Tag

neurological condition

Browsing
In Chronic Illness

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

No Comments

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.

by
Keep Reading
In Chronic Illness

Struggling with Storms but hoping for a Rainbow…

No Comments

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 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 every day is most difficult, and perhaps one of the most challenging aspects of living with a chronic an excellent 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 my 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 improve during the coming year.  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 not experience another 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 concerning my 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 have also been very relentless; 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 one option, however, due to the severe dizziness and the constant perceived motion that I am experiencing, it would make me feel even more nauseous.

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 foreseeable 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 tight circle of confidants, I have tried reaching out, not getting an immediate response when I actually in need of someone.  It has often only increased the feelings of depression.  Often thoughts of whether I’m liked within my circle friends usually 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, maybe even considering the social network Meet Up.

Or 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 but still, have hope for the appearance of a bright and beautiful rainbow in the hopefully not so distant future…

RainbowShower

 

by
Keep Reading
In Chronic Illness

The sound of illness is often silence…

No Comments

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…

by
Keep Reading
A Christmas Symbol of Life With Chronic Illness
In Chronic Illness

A Christmas Symbol of Life With Chronic Illness

No Comments

Once again it’s the most wonderful time of the year; and like the Christmases that have come before, we again have been inundated with various iconography associated with Christmas.  Images such as Father Christmas, snow and Christmas trees adorn popular decorations, and greeting cards meant for the holidays.

However, in my opinion, there is one particular image that is often associated with the Christmas season, which is a perfect representation of those living with chronic illnesses. What is it, you ask?

It’s the snowflake!

url

It’s well-known that no two snowflakes are alike.  Each one is entirely individual and unique – much like us spoonies.  Not only are we individual, just like everyone else with differing interests and personalities, but also fits in with living with a chronic illness.  Just as we are unique and individual, our chronic conditions and the way they manifest itself are just as unique.  This can be especially true with neurological disorders like mine as well as conditions such as MS and myasthenia gravis (which are both known as a ‘snowflake disease’) because there are so many different symptoms and no two patients are likely to exhibit the same set of symptoms.

Snowflakes as well as being unique and individual, are also beautiful – just like the spoonies that I have had the pleasure of coming into contact with through my blog or my other social media sites.  It is said that snowflakes are fragile, but when one or more snowflakes stick together, they actually become stronger.

During my journey living with this neurological condition, I have learned many lessons and one such lesson that chronic illness has taught me that there is indeed strength in numbers.  On the days that my body has felt weak and fragile, and feeling that the hope that helps me through is diminishing, it is messages of support from fellow chronically ill people that really helps me through the dark days.   These give me the strength to fight my symptoms and continue to live despite the often debilitating symptoms.

Recently, the symptoms that I live with on a daily basis such as the pain and trembling in the legs, the dizziness, fatigue, and weakness have been particularly debilitating, and as a result, I have been experiencing mild symptoms of depression that I often find accompanies periods of ill-health such as these.  Part of these low moods, I have seen myself, comparing myself to others, particularly family and those friends who are close in age to myself, and feeling notably different to everyone else.  And not in a good way.

However, snowflakes, and what they stand for can teach us that it is okay to be different from everybody else.  It teaches us that being individual and unique is in actual fact a good thing and, it is these differences that sets us apart from anybody else, and what makes us special.

Therefore, perhaps when we know someone (particularly a fellow spoonie) who is struggling.  Or who are feeling upset because of something which is affecting them and setting them apart, then maybe we should send them a card or a little present depicting a snowflake to remind them just how beautiful, special and unique they are – and that being different is more than okay.

