HAWMC Day 22: Finding Sanctuary Amidst the Chaos of 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 given prompts.

Wednesday 22nd April: Hobbies 

Running and 3PM dance parties are some of our favourite hobbies at WEGO Health.  Tell us, what are YOUR hobbies?  Love to crochet?  Can’t stop collecting rocks?  Take photographs of everything?  Share your favourite past times.

Sitting here preparing the post for today, I feeling particularly bad due to the symptoms I experience as a result of the brain stem lesion.  The dizziness and vertigo are making it difficult to do anything due to the severity, and the trembling in the legs is so bad that it has already lead to several falls, and it’s only early afternoon.

Today’s prompt above asks us to write a post about our favourite past times that makes us happy and provides us with a respite from life with chronic illness.  This is a post that I have already written during a previous #HAWMC and which you can read here.

Instead, I have decided to write a post about the little practices and routines that help me during a particularly bad flare.  By doing so, I not only hope to help others who may find comfort in these during their own relapse, but also by reminding myself of the little things that give me comfort and pleasure even during the bad days, I can also help myself in the process.

An important aspect of living with chronic illness, is in my opinion, having your own personal sanctuary; for me, this is my bedroom.  My little haven where I can go to escape from the stresses of everyday life, and where I can receive comfort when chronic illness is beating me.  It is also an homage to me, filled with everything I love.

I love butterflies, as they are a symbol of hope and change, and as a result there are a lot of decorative touches with butterflies throughout my room.  The space therefore, for me is not only comforting but is also a space where I would love to spend a lot of time, which for someone living with chronic illness is vital.  Little touches such as soft and luxurious cushions also gives comfort for the times when there is a need to stay in bed for long periods.  I have also added things like inspiring quotes and affirmations throughout my room, cards pinned to my positivity board, prints hanging on my wall, or on little trinkets to keep in my comfort box.  Including these affirmations and positive quotes in my personal space, is a reminder that despite the struggles faced as a result of chronic illness, things however will get better.

Furthermore, living with chronic illness and as a result spending most of the time at home can lead to feelings of isolation and loneliness.  Making new friends and maintaining existing friendships can be difficult.  As a result, I have used the internet and social media to meet other people also living with chronic illness, and have even made several pen pals.  Writing is something that I love, and so using this hobby, I write letters and cards to others who are also struggling in the hopes to help lift their mood.  By helping someone else, it also helps to lift my spirits also, and is reciprocated by lovely and thoughtful cards dropping on to my doorstep.

When it seems that chronic illness is controlling my entire life, and due to the severity of my symptoms as mentioned above, a lot of time is inevitably spent in the bedroom, lying down and trying to find any relief.  During these time, I find that entertainment is a vital tool, not only keeping myself occupied but also to distract myself from symptoms such as pain, dizziness and trembling in the legs.  I often find solace in various films and TV shows on streaming services such as Netflix and Amazon Prime.

Recently, I have loved watching episodes of ‘Once Upon A Time’, often watching several episodes concurrently.  During times of painsomnia (insomnia as a result of pain), I also find watching films or TV series on my tablet to occupy my nights without disturbing anyone else!  Books are also fantastic distraction tools, as they often pull you into the story, that you lose yourself in the plot, forgetting about everything else.  Audiobooks are a great alternative when symptoms makes it difficult to physically be able to read.

Addictive viewing amidst a bad flare in symptoms
Addictive viewing amidst a bad flare in symptoms

As mentioned in earlier posts this month, colouring books are the new craze and one which I have bought into.  They are incredibly relaxing as it helps the mind focus on the present and not on any stresses that may be troubling an individual.  I have found it particularly effective in helping to distract my mind from the pain in my legs.  I love the intricate patterns and detail that appear in the adult colouring books, which are coming popular and provides you with some artwork to decorate your living space! I also enjoy other craft projects such as making cards, and sometimes even a go at jewellery making.  Also, a great way of being productive amidst being physically incapacitated by symptoms.

