Patience is a Luxury not a virtue

Like everything in life if you exceed a certain amount of any particular thing, eg, food, drink, state of mood or emotion, then you harm yourself, and so the saying goes 'too much of a good thing can be bad for you' . I have never been more convinced of this saying as I am now, for seven long months I have shown nothing but patience and tolerance not just for my wound to heal but in dealing with various medical professions, incompetent nurses and long waiting lists for specialised doctors. But patience has resulted in elbow wound getting worse and me the patient getting more and more frustrated, without the appreciation of the nurses for my tolerance or pain.

Last week I asked to see the Tissue Viability nurse who is supposedly the expert in wounds and pressure sores, yet have not seen her for more than 6 weeks, but to be fair they took notice of my request and so she came to see me, which proved to me that titles, qualification and position mean little when you don't have passion for the job. To be brief, the nurse did not like the idea that I was seeing the GP's nurse and suggested they cut down on their visits to me!! the only reason I go to the other nurse was because the GP thought that my wound needed daily attention and since the district nurses can not provide it then the practice nurse would see me, but even then it was just ONCE a week. I obviously pointed that out to the nurse then asked her about an alternative dressing as the skin is getting damaged, and suggested the name of a nurse she knew very well who had told me about a new dressing that just came on the market which might be good for me, her reply was: 'I don't know that one'!!! did not even say I will look into it or I will talk to the other nurses! then took the adhesive dressing out and just put a bandage around the wound!!

By 8pm that day my wound deteriorated as it started to leak and bleed, so I was back on the adhesive dressing, when I had my next district nurse visit I explained what happened and the reply was : 'well you wanted the adhesive to be taken off' SO IT IS MY FAULT??? I am in severe pain the skin is getting damaged and breaking and after 4 months I think it is within my right to worry about my elbow since no one else seems to be concerned enough. Obviously I can not say all of this to the nurse, it will antagonise them and make me hated by them more than they already do probably. The nurse whom I usually like, then said, 'you really must be more patient with dressings, give them longer time and you must have hope' hahahahaha well 4 long months I think is enough time to judge the success of anything let alone dressing, and with health you can not afford to be too patient or wait for results, sometimes a day can cause major problem. As for hope well how can I have hope when I am surrounded by Caring professions that do not care, experts that lacks knowledge and  people shift the blame and responsibility to someone else. What the nurse failed to understand is that for a patient who is in constant pain an hour is like a month and a day is a long year, when you are suffering patience is a luxury that not many can afford, how can I show patience and remain so, when the wound is causing the hole on my elbow to get bigger, when skin is getting damaged and the nerves are getting trapped....patience is not a virtue but is a form of punishment and self harming....

In retail or commercial sector, a customer is always right, because they pay and their money buys them their satisfaction but in health it seems a patient is not given a right!

Chocolate Cure

'A spoonful of sugar makes the medicine go down' well that is according to Mary Poppins, whom I loved as a child and still find her a fascinating character after all these years, so if sugar eases the consumption of medicine then chocolate must have an even bigger impact.

It was the 'cure' offered by my GP, a senior doctor of the practice, with fair amount of experience  and qualifications, whom up to that day, I had always fully liked, trusted and respected. To give brief background of the situation I had severe abdomen pain and headache, so asked for both matters to be investigated as they have been constant for more than two weeks, his direct response was 'No, we know it is your disease' meaning my my medical condition of muscular dystrophy, and it is just matter of living with it!!! I looked at him with disbelieve more than anger, there are times when people shock you so much that your emotion becomes frozen for a brief period of time as it takes few minutes for you to grasp what has just been said. I was naturally speechless, not just at how an educated medical profession calls a physical condition a disease, but at the fact he was not even attempting to show any slight interest in finding out the cause of the pain, he did not even offer to take my blood pressure to see if the headache is a caused by high BP.
After a minute or so, I said so what is the solution I cope with this pain and not know the real cause or even if it is related to my condition then surely there MUST BE A WAY to deal with it. His response changed from an arrogant defensive tone to a more patronising one, as he pointed out that I was one of his most tolerant and enduring patients, who bears a lot of pain and copes without painkillers and wishes that he could help me more and seeing me makes him feel useless as he can not do much for me!!!!! I just smiled, I lost all the words that had been building up in my head, but actually it was not so much losing as knowing should I speak my mind I could risk being seen as depressive or labelled as a 'difficult patient' so carried on smiling and reassuring him that he is not a useless doctor. After his long speech of me being a complex patient that can not be helped, came his peak performance as he turned around and said ' can I offer you a chocolate that will help' !!!!!!!!!!!!!!!!!!
I opened my eyes and ears just to confirm to myself if this was true, yes... yes it was real my GP refused to refer me to specialist or have my pain investigated as he 'knew' it was caused by my condition and his only solution was ....yes simple chocolate. My response was a nervous laugh and said 'no thank you, its fine. It was  a strange feeling, as I said before, not just anger but mixture of  things, I felt slightly pathetic as though I was a child that is about to be injected with the biggest needle and is told this chocolate will make the pain better, I felt weak, betrayed by someone I had entrusted with my health, and at a loss. How will the chocolate help? I keep wondering to this day what would have happened if I had taken his offer and then rang few days later and said, 'I still have the same pain and the chocolate did not help'! 

