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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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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 a time that you lashed out at someone close to you because of frustration/fear/anger resulting from your health condition and you wish you could take it back. Forgive yourself and let it go.

I have been desperately looking back and trying to find a time in which I lashed out at someone. However, I am coming up with nothing. The truth is, I am just not that type of person. No, I do not lash at people, venting all of my frustrations, fear and anger about living with a neurological condition, which often negatively affects my life. Instead, I tend to direct all my anger and frustrations, inwards, bottling everything up, and instead of shouting at somebody, I often will have a cry into my pillow instead, often when my pain or the dizziness leaves me unable to sleep.

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Yes, living with chronic illness can be very frustrating. For even the healthy, sickness can bring upon a blanket of misery and frustration. However, that misery and frustration are exponentially multiplied when living with a condition which isn’t temporary and instead is permanent and steadily getting worse. I am finding more and more that the condition in which I live, the long-standing brain stem lesion, is leaving me feeling really fatigued. So fatigued that I often need a nap sometime during the day just to be able to function. This is very frustrating as I am only 27 years old – and needing to take a nap during the day isn’t something someone of my age should need! In addition, it also decreases the time in which I could be doing all the things that I really want to be doing in my spare time. It is extremely frustrating when running out of ‘spoons’ and not having any energy to be able to do the chores that really need doing or taking part in an activity that you particularly enjoy. Recently, I had to miss out on both of the two social groups that I attend every week as I was too unwell to go – very frustrating just having to stay in bed all day, and missing out on life.

One week, as I attended the group, I experienced a ‘funny turn’ and was suddenly taken very ill; and my Dad had to come and immediately collect me, even though I had only arrived several minutes before.  This was not only incredibly frustrating; for both me and my Dad; especially as I was looking forward to the group session, but I also found that this ‘relapse’ also knocked my confidence for future sessions of the group as it was always in the back of mind that this type of turn could happen again.

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How frustrating it is needing to conserve all the spoons that we can instead of doing everything that we want

It can also be very frustrating seeing everyone else on social networks living their life without any worries or problems, as well as seeing them and hearing details of them doing all those little things that you so desperately wish to do but are prevented from doing so because of the state of your health. These things can include seeing others on holiday, nights out, attending music concerts or festivals and so on. This is not to say we are not happy that others are enjoying themselves, seriously, we are really happy for them but is still really frustrating for us when we are unable to do the same.

For me, one of my frustrations of my chronic illness is not being able to access the stores I love. Many of the stores that I love or wish to visit (really want to go to ‘The Range’ to stock on craft products!) have high ceilings, which people who regularly visit the blog will know, is one of my main triggers for the episodes of vertigo that I regularly experience. This is extremely frustrating as for one I cannot visit these stores which I love, and if I did would leave me feeling unwell for a long period of time. And secondly, whenever I wish to purchase something from such stores, I have to instead rely on the internet, and also means I have to pay for postage and packing, therefore costing me even more money!

Another frustration is definitely being unable to make definitive plans with friends as we never know how we will feel on that particular day. On top of this, try living with a fluctuating condition, which changes how you feel in an instant. Even on the day you have the plans, and think you feel fine, symptoms may begin just before you are due to meet your friends, resulting in you having to cancel. This results in feelings of guilt in having to cancel.

Frustrating!

However as much as all of these situations can lead to intense sadness and frustrations; it does not help dealing with the chronic condition, and in fact can instead lead to depression. Therefore, maybe it is time to let all these frustrations and go look for the ‘silver lining’ in life…

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There are some of my frustrations with chronic illness; what are yours?  Please share your thoughts and comment below!!  I would love to hear some of your frustrations with chronic illness!  Let’s all vent and get some of the frustrations out!

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