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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 Six: Attention New Doctors!

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Today I have decided to use one of the bonus prompts provided by WEGO Health.  The bonus prompt asks us to provide advice for newly qualified doctors and nurses.

I am sure that many of you reading who are also battling chronic illness, have all had negative experiences concerning doctors – those who don’t listen to the symptoms you are experiencing daily, perhaps brushing them off as psychosomatic.  Doctors who are constantly checking their watches for the time, due to the limited time they do have with patients.  Doctors who just fail to listen to their patients; not listening to their situation or concerns regarding their health.

So, wouldn’t it be great for patients such as ourselves to be able to advise new doctors and nurses on the care that WE would like to experience from them.

So here are my top tips for new doctors/nurses:

  1. Take an interest in your patients; learn our names and get to know our likes and dislikes, and everything there is to know about our health condition.  I think we would all agree that going to the doctor’s office is not a pleasant experience, and we all could think of many different activities that we would rather do than visiting our doctor.  So, consequently, it would be great to have a doctor who is warm, friendly and actually has an interest in us; a doctor who doesn’t simply see us as a set of symptoms.  To have a doctor who is warm and friendly are important qualities to be able to establish rapport with another person, and if patients are able to build that rapport; then it is that much easier to open up to them and talk about everything that is  going on with their health.  I know I haven’t been able to get on with certain doctors at my local surgery and as a result I hadn’t fully opened up to them, of all what I was experiencing due to embarrassment and fear of not being believed.
  2. One of the most important tips that I could give to a newly qualified nurse or doctor is to simply LISTEN to their patients!  I have had so many experiences with doctors whom didn’t listen to what I was telling them, and instead just heard what they wanted to hear or simply made their own assumptions.  With so many years living with dizziness, many of the doctors that I have seen over the years, after failing to find a cause for it, just assumed that it was a psychological issues – and each time I challenged it by stating that although anxiety is a factor, the dizziness always comes on before the anxiety – but each time I told the doctors, I was simply short down and again it was reinforced that the dizziness was “all im my head”.  So, listen to your patients, after all we know our bodies more than anyone else, even someone with a medical degree – and know when there is something wrong.  And believe them – and fight for us, fight to get answers, even when all tests come back ‘normal’, don’t give up!
  3. It can often be intimidating and frightening visiting the doctors’ office.  And this is more often the case, when the office is obviously belongs to a doctor – the stereotypical white, sterile room with the obvious medical paraphernalia.  So, try to make is as welcoming as possible, a nice pot plant, pretty prints for the walls, and perhaps if possible, paint the walls a neutral colour to make the room appear bright, warm and welcoming.
  4. Refrain from behaviours such as checking your watch every few minutes as this can be distracting to the patient, and in addition can appear that the doctor does not take an interest in the patient
  5. Be upfront and tell the patient all of the information regarding tests results and so on – This is for me is one of the most important tips that I could offer a new doctor or nurse.  There really is no point, in my opinion, to sugarcoat information – the patient has to know everything there is to know so that they can make an informed decision.  I remember that I only found out about part of my condition, the spastic paraparesis after reading about it on a letter that the consultant had sent my G.P.  This consultant had never mentioned about this during the appointment I had with him, and if I had not read the letter, then I would not know anything about it.  And if I hadn’t know about it, and after searching about the condition online then I would have been very worried and distressed when the condition in my legs started to deteriorate as I would not have had a clue what was going on due to the lack of information!!  So please, newly qualified doctors, make sure to tell your patient all there is to know regarding the results of tests run, or even regarding the condition that has been diagnosed so the patient knows exactly what to expect.

And there are my most important tips for newly qualified doctors/nurses to make the experience for patients the best it can be!  And to make the patient feel at ease from the first visit.  Are there any other tips that you can think of, that you would like new doctors to take on board?  Feel free to add them to the comment section.

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NHBPM Day One: Why I Love the World Wide Web!

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Think back fifteen years, its 1997 and the internet was still in its early infancy and was just starting to take off.  Being chronically ill or housebound must have been really lonely and isolating – being stuck indoors with only daytime television for company…

Fifteen years on however, the internet is just another part of our everyday life, a lifeline for ‘spoonies’ everywhere; it’s a connection to the outside world, a place where we can meet and talk to others.  The internet is an invention that has meant that the chronically ill and housebound need no more have those feelings of loneliness and isolation.

We need no more rely on others to go shopping for us – it can all be done with a few clicks of the mouse, which can then be delivered to our front door.  Even those who are chronically ill and are able to go out but are easily fatigued can access online shopping and save their spoons for other chores that need to be done.

Another advantage is the explosion of social media – sites such as Facebook, Twitter, Pinterest and others are a fantastic opportunity to connect with others, or stay in contact with friends and family if you do not get the chance to see them regularly.  It’s a lifeline for those nights plagued with insomnia, unable to sleep, and unlikely to be able to due to the severity of the symptoms, before it would mean sitting alone with a mug of hot chocolate in front of the television, but since the invention of social media you can always find someone online to talk and vent your frustration with.  It has become so easy to find new friends with sites such as Facebook, and since starting this blog and taking advantage of social media; I have met and made contact with a lot of fantastic and beautiful people, each battling with different illnesses but meanwhile writing and spreading awareness for their particular cause.   I have also come to love sites such as Pinterest, which allows the opportunity to ‘pin’ those images that you love to pin boards – I often use this tool for saving certain crafts that I love the look of and would love the opportunity to try them for myself – also giving me something to keep myself occupied during those times when I am alone in the house and looking for something to do

And online health communities are definitely an advantage for those of us battling chronic illness – it provides somewhere to connect with others with the same condition, or perhaps neurological conditions in general, as an example.  Connecting with others on particular online health communities can also mean for the newly diagnosed they can find information and tips for living well with the illness from experts – other patients!  Certain health communities such as ‘Patients Like Me’ even offer the option to track your particular health condition by filling out questionnaires on how you are feeling and by detailing the severity of the symptoms being experienced.  This obviously offers many advantages, one of which is being able to easily spot any deterioration in symptoms experienced, and noting any progression in the condition, especially if it is one that is degenerative.

There are so many wonderful reasons why I love the internet, social media and online health communities – these tools for everyday life has simply transformed the lives of so many, making life more enjoyable and less isolating!

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