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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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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 Five: Giving Thanks!

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Today’s prompt is all about giving thanks for what we are grateful for; or what we are excited about or inspired by.  Thought I would cover all three!!

I am grateful for…

  • Firstly, I would say that I am grateful for the good days that I do have.  The good days seem to be rare these days, but I am grateful for when they do come around.  Having some many bad days, and feeling unwell, fatigued and weak; as if though if everything is an effort; so when good days present themselves, boy are you grateful!!  Having a little more energy to do chores, legs being stronger, and not as dizzy is a real blessing; and means that I can accomplish more and manage to have a little bit of fun!!
  • My new wheelchair: I am giving thanks to this new mobility aid, as it will enable me to be able to get out of the house a lot more, and more importantly it will enable me to stay out for longer.  Before I acquired the wheelchair, I was only able to go out for short periods of time due to the severe weakness in my legs, and especially as they give way if I am on my feet for very long.  Therefore, much of my time was spent in the house, much of the time alone.  Now I have the wheelchair however, I can go out for full day trips taking in shopping, or local tourist attractions.  Looking forward to it!
  • My family and my dog!: They have to be the biggest thing that I am grateful for – whenever I am unwell or feeling down, they are always there to pick me up and comfort me.  If I need something or need to go somewhere then they my parents will pick what I need up when they are out, or take me to appointments or wherever I need or want to go. They are all simply the best!

I am inspired by:

  • Other bloggers: I love to read other bloggers and health activists blogs.  Every one that I read are truly inspiring and shows a lot of strength and courage to spread awareness of their particular condition, as well as talking and discussing the painful or unpleasant symptoms that each of us face.  It would be so easy to just simply hide away and curl up in the duvet when chronically sick, but all health bloggers and health activists want to make people more aware and to understand their particular health condition (or the condition their loved one is faced with) and to provide support to those who are also living with the same condition – truly an altruistic act!
  • Reading – I absolutely adore reading – especially as my mobility problems have become worse and cannot move around as easily, so is truly blissful to be able to snuggle up with a great book.  Love those books that are able to transform you to different worlds, or experience other cultures – sometimes it’s as if you are taking a holiday without leaving your home!
  • Nature: I love how beautiful nature can be – the bright bold colours of flowers such as sunflowers or peony daisies, the different patterns and colours on butterflies.  Research has also found that flowers can actually reduce depression! Now if that isn’t a great reason to buy some flowers for a sick friend, I don’t know what is!

I am excited by:

  • I absolutely adore the writer Jodi Picoult and actually own every one of her 19 books, so one thing that I am definitely excited about is the release of her latest novel, usually released in March or April every year.  I always pre-order the latest release, and look forward for when the book gets delivered to me so I can start to devour it!
  • I get excited sitting down and relaxing in front of my favourite television programmes – it feels like an event, and particularly love the American TV dramas such as CSI, Grey’s Anatomy and Bones.
  • Volunteering – I enjoy and get excited by going down to volunteer at a local mental health resource centre every week, and feels really worthwhile giving a few hours of my time to help others

A few of my favourite things!…

What are the 3 things that you are thankful for, or inspired by or those things that get you excited?

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NHBPM Day Four: Sneak Peek in my Bag!!

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I have several bags most of which are in the Kipling range – a brand which I have come to adore because of the functional styles and great organisation within the bags but also because of the fantastic colours and patterns that they come in!

My range of Kipling Bags!!

And every bag comes with a little Monkey keying; each with a different name and each named after an employee of Kipling:

The famous Kipling monkey keying!! This one is named ‘Jo’

My latest favourite bag is the Kipling Firefly Backpack Medium.  This bag has also the ability to convert from a backpack to a shoulder bag with removable and adjustable shoulder strap.  The backpack is ideal for my condition, as I use a crutch a shoulder bag I found use to get in the way so a backpack is a great alternative, it doesn’t get in the way of the crutch and in addition it distributes weight evenly, so better for the back.

As previously mentioned, Kipling bags are renowned for their organisation; and this bag includes lots of pockets so you always know where you have put your belongings!!  The main compartment of the bag includes a zipped pocket, great for medications or tissues, and also includes a mobile phone pocket and a clipped keycord so you never have to rummage around the bag looking for your keys or phone again!  And there is also a pen pocket – another item that also gets lost in bags!

And what is in my bag whenever I go out? There are the basics: my purse just in case I need to purchase anything.  Then there is my phone, which I carry everywhere with me, although I never go anywhere by myself, there are times when my parents drop me off  places such as my volunteering placement or the Wednesday group I attend.  In these instances it’s important to have my phone with me in case I become unwell and need to come home, or if I suffer a fall, say in the bathroom and need to alert someone as I cannot get up!! So, my phone is a must!

As I suffer a lot of nausea, I always have some mints with me to ease it, or even if I am physically sick I always have something I can refresh my breath with and make the taste of sick disappear.  I have been finding lately that I am getting quite forgetful, or as other patients call it, the dreaded ‘brain fog’, so I also make sure that I have a small notebook and pen on me so I can write important details down, such as things I need for the shops, or appointments that I need to keep so I don’t forget.

In Wales, where I live, the government has enforced a 5p charge on plastic carrier bags that people use when shopping.  This is to help the environment and to encourage people to recycle more, so I also carry a foldable shopping bag with me in case I purchase anything so I don’t have to use any plastic carrier bags and save myself 5p in the process!

And there is my very handy ‘pillfold’, which is a fun and fashionable way to carry medications and vitamins when you are on the go.  Instead of those annoying pill boxes, which for me when I am having tremors in the hands are very difficult to open.  But the pillfold is completely different – they are made from fabric  and have eight separate compartments; one for each day of the week with morning and evening compartments, which in turn makes it easy to determine which pills need to be taken and when.  And with the easy to grab zip pulls they are extremely easy to open and close.  As the name suggests they also fold so it’s very discreet and no one needs to know you have medications on you as it’s so discrete.  This is great to carry when out because it’s discrete and means I never have to forget to bring along my medications again!  I love mine so much and find it’s incredibly handy, one of my most useful purchases!  Thank you Sara!

The pillfold was designed by a wonderful health activist by the name of Sara Gorman, who herself battles with Lupus, which she beautifully documents at her blog ‘Desperate Lupus’.  And 5% of the money raised by the purchasing of the pillfold, or of the ‘pillpouch‘ goes to a Lupus charity.  I love mine and I find it so handy; if you would like to purchase one yourself, you can:

http://www.pillfold.com/collections/frontpage

The contents of my everyday bag!!
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