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Doctors and Me….

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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…

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Favourite Fridays: What Blogs are on my To-Read List…

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Welcome to the twenty-second 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 post reads:

Favourite Fridays: What are your favourite blogs to read and why?

The Patient Patient Transforming patient experience WITH patients

The first blog that is definitely on my to-read list, is written by a good friend of mine, Anya.   The blog is entitled ‘The Patient Patient‘ and is a thought-provoking read, as it not only documents Anya life living with several long-term conditions, but also informs the reader on issues relating to the NH, medicine and the self-management of chronic illness.  Anya writes eloquently, and her posts reflect that she is writing about is a topic that she is passionate about.  In addition, Anya is hugely involved with organisations that promotes the empowerment and engagement of patients in their own care, and with this work, is able to attend conferences, both as a guest and speaker, and what is great that when writing about these conferences, Anya makes the reader feel a part of the experience.  Another aspect of the blog is how many of the posts, are relatable to every person living with a chronic health condition, such as the frustration of waiting for appointments, and recently regarding the search of a wheelchair, which as someone who also now needs to use a wheelchair, is one post I really related to.  For anyone who wants to read a blog which is thoughtful, informative and relatable, the surely ‘The Patient Patient’ is for them.

 

Chronically Creative About Miss Chronically Creative

Another favourite blog is mine is ‘Chronically Creative‘, a blog created by a young woman named Emily who battles a number of chronic illnesses, including fibromyalgia, rheumatoid arthritis and chronic fatigue syndrome.   What I love about this blog, is that it is not only just about the journey of living with chronic illnesses, which from personal experience I know is incredibly difficult, but is one which offers joy and hope despite illness.  And what is more, as someone who has recently engaged with creating a variety of different crafts, the blog also encompasses this with a variety of different posts regarding creativity such as nail art, scrapbooking, card making, baking, and so much more.  It is a fantastic blog to read when wanting new inspiration for a new craft project, or wanting to bake something different and so on.

 

Stumbling in Flats » . . . a funny old life with multiple sclerosis Stumbling in Flats

 

The last blog that is on my to-read list and which is among my favourites is ‘Stumbling in Flats‘.  Although I do not suffer from MS, as my condition is neurological and is caused by a brain stem lesion, a lot of the symptoms that I experience is very similar to MS.  So, when I read this blog, a lot of the scenarios and experiences that is written, I find that I completely relate to.  Also, this blog although about life with multiple sclerosis, which can be difficult, it is however very light-hearted and funny, and can even make you look back at scenarios in your own life, and laugh despite it being embarrassing at the time of the incident!  It provides hope beyond the diagnosis of such a long-term health condition, and shows that even with an illness like MS, life can go on just as before, and can live a normal and fun-filled life.

 

So, those are 3 of my favourite blogs!  Do you have any favourite blogs?  Any recommended reading?  As ever would love to hear your thoughts and suggestions!  Comment below…

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Talking Mental Health…

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Welcome to the twentieth-first 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 post reads:

Mental Health Meld: Mental health issues can affect many other conditions.  Write about mental health, emotions, and challenges as they relate to your condition. How does your mental health affect your overall well-being?

Let's talk Mental Health...
Let’s talk Mental Health…

Regarding yesterday’s post about the start of the dizziness in my life, entitled “I still remember..“; it also triggered an anxiety disorder.  Due to the intense dizzy spells that I experienced as a young child and becoming worse as a teenager, it resulted in me worrying about everything; worried about the when the next time the dizziness will occur.  And then when it occurred in places such as a supermarket, or in a particular shop, I would worry that it would happen again and so would avoid that places, in the hopes that I would avoid an attack of the dizziness.  However, this obviously did not stop the dizziness from the occurring; but only resulted in my world from becoming smaller and smaller as I avoided more and more places.  In addition, as a result the dizziness that I kept mentioning to the doctor was put down to the anxiety disorder that I was diagnosed with.  This is the problem with being diagnosed with a mental illness; it is widely acknowledged that mental health patients face difficulty in getting diagnosed and treated for physical illnesses as doctors will often blame their psychiatric diagnosis or the medications that they are taking on the symptoms that patients are experiencing.

