Life on autopilot…

I realise that I have been deathly quiet in regards to my writing recently but unfortunately I have been really struggling with well, everything.

I have been finding that the trembling in the legs is becoming increasingly worse.  Standing is becoming extremely uncomfortable and impossible to do for very long as I am feeling the severity of the tremors and the buckling of them whilst queueing or whilst completing the washing-up for example.  With regards to standing, it has been evoking anxiety as I am always afraid that they will suddenly give way, which has been happening to much embarrassment.  It was not until I was speaking to a person who has similar problems to myself, that using two crutches maybe more beneficial for myself than using just the one as it offers increased stability when standing and walking and reducing the risk of falls.  I loved the idea of being able to save myself from falls as because I have been experiencing so many of them my bruises have bruises!

The owner of the gym even kindly let me borrow a couple of the crutches that have been donated to the Feelgood Factory.  Unfortunately, after using them for a few days around the house and even once whilst out with my carer, I have decided that this option is not for me as not only have I found using two incredibly awkward and uncomfortable, they have also proved to be inconvenient.  For example, whilst in the house on my own, I was unable to carry my lunch from the kitchen to the living room as I had no free hands to spare!  It has also been found to be inconvenient when out shopping as I am left unable to pick items from the shelves or racks and therefore offers me less independent than using the one crutch as I am reliant on other people to do my shopping for me.  In addition, because of the dizziness I have always found that holding onto someone for support, such as linking arms gives me comfort and confidence when out and about and so using two crutches also prevents me from having the support of another person.

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So, I now have to make a decision to make whether to start using the wheelchair on a more permanent basis; although I do not always feel comfortable in using one because of the dizziness and vertigo, it has been put to me that because of the increasing severity of the trembling as I have stated above and the increased number of incidents of falls then it may be the time that I need to start thinking of using it for the majority of the time when I am outside of the house.  This is not only to keep me safe from further injuries, but also prevents my falls from injuring others or even from falling and damaging items that are on display in the stores that I visit.  It is not an easy to decision to make; for anyone it is difficult to admit weakness and further to admit that you need help.  It’s difficult to accept that my legs are getting worse and further that I may need further support such as the wheelchair to be able to get around when out of the house.

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Fatigue has also been a big problem for me also.  As the pain and trembling have been bad during the nights, sleep as a result has been limited and thus leaving me exhausted through the day.  Naps has been my best friend lately and have found myself falling asleep during the afternoons.  These naps are more frequent and last longer after days where I am out and about I have also noticed.  Fatigue not only leaves you feeling absolutely exhausted but also leaves you with little energy (or in our case ‘spoons’) to be able to do things that we would ordinarily do with ease.  Completing one circuit of the gym has been extremely challenging, whereas before I could complete two with ease.  Chores has left me unable to function for hours.  Not only it has had an effect on my energy levels either.  It has also had an effect on my mood – not only have I been snapping with very little provocation but I have also been feeling very low.  I would not say it’s depression but am just generally low in mood.

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In other news, I finally have had an appointment with the neurology consultant for early next month so I am hoping that all of the test results that I have had done over the past few months have found something, or there are ways in which they can help me and improve my overall quality of life.  When things are bad such as what I am experiencing at the moment, it can often seem as if we are just existing rather than living; if we are just going through the motions or living on autopilot but I am determined to continue to fight my way through the bad patch and find my silver lining…

Tweet: When things are bad it can often seem as if we are just existing rather than living http://ctt.ec/b30e0+ via @serenebutterfly #spoonie

Lesson Learned! Don’t walk down the stairs with trembling legs…

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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:

Lesson Learned…What’s a lesson you learned the hard way? Tell us a time when you made a mistake and promised never to make the same mistake again

There are many lessons that you learn when diagnosed with a chronic illness, such as acceptance is not about giving up and you are not defined by your diagnosis.  But it is not these big life lessons that you learn whilst living with a chronic illness but you learn everyday on how to live with your specific condition.  For example, I have learnt that in order to cope better with the dizziness that is a good idea to wear a hat, with a fisherman’s hat being the preferable choice, as it blocks out more visual stimuli than other styles.  I have also learned to tell when I need to use the wheelchair, or when I need to take a nap.  However, one lesson that I should have learnt a long time ago is one which I learned the hard way…

