HAWMC Day 16: A Focus on the Present…

405097_10150737750419254_36556179253_11203190_1028463521_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.

Thursday 16th April: Life Goal

What’s one thing that your 10-year-old self thought you would do?  Can you still do it?  How would you approach it to make it happen?

Me at ten years old really seems like a lifetime ago; more than the nineteen years that have passed since.

In all honesty, I cannot remember anything that I thought I would do as an adult.  By that age, the dizziness that now is constant in my life, had started.  At ten, the dizziness was not constant, but was experiencing episodes of severe dizziness and vertigo.  These episodes were becoming very frequent, and as a result, it felt like most of my time was spent waiting for the next attack.

As at the age of 10, I was not really aware of what was happening in regards to my health and the reasons for the dizziness; but experiencing frightening symptoms at a young age can be anxiety provoking.  It makes you aware of the present, constantly on edge for the next attack. As a result of waiting and worrying for the next attack of the dizziness, I was therefore not thinking or making plans for the future.  I was too preoccupied on the present and the symptoms that were afflicting my life.

Life often has a way of making us to look at the past, present and future
Life often has a way of making us to look at the past, present and future

Although, as a child who has always been studious, I suppose that I have always had the wish to further my education and attend university.  At that age, like many children at that age, my career aspirations were constantly changing; from wanting to become a teacher at one point to wanting to become a nurse during another.  Even if I do not make any more of my past aspirations a reality, at least I have made that university plan a reality, gaining a degree in Psychology.   Attending university and getting that degree whilst living with a neurological condition, and battling against the dizziness, fatigue and pain was not easy and had to have a lot of help (such as a buddy to take me to lectures) from family as well as the university staff to make it happen.

Fast forward to me at twenty-nine and I suppose I still tend to focus on the present (and occasionally on the past) and not on the future.  It can be scary and worrisome to make plans for the future when living with a chronic illness, as we have no control or even an idea as to what our health will be like in months or years to come.  Experience from having to cancel plans with friends as a result of chronic illness, warns us of the perils of making short-term plans, so making more long-term plans is even more difficult.

The-Challenge-Of-Living-In-The-Present-Momentjpg

 

Over the past several years, the symptoms caused by my neurological condition, have become increasingly worse, so looking ahead to the future is a frightening prospect at the thought that in the years to come, my condition will be even worse than it is, therefore, perhaps when living with a chronic illness it is best to live in the present and appreciate all the little happy moments that happens in the here and now.

Today's a gift.         That's why it's

 

HAWMC Day 14: Trying to take on the world…

hawmc_2012_dayprompt-14

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.

34942308_Next_290666c

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 11: A Spoonie and her Faithful Friend…

306579_10150737747584254_36556179253_11203168_770608347_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.

Saturday 12th April: Pet Pal 

Write a thank you letter to your furry, feathery, or fishy friend for always being there for you. How have they helped you cope with your health condition?

Dear Honey,

It seems strange writing you this letter, as for you are a dog, and therefore cannot read.  But this is a letter of thanks.  A letter of thanks to you for your many years of love and loyalty that you have not just shown to me, but to the entire family.  A letter to thank you for always being there for me through the good and the bad.

Gorgeous picture of Honey :)
Gorgeous picture of Honey :)

Who knew that when we first got you fourteen years ago from The Dog’s Trust that we would have been on this long and arduous journey together.  It is true that even back then, I was ill; suffering from unexplained dizziness and problems with my legs but we had no idea the cause or that it would be long-term.

Even more incredible was the connection that we developed.  Do you remember the times when you suddenly started crying?  We do, and the times we would try to figure out the reason behind it!  And then we noticed the correlation between the crying and the onset of the dizzy spells that I was experiencing – you were warning me when the dizziness was going to start.  It wasn’t just this, of course, which solidified our connection, but also the fainting spells that happened a couple of years after you came into our lives.  I don’t remember the moments before the attack, however, but I just remember coming to and seeing you standing over my body and licking my face.  How clever and loving you are!

Now of course, being diagnosed with a neurological condition which has deteriorated quite significantly since the time we first brought you home with us, a lot has changed.  For instance, I am home a lot more as I am too weak and unwell to leave the house unaided, and in addition, because of the weakness in my legs, I can no longer take you for walks either by myself or with Mum.