A diagnosis of a mental illness can be a roadblock to getting diagnosed with a physical health condition...
A diagnosis of a mental illness can be a roadblock to getting diagnosed with a physical health condition…

In the end, I got help and treatment from the anxiety disorder, and thanks to therapy and graded exercises my world once again started to become larger as I started to visit the places, I once avoided.  The relaxation techniques that I were taught, helped with the anxiety I was experiencing; although the dizziness was still very much there and still as intense.  Now, I still find that anxiety is still an issue; an issue that can affect my mental and physical health,for example when  the dizziness becomes so intense when out, my first instinct is still to panic and become anxious, although the anxiety I find is something that I am able to control, unlike the symptoms relating to my neurological condition, such as the dizziness, and the weakness and trembling in my legs, etc.

It is not only the anxiety, however that can be a problem for my mental and physical health however; depression is also another mental health issue that I have experience of, and can which still be a problem, years even after it first started.  The depression, can still rear its ugly head, when I am experiencing bad flares in my condition.  I often experience the depression, when my symptoms have been really severe for a long period of time; for example recently the dizziness has been so bad for several weeks now, and that has been making me feel down a lot of the time because of it; and because of the depression, the fatigue that I already experience becomes even worse, and that has a knock-on effect on the rest of my symptoms.

Depression can appear during flares in my condition...
Depression can appear during flares in my condition…

That is the thing with mental health conditions when already living with a physical health condition – it is a vicious circle and one of the health conditions become worse, it automatically affects the other.  So, to survive living with a physical health condition, we also need to look after our mental health…

Do you find that the best way to live well with your chronic illness is to also look after your mental health?  I would love to hear your thoughts and comments regarding this issue.  Please comment below…

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Top 3 Tuesday: Pieces of advice for ‘Top Caregivers’

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Welcome to the nineteenth 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 Three Tuesday: Give three pieces of advice that you would give to a caregiver.

Caregivers are such an aspect of the lives of patients with a chronic illness.  Caregivers fight for us; advocate when needed; care when we are unable to care for ourselves and give us a lot of support through the bad times, when hope seems impossible.  And as they are such an important part of our lives whether they be a parent, a child, a spouse and so on, they too deserve to have plenty of support and advice offered to them when it is necessary.

Caregivers are like superheroes! Working and taking care of those suffering with illness!
Caregivers are like superheroes! Working and taking care of those suffering with illness!

As a chronically ill patient, the top three pieces of advice that I would give to caregivers would be the following:

  1. Try to understand the patient and their situation, whatever that may be.  It is true that it is very difficult to understand the predicament someone is going through, unless you have been through that situation yourself, and this especially applies to the experience of chronic illness.  However, if you are caring for someone with a chronic illness, and particularly those like mine which can cause unusual and unexplained symptoms, listen to what it is like for them and try to understand how frightening it must be for them to go through.  Learn about any possible triggers that can cause symptoms and help them through when they occur by holding their hand or speaking words of encouragement; whatever works for them
  2. To listen, be supportive and sympathetic.  This is incredibly important after the initial diagnosis; the patient will be scared and incredibly anxious about what the future will hold – not knowing if the condition will become worse and so on.  In this case show that you still love the person despite everything.  Also, never assume you know what the person is feeling or experiencing on a daily basis.  If  they say they are feeling very dizzy, and finding it incredibly difficult and so cannot go out – then BELIEVE them!  Give the person a cuddle – or go out and buy them a treat to put a smile on their face.  They’ll be very appreciative of it – I know I did when a very dear friend gave me a beautiful bunch of flowers; or when another friend sent me a beautiful butterfly brooch as she knew how much I loved them and wanted to do something nice for me when I was going through a difficult time.
  3. Be understanding and patient.   it can be very difficult to plan ahead of time; to plan days out and other activities as the patient will not know how they will feel as that particular moment of time.  Trips might have to be postponed or cancelled at short notice.  This can be very frustrating for not only the patient but also the caregiver.  In these instances it can also be important for carers’ to be practical and inventive, perhaps thinking of other activities that the patient can take part inside the house – this could be time spent playing board games, or a cinema afternoon playing favourite movies with popcorn and wrapping up with a quilt or blanket.  Or perhaps one of my favourite hobbies – making cards!
If you are a caregiver - then take time for yourself; get your hair done, or find a new pastime or hobby. Love yourself!
If you are a caregiver – then take time for yourself; get your hair done, or find a new pastime or hobby. Love yourself!