The style of hat that is most effective in lessening the severity of the dizziness
The style of hat that is most effective in lessening the severity of the dizziness

The lesson happened one night in late February, Mum and Dad had gone out to see a concert and so I was left home alone.  On that day, I remember it was one of my bad days, with the dizziness and the trembling in my legs particularly bad, and so before they left my Mum had done the washing-up as I was unable to stand for long.  And so they left me in front of the television with a packet of sweets; as my legs was so bad, I probably should have known just to stay lying on the sofa and find a film to watch.

But instead, I thought it was a good idea to walk upstairs to grab my Kindle as there was nothing to watch on the television and walk downstairs.  However, instead of walking down the stairs, I fell down them as I had suddenly lost all sensation in my legs (probably should not have wished for the trembling to stop!).  Fortunately, I was fine – a little shook up, but I hadn’t broken anything.  Well, I hadn’t broken any part of my body, but the Kindle that I was bringing downstairs?  That was indeed broken – the screen had cracked and so became completely unreadable.

The casualty from my tumble down the stairs...
The casualty from my tumble-down the stairs…

 

As an avid reader, this really upset me as it was one of my gadgets that I regularly use, and as I was saving towards the holiday I could not afford to replace it.

The story does have a happy ending however; after it happened I talked about the incident on social media, I think partly as I was on my own and still shook up about what happened and it was my way of having company, or at least some version of it.  A few days after it happened I was sent an email from an employee at Amazon UK who had heard about my fall via social media and the company was offering me a replacement Kindle free of charge!  It was an amazing act of generosity that I will never forget and I am now a happy owner of a new Kindle and reading books on it to my hearts’ content!

But a lesson that I learnt from the incident is when the weakness and trembling is as bad as it was that night, then to stay sitting or lying exactly where I am and not to exert my legs in doing more they can handle.  An important lesson but one which I learned the hard way! (And you will be happy to know that I no longer walk down the stairs holding my Kindle!)

A special thank you to Amazon too!!

What are some of the lessons you have learned during your life with chronic illness?  Are there any that you learned the hard way?  As ever would love to hear your thoughts and comments on the blog post, or the blog generally.  Please feel free to leave your comments below…

 

 

Get knocked down…but I get up again

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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!

Chronic Illness and its awkward situations can be embarrassing but they can also make us grow…

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Welcome to the sixteenth day of the National Health Blog Post Month Challenge hosted by WEGO Health.   Every day during the month of November I will be writing a new blog post related to health and living with a chronic illness based on given prompts provided by WEGO Health.

Today’s prompt reads:

Well, that was embarrassing…  What’s the most awkward situation your health condition ever put you in?  (Don’t be bashful, we’re all friends here).  Maybe you can look back on it now and laugh, but it wasn’t so funny then

I suppose, one of the benefits of living with an invisible health condition is that when you are out of the home and walking amongst the healthy, others are not aware that you have a chronic illness and you are able to bask in the pretence that you are just like everyone else.  I used to be able to do just that; walk around as if I was perfectly healthy, ignoring the dizziness, pain and weakness that was reminding me that I wasn’t like everyone else.

However, after the condition started to worsen, the awkward phase of my neurological condition began to present itself – frequent fall in public.  Yes, it happened in shops, at home, at houses of friends and family as well as the centre where I used to volunteer – my legs would suddenly give way which resulted in my entire body collapsing to the floor.  I found this extremely embarrassing , especially at the times when I was unable to get up straight after the fall because of the weakness in the legs.  Looking back I do not think it was just the situation that I found awkward and embarrassing, which I did especially given my age and partly because at that time I didn’t know what was wrong with my body.  No, it was also the attention that it caused from others who were around, the stares and the fuss that these falls caused; it was especially embarrassing when it happened in shops and being helped by elderly people who were much older and obviously fitter than myself!

