chronic illness Archives – Page 39 of 61

In Chronic Illness

Superpowers? What I would really love is endless energy!

April 5, 2014 No Comments

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Welcome to the Health Activist Writer’s Month Challenge brought together by WEGO Health – a social network for all health activists. Again, I am participating in the annual Writer’s Month Challenge in which I will be writing about my health activism and health condition based upon prompts given.

The first prompt reads as given:

Superpower Day…It’s a bird, it’s a plane, it’s…you! If you had a superpower – what would it be? How would you use it?

I am sure that the majority of people who are asked this very question, they would answer with hypothetical superpowers such as invisibility, flying or the ability to read minds. However, being a spoonie, I would like a superpower which is rather ordinary and mundane – and that superpower would be the ability of having endless energy.

Spoonie Superhero - looks just like you and me but with lots of energy! — Spoonie Superhero – looks just like you and me but with lots of energy!

One of the most common symptoms of a lot of chronic illnesses is fatigue. Fatigue being defined as “extreme tiredness“. As a result of fatigue, energy levels are severely reduced and in turn activity levels are also severely reduced. All the chores that you once could easily complete, now feels as if you are attempting to climb an impossible mountain. And as you are no longer able to complete as many (or sometimes no) chores, we are often very reliant on others to do things for us – such as cleaning, doing the shopping, cooking and so on.

This can often feel very demoralising , especially when being young and seeing others’ your age going out partying for hours on end and still being able to get up the next day and head for work, and there you are unable to complete small chores around the home. Therefore, the one superpower that I would choose to have over any other, is simply the power of having endless energy. Being able to have the energy to be able to do everything that I would like to do, instead of completing something and then having no energy to do anything else for the rest of the day. Even to be able to do the housework for my Mother and feeling that I have done something to take the added burden away from her, and generally feel that I have accomplished something would booster my self-esteem and make me feel valued.

Recently, the fatigue that I have been experiencing has been very bad – after going out with my carer shopping, going for coffee or to the gym, I am absolutely worn out; and at times have changed straight into a comfortable pair of pyjamas and having a nap! And I am finding that I am even feeling the effects of going out the next day with no energy to be able to do anything.

So, wouldn’t it be lovely just to have endless amounts of energy instead of being so tired that you have no energy to be able to do anything? Imagine the freedom that could come from that…

What would you do if you had endless energy? Feel free to comment below.

In Chronic Illness

Get knocked down…but I get up again

April 4, 2014 No Comments

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Welcome to the Health Activist Writer’s Month Challenge brought together by WEGO Health – a social network for all health activists. Again, I am participating in the annual Writer’s Month Challenge in which I will be writing about my health activism and health condition based upon prompts given.

Today’s prompt reads as follows:

Theme Song…Imagine your health focus or blog is getting its own theme song. Think “Eye of the Tiger” for Rocky Balboa. What would the lyrics be? What type of music would it be played to?

This is a tough question…how do you find a theme song for a condition, which is for one unusual and rare, and secondly one in which you do not entirely understand yourself?

Then, I though that I would base my choice of theme song on the experience of living with my particular condition. For example, the weakness in my leg; this is one of my main symptoms and one which causes the greatest burden in my life. The burden that it places, is largely due to the severe weakness and trembling in the legs – for example, I am unable to stand for very long and are known for giving way on me without any warning and at the most inconvenient times. This has led to many falls in public; as well as falls down the stairs and even whilst walking up the stairs! These falls have been increasing in number recently, you can read a previous post entitled ‘Falling Down a Vortex‘ which describes my experience of my condition as it is currently, as well as describing a recent fall down the stairs I had in which my Kindle bared the brunt of the damage as it is beyond repair as a result.

The majority of the time after a fall, I am left unable to get straight back up because of the fatigue and weakness in my body, that the condition has left me with. However, no matter how long it takes me to recover from a fall, I do eventually rise and get back up. And so, that is the reason why I selected the one-hit wonder ‘Tubthumping (I Get Knocked Down) by Chumbawamba) as the theme song for my condition. Perhaps not the entire song, mind you (especially as it is a song about drinking and getting drunk! Honestly my falls are because of a medical condition and not because I am inebriated), but just the following lyrics taken from the song:

I get knocked down
But I get up again
You’re never going to keep me down

These lyrics, in my opinion, reflects life with any chronic illness. Chronic illness, forces us to be knocked down a lot of the time by worsening symptoms, as well as being knocked down emotionally. But just as the song suggests, we eventually get up again. We are all fighters. We are all survivors. And as fighters and survivors we never allow our illnesses beat us and keep us down for long.

