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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 Fourteen: Anatomy Post – Affected by my Symptoms

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Welcome everybody; am writing this post on a quiet Sunday afternoon.  For today I have chosen a short prompt as this particular day I really am not feeling well.  I have chosen a prompt from an earlier date.  In the prompt entitled ‘Anatomy Post’ it was asked that we re-labelled an anatomy picture with new names or descriptions the body parts.  I have chosen to label the different parts of the body which are affected by the differing symptoms that are caused by my condition; some of them are invisible such as the dizziness and vertigo so I have used the body part in which these symptoms originate (i.e. the brain).

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NHBPM Day Twelve: Invisible Disabilities vs. Visible Disabilities

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Another day, and another blog post as part of the annual WEGO Health ‘National Health Blog Post Month’.  Again, I have decided to use one of the bonus prompts provided for today’s post.  The prompt that I have chosen really caught my eye; and even more so now, as before my condition deteriorated and started using mobility aids such as my trusted crutch, my condition was very much invisible – even when I am not using the stick, you would never realise that there was anything wrong by looking at me; some may say that I look perfectly healthy.  However, slowly and surely it has become more evident that I do have a disability – from using my crutch, to my unsteady gait.  And now, when I am out and about for long periods, I have the use of a wheelchair.  So now my condition/disability has gone from invisible to become a visible one.

 

 

Which got me thinking about the pros and cons of both invisible and visible conditions/disabilities.  If you were to become ill – which would you prefer a visible one or an invisible one?  Let’s discuss some of the advantages and disadvantages of each…

For starters, in terms of invisible conditions, in my opinion you are much more in control regarding the disclosure of the condition to others, whether it be friends and acquaintances, or employers.  Some conditions can produce symptoms which may be embarrassing and hard to talk about; or perhaps the condition is difficult to explain; or the disability may have a huge stigma attached to it, such as fibromyalgia or major depression.  However, as these are invisible, then you are under no obligation to disclose such information to avoid such discrimination.

However, those with visible disabilities, obviously have no choice but to disclose the exact nature of their condition, as unlike with invisible disabilities, those which are visible are immediately obvious.  This then causes a lot of questions to be asked, and one of the cons of visible disability that people may immediately judge the individual’s abilities – which of course, may be completely inaccurate.  They be patronising and condescending towards the individual; treat them as they do not have a brain or a child that needs to be handled with kid gloves.  For instance, last week saw the first time I needed to use my wheelchair for an extended period of time, and found that in some shops they spoke to my personal assistant than myself, as if they thought that because I was in a wheelchair and obviously disabled than I didn’t have a brain and couldn’t speak for myself!

So, a major pro of invisible illnesses is that people treat you like everyone else – obviously as they have no idea that there is anything wrong.  There are no judgements made about the abilities of the individual.  The individual is seen for the person they are instead of the condition that they have.

However, on the other hand, life with an invisible disability is hard; if people in their life know about the condition, then it is often the case that those people are suspicious of the invisible disability or condition as they are no outward signs that there is anything wrong.  People often assume that as the person appears normal and healthy than there couldn’t possibly be anything wrong; that it must ‘be all in their head’.  Invisible disabilities and conditions are very often misunderstood and stigmatised; even doctors are often sceptical when patients exhibit symptoms such as stomach aches, dizziness; symptoms whose outward signs cannot be seen, and are subjective.  When I presented with dizziness, and no cause could be found (not that they really tried searching for answers) then they came to the conclusion that it was due to psychological factors such as anxiety and stress that was the cause.  These assumptions are often made by doctors whose patient has an invisible condition; and which often leaves them waiting a long time for a diagnosis.

That must be another pro for the visible disability side – it must be the case that visible disabilities are much easier to diagnose – as there is that outward sign that there is something wrong.  An advantage in that there are no suspicions that the person may be faking or exaggerating their symptoms.  Although, many places within the UK may disagree as there have been reports attacks against disabled people have increased, when I used the wheelchair however, I found that people were incredibly friendly towards me, and more willing to help, such as opening doors for me, shop assistant more willing to help me find what I needed from the store as well as helping my personal assistant to lift my wheelchair onto the pavement when there were no flat ramp.

I would love to know all of your thoughts – imagine you were to have a chronic health or disability – would you rather have one which was visible or one which was invisible?  And why?

Or are there any pros and cons that I may have missed? Let me know!

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NHBPM Day Eleven: My Favourite Thing….

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Another day, and that means a brand new post as part of the WEGO Health ‘National Health Blog Post Month’.  Today, is a diversion from discussing life with a chronic illness and health, as the prompt that I have chosen (as we get a choice between 2 prompts) asks us to discuss our favourite thing that is not health related nut likely improves our life.

For me, my favourite thing, and one which improves my life is my brand new iMac.  It really has become the centre of my universe, and one which I spend the majority of my time!  Although, admittedly many of the reasons are health-related!!  😉

I am sure those of you reading this and who are too suffering from a chronic illness or disability will ne able to relate – when one is sick, the computer, whatever the make and model, becomes a real lifeline.  I know there are a lot of people, many of those who are completely healthy that also claim that their computer is their ‘lifeline’, but in my opinion it is more true for us who are crippled by illness, often we are unable to go out and instead stuck indoors, often alone and without company.

In this instance, my computer has really become the centre of my social life!  Not being able to go out, particularly alone, has meant that through my computer and the internet, on social networks such as Facebook, Twitter, as well as Skype I am able to keep in touch with friends and family.  The computer and internet, also allows me to write this blog, as well as finding any pieces of information regarding my condition – any tidbits of information that I can gather to not only to learn everything there is to know (which isn’t a lot!! – pitfalls of living with a rare condition) but to also find anyways that I can help myself to get stronger, or any treatments that may help control the symptoms that I experience.

And then there are the opportunities to connect with others with similar difficulties that I face, the opportunity to join and explore different support groups; to connect with others, whom although might not have the exact condition as myself, but know exactly the difficulties I face, and can relate.  This is support really is invaluable source, as it enables you to talk to others who are going through similar experiences whom you can vent to, from others who understand and can give you great advice when you really need it.

Finally, as I am not able to go out that much, or if I do, am often unable to spend a lot of time out, so the computer and my internet connection allow me to browse all my favourite stores and brands.  If I need something, or need some new clothes, I can shop in the comfort of my own hom; without the worry of the possibility that my legs may give way, or struggling with the dizziness.  I don;t have to carry heavy bags around, that cause the discomfort in my arms; I can safely buy what I need (or want!) and can have it sent directly to my home.  This is one aspect where my computer really makes my life much easier!

Not only my iMac is great for going on the Internet and connecting with others, but on those bad days; the ones where I am stuck in bed as my legs are so weak that I can hardly stand, the computer can transform itself into an entertainment centre!! Recently, I purchased software for my iMac; software which has the ability to turn on my computer into a TV!!  Thanks to a USB dongle, I am able to receive Freeview channels, and also have the ability to record programmes that I wish to watch.  And there is good all iTunes!!  I have quite a few series saved onto the hardrive that I have downloaded direct iTunes – so I also have the option to watch one of these when I am stuck in my bed.  Of course, there is always the DVD player; to play the endless number of films and television boxsets that I own.  All these are great for keeping me entertained whilst unwell; often feel that when I watch these I have company and don’t feel so alone.

So, these are the reasons for my iMac being my favourite thing that I own and although not health-related makes my life easier and probably happier for it!

What is the one item that you own, which is your favourite, and why?  Would love to hear you stories…

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