Storms Don’t Last Forever

A few weeks ago much of the UK was battered by Storm Doris.  High winds and torrential rain affected many areas of the country.

One Thursday after arriving home from a morning out cut short because of the inclement weather; I watched the rain beating against the glass of my bedroom window, observing the dark grey clouds while I lay down on my bed battling the effects of chronic pain ravaging throughout my legs. I lay there wondering if and when this horrible, destructive storm will end.

Waking the next morning, after opening my bedroom curtains, to my surprise and delight I was greeted by beautiful blue skies and glorious sunshine.  It was then I was reminded that storms don’t last forever and that the sun always shines after the rain.

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Furthermore, a realisation occurred to me that it could also be a perfect metaphor for life with chronic illness.  We all will, at some point in our lives, will experience a storm in our lives; a dark point that at the time feels like we’ll never get out of.  But, of course, nothing in life is permanent.  Our experiences and feelings like most things, such as storms are transient, before moving on, and making way for the sun to shine once more.

Of course, the definition of ‘chronic’ is something, usually describing an illness which is persisting for an extended length of time or one which is constantly recurring.  In this sense, living with chronic illness is like permanently living under a storm cloud.  However, although our conditions are permanent, our symptoms can sometimes be transitory, allowing a small piece of sunshine in our days.  It’s like Charlie Chaplin once said, “Nothing is permanent in this wicked world, not even our troubles.”

Symptoms, which are often persistent and loud, can on some days concede, the feelings and their effects being fleeting and mild, letting us have a rare, good day.  Even living with a long-term condition, therefore, doesn’t mean accommodating a permanent storm in our lives.

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Things recently have been difficult, in my own circumstances living with a neurological condition with increased pain and trembling in my legs.   Some days it has been so bad that I wonder how I have managed to get out of bed in the morning.  On the worst days, it has felt like I was living in my own bubble, surrounded by large and dark storm clouds above my head because of the severity of the physical symptoms, I was experiencing and the emotional toll they were having on my well-being.

Despite this, however, I have still found little rays of sunshine throughout my days even through this turbulent times.  Even little things such as enjoying the feel of the sun on my face, especially after spending days inside, or enjoying the taste of my favourite bar of chocolate.  It was also my birthday last week, and although my symptoms did slightly dampen the occasion, it was still so lovely to receive presents, cards and messages from people who took the time out of their lives to think of little, old me!  These beautiful moments are small reminders that although it may not feel like it during this very moment, that storms indeed do not last forever.  Nothing is permanent, and these thoughts and feelings will not last forever.  This too shall pass.

Sitting here, thinking about the storms that roll in when living with chronic illness reminds me of my favourite quote from the author of one of my all-time favourite books, Louisa May Alcott.  She once famously wrote, “I’m not afraid of storms, for I’m learning how to sail my ship.”

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For me, it’s a truly beautiful reminder that the obstacles, challenges and difficulties that any of us face during our lives help us build strength and resilience, and ultimately it is these hardships that teach us how we should be living our lives.  For if it were not for storms, we would never learn how to sail our ships; we would never learn the lessons of strength or resilience that helps us through the dark times.  Of course, this is of little use during periods of distress.

As I continue experiencing this particular, and the often distressing symptoms that they bring, I will try and continue to remember that storms don’t last forever, and I hope you do too.

Or if not, I hope you find ways to create your own sunshine…

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20 Things You Might Not Know About Me

Thank you to Llinos from the amazingly brilliant and inspiring blog ‘Whispers of Wellness‘ for tagging me to take part in the ’20 Things You Might Not Know About Me Challenge.’  This challenge was originally started by another blogger by the name of April from ‘Blacksburg Belle‘.  The aim of this blog tag was to build a community among fellow bloggers, and help these bloggers to not only connect more but to also get to know one another better.  If you are a fellow blogger and would like to participate or just want to know more information, then you can visit the original post here.

All about me!
All about me!

Question 1: How tall are you?
I am amazingly short at only 4″11 which makes it incredibly difficult to find nice clothes such as trousers and dresses. Often even clothes in the petite section of some stores are still too long on me!