The song is also extremely catchy, and just like any catchy song, it is one you cannot get out of your head – just like chronic illnesses. We are unable to forget about it; and it is in our heads constantly, just like an upbeat unforgettable pop song!

Here is a video of the said song for you to enjoy!:

As a note, I would like the opportunity to publicly thank Amazon UK who after hearing about my accident and my broken Kindle, very kindly offered a replacement one free of charge! It was so lovely of them and cannot thank them enough for their amazing generosity!

In Chronic Illness

Keep Calm and Carry on Wheelin’

April 3, 2014 No Comments

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Welcome to the Health Activist Writer’s Month Challenge brought together by WEGO Health – a social network for all health activists. Again, I am participating in the annual Writer’s Month Challenge in which I will be writing about my health activism and health condition based upon prompts given.

The first prompt reads as given:

Keep Calm and Carry On…Write and create your own “Keep Calm and Carry On” poster. Try to make it about your own condition! You can then go to (http://www.keepcalm-o-matic.co.uk/) and actually make an image to post to your blog.

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I have chosen this particular phrase for my own ‘Keep Calm’ poster as it reflects my life with my condition at this time in my life. As regular readers of my blog will know that my condition, and a symptom known as spastic paraparesis causes severe stiffness and weakness in my legs; as a result, my legs will often give way and often without any notice. In addition, the stiffness often causes a lot of pain (when I have feeling in them, that is!) and therefore unable to walk very far. As these symptoms have been increasing in severity, I am therefore required to use a wheelchair when I am out for long periods of time, or somewhere which requires a lot of walking.

The dizziness, that I experience however, makes it feel very uncomfortable to use the wheelchair due to the motion upsetting my vision and causing severe dizziness and vertigo. But, as my legs are often too weak and the pain and trembling make it considerably difficult to walk, then I need to disregard the dizziness, and use the wheelchair anyway.

In nearly four weeks, I am going on a cruise, and of course, part of the holiday is going on excursions to some of the cities that we are visiting. In doing so, it requires a lot of walking and due to the severity of the symptoms, I am going to have to use the wheelchair no matter how bad the dizziness is – and therefore I will have to just ‘Keep Calm and Carry on Wheelin’!

In Chronic Illness

Wordless Wednesday: The experience of living with a neurological condition

April 2, 2014 No Comments

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Welcome to the Health Activist Writer’s Month Challenge brought together by WEGO Health – a social network for all health activists. Again, I am participating in the annual Writer’s Month Challenge in which I will be writing about my health activism and health condition based upon prompts given.

Today’s prompt is as follows:

Wordless Wednesday…We all know a picture paints a 1,000 words. Post/share a picture that relays a message or story to the viewer.

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Image found on Pinterest

In Chronic Illness

Laughter…best remedy for life with chronic illness

April 1, 2014 No Comments

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Welcome to the Health Activist Writer’s Month Challenge brought together by WEGO Health – a social network for all health activists. Again, I am participating in the annual Writer’s Month Challenge in which I will be writing about my health activism and health condition based upon prompts given.

The first prompt reads as given:

Laughter is the best medicine…In honour of April Fool’s Day, is there something that always makes you laugh? A memory, favourite joke?

The old adage “Laughter is the best medicine…” may not be original and slightly banal; but after living with chronic illness for many years now, it is one that is undoubtedly true. On bad days, when you are feeling awful, and it seems as if there are storm clouds directly above your head, finding something that makes you laughs, just brightens the day and lifts the spirits.

My dog Honey makes me laugh constantly on the bad days; she is such a little character. Take the other day; whilst preparing the Sunday dinner, a few loose potatoes dropped onto the floor, and like the dog she is, Honey immediately picked one up from the floor, and as she is so stubborn would not leave go!! This led to Honey having the potato in her mouth for approximately 15 minutes, just wandering around and not wanting to let go! Here is a picture of her with the said potato:

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After finally prising the potato from her mouth; Honey came back in with yet another potato in her mouth – clearly, we missed a potato on the floor, which did not go unnoticed by the dog!

It is these little antics, and the small things that she does everyday such as giving me kisses, or licking my feet that never fails in making me smile and laugh on even the worse days with my chronic condition. And it is these smiles and laughs which makes life worth living, even when the symptoms are so severe that it feels as if you cannot survive another day with them. So, on the bad days, even medicine cannot make one feel better, but laughter and finding things which make one smile really helps brighten the day despite living another day with chronic illness.