Painting my nails is just another hobby and activity that I like to do during the bad times as a result of chronic illness.  Living with a variety of symptoms affecting the body, and even sometimes noticing physical changes as a result can be difficult and lead to issues surrounding body image.  For me, living with constant trembling in the legs, and very often in the hands can be miserable and very uncomfortable, noticing small tremors in my hands serves as a physical reminder that there is something very wrong with my body, so to make me feel better, I like to paint my toe and fingernails some bright and bold colours puts a smile on my face and makes me feel better and more confident about my appearance despite these troublesome symptoms.

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HAWMC Day 18: Here Comes the Summer!

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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 given prompts.

Saturday 18th April: Summer is Coming

What are the 3 things you look forward to the most in summer?  Whether it’s the travel, the weather, family cookouts, or another activity, share with your readers why you’re excited for the summer!

It’s fast approaching the end of April, and as we enter into May we are ever nearing the start of Summer.  Hopefully, like last year we will be immersed into months of glorious sunshine  and warm temperatures.

Summer is the probably the favourite season for most people if asked.  Living in the UK, and experiencing long and miserable winters, the summer therefore provides a welcome respite from the grey clouds and rain.

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With  grey clouds overhead everything can look bleak and depressing.  In the summer, however, the same scene can look beautiful cast in dazzling sunshine and bright blue skies.  Also, if you ever notice being out and about during the winter, everyone seems in a rush; dashing in shops and buildings to escape the rain.  The same people during the summer, however, are much less hasty during their walks, taking their time whilst enjoying the feel of the warm sunshine on their skin.

Furthermore, in my personal experience, and depending that the temperatures do not get too high, I find that the chronic pain that I experience as a result of spastic paraparesis eases slightly during the summer months compared to the excruciating pain that the very cold temperatures during the long winter months causes.  Taking part in activities such as swimming also helps relieve any pain and discomfort that I do feel, and there is no better time of year to do said activity than the summer.

Look at that view  basked in beautiful sunshine and blue skies filling the sky.  Bet it wouldn't look half as beautiful when there are grey skies!
Look at that view basked in beautiful sunshine and blue skies filling the sky. Bet it wouldn’t look half as beautiful when there are grey skies!

A few months ago, I wrote a blog post about the reasons to love winter.  Not an easy article to write, and often felt that I was taking the reasons for hating the season and putting a positive spin on them.  I have the opposite problem for writing this post about summer; there are so many reasons for looking forward to summer, that choosing only three is extremely difficult!

Here are my reasons for loving summer:

  • Summer Fashion: Although I love my winter wardrobe as mentioned in my post on the reasons to love the season, with the chunky knits and thick, comfortable leggings, I prefer the summer fashion with all the bright colours such as orange, yellow and pink, all of which to me represents happiness.  I also adore wearing maxi dresses and white trousers, all fashions that look lovely and fresh during the summer months!  Recently, going shopping and noticing the new looks for summer, with the bright colours everywhere in the shop looked cheerful.  And the swimwear collections, reminding us that holidays are also looming
  • Good Times: The choice of activities during the winter months can be quite limited in part due to the changeable British weather.  However, if you are a person who likes to be busy and active, you are certainly spoilt for choice during the summer, as there is so much to do.  Summer fêtes, open-air theatre productions, outdoor concerts and music festivals to name but a few.  Tourists besiege the popular destinations, making the summer feel like one long party.  With so much to do, and the fact it’s light early in the morning, and the days are long, we get to see much more of our friends and families, enjoying barbecues, picnics, playing games and gossiping until late. Making memories that will last forever.
  • Nature: There are lovely natural sights to behold during the summer months.  Beautiful, bright butterflies fluttering around.  Dazzling, exquisite flowers in full bloom.  The smell of freshly cut grass.  The sound of birds chirping.  Everything feels alive and exuberant during summer!

