Chronic Illness Archives – Page 74 of 90

In Chronic Illness

NHBPM Day Four: Sneak Peek in my Bag!!

November 4, 2012 No Comments

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!

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

In Chronic Illness

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

November 2, 2012 No Comments

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.

In Chronic Illness

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

November 1, 2012 No Comments

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!!

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!

In Chronic Illness

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

November 1, 2012 No Comments

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!

In Chronic Illness

Comfort Box: Getting Crafty!

October 25, 2012 No Comments

I was browsing on YouTube a couple of weeks ago, and came across a video by a young woman called Kelly, who like me suffers with chronic illness. In the video she describes, and demonstrates how she made what she calls a ‘comfort box’. It’s a box which on the outside reflects your personality and your personal likes and interests. On the inside, however, holds on the things that you hold dear – those items which bring you comfort, a smile on your face on the bad days; those days where you feel really unwell, or so down that everything seems like such a struggle.

So, I decided to make my own comfort box, and thought I would share you some photographs of the comfort box that I made for myself:

The front of the box with a couple of pretty butterflies and jewelled gemstones that reads Comfort Box’

The back of the box that again has butterflies and a couple of sunflowers – one of my favourite flowers and symbolic of my time at ‘Life 4 Living’

Again more butterflies! Plus a bird! And some more sunflowers!

More Butterflies!! – I know I’m predictable!! 🙂

The Lid – I used some decopage paper for this effect

At the moment the box is empty but going through my things and deciding what really makes me happy and gives me comfort for those ‘dark’ days especially when I am stuck in bed, and too dizzy and weak to get up out of bed. Thinking of selecting some of my extensive DVD box set collection in there, which often cheers me up and keeps me entertained when bored and lonely!! And maybe one of my cute little stuffed animal toys, really cute and puts a smile on my face and reminds me of some good times when I bought it.

If you were to make a comfort box; how would you decorate it? And what would you put in it?