Of course, this happened, not just the one time but happened extremely frequently for several years.  Then, once it happened right in the middle of a popular clothes store in town when I was out with my carer, and because of the weakness in not just my legs but throughout my entire body, I was unable to get back up for approximately ten minutes and so had to be helped by several members of staff and my carer to a stool that they had lent me.  The shop at the time was quite busy and there were several members of staff, so as it happened in front of so many people was very embarrassing especially given the stares and people asking me if I was alright and if there was anything they could do (don’t get me wrong I find that to be very kind and thoughtful but still it doesn’t make any less embarrassing!).

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Looking back at this particular incident however, I now realise that it was an important part in accepting the deterioration in my mobility and overall condition and finally accepted the need for the wheelchair.  Perhaps, it is an incident that was awkward but one which was enlightening and shone the light on an aspect of my life that was changing but could do something to help me adapt to the new situation.  It also shows that awkward and embarrassing situations, although can be upsetting and distressing, they can prove to be situations that cause us to learn and grow…

Has your health condition caused you to have an embarrassing incident?  Would love to hear your comments and thoughts as ever!  Please leave any comments below!…

HAWMC 2013 Day 23: “There’s an app for that!…”

 

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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:

“I wish this gizmo could track my condition!”  Write about which device, application, program, etc, you wish helped to track your health 

I have an iPhone, and there are an overwhelmingly large number of applications available for the phone; many of them health related.  There are applications to remind you to take medications; to track fitness and nutrition, as well as keeping a record of symptoms and possible triggers.  There are also diaries and journals that you can download to the phone in order to take detailed notes of what is happening to one’s health.  For example, on my iPhone I have the following applications to help not only track my health but also keeps me entertained through illness itself:

  • Facebook, Twitter, Pinterest, YouTube and Instagram – love these as it keeps my spirits up; entertains me as well as allowing me to keep in contact with all of my friends and be up-to-date with all the latest goings on. 
  • WordPress – this is to keep up with my blog
  • Symple – this is a fantastic tool in order to track symptoms associated with your condition as well as all the factors that affect them.  If one has started a new medication then it really is a great tool in order to see whether it has been effective in managing pain, for instance. Find out more about the application by visiting their website
  • Games such as 4 Pics 1 Word, The Chase, etc – purely for entertainment value and excellent at keeping my mind off my pain and keeps me occupied whilst at appointments

 

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However, if I were to invent an application that could track my health condition; what features would it include?  For starters, I would love a way to track the number of falls that I experience.  During doctors’ and hospital appointments, I am always being asked how many times I have experienced falls in a given period, however, the truth is the number is so great that I lose count!  Therefore, an app which record the times I fall would be extremely useful; even more so if it could be done with one press of a button.

I would also find use of an app, that could send an alert to someone whenever one occurs.  This could be useful as a way of recording times when falls occur but also will be useful for getting help when a fall does occur, especially as I am often unable to get back up by myself.  It may also be useful in gaining a little independence when out and about with my parents, or carer – I could go and have a look at what I wanted to by myself without needing someone constantly with me, but then if a fall did occur, they would be alerted and come and assist me when necessary.

Because of the recent attacks, I have been experiencing of complete vision loss, the doctors advised to keep a diary of when such attacks occur and to record the time that the attacks last for.  However as my vision completely goes, I am unable to see the time, and therefore cannot record how long the attacks last for.  I searched and searched for an app that could assist be in doing so without needing my vision; perhaps through voice assisted technology, however I was unable to do so. So, an application which could do just that for me, would really help in keeping track of this particular troublesome symptom.  Even recording the times within the app, would also be useful, so I could instantly share it with doctors’ or consultants.

But most of all, the most helpful apps would have the option to be able to send all the data that has been collected could be sent to your doctor or hospital consultants and could then be added to your records.  This would make it much easier than, for example, keeping a written record and then remembering to take them to appointments.  Wouldn’t it be easier to be able to send data to our doctors between appointments so we can keep them up to date on our progress?  Especially if new medications have been introduced to our treatment regimen.  If doctors could keep-up-to-date by seeing data such as these between our appointments, and became concerned over deterioration in symptoms perhaps then they would be able to invite us for an appointment before a flare or relapse in our conditions occur.  Wouldn’t that make it easier for both doctors and patients alike?