There must be something special about summer, I mean even a snowman wants to experience it!

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HAWMC Day 14: Trying to take on the world…

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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 given prompts.

Tuesday 14th April: “I feel best when…” 

Write about moments when you feel like you can take on the world.  Where, when and how often does this happen?

Again this is an extremely difficult prompt for me to answer.  For some time now, too long to remember when it started, but the symptoms have become much more severe and debilitating.  As well as the deterioration in the severity of the symptoms, the symptoms themselves over the years has become constant.

It seems now, therefore I never get a respite from the symptoms such as the dizziness, trembling in the legs and pain.  Not all the symptoms, however, are constant, for instance, visual disturbances are provoked by certain triggers, and although these symptoms are not constant, they still occur more than they used to.

Therefore, as I never get a break from living with the symptoms as a result, everyday can often feel like a struggle, and can feel that I am never feel my best and able to take on the world.  This is especially the case, when going out after a restless night’s sleep due to pain, which has been the case for a few months.  Furthermore, as the trembling and dizziness is so bad, it is a struggle to be able to get out of the house, never mind finding the stamina to take on the world.

Living with symptoms which are constant can make it difficult to be able to take on the world
Living with symptoms which are constant can make it difficult to be able to take on the world

Although, I do find that when I am feeling at my worst due to the pain and trembling in my legs as well as the dizziness and I somehow find enough strength and determination to achieve something that I have struggled to do, such as going to a place that is difficult for me (e.g. retail stores which have high ceilings or a lot of fluorescent lights).

When I do, I suppose it is the closest I can feel to being able to take on the world; I experience a surge of confidence when I have been able to battle through the debilitating symptoms to achieve a goal.  I cannot remember, when the last time it happened, but I can remember feeling so happy and proud of myself after managing to stay in a local Next store despite struggling to cope with severely trembling legs and horrendous dizziness.

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The symptoms were so severe that during the entire trip, I felt like I needed to get out of the store, and go home.  However, despite how bad I felt, I fought through the symptoms and managed to stay in there, even long enough to queue and buy an item of clothing.  For me, at this time it was an immense achievement as there were many times when I was unable to go in the store due to my symptoms.  I also notice that when I am able to push through the symptoms, and able to accomplish a goal, I am also able to do more and go to other places too.

Perhaps it is the little achievements that we as spoonies manage to carry out despite living with debilitating and continuous symptoms that can make us feel like we are able to take on the world.

 

HAWMC Day 5: No such thing as a small accomplishment when living with chronic illness…

531000_10150773237874254_36556179253_11327993_607059728_n 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 given prompts.

Sunday April 5th: Breaking News  The top story of today is…YOU.  Share with your readers your proudest accomplishments in the last 5 years.  Don’t be shy, tell us everything!

It often feels that chronic illness robs us of our lives.  As a result of the debilitating symptoms we constantly live with, the majority of our time is very often spent inside the safety and comfort of our homes.  Sometimes much of our time is even spent stuck in bed. It very often feels that chronic illness is controlling us rather than the other way around.  And because of these feelings of inadequacy and grieving over the life we have lost takes place in our conscious thoughts.  I know from personal experience, that very often we feel that because of our time spent living with illness, we have not accomplished anything special, especially when witnessing the many accomplishments and big life events of our friends and family on social media. We forget to celebrate the small victories and accomplishments that we achieve without us ever realising it; sure, they may be inconsequential to an outsider, but fellow spoonies and our close friends and family will know how big these triumphs are, especially as it shows our strength at not letting our chronic illness win and dictate our lives. So, as the prompt asks, I am going to share with you all some of the small victories and accomplishments that I have achieved during the last five years:

  1. Going on a cruise – This is probably the biggest accomplishment that I have achieved.  A lot of people are afraid of the unknown, but as fellow spoonies will relate, this fear can become worse when living with a chronic illness.  So, going on a holiday, and especially a holiday that we  have never been on before can provoke worry. What will it be like?  How am I going to feel during the cruise?  What if I become ill? A lot of questions are raised when going on holiday and a lot needs to be thought of when living with a long-term health condition.  But despite the worry and the severity of my condition at the time, I still went on the fortnight cruise and had a wonderful time

