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Struggling with Storms but hoping for a Rainbow…

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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).

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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.

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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

 

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In Chronic Illness

The sound of illness is often silence…

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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.

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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…

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A Christmas Symbol of Life With Chronic Illness
In Chronic Illness

A Christmas Symbol of Life With Chronic Illness

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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!

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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.

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

Spread a little magic…

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Christmas is most truly Christmas when we celebrate it by giving the light of love to those who need it most
– Ruth Carter Stapleton

Well, the Christmas season is nearly upon us and now is the time to start buying gifts for all your loved ones.  Of course, gifts can be bought and given at Christmas or birthdays – gifts are really lovely gestures for when a loved one or good friend is struggling due to personal circumstances.  One example, of course being when suffering a chronic illness.  When living with a chronic illness, we often experience both good and bad times due to our chronic illnesses, and when experiencing lows, I know due to personal experience that receiving a card or small present can bring a little sunshine to dark days as well as the pleasure in knowing that someone has thought of us, despite the overwhelming feelings of loneliness and isolation that can accompany life with a long-term health condition (especially one which results in the majority of days being spent in the house).

As it is the time of giving and thinking of others, I thought I would share some gifts that I have come across that someone going through a difficult time might appreciate, or is ideal for someone living with a chronic illness like myself!  And perhaps think about those who are experiencing difficult times presently and maybe think about sending them a card and a little something to remind them that they are not alone and that you are thinking of them.  It doesn’t even have to break the bank either – you could even try making a card instead of buying one, and if creative even make a present!

A friend of mine was going through a difficult time recently, and as funds were tight, I made her a little gift instead.  I took an old jar and cleaned it up, and thanks to my computer I printed lots of different positive and inspirational quotes I loved then cut them out and rolled each separate quote up, tied a ribbon around them and placed them in the jar.  I even attached a homemade label and called it a ‘Positivity Jar’ and wrote to take one out of the jar whenever feeling sad and low.  It was such a simple idea but my friend really loved and appreciated the thought, and even has it sitting on her dressing table and uses it whenever her bad days present themselves.  Other homemade presents might also include making a special playlist downloaded to a CD full of uplifting and positive songs to cheer them up during the bad days.  And if you are stuck for ideas there always lots of inspiration on Pinterest.

But here are some other lovely gift ideas for fellow spoonies…

Positive and Uplifting Gift Ideas 

It is common amongst the spoonie community to share through social media, positive and inspiring quotes – little mantras that help us stay positive and happy despite all of the limitations and constraints that our conditions places upon our lives.  It is these little mantras that help us and others who are going through a difficult time so what better present than one which provides positivity and inspiration to serve as encouragement to continue and persevere when the going gets tough.

My favourite online store for such inspiring and positive gifts has to be the Itty Bitty Book Company.  They are a small ethical and super friendly business based in Belfast, Ireland and offer a wide range of inspirational and positive gifts from cute badges to their gorgeous ‘Itty Bitty’ Books. In the books range are 3 different books offering inspiring quotes for Motivation, Positivity or Strength and in my opinion it is these Itty Bitty Book of Positivity and the Itty Bitty Book of Strength are ideal gifts for someone struggling with chronic illness or generally are experiencing a difficult time in their life.  I have all 3 of their gorgeous and handmade books and as they are small they are ideal to carry in your bag, and to read the lovely quotes and mantras when life gets tough wherever you are.

One of their beautiful prints would also be an ideal gift for any spoonie, and there are a number of different quotes on offer and if one of them has a favourite quote of theirs, even better.  They can easily be framed and placed in clear view of a bed or sofa; wherever they spend the majority of their time because of chronic illness, for example.  Or perhaps one of their cute little badges that can brighten dark winter coats or woolly hats, and are ideal gifts for a low-budget.  And they even offer inspiring greeting cards too which are blank so ideal when wanting to write a personal message inside.

