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It's Beginning To Feel A Lot Like Christmas
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It’s Beginning To Feel A Lot Like Christmas

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Sheryl from A Chronic Voice, as well as sharing her own stories and lessons with chronic illness.  Sheryl is an excellent support to other bloggers and writers living with illness and chronic pain.  One such way is through monthly link-up parties whereby bloggers and writers share their stories through given prompts.  I’ve decided to take part in this month’s Link Up Party, using the prompts to describe the run-up to Christmas from the viewpoint of someone living with a neurological condition. 

De-Stressing 

De-stressing: Verb.  To become or cause to become less stressed or anxious

The holiday season is among us.  A time for celebration, rejoicing spending time with loved ones, and giving and receiving with those who matter. 

However, the season, for many is also a time of stress and anxiety.   

The worry of finding the perfect present for our near and dear.  The growing list of tasks to prepare for the big day as well as the fatigue from this season’s various obligations.

Chronic illness presents numerous limitations that can challenge our ability to enjoy and participate in the season’s festivities.  It is therefore vital to find ways to de-stress to help us survive and enjoy the most wonderful time of the year. 

Chronic Illness presents numerous limitations that can challenge our abilities to enjoy and participate in the season's festivities. Share on X
the advantages of online shopping for destressing during Christmas preparations
Who wants to be laden down with lots of heavy shopping bags when we can take advantage of online shopping.  For those with chronic conditions it makes life much easier as it doesn’t affect our already limited mobility 

For me, one way I have been doing this is taking advantage of online shopping.  Recently I have been struggling with my mobility, and the thought of traipsing around shops searching for that perfect gift fills me with dread.  So, my Christmas shopping adventure has been virtual, taking advantage of online offers and discounts.  And all done in the comfort of my own home, wearing comfortable pyjamas and without the worry of falling over! 

As much as Christmas is a season about giving to others, it is also essential to ensure we take time for ourselves as well.  To seek time for self-care and those practices that provide enjoyment and the chance to unwind from the stress.

It's Beginning To Feel A Lot Like Christmas

To de-stress it’s important to be fulfilled with the festivities that we can enjoy. Instead of being disappointed in the fun and games, we cannot take part in during this season of merriment. 

Savouring 

Savouring: Verb.  To enjoy food or an experience slowly, in order to enjoy it as much as possible 

In the mornings, dark, dreary and very often extremely wet weather greets me as I look outside my window.  Everything seems dreadful and depressing.  Unfortunately, my mobility limits my ability to go out regularly, and particularly at night when my balance worsens.  Therefore, when I do have a rare opportunity to venture out at night, I savour taking delight in observing the beautiful Christmas lights and vibrant decorations that adorn shops and houses.  The twinkling lights and festive decorations are a welcome distraction and look cheery against the dark and bleak Winter nights. 

Twinkling lights and beautiful festive decorations are a welcome distraction and look cheery against the dark and bleak Winter nights. Share on X
One of my favourite aspects of the lead-up to Christmas is witnessing the beautiful lights and displays which look so beautiful while juxtaposed with the dark and dreary Winter nights
One of my favourite aspects of the lead-up to Christmas is witnessing the beautiful lights and displays which look so beautiful while juxtaposed with the dark and dreary Winter nights

I will also savour the opportunities for spending time with close family and friends, especially those who I am unable to spend much time with during the rest of the year because of a lack of time or the great distance between us.  To savour the time spent with those who appreciate my company and who makes me comfortable to be myself.  Those who see me as a person, and not merely as a sick person. 

One of the things I love most about Christmas is that there is so much to savour during the season.  The joviality, the delicious and inviting food of which is plenty and the many moments of spent with loved ones which are more prevalent than any other time of the year. 

Simplifying 

Simplifying: Verb.  To make something less complicated and therefore easier to do or understand

As previously mentioned, this year I am simplifying my Christmas preparations and taking advantage of online shopping.  For someone with limited mobility and suffering from intense fatigue, it makes it easier to search and buy that perfect gift for that special someone.  Very often, it allows the opportunity to send the gift directly to the participant, simplifying the giving process for those who are housebound or cannot stand in the long queues at the Post Office. 

The decorating of the house has also become simplified since my symptoms have worsened.  Instead of the long process of assembling the artificial tree, and adorning the tree with tinsel, twinkling lights and festive decorations, we have since invested in a fibre optic tree.  This takes the time out of decorating and therefore lessens the fatigue that it usually leaves in its wake. 

