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NHBPM Day Twenty: Regrets? I’ve had a few…

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Today, is all about the moments that as health activists or as patients we regret.  The moments that looking back on, we wished we had done things differently.

Mine happened during my first year at University.  Around this time the dizziness was becoming increasingly worse, and was also experiencing at the time periods where I was fainting and losing consciousness for a few minutes.  This obviously caused some alarm, not only for myself but also for my parents.  I found myself on a couple of occasions I fainted whilst out walking the dog; waking to find Honey looming over me, licking my face, trying to make me come to!

 

 

After a couple of these episodes, my parents and I made an appointment with the Doctor; he checked my blood pressure, which has always been low, but he wasn’t overly concerned, and didn’t think it was the cause of these blackouts.  He then referred me to see a consultant at the local hospital, but warned me that it would be a wait.  He suggested that if I experienced another episode then I should visit the ‘Accident and Emergency’ department of the local hospital, which may fasten the process.  A couple of weeks later, whilst out with a meal with Mum, I fainted whilst in the bathroom, and so she phoned my Dad, who then came to pick us up and drove us to the hospital.

It wasn’t long after that, I received a hospital appointment with a consultant.  It was in what they called the ‘Day Hospital;, an outpatient department with beds, where if needed you would need to stay there all day to go through endless tests.  Thankfully, I wasn’t there all day, but he examined me throughly, and noticed a couple of abnormalities with my legs, exaggerated reflexes, I think was  the concern.  It was then he referred me for a CAT scan of my brain and spinal cord, as he suspected that it may be caused by some sort of neurological disorder.  After the appointment, I went home, and like most people I googled about the procedure.  It really didn’t seem like such a big deal, but at that time the dizziness was so bad – and was quite bad when lying down staring up at a ceiling, which obviously happens during a CAT scan.

A CT scan

 

Anyway, a few weeks later the appointment came through – my Mum was working so it was Dad who accompanied me.  I admit, that all hospital tests and procedures scare me a little, and was particularly worried about this one, especially as my Dad wouldn’t be able to come with me as CAT scans uses radiation, and I did work myself up because of my anxieties.

I worked myself up so much that I had a panic attack after lying on this small, narrow bed that would be used during the scan, I just felt incredibly dizzy, and didn’t like how open the room was; it felt like I was going to fall of the bed or something!  I just couldn’t go through with it, and so the test was cancelled and I went home.  The tension in the car on the way back home was horrific; Dad was so angry, especially as the trip was wasted.

Looking back on it, that was my one big health moment that I regret.  Not only did I waste my Dad’s time but also the hospital’s time – that cancelled appointment could have been used for someone else that needed it; wasted resource that would surely cost the NHS.  But I also regret it because there was that possibility, that they could have found what was wrong with me a lot sooner – I wouldn’t be diagnosed for at least another four years after that.  Maybe I couldn’t go through with it as at the time I was scared about what they would find; maybe I was not emotionally ready to find out what was wrong with me.  Although, perhaps if they had found out the cause sooner, especially the problem with my legs, then I could have entered physiotherapy a lot sooner, and perhaps my legs would not be as bad as they are now.  But now we will never know; there will always be that ‘what if’…

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NHBPM Day Eighteen: How should I care for someone with your condition? Well, you should….

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Welcome to the 18th post of the ‘National Health Blog Post Month’ – so we’re just over half-way through the month-long writing challenge!!  Today’s chosen prompt asks us to write a post giving advice to a caregiver whom is caring for a patient with your condition.

I thought this was a great post when I read it – often caregivers are the forgotten ones in terms of health activism and general writing regarding chronic illness – so thought it would good to write a post which acknowledges the caregivers and to give them advice which would help them care for another patient like me.  However, it could also be somewhat of a challenge, also, especially considering that my condition is unusual – not knowing other patients with the same condition means that the advice I will give will only be from my experiences and viewpoint.

1.  Try to UNDERSTAND!  Perhaps the most important advice that I could give for any caregiver.  The condition which I live with is unusual and rare, so it may be useful for        caregivers to learn about the condition – about the potential symptoms and effects that it can have on the patient; about any possible deterioration that the patient may experience and any signs that they should look out for.

If, like myself the patient has a personal assistant than that person may want to ask the patient questions about the condition, and all of the symptoms that the patient themselves experiences, and how they can help overcome some of the difficulties experienced during the time they spend with the patient.  Find out the needs – for example, I often when using my crutch like to hold onto the arm of the person with me, to help keep my balance and to prevent falls.  It is imperative for caregivers to find out the needs of the patient before all else, to let the patient have semblance of control over their lives.

