Riding the waves of chronic illness…

Well this is my first post for well over a month.  I apologise for my long absence and lack of writing, but unfortunately once again I have been battling rough seas as a result of the symptoms associated with my neurological condition.

Take my legs for example, the trembling in my legs at times have felt so violent that everyday activities such as standing and walking has been particularly difficult.  Crippling fatigue has left me unable to function, and constantly finding myself falling asleep throughout the days but still finding myself with no energy no matter how much sleep that I had gotten!

Whilst experiencing these bad days however made me realise the importance of pacing.  Those of us living with chronic illness often report experiencing an increase in the severity of symptoms such as pain, fatigue, dizziness and cognitive difficulties after physical activity, and in particular when these activities have resulted in over exertion.  Doctors have named this phenomenon ‘post-exertional malaise’ and although is often reported in relation to myalgic encephalomyelitis (ME, or CFS) many spoonies living with a variety of different chronic conditions also report experiencing post-exertional malaise.

Preventing post-exertional malaise therefore largely depends on limiting activity to a level that will not exacerbate symptoms.  Pacing oneself is not always easy our limits do not have clear, unchanging boundaries, in other words we may find we are able to tolerate certain activities on some days but not on others.  Despite this however pacing is often regarded as the most appropriate self-management strategy that help us remain as active as possible whilst avoiding overexertion.  On bad days, therefore we need to limit our energy expenditure to the energy we have available.

Sounds easy right?  But in reality it is far from easy, as is often difficult to know the amount of energy we actually have to spare, and especially difficult when living with a condition in which the severity of symptoms fluctuate, like mine.  Despite this however, the importance of pacing and not overexerting oneself to avoid a relapse of symptoms is a lesson that I have been learning the hard way.

Although pacing is important when living with chronic illness, sometimes it is just nice to get out and do something that would be completely normal if it weren't for our chronic conditions
Although pacing is important when living with chronic illness, sometimes it is just nice to get out and do something that would be completely normal if it weren’t for our chronic conditions

Take for instance, a trip to a retail park that I took with my carer.  A retail park with a plethora of shops to peruse at length.  This particular retail park is quite large and due to the severity of the dizziness of late, it was a difficult trip to undertake but I was determined to push through the uncomfortable feelings and enjoy a day away from the prison that my house had become due to my condition.  Regular readers of my blog will know that when the dizziness is particularly bad as it has been of late, being in my wheelchair is extremely difficult for me and can often make it worse.  As a result, I abandoned the wheelchair and used my two very wobbly legs to make my way around the shops.  The trip was actually a huge success, as after a difficult start due to unrelenting symptoms but despite this and due to my  sheer stubbornness and determination I managed to walk around the entire complex.

Retail Park just like the one I managed to visit - take that brain stem lesion!
Retail Park just like the one I managed to visit – take that brain stem lesion!

For me it was a huge achievement, and although I was proud and enjoyed the day immensely, the days that followed were extremely difficult due to the severe symptoms that arrived days after the shopping trip.  Intense pain, severe trembling in the legs, dizziness and unrelenting fatigue arrived in full force just hours after arriving back at home.  And why?  I had exceeded my energy limit and overexerted my body’s limit.  I had failed to listen to my body and did not use the wheelchair when I probably should have.  And this is not the only example of times when I have failed to listen to my body which resulted in the increase of my symptoms.

Living with chronic illness is often like surfing.  When living with chronic illness, we often find that  severe and unrelenting symptoms including pain, dizziness and fatigue can knock us from being able to successfully live life, much in the same way large and violent waves swipe surfers from their surfboards into the deep waters below.  To live a successful life despite chronic illness therefore we must learn to ride the waves of life, learning to use self-management strategies to balance our lives against our conditions, and not let ourselves be overwhelmed by the waves that are our symptoms.

A new bracelet to remind myself to ride the waves of chronic illness and to not let it stop me from living my life
A new bracelet to remind myself to ride the waves of chronic illness and to not let it stop me from living my life

So let us all learn to ride the waves of chronic illness and live our lives despite the barriers that it can create.  To not be overwhelmed by our difficult circumstances and create a life that although may be different from the one we envisioned, be meaningful and joyful.  To not be defined by our condition but rather be defined by the successes that we achieve despite it.

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 12: When in Need of Self-Care…

408463_10150737747764254_36556179253_11203169_350344195_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 12th April: Day of Rest

Kick your feet up!  What is your ideal day in?  When you’re having a bad day, or a long week – how do you relax, recharge, and reset yourself?

Self-care can be defined as the process of maintaining health and managing chronic illness through health promoting practices and self-management.  It could also be defined as coping strategies during relapses or flares of symptoms.  Self-management are behaviours that are performed in response to signs and symptoms of illness.