472481c3ca5779f19d2e165e2a6fec87
Not only a beautiful piece of jewellery but a perfect gift for anyone who is struggling with being different…
by
Keep Reading
In Chronic Illness

Alone in an invisible world…

No Comments

This post is for a competition run by an organisation called Labs* by One Squat Shop together with health activist Megan Densmore.  Megan has organised a team of film-makers to make a documentary, called Invisible which highlights and raises awareness of invisible health conditions.  Lindsay Tabas of One Squat Shop has teamed up with Megan and with designer Mat Poirot have produced a limited edition t-shirt which together with the film highlights and makes people aware of the invisible symptoms that people with chronic health conditions suffer but cannot convey to others.  The competition is for one blogger (and one lucky reader) to win a copy of the film and t-shirt (or tank top for women). 

The prompt for the blog post is:

What does the t-shirt design mean to you? How does it make you feel? What does it tell people without invisible illnesses about your experience? How do you hope this will help awareness?

 

The word invisible conveys so many images and messages.  The definition states, that invisible is something that is “not visible, withdrawn from or ought of sight or something that is not perceptible by the eye.”  When I was much younger at secondary school, I thought I knew the meaning of the word as I felt completely invisible to the rest of my peers due to being continually ignored and much time spent on my own due to being ostracised.  However, after living many years with a long-term health condition in which the symptoms that I live with are hidden and cannot be seen by others, I now truly know the meaning of the word.

In many ways, living with an invisible health condition, such as the neurological condition which I live with, is like living inside a bubble of which you are the only one aware of its existence.  You are unable to convey symptoms such as pain, dizziness and fatigue to those closest around you, as they are subjective and is not perceptible to anyone else.  And as those closest to you, as well as society, in general, are not aware of the symptoms that are ruling our lives, those with invisible chronic health conditions are very often met with suspicion and as a result, people can often expect more of us than we are capable of due to ill-health.

As a result, therefore, there needs to be much more awareness of invisible illnesses and the debilitating effect that they can have on the individual living with a chronic illness.  There have been fantastic awareness weeks that have been established on the internet and through social media sites such as Twitter and Facebook, which to some extent have raised the awareness of such conditions.  However, there could be an argument that there needs to be more done to raise awareness of invisible chronic conditions away from the internet and more emphasis for the wider society in general.  In the UK, for example, popular soap operas have been very valuable in raising awareness of a wide variety of subject matter such as HIV, domestic violence as well as raising awareness of medical conditions, many being invisible such as MS and ME as examples.

Invisible---Girls2

This is why this tank top design may be another excellent tool to raise the profile and awareness of such illnesses.  The image above shows the very eye-catching design and for those, without any knowledge of such conditions it may raise important questions in their mind regarding the meaning of the design, and as the wearer of the tank top is asked about the t-shirt, it, therefore, allows a lesson of these prevalent invisible chronic conditions.  For me, the tank top is a great talking point for anyone not touched by invisible illnesses such as lupus, MS or fibromyalgia as examples.   Also, I am sure you would agree the tank top is also very clever with the design including the lungs as it reflects the idea of everyone being able to see inside our bodies, which in reality, of course, they aren’t.  For anyone living with an invisible illness, we often wish that everyone around us were able to see inside our bodies; to see the damage and signs of our conditions that only exist inside of us, and to allow friends and family to visibly see the struggles and pain that are a result of our invisible illness.  This tank top for me is an excellent representation of the unseen and invisible struggles that I carry around with me all the time, just as the lungs that are inside of me.  And for me it does all this without being rude or condescending; it is a fun and fashionable way to raise awareness.  As I live with mobility problems, as well as pain and other symptoms which are constant, these, of course, does not define the person that I am and for me the design perfectly reflects this – our bodies, whether healthy or crippled by illness is a reflection of ourselves, and does not define us as individuals.

I hope that the tank top design will remind individuals to not judge individuals by what they can see on the outside, but be mindful of the person beneath the surface and to be aware of the possible struggles that someone might be living with, which cannot be seen.

Here’s a 5-minute teaser for the film ‘Invisible‘

http://www.youtube.com/watch?v=0QZsXWWtR_c

As ever, would love to hear all of your thoughts regarding the subject of this particular blog post.  What are your thoughts regarding the t-shirt design?

 

by
Keep Reading
Pin It