Question 2: Do you have a hidden talent? If so, what? 
If I do have one, it is even hidden from me! So no, no hidden talents whatsoever.

Question 3: What’s your biggest blog-related pet peeve?
When certain sites require that I log-in or jump through hoops just to be able to comment on a post.  I want to be able to reply to someone’s post simply and quickly,  I feel that this stops from people adding to the conversation that I have started from my own blog posts.

Question 4: What’s your biggest non-blog related pet peeve? 
At the moment, it is definitely abled people parking in disabled parking bays.  This unfortunately happens a lot and as I need a disabled parking bay due to mobility problems it means that my carer and I have to wait for ages for another one to become available.  Wish some people would be more considerate and think before they use these parking spaces.

Question 5: What’s your favourite song? 
Such a difficult question as I have so many depending on my mood but I really do love Somebody to Love by Queen

Question 6: What’s your favourite Etsy shop that isn’t yours? 
It has to be the Itty Bitty Book Company as they sell the most beautiful and positive books, prints and cards.  I have bought several items from their store and they really help me to stay positive despite living with a chronic illness

Question 7: What’s your favourite way to spend your free time when you’re alone? 
It has to be reading.  It is one of my favourite pastimes anyway, but find it so relaxing and comforting to be able to curl up on my bed with a warm blanket and lose myself in a good book.  Find the silence really helpful to be able to concentrate on what I am reading too!

Question 8: What’s your favourite junk food? 
I do love to indulge in some Ben and Jerry’s ice cream when feeling down, or whenever my symptoms are particularly bad

Question 9: Do you have a pet or pets?  If so, what kind and what are their names? 
Yes, I have a dog (a dachshund cross jack russell) called Honey.  She really does add colour and joy into my life and provides me with comfort and security when alone in the house, and especially when I am alone whilst dealing with severe symptoms.  She can be like a nurse and security guard in one little package!

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Question 10: What are your number one favourite nonfiction and fiction books?
So hard for a bookworm like me to come up with just two all time favourite books!!  They tend to change all the time but at the moment in terms of fiction it has to be The Storyteller by Jodi Picoult.  For a nonfiction choice, I have found Things Get Better by Katie Piper very useful in getting through difficult periods.

Question 11: What’s your favourite beauty product? 
My favourite beauty product has to be my BareMinerals foundation and blusher, as it has been very helpful in giving me a healthy and natural glow even when I have been deathly pale as a result of chronic illness

Question 12: When were you last embarrassed? What happened? 
The last time I was embarrassed was when I was in a local charity shop and the wheel on my wheelchair got caught in one of the display rails which resulted in the display falling and hitting me in the head with some force!  I was in flood of tears because of the pain and the shock as it was so unexpected.  That was embarrassing!

Question 13: If you could only drink one beverage (besides water) for the rest of your life, what would it be? 
I mainly only drink water anyway, but if I had to choose something else to drink I probably would choose a strawberry milkshake

Question 14: What’s your favourite movie? 
Again that it is a really difficult question as I really love my films and have quite an extensive DVD collection myself.  It often changes but it would probably be Safe Haven starring Josh Duhamel and Julianne Hough.  It’s lovely and romantic!!

Question 15: What were you in high school: prom queen, nerd, cheerleader, jock, valedictorian, band geek, loner, artist, prep?
I was most definitely the loner – unfortunately I had very few friends at school as many could or perhaps would not understand the symptoms that I was living with and the effect that it was having on my life

Was most definitely a Loner in high school - just like Ally Sheedy from 'The Breakfast Club'
Was most definitely a Loner in high school – just like Ally Sheedy from ‘The Breakfast Club’

 

Question 16: If you could live anywhere in the world, where would you live?
I really have no idea, where I would live if I had to choose somewhere else to live.  I am a home bird at heart so I would probably answer that I am happy where I am living now.

Question 17: PC or Mac? 
Definitely would choose my Mac!

Question 18: Last romantic gesture from a crush, date, boy/girlfriend, spouse? 
Can’t think of one!

Question 19: Favourite celebrity? 
I really admire Angelina Jolie and all of the humanitarian work she has done over the years.  She often come across as extremely intelligent, articulate as well as somebody who cares about everyone she meets.