    The magnificent 'Adventure of the Seas'
    The magnificent ‘Adventure of the Seas’
  2. Going to Bath – I am a fan of Jane Austen, so it has been of one my dreams for sometime to go and visit the Bath, a city in which she lived for several years and influenced several of her novels.  And last week, I made it there.  At the time I was disappointed as the trip to the museum was the only visit I accomplished during the time, Mum and I spent there.  The rest of the trip was spent lying on the bed in the hotel as I was too unwell to do anything else.  But looking at it positively however, the trip was still an accomplishment as not only had I visited a new city that I had never been before, but I also visited someplace I wanted to go for sometime.
  3. Going to the Cinema – Due to the dizziness, going to places such as the cinema is very difficult for me, as it’s not only due to the extensive sensory overload which can make the dizziness worse and cause vertigo but due to the neurological condition, I am unable to cope with buildings which have high ceilings.  However, despite this when the film, Les Miserables came out I really wanted to go and see it as it’s one of my favourite musicals.  My carer took me to a smaller cinema, but it was still quite the ordeal and really had to battle against the dizziness and nausea.  Somewhere, despite all of this however, I managed to stay and watch the entire film and so therefore this was quite the accomplishment.BCCY6Z7CcAA0Q7e
  4. Started shopping at Next – Due to the problems with large buildings being able to go and shop in stores located in local retail parks is also extremely difficult, and as a result mostly use online shopping to buy clothes from my favourite store, Next.  However, before my cruise last year, I wanted new clothes to take with me.  So, once again I pushed myself to go in there, it was not easy and often had to leave the store and go back and sit in the car because of the severe trembling in my legs but the determination I had gave me the strength to try and try again.  Now, I regularly visit the store, even if it’s just to look around, and can even push myself to spend more time in there then I previously could.

    It's more satisfying shopping in-store than relying on the internet
    It’s more satisfying shopping in-store than relying on the internet
  5. Visiting new places – A lot of spoonies, I am sure can relate to the difficulty and worry of going somewhere we have never been before.  We spoonies often love the familiar.  Going to towns or cities which we know well is far easier when living with a chronic illness as we know where certain facilities are such as the toilet for example.  For me, suffering with severely weak legs and dizziness I often need to sit down somewhere quiet, and therefore when shopping in familiar surroundings I know where there are suitable places to take a rest.  When going to new places, however, we do not know any of these types of information, so visiting someplace new can cause worry and anxiety but during the past year or so I have managed to push myself to visit new places, which I have throughly enjoyed and although there have been problems such as legs giving way when I have not found any places to recuperate when symptoms flare, I am glad I have given myself the opportunity to experience new places and now have new places I love shopping!

What have been your recent victories and accomplishments?  Celebrate them all – even if they seem small and inconsequential!  Being a spoonie, even getting out of bed and having a shower is an achievement, especially on a bad day!

HAWMC Day 4: The unpredictability of a predictable 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 given prompts.

Saturday 4th April: Creature of Habit 

What good habits (health or otherwise) do you have?  Do you have a routine that you follow every morning?  Are there any bad habits you wish you could break?

As someone living with a chronic illness, my obvious morning routine consists of making sure that I take my daily medication to help manage the symptoms caused by my neurological condition.

Routine is something which is defined as ‘a sequence of actions regularly followed’.  Therefore, a routine follows a predictable pattern.  The only thing predictable about living with a chronic illness, however, is the unpredictable nature of our daily lives.

As a result, being able to maintain a regular routine is extremely difficult as we never know how we are going to feel from one day to the next.  We do not know whether our bodies are going to cooperate on that particular day.  In relation to my own experiences of living with a chronic illness, due to spastic paraparesis, my legs are weak and often there are days that I am unable to get out of bed due to the severity of the weakness.  When these days occur, therefore any routine and habits that I do follow become impractical.