Resting 

Resting: Verb.  To stop doing an activity or stop being active for a period of time in order to relax and get back your strength 

With so much to do and preparations to organise before Christmas Day arrives, rest is vital for recuperating. 

When living with a chronic illness, we often do this by pacing for and during each activity.   For example, if I am going out, I limit the amount of activity I do beforehand to ensure I have enough energy in my limited supply to do everything that I need to do.  And when I am out, I am careful to limit the amount of the time that I am out and also to consider the amount of energy I am exhausting. 

Resting activities needn’t be boring.  When out and feel my legs becoming fatigued and shaky, I have been enjoying much-needed rest spent in warm and cosy coffee shops enjoying the latest book I have on the go.  It also provides the perfect excuse to wrap up with a snug blanket in front of a cheesy Christmas film.  Or indulging with a favourite Christmas classic.  Miracle on 34th Street anyone? 

Finalising 

Finalising: Verb.  To make a final and certain decision about a plan, date, etc

At the moment I am finalising the last of the presents I have to buy.  One last gift for my Dad.  I like to ensure that I spend the same amount on both my parents.   They both equally do so much to take care of me, that I  make sure that I don’t favour one person over the other.  And so far, I have spent more on Mum so need to find one more for my wonderful Dad.  But that’s the question.  What do you buy a man who has everything?  So if anyone has any suggestions, let me know! 

Due to the many obstacles that symptoms create, I tend not to make plans as they often inevitably ends with disappointment when they don’t materialise.  Especially as of late when my symptoms have been particularly severe.  So perhaps I need to finalise plans for the new year on how to emotionally deal with these setbacks. And to get into a better place in regards to my health.  

Maybe we all need to learn to simplify, rest, savour and de-stress for the whole year round instead of focusing on these during the most special times of the year, such as Christmas. 

We need to learn to simplify, rest, savour and de-stress the whole year round instead for just during Christmas Share on X

I have no idea what this Christmas will entail, but I hope it is a happy one.  And I hope the same for you all too. 

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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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In Chronic Illness

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I would just like to wish all the reader of my blog – both new and old a very Merry Christmas and hope it brings everything you wish for and much more.  I would also like to wish everyone the most wonderful New Year and hoping 2014 is an amazing year for everyone.

But most of all I hope everyone has a happy and healthy Christmas and New Year celebrations.

Take care

Rhiann xx

 

 

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In Chronic Illness

The ‘Spoonie’ Spirit of Christmas…

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Christmas – it’s often known as the ‘most wonderful time of the year’. It is also however, a stressful time of year, with all the preparations that need to be made – the presents, food, decorating the home and so on.  Add living with a chronic illness to the mix and the stress is exponentially increased.  The fatigue that often accompanies many different chronic conditions makes it very difficult to plan for Christmas, or even to feel the joyfulness of this time of year.

Whilst everyone is making lists of all the material goods that they wish to be under the tree come Christmas Day; we spoonies are wishing to be free of the debilitating symptoms that affect our whole life.  Simply, we wish for a cure; a cure that will end the chronic illness in which we live, so we can live a normal life.

Give back to those who help us throughout the year...
Give back to those who help us throughout the year…

This year, however, whilst shopping with my carer for presents for my loved ones – parents, friends that have been there for me throughout the year, and of course my dog, made me very happy.  It was then that I remembered the old adage ‘it is better to give than receive.’  And this is true, especially when living with a long-term chronic illness – Christmas allows us the opportunity to give back to those who are there for us everyday of the rest of the year.  The presents we give, of course, do not have to be expensive, but they are simple small token of thanks for everything that they do for us.

Speaking to my close loved ones, they often speak of the helplessness they feel; they are not able to take away the hurt, upset and anguish that accompanies chronic illness, and as much as they wish they could cure me they obviously are not able to do so.  However, instead they do what they can; they offer to help in the ways that make my life easier such as taking me to places that I need to go, be there for hospital appointments, do the little chores that I cannot do, as well as doing the little things that lifts my mood such as buying me chocolate or putting on my favourite film, and during holidays such as Christmas buying me little gifts to cheer me up as well giving me things that are practical.

Therefore, being able to give presents at this time of year, makes me very happy that I am able to do something, even if it is a small token of gratitude, and give back to those who give so much to help me throughout the entire year.

After all, isn’t giving to others encompasses the spirit of Christmas?

 

This post is for the December edition of the Patients for a Moment Blog Carnival which this month is being curated by Abigail from Hidden Courage.

 

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