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Falling Down A Vortex…

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Remember, Alice in Wonderland when she fell down the rabbit hole and found herself in a different world?  Well, recently that has felt like my life.  Except, that instead of finding myself in a world filled with the Cheshire Cat, the White Rabbit and the Mad Hatter; I have instead found myself stuck in world of pain, dizziness, depression, falls and loss of feeling in legs.

No, recently it has not been a happy time, and one of the reasons why I haven’t updated the blog for a while.  Writing in the midst of pain and depression has proved too difficult.  I think, i have also not wanted to wrote about the tough times, as I often worry about sounding too negative and self-absorbed.  However, a good friend recently reminded me that a blog about living with chronic illness should document the bad days as well as the more positive posts.  To keep a blog is to be truthful and to be reflective of life; and life for everyone has its ups and downs, especially when you factor a chronic illness into the equation of life.

The depression crept up on me out of the blue.  I suppose, it wasn’t a surprise that the depression has reappeared; it is only natural, when living with severe and debilitating symptoms for so long,  And the symptoms that have been severe lately has not just been the older symptoms such as the dizziness and weakness in the legs, but the newer symptoms have also been problematic.  Before now, I had only experienced short periods where I have lost all sensation in my legs.  Recently, however the periods with no sensation in my legs, have become much longer; lasting all day even.  For me, it feels so strange and unnerving to feel no sensation, and means that walking is much more difficult as you really need to concentrate and look to where my legs are – and walking become a lot slower than normal!

It was due to the loss of sensation which led to a very bad fall down the stairs, the other evening.  Typical, that I has alone for the night when it happened, having no one around to help me.  Luckily, the fall didn’t result in any broken bones or other significant injuries – just a lot of bruises and a cut on my leg.  The only casualty from the fall, was my Kindle, which now is broken and in need of replacing.  This really upset me, probably more than it would have, if not for the depression.  As many of you know, I have a love of reading, and my Kindle was a lifeline for me on the days where I am unable to get out of bed as it allowed me access to books when I am unable to go to my book shelves.

The casualty from my tumble down the stairs...
The casualty from my fall down the stairs…

However, as the loss of feeling in my legs ended; the feeling coming back, it only resulted in pain, and after the fall, pain like I have never experienced before.

The constant battles with the dizziness and depression; and the battle between pain and loss of sensation in my legs have really thrown me down the vortex and transforming the world that I thought I knew.  But, life with chronic illness can be like that; symptoms disappear and replaced with new ones.  It’s a world that keeps changing.  But hopefully, perhaps one day I can fall down a vortex that leads to my very own Wonderland…

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Don’t be SAD…Banish those Winter Blues…

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Winter is a miserable season for everybody.  It’s cold, wet and the mornings are dark and depressing, and the dark descends upon us far too easily in the evenings.  For those battling with chronic illness, it can be even more miserable; with the cold affecting pain and fatigue levels.  And of course, Winter, and the darkness that comes with it, can cause Seasonal Affective Disorder; a type of depression that occurs during the Winter months and is thought to be linked to reduced exposure to sunlight.

For me, the Winter months, and particularly living here in the UK, affects the amount of pain I experience.  I find that the very cold weather, which unfortunately we are prone to here.  This year has been particularly bad, with a lot of rain and the bitter cold, which has resulted in me being in a lot of pain whilst out with my carer, especially when needing the wheelchair.  In order to help with this I really believe in layers, and especially thermal trousers and a top to protect your body from the cold.  As I experience bad pain due to my neurological condition, particularly in my legs, I therefore never leave the house without a pair of thermal trousers on to protect them from the cold, and to lessen the likelihood of experiencing severe pain.  Also, as many people have told me throughout my life, it is much better to stay warm and remove layers than it is to have one very thick layer on.  This is particularly helpful also, when shopping, as most stores become very warm, so is very helpful to be able to remove layers.  This year, as the pain has been worse, I have also tried to spend time out of the wheelchair when out shopping; as moving about is important to keeping warm, and so thought perhaps using the wheelchair was exacerbating the level of pain and fatigue that I have been experiencing.