When living with a chronic illness, therefore it is important to embed self-care and self-management practices into one’s routine.  Perhaps one important aspect of self-care is having a day of rest on days in which symptoms are particularly bad, or even days following a relapse to allow the body rest and recuperation, and a chance to regain depleted energy levels.

images

Recently, the symptoms associated with my neurological condition such as pain, dizziness and the trembling and weakness in the legs have been debilitating; often finding they become worse days after trips out with my carer.  As a result, I have been in need of days of rest myself, so this post should come easy!

These are some of my top tips for activities to put into place on those bad days, or just for when you need to relax, recharge or recuperate from life with chronic illness:

  • Date with Netflix (other streaming service are available!) or DVD: When I am having a bad day, or in need of a quiet or relaxing day, then watching a film is one of my favourite ways to spend my time, especially for someone who is somewhat of a film buff.  In particularly I love romantic dramas or even a good romantic  comedy.  Nicholas Sparks adaptations, such as Safe Haven, The Best of Me and The Notebook are amongst my favourite films to watch when having a bad day.  Or, the need of a quiet and relaxing day is a perfect opportunity to discover new films to enjoy20150411_183711
  • Art Therapy: The pain that I experience in my legs has been really bad of late.  So bad that it is hard to concentrate or think about anything else.  A while back, however I remembered an article that I read that discussed the new craze and resurgence of colouring books for adults.  In the article it suggested that the art of colouring-in is very beneficial for relaxing and beating stress and anxiety.  Colouring allows a person to concentrate and escape from their thoughts and daily life in a similar way that mindfulness does.  At the same time, I seen advertising for a new magazine called Art Therapy, which has pages of different patterns and designs for users to colour-in, also including pages dedicated to insights  regarding to mindfulness and relaxation.  Basically the magazine allows for quality time with yourself.  I subscribed almost straight away and after receiving the first issue, I have been colouring during my days of rest and has found it has been a great technique to distract myself from the pain.  It’s also really fun!20150404_182614
  • Pampering!: Nothing like a bit of pampering to relax and give yourself some self-love.  If I am feeling down or had a bad week, then I love nothing better than to use one of my luxurious nail kits and paint my nails.  Whilst Mum and I were in Bath, and my pain was bad, she went into the local Lush store and bought me a Massage Bar which includes an oil which has been shown to increase serotonin levels in the brain.  A great way to give yourself a little pampering and lift your mood at the same time!20140920_165005
  • Create a happy and relaxing playlist: Music has been shown to have a positive effect on mood and well-being.  And I love music and have songs on my iPod that triggers a special memory or instantly makes me smile.  So, why not create a playlist of happy and uplifting songs to put on your MP3 player for when you need a pick me-up, or relaxing and chilled music for the times you need to unwind and recharge.
  • Create a Comfort Box: I have written about the concept of a comfort box in previous posts.  But simply, a comfort box is a box that you can fill with things that brings you comfort, joy and relaxation.  Ideas to put in a comfort box include craft kits, pictures of happy times, favourite books, films or television boxsets.  Other examples include scented candles, favourite snacks or even a journal.  The comfort box can even be placed under or near your bed so that it can even be of use when stuck in bed due to chronic illness.

    Inside view of Comfort Box
    Example of a Comfort Box
  • Spend time stroking your pet: Take time stroking a pet (if you have one) as research has found that doing so can lower your blood pressure, helps the body release a relaxation hormone, and even helps cut down levels of a stress hormone.  And it has beneficial effects for the animal too!

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

 

The sound of illness is often silence…

When living with a chronic illness, any chronic illness there are of course many symptoms that we are forced to live with as a consequence.  Both physical and psychological effects of living with a long-term health condition such as the neurological condition that I live with everyday.  Perhaps one of the most significant and common psychological repercussions of living with a chronic illness, which is not always discussed is loneliness.

Loneliness is often discussed in relation to the elderly.  It is often seen as a consequence of getting older.  However, loneliness is a feeling that can strike at any age and whatever the personal circumstances of the individual concerned.  In my personal experience, through personal experience and with engaging with those within the chronic illness and the ‘spoonie’ community, loneliness can also be very much evident when living with chronic illness.  Not only is loneliness is felt in terms of living with a chronic illness itself, in the feeling that no else understands what it is like with living with such an illness. However, loneliness can also manifest itself in the physical sense – the lack of company.  One often consequence of being diagnosed with a chronic illness, is that friends can disappear from our lives.  Many cannot handle seeing a friend being in pain, or cannot understand when plans are often cancelled due to the onset of debilitating symptoms.  Living with chronic illness can often result in many hours spent alone in our homes.  Hours spent lying in bed or on a comfortable sofa.  Hours spent binge-watching boxsets, often because a lack of other options and to fill the deafening silence that surrounds us.

