Christmas Analogy for Spoonies…

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.  And what is the images?

It’s the snowflake!

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It’s well-known that no two snowflakes are alike.  Each one is completely 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 differing 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 learnt many lessons, and one such lesson that chronic illness has taught me that there is certainly 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 and gives 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 also found myself, often comparing myself to others, particularly family and those friends who are close in age to myself, and feeling particularly 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 are 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, and 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 really 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…

 

Spread a little magic…

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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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

 

 

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.

 

Surviving Christmas Shopping with a Neurological Condition…

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Welcome to the twenty-seventh day of the National Health Blog Post Month Challenge hosted by WEGO Health.  Every day during the month of November I will be writing a new blog post related to health and living with a chronic illness based on given prompts provided by WEGO Health.

Today’s prompt reads:

Black Friday and Holiday Shopping: In preparation for Black Friday holiday shopping, give some advice on how to survive the long lines and packed stores.  How do you find the best bathrooms?  How do you stay comfortable on your feet?  Give us some tips before heading to the stores.

Lets's start preparing for the holidays...
Lets’s start preparing for the holidays…

Living with a neurological condition, and the symptoms that go along with it, such as the constant dizziness, weakness in legs and the fatigue, can make Christmas shopping a complete nightmare!  Shops are incredibly busy, crowds of shoppers swarm around like flies, and the queues are exceptionally long.  So, how can other people living with a neurological condition like myself survive Christmas shopping?   Here are some tips to survive this time of year:

Surviving Christmas Shopping with a Neurological Condition...it can be done!
Surviving Christmas Shopping with a Neurological Condition…it can be done!

Take lots of breaks when out shopping

As Christmas shopping, and generally being at shops during this time of year, can be very stressful and demanding, it is important therefore that a person living with a neurological condition paces themselves.  Instead of visiting shops during the busiest times, such as on a Saturday, perhaps it is best therefore to consider doing your Christmas shopping on a weekday instead.  In addition, as Christmas often means a lot of presents to buy, it is important to take regular breaks so that it doesn’t all become too much.  Find benches or seats to sit down on, or treat yourself to a hot drink at your favourite coffee shop every so often. By taking breaks, and going to the shops when it’s quieter will be firstly less stressful, and is a sure way of conserving much-needed energy,especially if fatigue is an issue for you.  Also, you will be less likely to burn out and become unwell, which certainly would spoil your Christmas Day.

Wrap up Warm during shopping trips to avoid unnecessary pain...
Wrap up Warm during shopping trips to avoid unnecessary pain…

Wrap up warm…

Many people with neurological conditions, such as mine, or other conditions such as MS, for example, can exhibit symptoms such as neuropathic pain in various parts of the body.  Additionally, many people report that their neuropathic pain, worsens during the cold weather.  Therefore, if this sounds like you, I would advise that you wrap up warm when Christmas shopping as it can be very cold walking around all of the shops, and wearing thermals and other warm clothing such as scarves, hats and gloves will help not to worsen the pain.

Use a ShopMobility Scheme to help conserve energy and help you get around this Christmas
Use a ShopMobility Scheme to help conserve energy and help you get around this Christmas

Consider hiring a wheelchair or mobility scooter, or take your own to help you get around…

With the neurological condition that I live with, I experience severe weakness in the legs, and as a result of this my legs can suddenly give way,  causing bad falls.  In addition, to the weakness; fatigue can also be an issue for me and other people living with neurological conditions.  To prevent yourself from becoming too tired or you find that you are unable to walk far because of pain, weakness or fatigue, it may therefore be worthwhile in taking your wheelchair during trips Christmas shopping so that you can stay out for longer, and not become as exhausted as you would normally.  If, however, you do not have your own wheelchair, you may instead consider hiring a wheelchair or mobility scooter from a branch of Shopmobility.  Shopmobility is a scheme which lends manual wheelchairs, powered wheelchairs and powered scooters to members of the public with limited mobility to enable them to still visit leisure and commercial facilities within local towns, cities or shopping centres.  Furthermore, the scheme is for anyone – from the young to old; from temporary to permanently disabled.

To find out more and find where your local Shopmobility scheme is; you can visit their website at http://www.shopmobilityuk.org or by phoning 0844 41 41 850.

Planning is key for an organised and stress-free Christmas...
Planning is key for an organised and stress-free Christmas…

Be organised…

If memory issues are as a result of a neurological condition, it may be advisable to make a list of all those you have to buy for, and perhaps even ideas for gifts to buy them for Christmas.  This not only ensures that you don’t gorget anyone you have to buy a present for, but can also save time whilst out at the shops.  For example, if you already know what you want to buy them, then when you go to the shops you just have to find the items and then pay at the till – saving you time and much needed energy.  If you do not know what to buy them, but already know what shops they like, then you can even use the internet to research for gifts before heading to the shops.  By thinking ahead, you also reduce the amount of pressure and stress placed upon you during the season.

If the stress of Christmas particularly gets to you, then perhaps one of the best pieces of advice for anyone with a chronic illness is to start as early as possible.  Perhaps even starting your shopping for the next year in January when there are massive savings to be had during the sales.  By doing this and buying little things during the year, means there is much less to do when Christmas season does start.