Question 20: What blogger do you secretly want to be best friends with?  
That is another really tough question as I have had the pleasure to meet many wonderful fellow bloggers and had the fortune to read many wonderful blogs which are interesting, articulate and thought-provoking.  If I had to choose one, I would choose Sophia from ‘Spoonie Sophia‘ as I really admire her strength and determination to find anything to help her deal with the symptoms that come from her chronic health conditions.  She is a fantastic advocate for anyone looking to experiment with their diet and using food as medicine.

 

I now tag:

Sophia from http://spooniesophia.wordpress.com/
Reina from http://reinafleet.wordpress.com/
Rachel from http://racheldavieswriter.com/ 

 

 

 

 

 

 

 

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?…

 

HAWMC 2013 Day 30: Recap!

 

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Welcome to the Health Activist Writer’s Month Challenge brought together by WEGO Health – a social network for all health activists.  Again, I am participating in the annual Writer’s Month Challenge in which I will be writing about my health activism and health condition based upon prompts given.

Today’s prompt reads as follows:

You made it!  30 posts in 30 days!  Today, write a recap of your experience.  What was your favourite prompt?  Least favourite?  What have you learned? 

Well, I did it!!  For the second consecutive year I have managed to complete all 30 days with no need to use the ‘free-pass’ cards!!  It feels like a huge accomplishment especially as I have experienced several bad days.  Preparation seemed to be the key this year, especially as I am busy with other activities such as the Monday and Wednesdays groups that I am involved with and the day out once a week with my Personal Assistant means that I am not in the house all of the time, so I had to write many of the prompts before the day that it was published.

Just like last year, I immensely enjoyed the month-long writing challenge – I loved the challenge of all the prompts.  The prompts are not only a lot of fun to write but I also feel that the prompts enable us to look and write about our particular health conditions differently than we would normally.  For example, some of the prompts required me to write about topics that I might never would normally.  For example, the topic of burnout was selected to be discussed from one of the prompts, and if it wasn’t for the HAWMC I might never have written about the topic.  One of the prompts that I found particularly challenging was the Acrostic Poem from Day 13 (Acrostic Poem of my Health Condition) – it wasn’t necessarily the subject matter that was challenging as the whole blog is about living with my health condition, but the form itself.  I haven’t written a poem in many years so it was quite a challenge being asked to write one – just glad that I prepared in plenty of time and was able to write a decent attempt!

The prompts like always were a mixture of being, fun, challenging as well as being thought-provoking.  One prompt I really enjoyed, but initially found very challenging was the post regarding Adversity (“The flower that blooms in adversity…”).  I initially found it very difficult to write especially regarding when I bloom best.  However, although I found it challenging, I thought in the end it was one of my favourite and best written post!  I also loved the prompt which asked us to ‘spread the love’ and thank some of our favourite health activists; this was such a great opportunity for me to thank those who have supported me and helped me through some tough times with illness (Sharing the Love!  I would like to thank…).

I would also thankful for the Wordless Wednesday posts, as it gave a break from writing long posts and was fun coming up with creative photographs and drawings to dictate something without using words!  Would love to make this a regular feature but would need some ideas!  If anyone has links or ideas to do this please comment below and share!

Least favourites?  Perhaps some of the prompts that I had written about during previous writing challenges such as the post regarding caregiving (Carers, How to treat those you care for), and discussing favourite social networks (Why I Love to Tweet) to name but two.

Anyhow, regardless of the good and the bad through the experience of this writing challenge it was a challenge that I thoroughly enjoyed and look forward to taking part next year!   Thank you WEGO Health!

What did you think of my posts for the HAWMC?  What were your favourite posts to read?  Any you didn’t enjoy reading?  Loved to hear your views so please feel free to leave any comments/suggestions!

Happy Birthday to ‘My Brain Lesion and Me’…

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Happy One Year Anniversary to the blog!

Yes, one year ago today, I started on this blogging journey with my first ever post.

And one year since the start, I have been nominated for not one but TWO awards!

Here’s to another year of writing and sharing my journey with this condition!….

 

NHBPM Day Eleven: My Favourite Thing….