Bank Holidays are a time where loneliness and isolation feels more evident when living with chronic illness
Holidays are a time where loneliness and isolation feels more evident when living with chronic illness

Being alone is something that I routinely have to deal with as my parents are often working and have few friends living nearby that have the time to visit and keep me company on those days in which my symptoms are particularly bad.  It was on New Year’s Eve and New Year’s Day this year however, the feeling of loneliness and isolation was particularly evident.  Like previous years, I celebrated the start of New Year alone, whilst my parents were sleeping upstairs (both were unfortunately started work early the next day) and as I had no contact with anybody and no-one had bothered to phone or text me to wish me a Happy New Year the feelings of loneliness were exacerbated. I felt jealous whilst watching the live New Year celebrations on television and seeing those people who were friends and family for the night meant for celebration, whilst I was sat on my own.  The first day of a brand new year also started on my own in an empty house with only a dog whose only interest was sleeping.  As cards drove onto our street and emptied with the arrival of visitors to other houses in my street, I  felt even more alone and felt incredibly low.

It’s frustrating living with a neurological condition like mine.  Due to the symptoms which are particularly debilitating such as the dizziness and weakness in the legs (which are unpredictable and it’s not known when they may give way), I am not able to get out of the house alone.  Therefore, as a result it makes it even more difficult to be able to go out and make new friends.  It’s as if my neurological condition has torn down bridges between myself and the life that I want to lead, and instead has built a wall around me, trapping and confining me.

tumblr_mi1gm8TZuG1rkbnzpo1_500

It is of course, easy to make online friends or even penpals which I have been trying as a way to quench my thirst for human interaction and companionship.  These are great substitutes and an easy way to make new friends, but I still crave face-to-face interaction with someone around my own age over a cup of hot chocolate.  Isn’t that we all want in life?  Plenty of friends that we can count on during the good and bad times in our lives?  How to achieve that when living with an illness that prevents you from leaving the house unaided is still a huge question that remains.

Although that I hope to gain new friends during the coming year, and hoping that I will have people to celebrate the start of 2016 with…

Reflecting on one year and looking forward to the next…

Well, here we are – New Year’s Eve.  A time where we reflect on the past year that has just gone whilst looking forward to the new incoming year and all the possibilities that it could bring.

This time of year always seems significant as it offers hope and endless possibilities.  It tells us that although our year has been full of highs and lows, it allows us to celebrate the fact that we have survived another year.  It feels that we are on the precipice of change.  It’s funny though really isn’t it?  I mean as significant and exciting it is that we end one year and at the beginning of another, it really is just another day on our calendar.  And although we often feel that the new year brings about change and new possibilities; nothing really changes (apart from the hanging of a new calendar on our walls).

The days after Christmas allows us to sit down and contemplate the year that has passed.  To celebrate the triumphs of our years and to dwell on the things that didn’t go well or those which we weren’t expecting.  It is a time to reflect on everything that has happened and to make plans for the new year (for me this includes a trip to Bath and another cruise!).  We mark the occasion by making New Year’s Resolutions; a list of things that we hope to change or what we want to achieve during the next 365 days.  Social Media sites such as Twitter and Facebook, even join in these celebrations by creating a review of everything we have contributed to our timelines.

I remember an old tradition that my Mum told me, and one which my great-grandmother used to do every year – this old tradition saw people opening their front and back doors as a way of letting out the old year and to bring in the new.  A beautiful tradition that offers everything that the new year is all about – the celebration of the old, and looking forward to the future.

images

But however exciting and wonderous the prospect of a new year brings, it is not always the case when living with a chronic illness.

Although the new year offers celebration of getting through a year living with debilitating symptoms, endless hospital appointments and many days lying in bed, it can also be a time of great anxiety.

As many look forward to the new year and everything that it could possibly offer, we spoonies wonder what the next year will bring.  What questions will be answered with upcoming hospital appointments?  Whether new symptoms will present themselves?  If there will be a deterioration in our health within the next 365 days.  Yes, we contemplate everything non-health related too, but when living with chronic illness everyday, it is hard not to first think about our long-term health conditions when it is such a time to reflect and contemplate the end of one year, and the prospect of the start of a new one.

Personally, for me although this past year has seen many changes in terms of my own neurological condition; most of which are not for the good with the deterioration of many of my symptoms, there were however many highlights and positives that have happened during 2014, including:

  • Visiting new places
  • Being able to shop in Next for the first tine in years
  • Our cruise (although there were still many tough days, the experience of the trip was positives in many ways)
  • Meeting new people and making new penpals
  • Writing for a digital publication for those living with chronic illnesses
  • Being interviewed for a pharmaceutical magazine as a patient and my views on healthcare (it was lovely for someone to take an interest in my opinions)
  • Meeting my new neurologist who actively listens and interested in my opinions and those of my parents

Those were just some of the positive experiences that has made up my year during 2014.  And hoping that there are many more during 2015!!

I hope that when you are sitting and contemplating your year during the last 365 days there are many good points to take away.  And what’s more, I sincerely hope each and every one of you reading this has an amazing New Year’s Eve and that 2015 is a magical and wonderful year for you!

Cheers!!

url