But perhaps the most important advice that any caregiver should be given is to take time out for themselves; such as taking up a hobby that takes them out of the house.  It is important that carers do this to prevent them burning out and as a result become unwell themselves, and to generally be able to provide the care that the patient needs.  Also, in my opinion any caregiver deserves a treat and time out for themselves as they definitely work hard in caring for others’ needs.

As ever, please feel free to leave any comments or suggestions below!  Are there any other tips that you would share with your caregiver?  Comment below…

Congratulations if you said that the incorrect statement from yesterday’s post was Number 2 – “Spastic Paraparesis only affects my legs” was the incorrect answer.   You are correct!  I find that my arms are also affected with them feeling stiff and weak some of the time, although not as badly as my legs.

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Being visibly invisible: The debate of stigma and invisible vs visible illnesses

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Welcome to the seventeenth 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 post reads:

Invisible Illness versus Visible Illness: What are some stigmas you have experienced with your invisible OR visible illnesses that have made you feel invisible?  How have you tackled them?

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Etymologically the word ‘stigma’ derives from the Greek word stigma, meaning a mark of disgrace either made from branding or pointing.  The mark was used to mark individuals who were seen as different, and by branding such individuals with visible marks it made it possible for society to avoid them.  In modern times, although many groups of society are not marked in this way, they still are shunned by society.  And those individuals living with illnesses; either visible or invisible are just one example of a group that are still being rejected by the wider society.

As I am someone who has lived through illness at times when it has been both invisible and visible, I can categorically state that stigma occurs in both of these categories.  Obviously, when the illness is invisible, however, it is harder for people to stigmatise individuals with such conditions as you cannot tell that there is a problem with them, unless it has been divulged to them.  These social networks however may be an example of a group that stigmatises an individual because of an invisible illness.  For example, I know many people who constantly live with fatigue, and often as a result have to cancel appointments or plans with others because of it.  Friends and acquaintances however do not tolerate or accept this behaviour as they cannot imagine or accept that tiredness can have such an adverse impact upon a person, and as result can perceive the individual as being lazy or uninterested in their friends.

We need supportive friends when living with an invisible illness and to be believed and supported
We need supportive friends when living with an invisible illness and to be believed and supported

Also, with many invisible illnesses, those suffering with such conditions do not always look sick, and consequently many do not acknowledge the fact that they are in fact sick, and the term “But you look so good!” is therefore banded about.  It is this lack of looking unwell, that results in many not believing a person when they do divulge that they are sick and has become one of the most common stigmas of invisible illnesses.  Another common stigma associated with invisible chronic conditions is the train of thought that such individuals do not deserve such privileges such as a disabled blue badge; a stigma that I myself have faced on several occasions and have written about in a previous post entitled ‘Becoming Visible in an Invisible World‘.

Being in a wheelchair can make you feel as if you are invisible!
Being in a wheelchair can make you feel as if you are invisible!

However, as I am at the stage where I need a wheelchair going out, my condition therefore is now much more visible, so what are the stigmas that I have faced whilst living with a visible chronic health condition?  The first that I have really noticed is the feeling that the condition and disability is taking over my  personal identity; the often feeling that people see me as the ‘girl in the wheelchair’ rather than the person I am.   An example, of this is the fact that when I have been out recently, people often talk to my carer or the person I am with instead of talking directly to myself.  This can be demoralising, and feels as if people perceive all individuals with disabilities as being unable to hold a conversation.  My problem is with my legs and not my intellect, I often feel like screaming.  It’s as if that because people need to look down on us, in the literal sense, then it must mean we all need to be pitied or looked down upon, metaphorically speaking.

When people do not talk to me directly, which I have encountered on numerous occasions, this definitely makes me feel very much invisible.  The way I have tackled this problem, is by holding my head up high and starting conversations with people on checkouts; and in shops as a way of subtly letting them know that although I am in a wheelchair I do not need someone to talk for me; I find it does work and the same cashiers have not done it again!

 

Do you live with an invisible or visible health condition?  What are some examples of stigma that you have personally faced?  As ever would love to hear your thoughts and experiences as well as any other comments you may have!  Feel free to comment below…

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