It is not only the physical symptoms that make it difficult to successfully follow a daily routine but other symptoms such as pain, insomnia and fatigue are also obstacles in the ability to maintain a regular routine.  Due to fluctuating pain levels, I often find it difficult to sleep.  As a result, my sleep patterns become disordered and out of kilter; finding myself waking early in the morning one day and sleeping in late the next.  And fatigue is the biggest hurdle in my opinion as very often you feel too exhausted to be able to do anything besides lying down and watching television!

In terms of wishing if there were any bad habits, I would like to break, I suppose I would choose to checking my phone less!  I do check it often, as it often feels that it is my biggest connection to others (through social media) and the world outside my house.

Keep Calm and Carry on Wheelin’

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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’!

Think you know my health condition? Then can you spot the incorrect statement…

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Welcome to the eighteenth 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:

Three Truths and a Lie: Tell us three things that are true about you, your condition, your Health Activism, or your life.  Now tell us a lie.  Do you think we will be able to tell the difference?

 

So, you think you know my health condition?  Let’s see!  Can you spot the incorrect statement from the four statements below?

  1. The dizziness that I experience is constant
  2. The spastic paraparesis only affects my legs
  3. Both hot and cold weather affects my legs
  4. The vertigo is triggered by visual disturbances

Do you know which is the incorrect statement?  Choose which one you think the wrong statement is in the poll below and I will reveal the answer tomorrow!

 

 

Social Media and the chronic illness experience

This post is for the ‘Patients for a Moment Blog Carnival’ hosted by Leslie at ‘Getting Closer to Myself‘.

This month’s theme is Social Media and illness, with which there are two parts!  The first part is to describe our illness using just 140 characters; just as if we were using Twitter to do so.  This could just be one statement characterising the illness experience, or a series of statements of 140 characters.

The second part of the challenge asks us to describe how social media has personally impacted our illness experience.

So, how can I describe my condition just using 140 characters?  Well, this could be extremely challenging giving the complexity and the unrecognised nature of my illness.  But here it goes…

Neurological condition affecting the brainstem. The effects include constant dizziness, vertigo and spastic paraparesis affecting the legs

The first part is self-explanatory, obviously the illness that I live with is a result of a neurological condition, known as a long-standing brain-stem lesion.  The lesion is scarring of the brainstem, possibly as a result of a head injury of birth, although as it was diagnosed years later, the exact cause of the lesion is unknown.  The effects that I listed are the main symptoms that I experience as a result of the neurological condition.  As the statement suggests this include the constant dizziness (feeling as if my world is unbalanced), vertigo (as if the world around me is spinning).  The spastic paraparesis is another symptoms that is troublesome to my daily life.  It affects primarily the legs as suggested by the above statement.  It causes stiffness and weakness of the legs which makes it uncomfortable and at times very difficult to walk.  Often due to the weakness, it can cause my legs to suddenly give way from under me.  Recently, I have been battling severe trembling in the legs, a jelly-like feeling in my legs, which above all is extremely uncomfortable and leaves me unable to stand for long.  Of course, there are other symptoms that I experience such as nausea, neuropathic pain and fatigue.

Are you able to describe your condition in 140 characters?  Give it a try!

 

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To the second part, then!  How has social media impacted my illness experience?  For starters, the impact upon my illness experience is mainly positive.  Social media, not only allows patients to connect with others and share their stories and experiences, it also allows patients to raise awareness of their particular chronic illness, and share with others what it is like to live with illness every day, and everything that goes with it, for example, I often tweet via Twitter on how I am feeling, and attempt to write how the symptoms affect me and what it is like to live with them.  Not only is social media fantastic and advocating and raising awareness of illness, but it is great to connect with others, particularly when we are experiencing a flare or relapse, and gain support from other patients in similar circumstances.  It provides camaraderie for those experiencing chronic illness, like myself.