If mobility and fatigue are a real issue for you..then save your legs and feet and surf the internet for all your gifts!
If mobility and fatigue are a real issue for you..then save your legs and feet and surf the internet for all your gifts!

If all else fails…turn to the internet…

If however, heading to the shops, with all the crowds makes you tired and stressed, or if your mobility problems are so severe that you cannot walk far, you may want to avoid the high street altogether.  If you have the internet at home, then why don’t you log-on and browse all your favourite stores whenever you want and at your own leisure?  Enjoy looking at the product and gift ideas for Christmas whilst snuggled under a blanket, with a mug of your favourite hot drink and chocolates.  Alternatively, you can browse mail order catalogues, and are another home shopping option that will help save energy – look out for special offers, free delivery and online-only deals that could also save you money, as well as conserving your energy levels.  The internet, is also a great opportunity to find gifts that are unusual and may be hard to find on the high street.  For example, I have just discovered a gorgeous online retailer, that sells some unusual and beautiful gifts for every member of the family (even well-loved pets!) and which suits all budgets.  Find out more by logging on to ‘Not On The High Street‘.

Alternatively, you can also use a ‘Click and Collect’ service that many online high street stores now offer; and then ask a loved one if they wouldn’t mind heading to the shops and picking your shopping up for you!

So, those are my tops tips for surviving Christmas Shopping with a neurological condition!  Do you have any other tips that could help people survive shopping during the season holidays whilst living with a chronic illness?  As ever please feel free to add any comments and suggestions below…

 

Preparing for the Holiday Seasons…

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Welcome to the National Health Blog Post Month Challenge hosted by WEGO Health.  Every day during the month of November I will be writing a new blog post related to health and living with a chronic illness based on given prompts provided by WEGO Health.

Today’s prompt reads:

It’s the Holiday Season! Give us some tips you use to balance the holidays and your health.  How do you stay within your own boundaries and make sure you follow your health regime/plan?

Lets's start preparing for the holidays...
Lets’s start preparing for the holidays…

Christmas is perhaps my favourite time of year.  Although it’s extremely cold and miserable weather outside, in my opinion the season still provides a lot of joy and fun for everyone.  However, although it’s an extremely wonderful time of year, it does provide a number of challenges for anyone living with a chronic illness or disability.  So, the question stands: how can we deal with the upcoming holidays and still have fun and merriment and still look after our health and well-being?

The first must-do, especially at Christmas is to pace ourselves.   Although, the Christmas season is a very hectic time of year, and there is plenty to do, it is important for anyone living with a long-term health condition to be realistic about how much you are able to do and cope with.  Perhaps, use a diary and pre-plan your days of what you can do to plan for the holidays and mark down when you plan to carry out specific tasks relating to the holiday season such as when to do the Christmas shopping, going to visit family and friends to drop in presents and cards, as well as finding time to put the decorations up, and so on.  By planning and making time each day to prepare for the holiday season, we can ensure that we can also make time to rest and recover any energy that has been depleted whilst planning for Christmas.  This is especially important, as if we do too much and take on more responsibility than our bodies can handle , then we run the risk of becoming ill and suffering a relapse in our condition, and will therefore have an impact on our enjoyment of the holidays.

Planning is key for an organised and stress-free Christmas...
Planning is key for an organised and stress-free Christmas…

Planning is also key in having a fun and carefree Christmas and New Year.  Make lists of everything that you need or plan to buy for everyone you are buying a present for.  This will certainly help alleviate any extra stress that Christmas can place upon a person.  This is especially important for anyone with a chronic illness as stress can exacerbate illness, which can then lead to a relapse.  Also, it is important not be afraid to ask for help when needed, or when everything is becoming too much as it inevitable can during this time of year.  Again, doing too much can be dangerous for anyone living with a long-term health condition as we then run the risk of becoming ill during the Christmas season, and as a result it would not be an enjoyable time for you, as it should be.

Of course, as a result of the Christmas celebrations it means that we often deviate from our usual routines – we stay up later, get up later, and we may eat, drink and do a lot of different things that we are not used to.  However, it is therefore imperative that although our routines may be disjointed from usual, we still must remember to take our usual medications.  If memory is an issue for you, then remind yourself by setting an alarm on your watch or mobile phone to prompt you to take them.  Also, the Christmas seasons may mean invites to a lot of parties and other social gatherings, so think about perhaps either arriving later or leave early to avoid tiring yourself out, or alternatively ask the host if there is anywhere that you can sit or lie down to rest and recover during the party.

Also, although it may be tempting to join in with everyone else, in enjoying a lot of alcohol, it may be that you need to watch your intake of alcohol, especially if on several medications as it could have an adverse reaction with them.  Check with a pharmacist if it is safe to drink alcohol.  In addition, as I always do before the holidays, make sure that you have enough of your medication to last throughout the holiday seasons,  and ensure that any prescriptions will be processed in time, allow plenty of time as there may be a rush on Christmas Eve; also stock-up on over the counter medications as they may too be needed over the holiday season.

There are my top tips for surviving the Christmas holidays with a chronic illness!  Do you have any other tips for the readers?  How do you live with a chronic illness but also ensuring you enjoy the Christmas festivities?  As ever would love to hear your thoughts, suggestions and other comments you may have!  Comment below…