This is a picture of Honey on 'Rhiann Watch' on a day in which I was in bed due to severe dizziness and incredible weakness in my legs.  Was home alone so Honey saw it has her duty to keep me company and make sure all is well!
This is a picture of Honey on ‘Rhiann Watch’ on a day in which I was in bed due to severe dizziness and incredible weakness in my legs. Was home alone so Honey saw it has her duty to keep me company and make sure all is well!

But what hasn’t changed however, is the love, loyalty and companionship that you show me.  The love that you obviously feel for me; the wag of your tail when you see me, how you bark at me when my legs are too weak and not stopping until I am safely sat on the sofa.  Often my symptoms are severe, and a lot of those days, both Mum and Dad are at work and therefore home alone, but having your presence with me is comforting.  It makes me feel both comforted and protected having you snuggling with me whilst I am lying on our sofa with a  blanket, too weak to move.  Or when the weakness is so severe and stuck in bed, and you will come upstairs regularly and check on me, or lie next to my bed makes me feel loved and well looked after and managed to raise a smile on a bad day.  I feel so guilty on these occasions as I am unable to get up to feed you, and although you do constantly harass me to do so, you never hold it against me that I cannot do so.  You still show me a lot of love and affection.  And I reciprocate; I even love you coming into bed with me, even if you do somehow take up most of the bed!

You have brought so much joy to our family during the last fourteen years; you make us laugh with your silly antics and especially the cheekiness that you are exhume on an almost daily basis.  But most of all I love our cwtches (so cute when you lean against me and tuck your head into my neck) and the kisses that you give when I am feeling at my worst.

I feel so fortunate and grateful that we found you from The Dog’s Trust that September fourteen years ago, although sometimes it feels that you chose us than the other way around.   There is an old saying that ‘a rescue dog loves you more’ and I really think that you are the perfect example as I can’t imagine another dog loving and taking care of me they way you have.  You will always be a loved member of our family.  We certainly will never be able to forget you.  Thank you for everything you have done for me, and always being there when I am in need of comfort.  I know nothing lasts forever, and you are getting old now, but I still hope that we still have several more years ahead of us together.

Lots of love from your loving owner

Rhiann

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!

A Bad Day Does Not Mean The End of the Day…

Regular readers of my blog, and especially those who follow me on social media will know that life recently has been very tough due to the symptoms that are caused by the neurological condition that I am now forced to live with.  The symptoms associated with my neurological condition such as dizziness, fatigue, pain as well as the severe weakness and trembling in the legs have all deteriorated.  And as a  result of this deterioration, it has resulted in the loss in the ability to do a lot of the things that once came so easily, or those activities that I enjoy participating in.  One example, is the great difficulties that I have experienced in visiting our local high street.  Before this sudden deterioration, I found it so easy to be able to park in the town’s car park and walk the moderate distance towards the top end of the town to visit the shops that I like to browse and buy everything that I need.  However, recently due to the deterioration in the symptoms in my legs (the pain, trembling and weakness) even the short walk from the car park to the shops have felt more like the prospect of walking Mount Everest.

Dealing with symptoms can often feel like an uphill battle...
Dealing with symptoms can often feel like an uphill battle…

As a result, my carer has instead had to use the disabled parking bays in the town centre itself, so that I am able to use the amenities that I need to use, and still be able to go to the shops that I like to visit.  This arrangement has been far easier as they are extremely close to all the shops that I regularly shop at, but in all honesty, some days it is still a struggle to go shopping because of the severe weakness and trembling in the legs.  The dizziness, has also caused a very big obstacle in going out because it has become so intense, and has resulted in me having to wear a hat when visiting places (wearing a hat helps to limit the exposure to triggers that can cause vertigo, double vision or make the dizziness worse).

Last week was a particularly bad week, and a trip to town was cancelled after my legs almost gave way in the middle of town.  Instead, because the pain and weakness was so bad, my carer and I returned to the house and watched a film.  It is bad mornings with chronic illness like these which can be difficult for our morale and self-confidence; and very often it can feel that our day is already over thanks to chronic illness, unable to accomplish anything because of debilitating symptoms and so instead we find ourselves spending the rest of a ‘bad day’ spent in bed or lying on the sofa watching a marathon of our favourite TV series (my guilty pleasure of the moment is One Tree Hill).

