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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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NHBPM Day Eight: O Health! What do I think of thee? Let me count the ways!

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Dear health,

I am not sure quite what to say to you, as I have never written a letter like this before but I will try my best.

I find you very odd; I experience so many fluctuations in my health and how I feel, and the severity in which I experience the symptoms that you cause me.  These fluctuations not only change day by day, but can also change hour from hour, or even minute by minute!!  And it’s these fluctuations that stops me from leading a normal life. This condition does not allow me the ability to make plans for nights out with friends, or holidays or full days out, as I never know how I will feel on that particular day, or even I am having a rare ‘good’ day, I have no knowledge whether it will remain that way, or if I will be taken ill sometime during the trip.

Living with you day-to-day is hard, and it’s particularly hard when questions are raised by others about you.  You are rare, and not understood, even doctors can be baffled by you.  This then causes the mammoth task of trying to explain you – what you are, how you affect me and so on.  I would wish no chronic illness on anyone, but one which is especially difficult as you are is particularly hard to deal with.  The loneliness and isolation that you cause, can often be overwhelming; no one can understand exactly how I feel, or what it is exactly like living with you.  There are no support groups for people like me, living with you, no friends who I can call on when times are tough and I really need to vent; I have several confidantes – some online, some I can see in real life, but still no one that can just get ‘you’ and how you treat me; how you affect me.

It can be hard finding the right support with a chronic illness – especially one which is rare

I have lived with you for so many years now; many of those years I did not even know of your existence.  Now, you are constantly making your presence felt, like a loud, harsh scream being blasted in my ear.  Every turn I make, you are their, like a shadow; a dark figure lurking, waiting.  And then within a blink of an eye, my legs will give out; lying on the ground, unable to get up due to the weakness in the legs.  You causing embarrassment; you causing injuries and pain.  The doctors tell me that there’s nothing that can be done – no treatments to help, no reigns that I can attach to keep you under control.  When I was diagnosed with you, at first there was relief – relief at knowing that there was a name for you; relief that finally I had validation from the doctors’ that you were very much real, and not in my head as it was often claimed.  Then, I have felt despair; despair at realising that there was nothing anyone could do to treat eliminate you from life.  It was like being blindfolded and then left in the middle in the centre of a garden maze where I am expected to find the exit without any guidance and without the ability to see exactly where I was going.

Life with a chronic illness…like navigating through a large maze!!

You have made me your victim, from something that I cannot escape.  Never will I escape you; you live deep within me, deep within my brain, there will you be there forever.  But I will not let you win, I will not let you beat me, and I will be happy despite you, that I am determined of.  Because of you, I have found inner strength, have found things that I am good at, and have found ways in which I can help others and participate in social activities and pastimes. Despite you, I have found friends whom I can talk to and despite the problems you cause, they like me for who I am, and look beyond my imperfections.

I may not be able to beat you, but because of you, I am stronger than I have realised; have made me aware that I can overcome certain obstacles and overcome challenges that come within my path.

And for that I thank you.

Rhiann x

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NHBPM Day Seven: The Ideal Doctor’s Office

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Thought this topic would be a great follow-up to yesterday’s post regarding advice for new doctors and nurses.  Today’s prompt asks us to redesign a doctor’s office or  hospital room.  Now, I am the least artistic person, so unfortunately will not be able to provide an illustration regarding the ideal doctor’s office – so imagination will be needed!

I am not sure whether I have mentioned that before the deterioration of my illness, I was able to graduate from University with a Bachelor of Science (BSc) in Psychology.  One lecture that I remember back then, is one on the psychology of colours and how colour can affect how we feel.  For instance, soft blues can make people feel relaxed and calm as it is associated with calm waters or clear skies.  Therefore, perhaps the ideal doctors’ offices should use light shades of blues, to calm and soothe patients, because as we all know visiting the doctor can provoke anxiety and fear, so offices need to have a relaxing and soothing effect on the patient.

An example of a relaxing doctors’ office! Much nicer than the sterile, stereotypical white walls, don’t you think?

 

Another important aspect to consider regarding doctor’s offices is the seating arrangement.  It is reported that when the patient is sitting opposite, a doctor whom is sitting behind a desk, patients report feeling intimidated, and the desk being perceived as a barrier.  Consequently, it is reported that the best seating arrangement is when the doctor and patient are sitting at a 90° angle to one another, known as the ‘corner position’.   It said that this arrangement is less threatening, and allows for good eye contact as well as having an opportunity to use gestures; it is meant for more casual, friendly conversation but is one with which the patient will feel more at ease with the doctor.

I know when I visit the doctor, I prefer those rooms which have a view, a window which allows a lot of sun into the room, makes the room feel fresh and light.  Air-conditioning is also an important issue to consider, myself I hate feeling too warm as it can exacerbate my symptoms, making me feel anxious and on edge.  I also find it helpful when there are lovely prints on the walls of nature or picturesque, idyllic scenes, and are especially useful when having a blood test and it gives the opportunity to focus on something other than the needle and blood!

That is all I can think of for the ultimate doctor’s office; a relaxing, calming space to ease the anxiety of having to go in the first place!! Is there anything else that I have missed – what would be your ideal doctor’s office?

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