Also, another necessity for going out and about during the winter months is to keep your hands and feet warm, with thick socks, gloves, as well as ensuring to wear an appropriate winter coat, hat and scarf.  Especially important when living with chronic illness

Of course, when suffering a chronic illness and living with it everyday, with symptoms constantly making themselves known, a lot of time is spent indoors.  During the winter months, it can be a good thing when the weather outside is awful!  I like nothing better when it is very cold than to wrap myself in a lovely thick blanket and curl up with a lovely hot mug of hot chocolate with a good book or even watch a film on Netflix or from my vast DVD collection.  I think this can also be a good tactic when dealing with the winter blues – think of all the things that you are able to enjoy whilst inside the house, whilst protecting yourself from the cold and rain (and perhaps even snow!) and bask in the enjoyment of being able to appreciate the little things that you can enjoy, such as watching favourite films or TV programmes, or even get around to reading that book you have wanted to read for ages.

 

Staying indoors because of the weather doesn't have to be SAD - it can provide opportunities to enjoy a good book or film whilst wrapping up with a warm blanket!
Staying indoors because of the weather doesn’t have to be SAD – it can provide opportunities to enjoy a good book or film whilst wrapping up with a warm blanket!

In order to alleviate the amount of pain and fatigue that I have been experiencing, I have decided to start moving more and start a new exercise regime!  Exercise releases endorphins which helps to release those feel-good chemicals in the brain and so thought that it would help to alleviate the winter blues that can occur during this time of year.  However, exercise for me is difficult due to my mobility problems, and which regular gyms are not suitable.  Instead, I have found a gym that is perfect for those with chronic conditions such as mine as the machines are power assisted and so moves your body for you.  It is even perfect for those without health problems as he machines can be used actively, whereby you can resist against the movements, giving an increased workout.  Once a week, I am also taking part in some Pilates, and although I have yet to see any benefits regarding the pain or strength in my legs, I am feeling more positive and seen an increase in my energy levels!  The Feel Good Factory certainly lives up to its name!

 

Exercise can really help alleviate those winter blues
Exercise can really help alleviate those winter blues

To find out more about the Feel Good Factory and the ShapeMaster equipment visit the website here

 

This post is for the February edition of the Patients for a Moment (PFAM) Blog Carnival which this month is being curated by Leslie of Getting Closer to Myself 

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Need something to make chronic illness suck less? Then check out The Pillow Fort Magazine!

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I love writing, and am always looking for new opportunities to share my writing, other than my blog.  Therefore, I was excited when I heard about a new digital magazine which is aimed for young people suffering with chronic illness to make living with such conditions, not only suck less but help to maintain a positive attitude through the battle of illness.  So, when I read that the editor and creator of the magazine, Lizzy was looking for submissions, I dug out one of my many notebooks and began writing and editing a piece that I could submit to the magazine.  And now, I am happy to announce that the magazine has been published and is ready for you all to read.  I have had an in-depth look at the magazine and I can tell you that it is a fantastic one for anyone battling chronic illness to read.  It is not only beautifully designed, but is filled with amazing photography and inspiring stories from other young women.  To show your support, and help living with chronic illness suck less than you can buy the magazine here

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P.S: If you have read the magazine and my article, would love to hear your thoughts and comments about it!

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My second year blogiversary and looking to the past…

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Yesterday, thanks to the wonders of WordPress, I discovered that it was my second anniversary of my very first blog post entitled ‘An introduction…‘.  After discovering that it was the second anniversary of the start of this blog I contemplated the changes that have happened since the publication of the first post of the blog.  Two years have passed and have now published approximately 225 blog posts since then as well as becoming active on social media, and also becoming involved in projects relating to chronic illness and neurological conditions.  However, on the discovery on my blogiversary it made me consider the past and the changes have occurred since the beginning of writing this blog.

Some of the changes have been good; such as the introduction of a couple of social groups that I now regularly attend; the discovery of a passion for card-making as well as the addition of a personal assistant in my life, which has greatly benefited myself as well as becoming less reliant on my parents.

