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NHBPM Day Thirteen: Book Report! Tying it to my life!

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Welcome to another post for the ‘National Health Blog Post Month’!!  Today’s prompt asks us to write a book report and then how we can tie the book to our health or our life in general.

For anyone, who knows me, know only too well, I am a complete bookworm!!  I could happily spend hours and hours browsing the shelves of the local library or the book stores.   Books have that magical power to take us to different places, or during different times.  They can teach us about a whole range of topics; or get us discussing thought-provoking topical issues.  One of my favourite authors is Jodi Picoult; the author of around 19 books all of which are thought-provoking dramas examining topical issues, especially those with a moral or ethical dilemma attached to them.  What I love about these books is that they really make you think of not only the issue being examined, but also your own views of the subject, questioning even your own views – sometimes you may finish the book with a total different outlook than when you started!

And one of my favourite books of hers is the one that actually started my love of her writing; which is ‘The Pact’.

‘The Pact’ is a story of love and friendship; and examines whether parents can ever really know their children.  The book centres around the Hartes and Golds; neighbours for over eighteen years; in that time they have shared everything from a weekly get together over a Chinese to practically raising their children together.

After all the years of being the best of friends, then it comes to no surprise that two of their children; Chris and Emily also become great friends; that friendship eventually developing into love.  One night however, both families receive the same terrifying phone call – that both Chris and Emily have been involved in a shooting.  A shooting that claims the life of Emily due to a gunshot wound to the head, and Chris is also rushed to the hospital after a fall off a carousel.  The police find an unspent bullet in the gun that  belonged to Chris’s father – a bullet which Chris claims was intended for himself.  A suicide pact.

However, the police detective that is in charge of the investigation has doubts over the supposed suicide pact – instead believing that Chris murdered Emily after certain secrets cones to light…

And so Chris finds himself charged with the murder of his girlfriend, Emily and a courtroom drama ensues…

At the time I started reading this book, I was going through depression – I had no friends, no real life – if I wasn’t in school then I was stuck in the house with my parents; isolated and lonely, even when surrounded by other people.  Then there was the dizziness; at the time the dizziness began becoming worse; so bad in fact, that I was unable to go out without someone else with me; scared that I will fall. Endless trips to the doctors, and hospital appointments could not determine the cause, and so was again, told that the dizziness was essentially “all in my head.”

As you can imagine, this was not a happy time for me at all, and there were many times that I thought about ending my own life – I felt that everyone hated me, saw me a freak and felt that I was a burden on my parents and family.  This book changed all that however, like Emily Gold, I was an only child, and the reading the effects of her suicide on her parents in the book, made me think about my own parents and the effects that it would have on them if I did take my own life.  Reading about the devastating impact suicide can have on a family; the grief of losing an only child was heart-breaking to read, and made me think twice about doing so, as even if I died, there would be many people left who would have to deal with the consequences.

So, this boom, not only being a truly fantastic read, but it also kind of saved my life….

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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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NHBPM Day Ten: To declare or not to declare? That is the question…

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Welcome to the 10th post of the annual ‘National Health Blog Post Month’!!  One of the prompts for today, really caught my eye and thought it was a thought-provoking topic which could spark a lot of debate.  And the question is this:

“Should people post about their (or loved ones) health on Facebook?  Why/why not?”

So, what do you all think about the topic?  The immediate response, I thought was, “Well, if someone wants to post their health status on Facebook, then it’s their personal choice, right?”.  But, lets’ not all forget that once is something is on the Internet, and on social networks such as Facebook, it’s there forever; information that cannot be taken back or deleted.  I am sure that many people would not mind this, but just think that anyone in the future will be able to find this information when searching their name in a search engine.  Future partners, future children, even future employers. Perhaps, it doesn’t matter about future family members, but it may be that future employers finding about someone’s health status is a negative aspect of using Facebook to discuss health issues – employers may be unwilling to employ someone with a chromic illness; worried about the time they may need to take off, not being able to be efficient as someone who is healthy (this is of course, not always the case, but are often preconceptions that many people make, unfortunately).

Personally, I choose not to disclose a lot of my health issues and what I am going through daily on Facebook, as many choose to do.  I post links to blog posts, and little bits of information but instead I choose the privacy and security of support groups that I have found on Facebook.  These groups are completely private; and so anything that I choose to share in these groups are not added to my timeline.  This is my preference over adding comments regarding my health status and details of my health condition to the status bar within my Facebook Timeline, as for one it is completely private, and only those who I choose to share these details of my condition.  This is partly as there may be some people whom I am friends with on Facebook that I do want them knowing everything regarding my illness – the worry that they will share details of my condition with others, gossiping about me behind my back.  And then there’s Facebook ever-changing privacy settings – in the past I have had messages from friends that my privacy settings has changed so that their friends were able to see some of the posts that I have sent them after replying to their often question “How are you doing?”.  I mean, would you want strangers knowing the details of your health condition and illness?  Judging you when they don’t even know you?

