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In Chronic Illness

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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NHBPM Day Two: The Annoyance of Living With a Neurological Condition!

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What I have chosen to write about doesn’t really constitute as being ‘weird’ but more of a ‘nuisance.’  What is the nuisance aspect of my health condition?

It would have to be the unpredictable nature of the condition – never knowing when I am next going to become unwell; when the vertigo is going to come on.  One minute I can be feeling quite good (due to the constant dizziness I never feel one hundred per cent) and then BAM out of nowhere it comes on and catches me by surprise.   Life with a neurological condition like mine is really like living on a rollercoaster!

Similarly, with the weakness in my legs, and the problems I experience with them giving way can also be unpredictable and will do so suddenly out of the blue.  On occasions I have gone out, browsing the stores in my local town and then all of a sudden I am on the floor as my legs have collapsed from under me.

As you can imagine this can be a nightmare, especially when making plans with others especially in advance as I can never know how I am going to feel on that particular day; or whether I will become unwell at the event or night out.   And my legs also makes it very difficult to make plans or even to go out as I have no idea when the next time they are going to give way, and as I am often unable to get up after a fall it can make it very awkward and embarrassing if I do suffer one when out, which means that I am only able to go out for short periods of time when I do to decrease the risks of any collapses as standing for too long or over exertion can be a trigger of these attacks.

And there is the suspicion of other people as the randomness of how one minute I feel fine, and the next I am absolutely giddy for no apparent reason confuses them.  It’s easy to assume that the person is faking or exaggerating the symptoms when they seemingly appear out of nowhere; but this isn’t the case, believe me I would much rather feel absolutely normal in my daily life and set out to achieve everything; to live a normal and exciting life – to able to travel, hold down a full-time job, or simply by going out with friends to parties or nightclubs.  However, my conditions stops me from doing these things; and sometimes it’s just a struggle to get up out of bed every morning and to complete the little chores that need to be completed.  I would much rather be living my life rather than by simply existing within it.

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NHBPM Day Three: “I don’t know about this but I’d like to…”

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This prompt for the National Health Blog Post Month is all about what we would like to know but don’t.

For me, I would like to know more about the spastic paraparesis that plagues my life. I know the basics – it causes severe stiffness and weakness in the legs. But that’s about all I know about the condition, and something which wasn’t even explained to me by the neurologist whom diagnosed it – I had to learn about it from reading a letter he sent to my GP!! There have been some journal articles that I have come across which mentioned the condition in some detail however as it was from a medical journal it was very technical and a lot of medical jargon that I probably couldn’t pronounce let alone understand!!

Wordle: Spastic Paraparesis

Not even searching Google or other search engines have shed any more light on the subject; most of what is written concerns hereditary spastic paraparesis or tropical spastic paraparesis, which may be of some use but might not correctly explain the condition as it pertains to my individual circumstance.

It would be of use to know why I have developed the spastic paraparesis and how the condition itself relates to the long-standing brain stem lesion; how these two conditions fit together and causes the symptoms that I experience on a daily basis. In addition it would be of use to know the prognosis; whether it would be something which could deteriorate over time or which should remain stable for the remainder of my life. Signs which I should be looking out for which could forewarn me about possible deterioration – information such as this is vital for someone with a chronic illness; it gives the ability to plan ahead for the future and to make contingency plans if the worst case scenarios were to play out.

And lastly there is the case of the possible treatment options for the condition. From the little information that I have been able to gather regarding spastic paraparesis one of the options is physiotherapy. Unfortunately, after many sessions of physiotherapy with a neurophysiotherapist (a physiotherapist whom specialises in treating patients with neurological conditions) I was discharged as it was apparent that there was no improvement and the physiotherapy was not working. Neither the physiotherapist or my GP offered any alternatives to the physiotherapy and besides the medication that I take to ease the neuropathic pain I experience; therefore knowing alternative and all other treatment offers would be a must!

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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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