Category

Chronic Illness

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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!

 

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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:

Write about something ordinary that’s inspiring to you, something simple, perhaps overlooked, that fuels your activism 

 

I am not sure whether it fuels my activism but sometimes inspiration comes from the smallest of tasks.  In our house, I am the designated dishwasher!  Of course, at times I am unable to complete the task because of illness, but most of the time I wash the dishes after breakfast, lunch and dinner.  Often people, think of washing dishes they find it a chores; a mundane task that needs to be done.

 

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However, I find it very relaxing, and when I am doing the dishes I find that it allows me to listen to my music, and think freely as I feel the warm water through my hands as I wash all the dishes.  It allows me to look outside the window to our garden and look at the beautiful flowers that bloom there.  Often, thoughts pop into my head as I stand there; I remember little details that I have forgotten about or interesting topics that I might discuss on the blog.

I can dream freely whilst standing at the sink; dreaming of a life without illness or all the little things that I want to achieve despite it.

Many see washing the dishes is a chore; however I see it more of a chance of relaxation; a chance at being inspired as well as allowing us to dream about all the possibilities that life has to offer!

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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:

“The flower that blooms in adversity is the rarest and most beautiful of all” – Mulan.  True or false?  When do you bloom best? 

 

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I do believe the above quote is true – replace the flower with a person and put them through various life’s challenges; some despite the challenges will continue to persevere and flourish whereas as others will become bitter and wither.  I would like to think that I am the former – that I am a flower that has bloomed despite the adversity that has befallen me.

Many of us battling chronic illness; whatever condition that might affect us; have instead of wallowing in self-pity and misery have instead turned illness into something positive by writing about our experiences with illness and spreading awareness to others.  Going through illness is not easy – it is often exceptionally difficult,; symptoms overwhelming our bodies and mind.  However, all those difficulties; all the difficulties that we face every day makes us stronger and determined.  Determined that despite the illness, and the restrictions it places upon our lives, we will rise above them and live the life in the best way that we can.  We appreciate all the good days so much more than perhaps healthy people, as often we rarely experience the good days.

Very often, being chronically ill, we are more sympathetic and emphatic of the struggles that others face.  We are often more caring of others, and love nothing more than to support others’ facing similar adversities then our own.  This is certainly what I have found since joining Twitter.  If I am having a bad day, or facing some other difficulty, I am inundated with tweets of support from fellow ‘spoonies’ and other people whom I am honoured to call my friends.  Often, we are more non-judgemental than most; especially considering invisible illnesses and disabilities, as we can appreciate that every person has their own struggles and inner demons, and are aware that although we may not be able to see all illnesses it doesn’t mean that they do not exist.

We bloom despite our personal adversities by all joining together; regardless of gender, race or even by diagnoses.  We form communities and by supporting each other, and offer comfort when needed, we not only bloom and grow individually but also have the honour to see the entire plant, and group bloom also.  We all bloom and soon an entire garden is filled with the most beautiful of flowers.

 

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Just like flowers; a group of chronic illness sufferers bloom into a beautiful garden

 

So, how does adversity affect my life?  For starters, it often stops me from doing all that I want to do in life.  Often, fatigue overwhelms me and as a result all I can do is lie on the sofa watching TV or a film.  Adversity has touched my life, as dizziness and vertigo affects my daily life, in a completely negative way; because of these I find it difficult to go into shops that I may want to visit, or I became extremely unwell and nauseous within a blink of an eye and need to go to bed.  The spastic paraparesis has adversely affected my life as I am not able to stand for very long; I lose sensation in the legs (and sometimes even my hands); often experience tremors in the legs and hands or very often they will just collapse from under me.  A few years I never envisioned myself needing to use a wheelchair, however now I have one and will often need to use it.  Chronic illness is like that though; like a snake it often creeps toward you, never noticing it is even there, until it bites you, and your life has instantly changed.

Personally, the adversity that the health condition has placed upon my life has affected me psychologically and socially – often I become down because of all the symptoms that I experience, and how often I am unable to complete tasks or go out.  And it has also affected friendships; people do not understand the limitations that the condition has placed upon my life; and so friends have come and gone, often with no warning and some who never contact me, or invite me out with them.

When do I bloom best?  I have to say this is a very hard question to answer!  I am really not sure when I bloom best; often it just seems I am muddling along in life, and attempting to do my best to keep living despite battling with the condition in which I am afflicted.  I recently found a love of the water; now with the support of a Personal Assistant, I am now able to go swimming, and I am loving it!  I am pain-free, and if my legs do give way the water supports my body weight and they are able to give way with no injuries!  I feel that I also bloom when I am determined and set my mind to something; for example, I recently managed to sit through a screening of Les Misèrables.  Previously, I hadn’t been to the cinema in some years, as the cinema experience can trigger episodes of vertigo and nausea, however, as I really wanted to see the film in question I managed to push through all of the horrible feelings, and managed to see the whole film.  I find often, that because of my condition and the places which can trigger them (such as high ceilings and open spaces), and as there are plenty, I have to push through the dizziness and vertigo a lot of the time, and when I do manage to do it successfully a real sense of accomplishment is felt and I bloom even more so!