To see the full range of products on offer, or to buy something for a friend (or yourself) you can check out their Etsy store here

Useful Gifts

From personal experience, I know that receiving gifts that have a useful purpose (such as a hot water bottle for example because of problems with feeling cold) can mean so much as it shows that someone as it not only shows that someone has thought of you, but also that they really care and therefore want to give you something that will make you feel better.  This can include a little comfort box filled with goodies such as a favourite type of tea, thick socks, body products and some sweets or chocolate.  For ready-made boxes that you can send with a variety of products that you can personalise for the person you are buying for, then I can recommend the ethical company Healing Boxes that make and send Healing Boxes especially for those experiencing chronic illness, or just experiencing difficulties in their life.  Lovely gifts on offer and a great way to show someone that you care.

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I can also recommend The Pillow Fort shop for fun and useful gifts for someone living with a chronic illness.  Examples of products on offer include cosy socks (for those with poor circulation and as a result suffer from cold feet perhaps), pill boxes (useful item that is a must for any spoonie as it helps to remember if you have taken medication or not!), cosy and cuddly soft toys that can be heated in the microwave (fun alternative to a hot water bottle as it is more comforting and just fun!).  And there are plenty more ideas and inspiration for useful gifts for the spoonie in your life!

Special Gifts 

Sometimes if we are able to  or the person is very close to us we like to give them a very special gift, which is especially true at Christmas for example.  One special gift for example is jewellery and I have come across some lovely pieces online.  Examples include some jewellery even inspired by the positive and uplifting quotes that we love,  I even own a pair of earrings, which are in the shape of rain drops and  a matching necklace in the design of a cloud with a rain drop attached and with these pieces of jewellery came a card with my favourite quote “Life isn’t about waiting for the storm to pass but learning to dance in the rain.”  I even have this card in my purse to remind myself that if I am experiencing debilitating symptoms when I am out that things will get better.  There are plenty of other pieces inspired by uplifting quotes on offer here.

Whenever we put a piece of jewellery on or look down and see it on display it can be a lovely reminder to remain hopeful during difficult times.  The online store Not on the High Street has a beautiful swallow necklace (bracelet and earrings are also available) for example which symbolises freedom and hope for example.  Another online retailer Lily Charmed even offers various items of jewellery than can even be personalised with a message of your choice on the card inside of the box.   I particularly love their spoon necklace which every spoonie will be able to relate to and love.  The snowflake may also be a nice charm to give as a reminder that the receiver is beautiful, special and unique as chronic illness can be difficult to live with, as well as often making you feel extremely different from your peers.

Other Gifts 

Other ideas for gifts which could be useful for someone living with a chronic illness might include:

  • Stationary – great idea for those who love writing and even if they don’t it might encourage them to start doing so as it can be very cathartic
  • Pyjamas – a must-have for any spoonie as we often crave comfort when we are feeling bad and pyjamas are the best type of clothing to offer this (that and perhaps onesies!)
  • Adult Colouring-in books – apparently these are very therapeutic for those experiencing depression and can perhaps offer similar benefits for those with chronic pain, as it could be a form of distraction
  • Gift card for iTunes or Google Play – these are especially great for those who love TV programmes or films as they can buy something to film to purchase to keep them company when stuck at home for example
  • Book – ideal for book lovers like myself!  Perhaps give them a book that they wouldn’t normally read
  • LED string lights – I love these as it gives any room a magical look and will help cheer a person who may be stuck in bed due to illness

So those are some of my top tips for lovely gifts for someone experiencing difficulties as a result of a chronic illness for example.

So perhaps think of those experiencing a difficult time this Christmas that will put a smile on their face and yours and let us all sprinkle a little magic this Christmas (and throughout the year!).

I have recently started a board on my Pinterest page called ‘Spoonie Gift Ideas‘  which has more ideas on special and thoughtful gifts for anyone going through difficult times because of a chronic illness.  Of course, if you have any other suggestions on what to pin then please feel free to get in touch on the blog or my pages on social media.

Let me know of any good deeds that you have done recently or throughout this holiday season and if you have bought something special for any other spoonies this Christmas.

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Alone in an invisible world…

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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.

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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?

 

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