 

Understanding….

 

And it also is important to remember that the condition like the one I live with can be very unpredictable – and often means that 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.  I love to do these sorts of things on bad days when I am stuck inside with my Mum 🙂

2.  Always be NON-JUDGEMENTAL: Like myself, I have many different symptoms that I experience as a result of the condition, including dizziness, vertigo, weakness in legs (often resulting in many falls) and so on.  Often, these symptoms, just like the condition, itself can be difficult to understand; because of the dizziness and vertigo as well as the visual disturbances, it can cause me often to become very anxious and panic; so caregivers must not only be understanding but also non-judgemental and patient.  To help keep me calm and relaxed when out; to keep the effects of the symptoms under my control, instead of the other way around.

Always listen…

 

It is also so important 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.

 

A perfect present to show how much you care!

 

3.  To HELP with certain tasks that the patient no longer is able to carry out themselves.  This would be very helpful for the patient; it can be very detrimental to one’s mental health when you struggle with certain tasks which used to come naturally.  So helping the person with the condition, would certainly be helpful for the patient – we would certainly be very appreciative of any help that can be provided!  And will also help us to save our spoons!

4. To keep a list of contacts somewhere accessible in case of emergencies – including doctors telephone number, emergency contacts and other information that will be useful.  This is useful when dealing with conditions like mine, where falls and accidents can very easily occur.  I have certain telephone numbers that I can ring if I hurt myself or an emergency crops up when I am on my own.

Keep those emergency numbers handy….

 

If the patient has deteriorated and mobility has become severely affected; falls and accidents are becoming more prone than I would definitely advise getting a social services assessment done as they can provide excellent resources and can offer assessments for adaptations for the home if needed, as well as offering services such as ‘LifeLine’ where emergency contacts can be alerted in the event of a fall or some other accident.  They can provide peace of mind for carers when they need to go out but are worried for the patient’s well-being.

4. And lastly, it;s important for carers’ not to burn out themselves so I would advise for them to take time out for themselves – perhaps, join a support group for other caregivers’ or take up a new hobby or past-time.  Generally keep fit and healthy so that you are able to provide the care that the patient needs.

 

So there are my top tips for any potential carers’ for a person with my condition – or any similar to it!  What would your top tips for carers’ or loved ones’ be?

 

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NHBPM Day Seventeen: Health Playlist! My Condition in Song!

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Welcome to the 17th Post for the annual ‘National Health Blog Post Month’ – and the prompt I have chosen for today is a really fun post!  We have been asked to make a playlist for our health community!  I thought I would include some songs which tie in with the symptoms I experience (as I will find none relating to the condition itself!), or lyrics that I am able to relate to.

1. Tommy Roe – ‘Dizzy’

This is quite obvious why I chose thing song, as it’s plainly obvious by the blog and previous posts, that dizziness is the main symptom that I experience on a daily basis, and can really relate to the lyrics “I am so dizzy, my head is spinning, like a whirlpool it never ends…”  None of the other lyrics really apply to my life, but those lyrics really describes my daily life!!

2. Tenth Avenue North – ‘Worn’

I found this on another fantastic blog, I read, and when I listened to the song, I immediately fell in love with song and its beautiful lyrics and downloaded it straight away!  It can really apply to any illness or condition, and can really relate to the lyrics, which include “I know I need, to lift my eyes up, but I’m just too weak…”.  Great song!

3. Katy Perry – ‘Part of Me’

Although, many pop lyrics pertain to relationships and love, if you look beneath the lyrics, they can really be applied to any situation.  In the song, Katy sings “This is the part of me that you’re never going to take away from me”, and this really applies to all of us battling chronic illness, no matter what form that takes.  We may wish that it could be taken away, but with a condition, like me, it is a part of me, something that cannot be removed…

3.  Les Miserables – ‘I Dreamed a Dream’

I watched the musical from its 25th year Anniversary at the O2 Arena in London about a week ago, and found it to be the most beautiful and breath-taking musical, most of us are familiar with the song ‘I Dreamed a Dream’ thanks to Susan Boyle after she famously sang it at her audition on Britain’s Got Talent.  I instantly fell in love with the musical and its songs, and ‘I Dreamed a Dream’ can be one in which chronic illness sufferers can relate – well kind of!  All of us battling illness everyday, am sure is a million miles away from the ambitions and life they had imagined; dreams which because of illness hasn’t been able to come to any fruition.

