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Welcome to the twenty-sixth day of the National Health Blog Post Month Challenge hosted by WEGO Health.  Every day during the month of November I will be writing a new blog post related to health and living with a chronic illness based on given prompts provided by WEGO Health.

Today’s prompt reads:

Top 3 Tuesdays: List three questions you have for other patients.

As I have yet to meet another patient with the same condition as myself, I have decided to ask questions that could be answered by any patient with any chronic illness.  This prompt could provide excellent dialogue between myself and readers of the blog, so please comment if you have any answers to the questions that I will ask during the course of this blog post.

How do you make being bed-ridden more fun?
How do you make being bed-ridden more fun?

How do you make spending time in bed fun?

As I am writing this post; I am doing it from my bed.  Today, my legs have decided not to work and so I am forced to being stuck in bed; unable to walk or even stand.   I hate being stuck in bed; I find it dull and tiresome as there is only so much one can do from bed.  I am fortunate to have my own television set in my bedroom, which thanks to my parents has access to satellite television, as well as my iPad in which I can watch films from my own collection or through those shown on Sky or through Netflix.  However there is only so much reading and watching television a girl can do before becoming bored.  Therefore, one question that I wish to ask other patients is: How do you make spending time in your sick-bed fun and tolerable?

How you stay calm before attending hospital appointments?
How you stay calm before attending hospital appointments?

How do you cope with hospital appointments and make attending more bearable?

I know that no patient likes attending hospital appointments, but no matter how much I try, I am always so nervous before leaving the house to travel to the hospital.  When that letter first lands on my doorstop; the nerves begin it kick in, and the appointment is the only thing that is on my mind until the appointment day arrives.  The night before, I feel sick and anxious, with thoughts running through my mind about what will happen at the appointment; what the doctor might say and generally imaging all the worst case scenarios.  As a result my next question for other patients would be: How do you cope with endless hospital appointments? How do you relax before an appointment?  Are there any routines you have to make the day fun and tolerable?

How to keep calm and carry on with chronic illness...
How to keep calm and carry on with chronic illness…

How do you cope with living with a long-term health condition?

My my final question for patients with chronic illness, like myself would be related to how the cope when the illness becomes too much to handle.  Lately, the dizziness that I constantly live with anyway, has become even more severe.  In addition the pain, fatigue and weakness in my legs has also worsened.  As a result of struggling with this, the depression that often accompanies chronic illness has reappeared and I have been struggling to cope in dealing with everything.  So, my final question, would be: How do you continue to cope when your illness becomes too much to handle? How do you distract yourself from the pain, depression and other symptoms you experience?

There are my three questions for other chronically ill patients.  Do you have any other examples of questions to ask to other patients?  As ever would love to hear your thoughts, comments and suggestions! And don’t forget to comment below if you have any answers to the above questions.  Thank you xxx

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Welcome to the third day of the National Health Blog Post Month Challenge hosted by WEGO Health.   Every day during the month of November I will be writing a new blog post related to health and living with a chronic illness based on given prompts provided by WEGO Health.

Today’s prompt reads:

Teaching the Teacher: What’s something you taught your doctor related to your health?

In my experience, this is typically a very hard question to answer, especially in the UK  National Health System.  In the GP Surgery, I attend and the difficulty in getting appointments, it is very challenging therefore to get an appointment with the same doctor.  As a result, you often see a different doctor at each appointment, and therefore it is difficult in this scenario to be able to teach your doctor anything regarding my health.

In addition, even attending hospital appointments with consultants; I have often seen different doctors at each appointment I have attended; especially given that I often been  discharged from specialities, and then had to be referred back to the same specialty when the symptoms have worsened, or new symptoms have been occurring.  Given, that I have been dealing with this revolving door of dealing with different doctors, I feel that in this  situation, I am not abled to teach the doctor’s anything.

Patients are an important aspect of a doctor's education...
Patients are an important aspect of a doctor’s education…

However, really thinking about the above question, aren’t we actually teaching a lot to the doctor’s regarding our health, no matter which doctor we are seeing?   After all, during every appointment, we are teaching the doctor a lot about our health by discussing our symptoms, triggers that may precipitate the symptoms, and so on.  The doctor needs to be taught all of this information to adequately give we the patients a diagnosis, and subsequent treatment plan.   Every piece of information we divulge to doctors, is a small piece of a very large jigsaw, that is our health.  And with each new piece of the jigsaw, the doctor is able to take these pieces and determine where these particular parts fit in the overall picture of the patient’s health, and then as more and more pieces are revealed and pieced together the doctor can provide a diagnosis.