However, there are also a number of changes that are not so good.  In looking over past blog posts, it made me realise how bad my condition has become.  I suppose, living with illness over a long period, you are not so aware of the changes until you contemplate the past and the reality of your condition as it was then; this could be in the form of looking at past photographs, or re-reading old blog posts or journal entries.  It is no secret, that I have been battling with dizziness since a young child, and although the dizziness was severe two years ago, it really has become so much worse since the start of the blog.

The problems with my legs has also worsened significantly worse since the beginning of ‘My Brain Lesion and Me‘.  At the start of this blogging journey, I had little problems with my legs; although they have always been stiff and had experience discomfort when walking, my mobility was not really affected.  Fast forward two years on, however, and my mobility has significantly worsened, progressing from needing to use a walking stick, to a crutch and now needing to use a wheelchair. And these two years has also seen the introduction of severe trembling in the legs, constant pain and now I have even been experiencing episodes of loss of sensation in them.

However, I am unable to change the past or the present of living with my condition, and it looks like I may have little control on the future.  I am hoping for more information at the end of the month after several more hospital appointments, although I trying not to raise my hopes too high, in case of disappointment.  For now, I will just have to live in the present and attempt to keep positive; to keep writing about my experiences of living with a neurological condition and to live the best life that I possibly can…

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Who knows what the next two years will bring?…

 

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A Year in Review: Living with a neurological condition…

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Now the Christmas and New Year celebrations are upon us; it also allows us the opportunity to reflect on the year that is nearly at an end, and to also look forward to the year ahead.

This time of year, allows us to not only reflect on the difficulties and struggles that have occurred due to chronic illness, but we can also reflect on what the year has brought us and express gratitude for the positive moments or for the people who have supported us and made life with chronic illness a little easier.

Every person; whatever their situation and whatever struggles they live with, every year brings many ups and downs.  And living with chronic illness brings more downs than ups, but still we are able to find gratitude in all the positives that happen during the year.  An example, of such a positive thing that has happened to me during 2013 is finding such a strong support network, especially on social networks such as Twitter.  This year has seen me find many special and caring friends that make living with my neurological condition a little easier – they pick me up when I am down or struggling, and send me messages of congratulations on the successes.  This year, through all the bad times, I am grateful for friends such as Anya and Aisha for all of their friendship and support, and of course all of the other wonderful spoonies who have messaged me support throughout the year, for which there are many – thank you!

Again, this year has also seen me gain another nomination for a WEGO Health  Award; so for the bottom of my heart I would like to thank the person who nominated me for the award – I am truly honoured.

I also have to be so thankful for everyone who has taken the time to read, liked, shared and commented on my many blog posts throughout the year.  I have shared much of my life and experiences of living with a neurological condition, and so I am grateful for everyone who takes the time to read, and perhaps even take something out of it, such as a little more compassion or understanding of those living with chronic conditions.  During the coming year, however I would like to connect with even more people living with and experiencing chronic illness, so please feel free to get in touch whether it be by email, Facebook or Twitter and share your story and experiences.

There were however, many downs also.  The symptoms that I experience such as the dizziness, trembling in the legs and the pain have all increased and worsened exponentially compared to when they first started.  In addition, the days where I am unable to get out of bed because of the weakness, pain or dizziness (sometimes all of the above!) have also increased.  This year has also seen the increased use of my wheelchair; last year, I only used the wheelchair on very rare occasions.  However, as the symptoms have become worse, with the trembling and weakness in the legs becoming such a problem, that the wheelchair is used at least once a week if out for long periods such as the days out with my carer, going to the social group that I attend and hospital appointments, and so on.  In addition, with all the dips that have occurred, depression, have also reared its ugly head at times making the journey through chronic illness even harder.

Me in my wheelchair that is now a regular part of my life this year
Me in my wheelchair that is now a regular part of my life this year

But now, as the year is drawing to a close, it is time to start looking forward and to the possibilities that the mew year has to offer.  The beginning of the year for me involves three hospital appointments for an introduction to a Neurophysiotherapist as well as tests to help narrow down the cause of the dizziness – so here’s hoping for more answers and an effective treatment plan! And next year I also have a cruise around the Mediterranean to look forward to in May.  And perhaps I will discover new and beautiful places to discover with my carer, although for me nothing could top ‘The Potting Shed‘ in Llantrisant.

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