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H809 Reflection on Block 1 - towards compliance for those with moderate severe asthma
Wednesday, 13 Mar 2013, 23:21
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Edited by Jonathan Vernon, Tuesday, 11 June 2013, 11:16
The most straight forward of assignments has proved anything but ... not for how to write this 2000 word piece, that is straight forward, but rather committing to a subject, then narrowing down the theme, possible research question and then dig up some papers ... and not simply offer the lot, but give the five 'that say it all'. To pick five how many must you read, at least as abstracts. I made three false starts, even read a PhD thesis on blogging before deciding it is a minefield. I may like to blog but I no more want to research it for an OU assignment than sort out pebbles on Brighton Beach. Lifelogging, memory and neuroscience all interest me ... but are too big to get my head around in a few months - a few years perhaps. Looking at my notes I see I have papers also on augmented learning for field trips and museum visits. Then I returned to a platform that caught my eye three yesrs ago on H807 when I interviewed Dr. B. Price Kerfoot of Harvard Medical School on 'Spaced Education'. So far this system has been usef with doctors, to support their learning and decission making ... the next step will be patients. One of the humdingers here is 'compliance' - taking the medication you are prescribed if you have a chronic condition. What dawned on me this afternoon is that as a asthmatic I am the perfect patient - compliant to the nth degree. What surprised me is that such a large percentage of asthmatics are not. But with alleregies - a double-whammy of irritations, I ignore the nasal steroids and antehistemines almost completely. Compliant, and defiant in one go so just about canceeling the two out. But why? This is what fasciantes. You know you need to take something to avoid a return of the symptoms, but as there are no symptoms you stop taking the medication. Anyway, I am sifting through papers to set me straight and to offer some answers. If you have a moderately severe chronic condition and wish to share your medication regime or attitude please speak up - asthma, allergies, diabetes, epilepsy, other mental illnesses - chat on Skype? Meanwhile I checked my preventer inhaler - it was empty. I at least had a spare and will get a repeat prescription in tomorrow.
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Can of worms here Jonathan. Not sure if I qualify exactly. I developed a lung condition in 2009 which remained misdiagnosed until September 2010 when they diagnosed chronic hypersensitive pneumoneitus. By this stage they had tried various inhalers, (asthma) which I convinced myself aggravated the condition and refused to take. I then was given 40mg steroids to take daily, plus calcium tablets and vitamin D tablets to aid absorbtion of the calcium. Having been frightened to death I complied, then realising that the regime was working I stuck to the steroids but was more casual about the calcium. Normally I forget to take medicines or can't be bothered especially if I think they're not working.
At the time I had a number of 'rules' I adherred to.
1) No matter how lousey I felt and how long it took I would get up, wash and dress myself.
2) Even if it took all day some form of housework would take place e.g. wash up the breakfast things or dust the frontroom - on a good day I could do both.
3) Eat
4) I was ill not disabled, so no disabled badges or disability labels - even if those using them were a damned sight more able than I was.
5) No hospital - if I was going, it would be at home with my family.
When I got better I asked about whether going to the gym would help me. Having been told what a good idea it was I went - roughly a third of the time I should have - and gave it up as soon as it became inconvenient, even though exercise proved to have very positive results for my breathing and replaced wasted muscle tissue (lost as a result of the anorexia that forms part of the condition)
I still have the condition and microscopic lung scarring, but aside from reacting to smells, flowers and fur and coughing fits when I am stressed, rush or experience a change in temperature my breathing is good. I should still be using inhalers when my breathing is constricted (eg if I have been in contact with an allergen) but in my mind I react badly to them so won't.
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It is a minefield and I of course feel privileged and more than just lucky - in my teens I was a competitive swimmer and played the flute - both would have strengthened my lungs. I recently cut back on swimming regularly only because I amn overly prone to picking up infections and react to the chlorine. Swimming in the sea is better, but not in March in the English Channel! However, I do think previous generations got it right when they advised people with certain conditions lived by the sea. There was for some decades an Asthma Institution on the shingle beach at Seaford for people 'to take the air' - no urban pollutants, less hayfever on the South Westerly gales. I still, half-jokingly say to medical people that I plan to mover to an island and become a fisherman - up a mountain above 2000m helps too.
The current practice is for something called 'concordance' where your GP, Nurse and others ought to try to give consultations time so that we as patients become informed and empowered. I feel, within reason, that when I go in these days I know exactly what is going on ... and I so in a cautious manner. Prevention plays a role, but it is the hardest one to do in damp England. I have a dreadful reaction to house dust mite, so bad that I get a burning sensation on my hands if I empty the vacuum cleaner bag. I have jokingly said that the ideal place for me to live would be in an outdoor swimming pool - empty the water and put on a glass roof! i.e. no chance of house mites and cleaning means a hose and brush!
In relation to medication 'compliance' as a word is being replaced by 'adherence', but even here it sounds as if the GP is the Sergeant Major and you have to do as you are told. On the other hand, the medical profession are trying to get it right, including the pharmaceutical industry.
What lacking is both an holistic view of the person and their context, as well as attitudes to the medications that we are asked to take. Also an easier way to monitor health, the pelava with repeat prescriptions ... and of course the cost. My late father had a disastrous asthma attack in his mid 60s. I think someone should have pointed up that stubbornly refusing to take medications while letting two Alsations sleep on the bed was bound to aggrevate his symptoms - hospitalization, nebulizers and steroids followed. On release he found himself on all the original drugs, at a higher rate, with a nebuliser by the bed ... and diabetic because of all the above interventions. No guessing where I found the dogs when I visited
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I get by with frantic cleaning and lots of windows open when the weather is suitable. I am now working in the ideal environment for me, in the cold section of the supermarket - chilled with airconditioning and no smells.
We of course had a massive TB and asthma hospital at Ventnor. The patients were encouraged to actually do a lot of the landscaping themselves for health reasons. The hospital was pulled down but the grounds have been converted into a lovely botanic garden because it has a micro climate that is almost tropical.
Re the dogs we had a similar case here reported in the papers. A couple with breathing problems were advised by their GP to get rid of their 6 house budgies (free flying in the front room) as they are known to cause breathing difficulties. So they took them to the local 'feathered friends' bird rescue. Two days later they returned and said they wanted the birds back then the bird rescue volunteer said that given the GP's advice they would not return the birds. The couple immediately contacted the paper to say what rotters the rescue people were and went out and bought more birds. To me from my perspective it was a no brainer if the GP, as in my case, says it's get rid of the pets or die then the pets go. I did keep the rabbits as they were outdoors and using masks I could look after them plus psycologically they were a reason for keeping going. I think dogs and cats are harder because they are such an intrinsic part of your life and people do feel that they are a reason to keep going, but to risk your health by allowing them on the furniture especially the bed?
I don't 'do' animals in bedrooms anyway). Hope Dad surprises you with an epithany.