If you could invent an application to assist you in your daily struggles with chronic illness what features would you like to see?  Share your thoughts and comment below!

HAWMC 2013 Day 13: Acrostic Poem of my Health Condition

 

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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:

Write a health acrostic for your condition, hashtag, or username! (acrostic = a poem where every letter of a word serves as the first letter of a word or phrase i.e. DOG = Digs Others’ Gardens)

 

This has actually been quite challenging for me as I have never written an acrostic poem – and has even been years since I have written a poem…but will give it my best short!  Here it goes!:

Brain is at war,
Ravaging my mind
As well as my body, weakness overwhelming my limbs
It causing my world to endlessly spin
Not counting the endless falling 

Spastic Paraparesis affecting my legs, often sends me
Tumbling to the floor; unable to rise
Enslaved, trapped in this body, not even 
Medications can fix those lines that inflict my brain

Lying does not even cure the spinning
Even when my eyes are closed 
Spinning joins me in my sleep
In dreams, my world is still in motion
Out those damn scars; those lines that fracture my brain; those
Never ending scars that affect my world around me so

 

What did you all think?  A good first attempt?  Feedback always appreciated…comment below!

 

 

 

 

 

 

 

My Life…My Truth

You think that you know, but you have no idea what living with my condition is like.  People make snap judgements based upon many different factors such as appearance, body language, posture and so on.

So, I have decided to write a post regarding misconceptions regarding my condition and my life that people may have, inspired by WEGO Health’s ‘True Life Tuesday Blog Party’.

The first misconception has that as I appear ‘normal’, I cannot possibly be disabled.  However hidden disabilities do exist and exist in many different forms – such as mental illness, learning disabilities and many neurological conditions such as my own.  Hidden disabilities can create significant limitations for the person, the only difference is that we cannot see these limitations and barriers as we can with those who are blind in a wheelchair.  Take my case for example, the weakness in my legs are not visible to the outside world, but it does and affects me greatly such as not being able to stand for very long and experiencing many falls daily.

Image: BBC News

“Your dizziness is caused by anxiety; you just need to learn to relax” is one misconception that I have experienced by many people over the years – especially by doctors.  However, although anxiety does play a part as I often felt anxious about the dizziness, which only seemed to magnify the unpleasant symptom even more.  Although relaxation and breathing exercises did help with feeling calmer and less anxious, it did not help regarding the dizziness, and was still very much present in my daily life.  As anxiety and other psychological problems was not the root cause of the dizziness but instead a by-product of it.

“You are constantly falling over, you must be drunk” is another misconception that many people may think when seeing me, as I am often swaying or stumbling and falling over, many symptoms people exhibit when intoxicated.  However, with neurological disorders such as mine and many others, the unsteadiness and constant imbalance is caused by the lesions that exist within my brain stem – causing dizziness, problems with balance, and in my case stiffness and weakness in my legs.  The spastic paraparesis often causes great difficulty with walking, especially when they are weak, as they often just give way from under me with no warning causing falls.

“You don’t look sick, you must be feeling fine” is one which I am sure many people with hidden disabilities or invisible illnesses such as mine often experience in daily life.  People make judgements based solely on appearance – but just because someone may look fine doesn’t necessarily mean they feel good on the inside.  Due to the long-standing brain stem lesion, I experience constant dizziness with frequent episodes of vertigo and consequently often feel very unwell, but as a young woman, when going out I don’t want to look ill, so I use make-up to hide the dark circles under my eyes – to give me a natural healthy glow.

And  my last misconception is based upon glances I receive when I am out using my crutch.  These stares and looks seem to say “Why the hell are you using that crutch, you don’t seem to need it”.  Again, as I am not exhibiting a broken leg or some other sign of injury, I couldn’t possibly need to use an aid such as a crutch, to look at me I look perfectly  ‘normal’ and ‘healthy’ but hiding deep inside are lesions causing imbalance and weakness in legs and so on, often leading to stumbles and falls, and using a crutch makes me feel much more stable when walking.

So, these are the misconceptions regarding my health condition.  Try and imagine a person exhibiting some of the symptoms I experience, are these any other misconceptions or judgements that you might make regarding that person? Would love to hear your thoughts and suggestions…