while spent in conversation she applied the acupuncture needles in positions most conducive to aiding relaxation and recuperation.

And today it's dermatology

I seem to be a quite regular client of the NHS these days, what with visits to A&E, overnight stays in hospital, various appointments with my GP, visits from the physio to administer acupuncture. What a privilege it is to have this wonderful service; one can only trust that the service will be protected / preserved from the worst ravages the ConDems hope to commit upon it.

Just 12 days ago my GP referred me to the Dermatology clinic which I visited this afternoon. The consultant immediately diagnosed a rodent ulcer (basal cell carcinoma) and is arranging for it to be excised, under local anaesthetic, sometime in the next four weeks. Meanwhile he has prescribed a steroidal cream to be applied to an inflamed area on my back surrounding the ulcer. I find it truly impressive the speed at which arrangements are falling in to place; the National Health Service, freely available to all, and so easily taken for granted, is a gem to be cherished and protected.

ME and my body

Yesterday morning, right on time, received a 'phone call from my GP. "It's good news and bad news", he said, "first, the blood tests showed no abnormalities". A mixed blessing that, at least nothing sinister has been spotted but, I'm no wiser as to the cause of my current downturn in the health and stamina stakes. "The chest X-ray was clear", once again a sense of relief as I start wondering what the bad news is. "It seems as if the symptoms you're experiencing are part of your ongoing condition. If things don't improve or, get any worse, don't hesitate to contact me but, there's nothing I can offer you at the moment".

The problem, and indeed danger, when suffering with a chronic neurological codition such as M.E., is that one tends to assume any extremely discomfortingly exhausting ailment they experience is simply part and parcel of the overall condition. One becomes so used to living with pain that their pain threshold is increased and, excruciating symptoms that would have previously been a cause for alarm are accepted as "normality". (This was very much the case around this time last year when, for far too long, I assumed that the extreme pain emanating from a herniated disc was yet another manifestation of my underlying condition).

Periods of remission are by no means unusual and, when these occur, the greatest danger then is to push oneself and, as a (sometimes belated) result find themselves once more painfully out of it. These are the times when I find concentration diminishing, tetchiness increasing and, that old (sadly familiar) enemy, sensory overload, recurring. The most frustrating thing of all is the impossibility of knowing if one is "ill", beyond the parameters of the resident disabling condition.