4. Kelly Clarkson – ‘Because of You’

I mentioned this song in a previous post about the song; how I related the lyrics to the dizziness and how it males me feel.  You can read that particular post here.

A Little Playlist to remind all chronic illness sufferers how special they are and to encourage them to keep strong!

1. Bruno Mars – ‘Just the Way You Are’

2. Kelly Clarkson – ‘Stronger (What Doesn’t Kill You)’

3. Avril Lavigne – ‘Keep Holding On’

4. Christina Aguilera – ‘Beautiful’

5. Gavin DeGraw – ‘I Don’t Want To Be’

6. Lady Gaga – ‘Born This Way’

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NHBPM Day Sixteen: What would it be to travel with this condition?

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A brand new day, and a brand new post for the WEGO Health ‘National Health Blog Post Month’.  Today is the 16th day of this month-long writing challenge; and once again I have chosen to write a post based upon one of the bonus prompts provided.

The topic I  have chosen as you may have guessed by the title is travel.  The prompt asks to write about what it is like to travel with your condition.

Admittedly, I haven’t actually been on holiday for around six or seven years (it’s actually been so long since I have been on holiday I cannot actually remember the year I last went on holiday!).  Instead, I have decided to write a post on some of the challenges, I would face if I were to go on holiday – and if anyone has any ideas on how to overcome these challenges, I would love to hear them, so get in touch via Twitter, Facebook or email, or add a comment to this post!

If I were to go on holiday, my dream holiday would definitely be Italy – I love the food, and it just looks like such beautiful scenery.  I have especially wanted to go and visit the country after watching the film ‘Letters to Juliet’ – especially, as the beginning of the film is set in Verona, which is the place within Italy I would most like to visit, as Romeo and Juliet happens to be my all-time favourite play, and so would love to visit the balcony etc!

Some of the scenery in Verona

So, what about some of the challenges I feel, I would face whilst travelling.  For starters, if I had to fly to go overseas somewhere, it would not in fact flying that would prevent me from doing so, but instead the airports themselves!  If you have been reading my posts, you would know, that I have problems with high ceilings, as they increase the severity of the dizziness, and also increase the incidence of the episodes of vertigo.  Obviously, most airports have high ceilings, so spending time in such a place for approximately 3 hours (not including delays!) would be incredibly difficult for me, and would certainly make me feel incredibly unwell – all before even leaving the UK!!

So, what are the other options – I know that local bus companies offer a holiday to Lake Garda, including a trip to Verona; or perhaps an option would be a cruise?  However, my fear there would be all the motion from the bus or cruise ship would also make me feel very unwell, and could potentially make the dizziness or vertigo even worse.  My balance is incredibly poor on dry land, so i can only imagine what it would be like on a ship!!  Then there’s the weakness in the legs, recently, I was invited to a meeting regarding the introduction of a Life 4 Living group elsewhere in the South Wales area, and was collected by a Social Worker who runs the group in Pontypridd.  I cannot remember how long we travelled for, but it must have been over an hour – and by the time we arrived at the venue, my legs were so weak, and incredibly stiff, and was in a lot of discomfort afterwards.  And this was only after an hour, goodness what I would experience after several hours travelling on a bus.

Another potential problem is the unpredictability of the condition; never knowing which days I am going to be well, or even how I will feel an hour from now.  It would be a shame to spend a lot on a holiday only for me to be laid up in bed for a day or two; it would feel like a wasted trip especially considering the costs involved with holidays.  Often, the symptoms are often exacerbated by fatigue and overexertion (too much walking for example), and very often on holidays, there is a lot of walking involved, whilst sightseeing and many people report feeling fatigued whilst on holiday or immediately after – so what would a holiday do to someone like myself living with a chronic illness.  I would certainly have to use a wheelchair that has been recently been given to me, although before I even think about going on holiday with it, I will really have to learn to be able to get used with using the wheelchair (at the moment I am having trouble adjusting to it – but will save that for another post!) in places that I am familiar to, before going somewhere unfamiliar.

I know a lot of people, often spend holidays lying on the beach or around the pool at the hotel they are staying in, but that has never really been me – I have always preferred to go out and soak up the atmosphere and culture of the place where I am staying.  I love to go and experience local museums, art galleries, or other tourist attractions – I would much prefer to be doing something rather than just lying around somewhere – even though it has become more increasingly difficult as the illness has progressed, becoming worse and its symptoms becoming more evident.

What are your experiences of travelling with a chronic illness?  Are there any tips that you could share that would make it easier for someone living with a chronic illness to travel and go on holiday?  Share your thoughts!