An idea has came into my head as I am writing this blog, actually it is more of an explanation of the 'chocolate offer'. I guess his intention was to make me happy and forget my pain and problems by eating chocolate, something that quite common among people, I have heard few friends and others saying that through bad moods or monthly cycle they feel the need to eat chocolate, simply because it brings their sugar level higher and ultimately increase their energy and self esteem by enjoying a desired craving, all of which contribute to making them feel better physically and mentally. So was he right? did I over react? am being too judgemental? from my perspective no, he should have at least attempted to run basic tests to determine the cause of my pain, he could have talked to me as an adult, and if you were going to offer chocolate then at least offer decent good brand. I leave you this week with my usual thought, if doctors can use chocolate as a method of treating patients, then imagine all the NHS money that could be saved, we would have a happy high spirited nation who will probably suffer from diabetes, overweight and teeth decay, But will have cut cost and increased Dentists profits. 

No tears, It is a comedy of errors

Well it has been an interesting few weeks, people often say there is always hope, and the usual cliché of 'light at the end of the tunnel' but can light actually emerge in a 'tunnel' that has no space or infrastructure that could allow light in?? the tunnel being the current state of Medical care/professions.

I will write about three incidents that took place over the past few weeks, and just to demonstrate that this incompetence is not exclusive but is shared by others too, I shall report on an encounter my friend had with a district nurse. 

My friend has long term health problem and is also disabled, when district nurse when to visit her and saw she looked pale and poorly, instead of checking basic things such as Blood pressure and temperature and giving the 'patient' moral support, the nurse says 'you are looking very ill, you have to get stronger do YOU WANT TO DIE and leave your mother alone?!!!!!!!!!!!!!!' hmmmm errr what can one say to that?? so the problem not of my friend dying but LEAVING HER MOTHER ALONE???????? is that a new technique in the medical profession to make patients resist pain,  by making them feel guilty about people around them and scaring them to death by the thought of death?? one can only laugh otherwise the frustration alone will set your health back.

As I have explained in my first blog, I have had a pressure sore on my elbow, for at least 5 months but has deteriorated in the last month or so, anyhow two weeks ago I get a visit from the district nurse, not a regular one but agency, comes into the bedroom and declares ' I have come to see your elbow, where is it?' !!! hmmmm I looked at her with amazement not sure if she is joking or serious, and kept thinking maybe she has perception problem, But no she was fine, just needed direction to part of the body she is not well acquainted with.  Then asked me another 'smart' question 'did the doctor say it will get better?' this was right after her shrieks at the sight of the wound stating the clear and obvious leak that is coming out of the wound! What hope can anyone have after a visit such as this? should nurses not try to calm and encourage the patients? should they not have direct contact with the doctors? should they not know the very basic of anatomy!!!
so many questions left unanswered.

The best and final incident is the climax to an interesting few weeks, it occurred 3 days ago when after a visit from the district nurse who did not put the dressing correctly, resulting in the wound leaking and bleeding, seeing the blood, plus the pain I was experiencing made me decide to go to the GP who with the practice nurse decided that the wound is infected YET the swab result will only come out in a week time!!!! so I was put on antibiotic, not sure if it is the right one or not or even if I need it but we will find out in 6 days time when the swab result is back!! they also decided I need to be seen by them everyday as 3 times a week visit is not enough. Finally I thought someone cares, so the practice nurse contacted the district nurses informed them to come on the weekend and they the GP surgery will take over during the week. Again I thought Heaven. Even if it means coming out in the cold everyday at least the dressing will be changed and cleaned everyday, But dreams rarely turn into reality, the next day I happily went to GP surgery saw the nurse changed dressing then was told no appointment available for at least 12 days!!! apparently it is a high season!! yet changing dressing would take maximum 7 minutes. Now I am left wondering will the district nurses return? will someone change the dressing and why does a simple swab take 6 days to come back? and is my elbow infected again??????
all will be answered in my next blog...