Think about when you are ill in bed, it often involves being stuck in bed, alone whilst everyone else is busy living their lives.  Asa  result, it often leaves you feel lonely and isolated, right?  Think if illness was a regular part of your life; being stuck in bed, lonely in your bedroom with no company was a regular part of your routine.  That feeling of loneliness and isolation is also a regular part of your life, however Twitter and other forms of social media, provides patients with chronic illness a perfect tonic, as it allows to converse with other people even when in bed via new technologies such as smartphones and tablets.

It provides entertainment and diversion from illness.   Often, when I am bed bound due to the extreme weakness in my legs, or due to severe dizziness, I am very grateful for the supportive messages that I receive on Twitter from other chronically ill patients and friends; they really brighten the day, and also reminds me that I am not alone on the journey through illness.  Social media provides real-life perspectives on illness, and besides the entertainment and social aspects, perhaps the most valuable features of such sites is it’s a place free from judgement and stimatisation that many experience in the real-world, as well as educating others about particular medical conditions in order to tackle the problem of stigma .

 

HAWMC 2013 Day 6: A Letter to my 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 reads as follows:

Write a letter to your condition – what do you want to get off your chest? 

Unfortunately, today I am feeling particularly unwell, and am not feeling up to writing.  So, instead I have decided to republish an older post, which was along the same line as today’s post, which asked us to write a letter to our condition.

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Dear brain lesion,

I am not sure quite what to say to you, as I have never written a letter like this before but I will try my best.

I find you very odd; I experience so many fluctuations in my condition – how I feel, and the severity in which I experience the symptoms that you cause me.  These fluctuations not only change day by day, but can also change hour from hour, or even minute by minute!!  And it’s these fluctuations that stops me from leading a normal life. This condition does not allow me the ability to make plans for nights out with friends, or holidays or full days out, as I never know how I will feel on that particular day, or even I am having a rare ‘good’ day, I have no knowledge whether it will remain that way, or if I will be taken ill sometime during the trip.  

Living with you day-to-day is hard, and it’s particularly hard when questions are raised by others about you.  You are rare, and not understood, even doctors can be baffled by you.  This then causes the mammoth task of trying to explain you – what you are, how you affect me and so on.  I would wish no chronic illness on anyone, but one which is especially difficult as you are is particularly hard to deal with.  The loneliness and isolation that you cause, can often be overwhelming; no one can understand exactly how I feel, or what it is exactly like living with you.  There are no support groups for people like me, living with you, no friends who I can call on when times are tough and I really need to vent; I have several confidantes – some online, some I can see in real life, but still no one that can just get ‘you’ and how you treat me; how you affect me.

I have lived with you for so many years now; many of those years I did not even know of your existence.  Now, you are constantly making your presence felt, like a loud, harsh scream being blasted in my ear.  Every turn I make, you are their, like a shadow; a dark figure lurking, waiting.  And then within a blink of an eye, my legs will give out; lying on the ground, unable to get up due to the weakness in the legs.  You causing embarrassment; you causing injuries and pain.  The doctors tell me that there’s nothing that can be done – no treatments to help, no reigns that I can attach to keep you under control.  When I was diagnosed with you, at first there was relief – relief at knowing that there was a name for you; relief that finally I had validation from the doctors’ that you were very much real, and not in my head as it was often claimed.  Then, I have felt despair; despair at realising that there was nothing anyone could do to treat eliminate you from life.  It was like being blindfolded and then left in the middle in the centre of a garden maze where I am expected to find the exit without any guidance and without the ability to see exactly where I was going.

You have made me your victim, from something that I cannot escape.  Never will I escape you; you live deep within me, deep within my brain, there will you be there forever.  But I will not let you win, I will not let you beat me, and I will be happy despite you, that I am determined of.  Because of you, I have found inner strength, have found things that I am good at, and have found ways in which I can help others and participate in social activities and pastimes. Despite you, I have found friends whom I can talk to and despite the problems you cause, they like me for who I am, and look beyond my imperfections.