But on the other hand, those who do write and share about their illness online who do fantastic work, and not only is it an outlet for the frustration and stress that living with a chronic illness causes, but it also helps others that are also  going through something similar themselves, and whom may feel lonely, like they’re only ones that are living with a particular condition, or perhaps are yet to be diagnosed and are looking for support from others – there are plenty of health activists out there who have gone many years searching for that definitive diagnosis – and there are still many more who have yet to be fully diagnosed.  Facebook and other social networks like it, are a fantastic tool for being able to find support, and network with other patients to not only find support but can learn from them about treatment options and so on – after all knowledge is power!

At the end of the day it is up to the individual whether they disclose their chronic illness or health conditions on sites such as Facebook, there are certainly pros and cons for both sides of the argument, but I would definitely advise to be careful about the information that they disclose and to also be vigilant regarding their privacy and security settings so certain information do not fall into the wrong hands!

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NHBPM Day Nine: This Community Care Package? Yes, please!

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Welcome readers to another post for the National Health Blog Post Month with WEGO Health!  The prompt that I have chosen for today asks to describe the perfect care package for members of fellow patients.  This actually for my particular condition, with a neurological condition is actually extremely difficult as patients with neurological conditions can be likened to snowflakes – every one different from the next, each one unique.  Not every patient will experience the same set of symptoms, so in reality each patient will need an assessment by social services to really determine the support that they require to live a more independent life.  But, I will talk about my personal experiences with Community Care Packages and what has worked for me personally.

I was assessed by Social Services back in April, and was then allocated my own social worker (whom was now changed!).  I would recommend anyone with a disability to think about contacting their local Social Services and getting themselves a social worker, as personally mine has been extremely useful such as advising me ways in which I can become more independent and self-sufficient as well as helping me sort out problems such as those regarding benefits for example.  My social worker kindly wrote a letter supporting my application for such benefits and thankfully has seemed to work, as I had a letter on the weekend informing me that they have placed me in the Support Group, without needing to attend a medical!  This is the first time this has happened as I usually am denied such benefits after attending a medical, which I have had to appeal on a number of occasions.

The most helpful aspects of my Community Care Package are as follows:

  • Access to ‘LifeLine’: Due to many of the aspects of my condition – the constant, dizziness, episodes of vertigo as well as the weakness in my legs means that I am at risk at falls.  In fact, I am constantly at risk of falls, and often experience many throughout the day (especially on very bad days!).  And very often because of the weakness in my legs and arms, I am not always able to get up without assistance from another person.  Now, although I live with my parents, due to work commitments, they are not always at home.  So, this is where ‘LifeLine’ come in very handy, as it’s a medical alert service: It works by whenever I have a fall and cannot get up, or if I become very unwell, all I have to do is press a button which is on a chain worn around the neck.  The receiver will then connect through to a call centre, who will ask me what has happened and if I need assistance.  They will then contact one of the three emergency contacts that I provided to them; and if no one can be contacted they will then alert the emergency services.  As you can see , it can be a fantastic support system for those who are frail, the elderly or the disabled who are at risk of falls and accidents; it really gives a piece of mind, for not only patients but family members as well
  • As part of the Disability Team of my local Social Services, they have a Social Inclusion Officer; a designated social worker who is responsible for initiatives that support those who may be socially excluded from the wider community.  Those who, like myself have difficulties with being independent with going out and accessing local groups and amenities.  It was thanks to this initiative with my local council that I was able to find a group like ‘Life 4 Living’ and being able to get together with other people for a few hours.  Now, being the group’s secretary has really brought me out of my shell and given me confidence!  Initiatives like these really work and offer a fantastic lifeline for those who may be stuck in the house alone for long periods; giving the opportunity to not only have fun but also the opportunity to socialise
  • Access to mobility aids can be a real benefit for disabled people.  They can obviously be purchased, but often are very expensive, so as part of the perfect community care package would definitely be an access to various mobility aids that will help and support the individual patient to not only mobilise better but also be able to be more independent.  As part of my community care package, I was offered a perching stool so I am able to sit down so I can safely do some cooking independently.  I was also helped to apply for a wheelchair, which due to the weakness in my legs stops me from being able to go out for long periods of time.  Now, with the wheelchair I can go out without the worry of my legs collapsing from under me, and can even go out for longer! – bring on those long shopping trips and days out!!   Although, if it were up to me I would make these mobility aids more fashionable especially for people around my age – available in lots of different, bright colours such as pink!
  • Direct Payments: Also, as part of my Community Care Package, I was advised to pay for Direct Payments, which according to the Welsh Government:

This enables individuals to purchase the assistance or services that the local authority would otherwise have provided.  Direct payments support independent living by enabling individuals to make their own decisions and control their own lives.

Direct payments have gradually been extended to include:

  • older people;
  • carers;
  • parents of disabled children; and
  • disabled adults.

Thanks to the Direct Payments scheme, I have been able to employ a Personal Assistant, specifically to help me get out of the house and go shopping for items that I need, or for trips to places that I wish to visit.  This is a fantastic scheme, as it allows people like myself to lead a more independent lives and to be able to have help doing things that they wish they could do or go places but haven’t been able to because of individual circumstances.  Having a P.A. means that I can live more independently, go out more and be less dependent on my poor parents!

So they are aspects of my ideal Community Care Package for patients like myself.  Readers, what do you think of this package, are there services that I may have missed which could help patients like myself?  Please share any ideas or stories that you may have regarding Social Services and Community Care Packages!

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