However, I recently learnt that it does not have to be this way.  I found a blog post that read:

Today is not over yet.

And it is true.  At the time, I wrote off the day that my legs decided not to work properly and had to spend the morning watching a DVD instead of the shopping trip I had planned.  But that was not the end of the day.  After the film, and after I regained enough strength in my legs, my carer and I took a short drive to a nearby coffee shop and had lunch.  It actually turned out to be a lovely trip out and exactly what I needed to take care of myself and my body against the effects that my condition has had on my life.  And perhaps ‘Today is not over yet’ is a mantra that we spoonies need to remember.  Just because a day has started off bad because of the effects of chronic illness does not mean the day will be bad.  It does not even mean that the day is over.

Finding joy can often be like seeing a rainbow appearing behind clouds...
Finding joy can often be like seeing a rainbow appearing behind clouds…

We can find joy in the little things on the bad days – a letter or card from a dear friend landing on the doorstep, a cuddle from a furry friend, a favourite song on the radio, someone making our favourite meal. Our silver linings can come from the smallest of things.

So, our chronic illness may have meant that we have frittered away our time doing as little as possible, however as the quote suggests it does not mean that our day is over.  We are still here and we are still very much alive and as long as we are it is not to late to do something, to do anything.  It can provide the perfect opportunity to pursue some self-care practices in order to take care of not just our physical health but also our psychological health.  A few self-care activities may include:

  • having a soothing bath
  • meditating
  • reading
  • pampering yourself, e.g. getting hair done or even a manicure
  • crafting
  • can even be as simple as setting limits for yourself

Even if you do end up doing something, it may be something that we hadn’t planned on doing or even wanted to do.  However, it might just end up being something we needed or better than originally planned.  Just like my impromptu visit to a local coffee shop.

So next time, you have had a bad start (or at any point of the day, really) to the day and your thought is navigating towards writing the entire day off as a bad one, just remember:

Today is not over yet.

Struggling with Storms but hoping for a Rainbow…

Well, today marks the start of a brand new start month.  The start of something new – whether it be a new day, month or year.  It is like a fresh, white piece of paper, in which the past and everything that has come before is forgotten and instead we are allowed to start afresh.  To start our story anew.  It opens up new possibilities and opportunities and allows us the hope for a better today and tomorrow (and beyond).

url

And this is most important when living with a long-term health condition.  To live with illness everyday is most difficult; and perhaps one of the most difficult aspects of living with a chronic illness, is the unpredictability of it and the unknown of what each new day will bring.  Even with every little sign of illness such as a headache, for example brings the fear of the start of new symptoms or even the possibility of a deterioration in our illness narrative.  Therefore, hope is a vital thread for us to hold onto as it allows the possibility of a life without chronic illness and our lives dictated to by our symptoms.

During the recent weeks since by last blog post, I have been trying to remember these points.

As much as I have been trying to remain positive and to hold onto the invisible thread of ‘hope’, I however have been living with the storm clouds above my head.  Just before the beginning of 2015, I had the hope that this will be a really good year.  Don’t get me wrong, I do not have the irrational belief that I would miraculously be cured during the coming year, but as I had a few good weeks before Christmas, I did have the hope however that it would be the year that my symptoms would not deteriorate and I would experience a decline in the severity of my symptoms.

c95d0a8225245e4c5ffc8ab5ad79ecb4

It would seem that this particular thread of hope has unravelled.

In fact these past few weeks has been the hardest weeks that I have experienced in relation to my chronic illness for a long time.  It often feels that my body is taken a severe battering from all of my symptoms.  The dizziness has been so severe, that even doing the simplest things extremely difficult.  The trembling and weakness in the legs has also been very severe, that as my legs are feeling extremely jelly-like, that recently I have lost all confidence in being able to visit our local town centre and walking around the shops.  Using my wheelchair is obviously one option, however due to the severe dizziness and the constant perceived motion that I am experiencing, it would make me feel even worse.

Everyday of late has felt like an uphill battle from the moment I get up out of bed until I go to bed later that day.  Because of the severity of the dizziness, nausea, weakness as well as the increased levels in fatigue, has meant that I often just want to go to bed and burrow myself under my covers and stay there for the forseeable future.  However, I have not given into my longings and have been pushing myself to still going out, although am finding my trips out have been considerably shorter than previous months.