I may not be able to beat you, but because of you, I am stronger than I have realised; have made me aware that I can overcome certain obstacles and overcome challenges that come within my path.  And I will not let you beat me – all the obstacles and challenges that you present , I will overcome; find my own path into achieving everything that I wish to.  I am hoping to go on holiday, possibly on a cruise, and I am determined not to let you beat me – I will have a good time despite you. 

And for that I thank you.

Rhiann x

HAWMC 2013 Day 2: Brain Stem Lesion? Here’s all you need to know…

 

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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:

Introduce your condition(s) to other Health Activists.  What are 5 things you want them to know about your condition/your activism 

For you all that are new to the blog and therefore to me – Welcome!  My name is Rhiann and I am 27 years old living in a small town within South Wales (UK).  The conditions which I live are a long-standing brain stem lesion and spastic paraparesis.  Both are as a result of damage to the brain, in which I suffered at birth (or so the doctor thinks) however I was not diagnosed until I was 24!

The brain-stem lesion basically means that there is scarring on the brain stem.  As a result of this, I live with constant dizziness with which I have suffered since I was approximately 8 years old, although it may have been before this age.  As well as the constant dizziness, I also have episodes of vertigo (spinning sensations) and visual disturbances.  The spastic paraparesis is connected with the brain stem lesion, and causes stiffness and weakness in the legs, and neuropathic pain.  The difficulties I experience with my legs can result in a lot of falls, especially as they often give way on me.  Lately, I have been experiencing episodic periods of numbness in my legs and cannot feel any sensation.

These are the 5 things that I would like to share with anyone new regarding my health condition/activism:

  1. My condition and the effects that it has on my life is for the most part invisible, and therefore it can be hard to accept that there is anything wrong.  But there is – and although the symptoms cannot be seen, they still have a huge impact upon my life and am unable to do a lot because of it 
  2. You are unable to compare one sufferer of a neurological to another – think of us all as snowflakes.  Like snowflakes, each case is unique as and it is possible that mot all patients will exhibit the same set of symptoms.  The types of symptoms and the severity of the symptoms both can vary widely from patient to patient.
  3. The condition is unpredictable – apart from the dizziness which is constant; many of the other symptoms can appear with no warning.  Added to this, I as the symptoms are unpredictable, I never know how I am going I am going to feel from day-to-day, sometimes even minute-to-minute.  Because of this it can be extremely difficult to make social plans with friends, as there is always a possibility that I will need to cancel
  4. Although symptoms can be unpredictable, I have however found that there are certain triggers that can exacerbate the severity of the symptoms.  These include fatigue (a major factor that can increase the likelihood of symptoms occurring), the common trigger – stress!  I have also found that the cold weather can really affect the spasticity in my legs, and so during the winter months I ensure that I really make sure my legs are warm when out, such as thermals underneath my clothes.  In contrast the very hot weather can also increase the severity of the spasticity and other symptoms, and during the summer I have to make sure I drink plenty and stay in the shade as much as possible.
  5. There is no treatment or cure for my condition, yes, I take some medications, but they are only to try and control the symptoms that I experience (although I have had little success with them).  The medications are for management of the symptoms rather than to treat the root cause – the damage has been done and unfortunately cannot be reversed.  Due to this, the condition is life-long, and at times can be disabling; there are times when my legs are so weak that I cannot get out of bed, or the dizziness is so bad that I am falling over the place, and so just need to lie down on my bed and rest.  The condition is also rare and so there is no real support for those like me (one of the reasons why I started the blog), and because the condition is such an enigma there is little research or literature on it, or no charity or organisation to provide support or advocacy – basically my condition is unknown.

In terms of my health activism I am on several different social networks.  You can find me on