What’s more, everyday patients are educating doctors – think about, every time a doctor sees a patient with a specific health condition, for example, lupus or multiple sclerosis, they learn about the symptoms that can present.  As a result, when doctors see patients that are presenting with a set of symptoms that they have seen previously, then they may have immediate suspicions of what is wrong with the patient, which then could lead to an early diagnosis and treatment.  This may be especially important when dealing with rare conditions, such as mine.

So, even when we think we are not teaching our doctors anything, we are wrong, because we are in fact teaching them a lot – we are not only teaching them about our health, but also giving them information that they can use again when seeing other patients exhibiting similar symptoms to ourselves.  We as patients, it could be said are an important aspect of a doctor’s continuing education!

What are your thoughts?  Have you taught a doctor anything?  As ever would love your comments and thoughts so feel free to press that comment button…

I am participating in this month’s Patients for a Moment blog carnival!  This month’s carnival is being hosted by Abigail at Hidden Courage.

The Patients for a Moment blog carnival is held every month and solicits submissions from bloggers regarding a topic related to illness, whether it be from the perspective of a patient, carer or a professional – the carnival is open to everyone.

This month’s theme is: getting the attention you need.  Specifically, getting the attention you need as patients within the healthcare system.   I am sure every patient, has been casually dismissed by a busy, overworked doctor, with a glance at their watch, counting down the time when we should be out, and time to see the next patient.

It seems as if doctors are constantly watching the time
It seems as if doctors are constantly watching the time

However, what is it like to be a patient with a long-term chronic illness, where it seems that we are constantly being dismissed by the healthcare system.  And what can we do to get the attention that those with chronic illnesses need and deserve despite often having difficult and challenging conditions which are not always easy to diagnose nonetheless treat.

As a patient with a long-term chronic illness; an illness which went undiagnosed for years, and one which was misdiagnosed as an anxiety disorder, I have at times felt ignored or dismissed by the healthcare system on countless occasions.  When I tried to challenge the doctors that the dizziness started before the anxiety, however, I was dismissed yet again, probably deemed to be a hypochondriac  and again sent on my way.

Being ignored and dismissed by doctors, and being constantly told that the symptoms you are experiencing are just ‘all in your head’ can be demoralising; especially when the symptoms that are supposedly in your head are for you, very very real.  A problem that I often experience is the lack of consistently in my care from the medical profession.  The surgery that I am registered with has several different doctors, and you are never guaranteed to an appointment with the same doctor.  This is a real disadvantage for patients with an unusual chronic illnesses as it means that you have to reiterate your medical history, diagnosis and so on at every appointment.   Also different doctors have different methods of working and ideas, therefore patients with chronic illness often prefer to see the same doctor for consistency in their care and to see a doctor that know their full medical history and familiar with their diagnoses.

So, whenever I make an appointment with my local GP Surgery, I makes sure that I ask to see my regular doctor – doing this also saves me and the doctor time as I don’t have to waste several minutes of the appointment explaining my medical history.

In the end I had to fight very hard to even get a referral to see a neurologist.  I was lucky that I had a strong support system in the form of my parents, and found it incredibly useful to have an advocate present during the appointment to stand up for me when I didn’t have the confidence to stand up for myself.

Another barrier that I have found is the routine questions that doctors often ask, such as asking to describe what the dizziness is like; however how am I expected to describe an experience that is so difficult to explain in words – especially when put on the spot.  Often I have found that there are so many ways to describe certain symptoms, and I cannot always find the right word to describe the experience of the dizziness, or trembling in my legs.  If patients are inconsistent in their account, doctors are then more likely to dismiss them and not take them seriously.

In order to avoid this barrier, and to ensure that I adequately describe the symptoms accurately and consistently I write my experiences with my illness (both physical and psychological symptoms), in a journal and then take it with me to appointments.  A second notebook is also very handy to take along to appointments in order to write down notes regarding the information and advice that the doctor passes along to you, especially helpful if you are likely to forget after the appointment has ended.  Not only is it helpful to make notes it also shows the doctor that you are a patient whom is pro-active in their approach to their own health, and also are a cooperative one.

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Keep track of your illness by journaling! And takes notes during appointments to get the most out of it…

So to reiterate; in order to be taken seriously by the medical community and not to be dismissed by doctors here are my tips on how to get the best out of appointments:

  • Do not be afraid to advocate for yourself to get what you need in terms of referral, treatment and so on.  If you are unable to do so for whatever reason then perhaps take someone along to appointments so they can advocate on your behalf
  • Try and get appointments with the same doctor to get consistency of care and prevents you from having to divulge your entire medical history at every appointment
  • If you can, try keeping a journal or even a small notebook where you can keep account of your medical condition, such as symptoms – the frequency, severity and whether certain treatment or approaches seem to have any impact on them
  • To show that you are a cooperative and pro-active patient, take notes and ask open-ended questions at appointments which will less likely result in you being dismissed by doctors and other medical professionals
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