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NHBPM Day Fifteen: Wish my Doctor would use social media!!

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Welcome to another post for the ‘National Health Blog Post Month’…. and today’s topic is whether healthcare professionals, such as Doctors should embrace social media.

As most of you are aware, I live in the United Kingdom and social media is not really used by healthcare professionals as of yet.  I believe they should – many brands and companies have already embraced the role of social media to engage consumers and to make them aware of products and special offers.  So why not healthcare professionals?

Many healthcare companies and charities associated with various conditions and disabilities have already started using social media to get the word out – to educate and inform existing followers whilst also attracting new followers/patients.  Social media can allow these healthcare companies and non-profits to connect and collaborate more effectively with each other and their communities.  It is a tool for change and awareness.

Already, some healthcare companies have started using technology – for example, certain pharmacies in the UK have started using text messaging services to let their patients know when their prescriptions are ready for collection – very useful for patients who may due to their condition, or side effects from medications may forget necessary details such as this.

I am aware, that a small number of healthcare professionals in the USA and other parts of the world have started using technology and social media to communicate with their patients, such as using email to converse with patients regarding health matters, using social networks such as Twitter to track disease trends.  However, these instances are not common amongst most doctors – many still prefer the old pen and paper approach to keep track of patients medical records, and when technology are used it is only to communicate with other doctors, or to update medical records, and not used to communicate with their patients.

However, I believe that social media will be an effective tool for doctors and other healthcare professionals as well as their patients.  Most appointments, whether it be at the local G.P’s office or at hospital appointments, are approximately 15 minutes long (some appointments can be even shorter than this!).  For most patients, this is not enough time to effectively discuss issues and problems associated with their particular health concern, particularly with the more unusual and complicated conditions.  In these circumstances, patients are often too aware of these short appointments, pressurised to be as quick as possible, that important details and questions may be forgotten about.  Be honest, how many times have you gone home from appointments only to remember and wished that you asked that certain question or thought “I really should have mentioned about that…”  And added to this, the long-waiting times to be able to get another appointment with the doctor – therefore, social media would be a great tool for both healthcare and professionals and their patients to converse between appointments and to get more immediate feedback when problems do arise, and before they become a real problem for the patient.

And what about those patients who may need to speak to a doctor but who may not have the ability to physically access their local doctor’s office?  Skype, could be the answer to the problem.  Recently, I read an article about this very issue – utilising Skype as a means to cut the large cost that missed appointments cost the NHS every year – you can read this article here.  As the article suggests, Skype may be a great tool when there is no reason that the patient will need a physical assessment; to be used when information and advice need to be given.

I know for me, there are often instances where I am confused or bewildered by medical stories entering the mainstream news – often stories may contradict earlier advice that has been given.  This is where Twitter can be useful – doctors will be able to tweet those articles and news stories which have more scientific merit than others, as well as providing useful context and meaning to these items.  Furthermore, the internet, although can be incredibly useful for finding information and support, the information however is not always inaccurate, so for doctors and leading healthcare professionals to remain the leading authority on medical matters, it would be useful if doctors used social media as a means to dispel myths and provide accurate health information to those who may use search engines to research reasons behind symptoms or looking for more information on health conditions.

And perhaps most importantly, social media can also provide the opportunity for doctors to listen to patients concerns and frustrations regarding healthcare and policies surrounding healthcare.  By listening to patient feedback, doctors can adequately adjust the way in which they practice medicine.

However, although social media would certainly improve the quality of our proceedings with healthcare professionals, it should also be wise to mention the disadvantages and pitfalls for using such technology.  The problems include:

  • Issues surrounding patient confidentiality – nothing is forgotten on the web, meaning that medical information on patients’ could be found with a few clicks on a search engine
  • If technology such as email or social media sites are used to converse between doctor and patient; then important medical information may be forgotten to be documented in the patients’ medical notes
  • Worries about potential legal lawsuits being pursued if wrong information is provided, etc
  • The possible blurring of boundaries between patients and doctors when using social media; would you want to ‘befriend’ you doctor on social media – them knowing what you get up to as well as embarrassing stories, etc?

These problems are certainly well-founded and may harm the doctor’s professional reputation as well as having the potential to harm patients.  I suppose we will have to weigh up the pros and cons of using such technology and any solutions that can be utilised to minimise these risks….

 

 

So, what are your thoughts on healthcare professionals using social media as a way of communicating with patients?  Are you for or against?  And why or why not?  As always would love to hear your views on the topic.

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