Do you think the above statement is true?  How does adversity affect you?  When do you bloom best?  Please share any comments below; I always love to hear from my readers so please get in contact….

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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 about burnout.  What does it feel like?  What are your burnout triggers? 

Ah, burnout!  I am finding that I am experiencing burnout more and more frequently. For me burnout feels like overwhelming fatigue seeping from my every pore.  So fatigued, that even raising a finger feels like the utmost effort. On the very bad days when my ‘burnouts’ occur; my legs become extremely weak; resulting in me unable to stand let alone walk.  The dizziness and vertigo can also be very bad on my ‘burnout’ days; leaving me in bed for all of the day wrapped up in a blanket with only the TV for company.  Also spend time sleeping; or at least trying to sleep as the dizziness can be so intense that it often stops me from doing so.

Triggers are harder to discuss.  Life is unpredictable; and my condition is no different.  Burnouts can appear out of the blue; like an uninvited guest.  And burnouts are very much an unwanted guest.  As time goes on however, I have noticed certain factors in my life that can exacerbate symptoms; meaning a burnout is more likely to occur and these can include such things such as:

  1. Overdoing things – if I take on too much or do too many chores or have undertaken too many activities on a given day
  2. If I stand for too long – my weak legs really do not like me standing for too long as it often leads them to give way
  3. Flashing strobe lights
  4. Stress – let’s be honest everyone can relate to this one!
  5. If I’m tired

So, a burnout leaves me weak, fatigued, leaves my world spinning and basically leaving me unable to function.  On the worst burnout day, whilst both my parents were working, I was left alone and was so weak, I was even unable to leave my bed to get myself a drink.  As I was alone for several hours it also left me dehydrated.  Obviously, as I am unable to get out of bed; I am therefore confined to my bedroom, and this can be exponentially lonely – no one to talk to, just me and my television.  And when there is nothing decent on to watch on the television, I am just left alone with my thoughts and misery.

However, instead of concentrating on the miseries of burnouts associated with chronic illness, I thought I would share all the little things that make me feel better when these occur:

  1. I would be last without my iPad!  There are many applications that I have downloaded that helps me pass the time.  For example, I have Netflix downloaded so I am able to watch some films or television dramas when I am confined to my bed.  Alternatively, I have some of the TV catch up applications such as the BBC iplayer and Demand 5 so that I am able to catch-up on the programmes that I have missed throughout the week.  Then there is a jigsaw game that I love and keeps me entertained for hours.  As well as keeping me entertained, I am also able to access Facebook and Twitter so that I able to keep-up to date on all the goings on and even talk to someone when I am feeling lonely or low
  2. My dog Honey!  Pets are amazing and sensing when we are feeling fragile and unwell, and Honey makes sure that I have plenty of hugs and kisses when I have a burnout.  If I am on my own however, she will often be found lying by my bedroom door, keeping an eye out and generally protecting me
  3. And when I am having a bad day there is always my ‘comfort box’ filled with everything that gives me comfort and joy!  On my bad days I get it out and just smile at all the little bits and pieces in there!  I have a certificate of my sponsor dog from ‘Dogs for the Disabled’; DVD’s of Grey’s Anatomy and my favourite feel-good comedy film ‘The Proposal’; a couple of cute little bears from the ‘Me to You’ range as well as a present from a great friend of mine (a gorgeous butterfly brooch)
  4. I have a gorgeous print by a local artists sitting on my windowsill (still need to put it up on a wall!).  The artist incorporates beautiful and uplifting quotes within her art work and the one I purchased features a butterfly with the words ‘Just when the caterpillar thought the world was over it became a butterfly” – it’s a beautiful reminder as to the importance of positive thinking as well as giving me hope of a better tomorrow

 

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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:

Post a vintage photo of yourself, with a caption about the photo and where you were in terms of your health condition 

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What better vintage photograph then one of me as a newborn baby?  A picture of me 27 years ago.  Here is a picture of me on the day I was born.  A picture of me after the damage was done – after the brain stem lesion had formed but would be left undiagnosed for another 24 years.  A picture of me where I was a blank slate – nothing bad had ever happened to me, nothing exciting never happened either, I had never hurt or been hurt.  A whole lifetime was still ahead of me.  My parents dreamt of a life where I fulfilled my potential – university, a career and then starting my own family.  Back then, none of us could foresee chronic illness, dizziness, vertigo and visual disturbances as permanent fixtures in my daily life.

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