During my last post, I discussed the feelings of loneliness and isolation that can often accompany chronic illness, and during this recent battle these feelings have unfortunately only increased.  Perhaps one of the main reasons is not letting anyone in my close circle of friends and family know just how bad things have gotten.  Of those who are in my close circle of confidants, I have tried reaching out, not getting an immediate response when I actually in need of someone.  This has often only increased the feelings of depression.  Often thoughts of whether I am liked within my circle friends often follow, stupid I know but perhaps illustrates how difficult things have gotten recently.

I am trying to think of some ways to widen my social life, and perhaps make way for new friends, perhaps even considering the social network Meet Up and setting up a group for those like me who are living with a chronic illness or disability and who are also socially isolated because of it, just a thought in progress at this stage but would love to hear your thoughts and whether anyone has had any success with the site.

At the moment I am dealing with dark storm clouds still have hope of the appearance of a bright and beautiful rainbow in the hopefully not so distant future…

RainbowShower

 

Life in a Spin

Dizziness.  Giddiness. Vertigo.  Lightheadedness.  Wooziness.  Disequilibrium.  Unsteadiness.  Faintness.

Whatever word you choose to describe it, dizziness is defined as “having or involving a sensation of spinning around and losing one’s balance.”

It is also a symptom that I have lived with since early childhood.  The reasons for the dizziness is as a result of my neurological condition; a long-standing brain stem lesion.  Although we know the cause of the dizziness, we are unsure of the reason why the dizziness and vertigo occurs, and what it worse we have no way to treat or cure this very life-limiting symptom.  In the past I have tried various medications as well as undertaking vestibular rehabilitation exercises but unfortunately nothing has worked in even decreasing the severity of the moving sensations that I have to live with twenty-four seven every day.

Dizziness is not just an unpleasant symptom; it is also one which is life-limiting (Click to Tweet)

Dizziness can send you into a spin
Dizziness can send you into a spin

This condition and the symptoms, such as the dizziness has changed me.  It has also affected every part of my life.

Dizziness has not only changed me but it also affects every part of my life (Click to Tweet)

I cannot stand without feeling my body swaying due to the balance problems that the dizziness and vertigo causes; I find it difficult to be able to leave the house on my own due to the disorientation that dizziness and vertigo can cause.  Some days that I am so dizzy and the spinning is so extreme that I am unable to get out of bed.

Through this whole experience and after living with dizziness for so long, I have come to learn how little dizziness and vertigo is understood within the medical community.  According to some online resources, dizziness is one of the most difficult complaints to assess because it is a subjective sensation with many differing descriptions of the experience.  Furthermore, doctors are also unable to directly and objectively measure dizziness.  And mirroring my own experiences, patients complaining of dizziness and vertigo will see a number of different specialists, as dizziness and vertigo can be caused by a multitude of different pathophysiological processes, thereby making diagnosis particularly difficult.

As a result of it not being understood within the medical community, it is therefore also not understood within the wider community.  That is why awareness events are so important.  Now, there may not be an awareness week for my particular diagnosis, but the American organisation VEDA (Vestibular Disorders Association) is this week helping to raise awareness of Balance or Vestibular Disorders this week (September 15th – September 21st) of which dizziness and vertigo is a classic symptom.

The vestibular system includes the parts of the inner ear and brain that process the sensory information involved with controlling balance and eye movements. If disease or injury damages these processing areas, vestibular disorders can result. – VEDA website

Vestibular disorders can also include the following symptoms:

  • Visual-spatial problems
  • Clumsiness
  • Fatigue
  • Holding head in a tilted position
  • Difficulty in concentrating
  • Tendency to touch or hold onto something when standing
  • Poor hand-eye coordination

See this informative infographic from VEDA to find out more about these disorders.

Infographic_final

There may not be an awareness week for my neurological condition anytime soon but I am happy to support an awareness event to raise awareness of a symptom that greatly affects my life.  I may not live with a vestibular condition myself, but after living with dizziness and vertigo for so long, I can understand and empathise with those who do.  So, I will help VEDA and stand in solidarity with everyone affected by dizziness, vertigo and balance conditions and do so whilst wearing my ‘Dizzy not Drunk’ t-shirt!!

 

10616236_661980933919318_420244683745266107_n