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Taking the high road…

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Welcome to 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:

Taking the High Road: Write about a time you had to be the bigger person and take the high road.

A while ago, I was having a conversation with somebody online, and they enquired about my life with my health condition.  As I explained the symptoms that I experience, the person responded “Surely, dizziness isn’t that bad to live with.  I’ve experienced it a few times, and it wasn’t that bad…”  At first, I was astounded, and really wasn’t sure how to respond.  Then, I got really angry, and wanted to shout (or in this case type!) “It’s not that bad!  You try living with this constantly and then try telling me it isn’t that bad!”

As much as I wanted to, however, I didn’t and took the high road, and instead responded “Well, I am glad your experience with dizziness wasn’t bad”.  That was the end of the conversation, and instead opted for safer conversations such as books that we both like, and films and so on.  Looking back on the conversation, and after having conversations with other people suffering with chronic illnesses, I realised, that although the person’s comments were not said to be malicious or hurtful, although I found them to be just that; it is very difficult however extremely difficult to imagine  the severity of any symptom that a person suffers with, unless you have experienced it yourself.

Never a judge a person or indeed their illness if you haven't experienced it yourself...
Never a judge a person or indeed their illness if you haven’t experienced it yourself…

Perhaps, when people, whose words we perceive to be hurtful, in relation to our illness, we need to take a step back and instead of shouting and hitting back at their words, we can take instead it take as an opportunity for educating others’ about our particular health conditions, and becoming an advocate for everyone who lives with the condition.  It provides an excellent opportunity to really discuss with others’ what it is like to live with the illness, and to dispel popular myths that exist in the media and wider community.

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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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In Chronic Illness

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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“I Still Remember…”

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Welcome to the twentieth 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:

I Still Remember…Free write a post that starts with this line and describe an unforgettable moment in your health journey (for example; a cancer free diagnosis, etc)

I still remember the first dizzy spell that I experienced when I was eight years old.  Although my Mum suspects I may have experienced dizzy spells when I was really young, however the one that I experienced when I was eight, is the one that I really remember experiencing, and started my long journey living with dizziness.

It was December, and my parents and I were browsing a local DIY store in search of new wallpaper for the living room.  I remember the bright, twinkling lights from the Christmas decorations that were in-store, excited for the upcoming holidays.  We were browsing the aisles when out of nowhere, the dizziness came on out of the blue.  It felt as if I were moving in a room that was still and silent, even though I was actually standing still.  I remember being so afraid of falling, that I suddenly grabbed my Mum’s hand and squeezed so tightly as if it were the only thing that was going to stop me from floating away from my parents.  The increased  sensations of the weakness and trembling in my legs; worried that they were going to collapse.   I was so frightened; unaware of what was happening to me and unable to adequately describe the sensations or the experience of what was happening to me. I felt sick and very warm, and just felt an urge to escape the store and go back to the comfort and security of home.

I can still remember going back to the car, sitting down, but still feeling incredibly dizzy, which continued for some time after leaving the large store.  I thought how scary the whole experience was and that i wished so desperately for it to never happen again.  But as we all know, sadly it was not to be the last dizzy spell that I would experience; instead it would be the first of so many.  Dizzy spells that would not only increase in the frequency, but also increase in the severity, until I would live with it constantly as I am now.  Yes, I still remember….

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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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