Another day, and that means a brand new post as part of the WEGO Health ‘National Health Blog Post Month’.  Today, is a diversion from discussing life with a chronic illness and health, as the prompt that I have chosen (as we get a choice between 2 prompts) asks us to discuss our favourite thing that is not health related nut likely improves our life.

For me, my favourite thing, and one which improves my life is my brand new iMac.  It really has become the centre of my universe, and one which I spend the majority of my time!  Although, admittedly many of the reasons are health-related!!  😉

I am sure those of you reading this and who are too suffering from a chronic illness or disability will ne able to relate – when one is sick, the computer, whatever the make and model, becomes a real lifeline.  I know there are a lot of people, many of those who are completely healthy that also claim that their computer is their ‘lifeline’, but in my opinion it is more true for us who are crippled by illness, often we are unable to go out and instead stuck indoors, often alone and without company.

In this instance, my computer has really become the centre of my social life!  Not being able to go out, particularly alone, has meant that through my computer and the internet, on social networks such as Facebook, Twitter, as well as Skype I am able to keep in touch with friends and family.  The computer and internet, also allows me to write this blog, as well as finding any pieces of information regarding my condition – any tidbits of information that I can gather to not only to learn everything there is to know (which isn’t a lot!! – pitfalls of living with a rare condition) but to also find anyways that I can help myself to get stronger, or any treatments that may help control the symptoms that I experience.

And then there are the opportunities to connect with others with similar difficulties that I face, the opportunity to join and explore different support groups; to connect with others, whom although might not have the exact condition as myself, but know exactly the difficulties I face, and can relate.  This is support really is invaluable source, as it enables you to talk to others who are going through similar experiences whom you can vent to, from others who understand and can give you great advice when you really need it.

Finally, as I am not able to go out that much, or if I do, am often unable to spend a lot of time out, so the computer and my internet connection allow me to browse all my favourite stores and brands.  If I need something, or need some new clothes, I can shop in the comfort of my own hom; without the worry of the possibility that my legs may give way, or struggling with the dizziness.  I don;t have to carry heavy bags around, that cause the discomfort in my arms; I can safely buy what I need (or want!) and can have it sent directly to my home.  This is one aspect where my computer really makes my life much easier!

Not only my iMac is great for going on the Internet and connecting with others, but on those bad days; the ones where I am stuck in bed as my legs are so weak that I can hardly stand, the computer can transform itself into an entertainment centre!! Recently, I purchased software for my iMac; software which has the ability to turn on my computer into a TV!!  Thanks to a USB dongle, I am able to receive Freeview channels, and also have the ability to record programmes that I wish to watch.  And there is good all iTunes!!  I have quite a few series saved onto the hardrive that I have downloaded direct iTunes – so I also have the option to watch one of these when I am stuck in my bed.  Of course, there is always the DVD player; to play the endless number of films and television boxsets that I own.  All these are great for keeping me entertained whilst unwell; often feel that when I watch these I have company and don’t feel so alone.

So, these are the reasons for my iMac being my favourite thing that I own and although not health-related makes my life easier and probably happier for it!

What is the one item that you own, which is your favourite, and why?  Would love to hear you stories…

A problem shared…

Welcome to another blog post from ‘My Brain Lesion and Me’!

This month, the folks at WEGO Health are concentrating on ‘Health Activism in Real Life’.  So, instead of the focus on being on online support groups or on those like me who blog regarding a particular health condition or cause the focus is instead on those organisations or even on specific people who use the more face-to-face approach to health activism.  This could include any of the following:

  • Non-Profit Organisations, i.e. charitable organisations
  • Support Groups
  • Meet-Ups with fellow patients
  • Awareness Events
  • Conferences focusing on health conditions or causes

So, I thought that I would share my thoughts and views on this topic and its role in providing support to those who are dealing with chronic illness or disabilities.  Now, I have found great comfort in online support regarding my own health condition and subsequent disability – the internet has made it possible for me to forge friendships and a strong support system with people who may not have the exact same condition as me, but who are nevertheless exhibiting similar symptoms that I face every day.  Without the internet, it would not have been possible to speak out about my condition, increasing the awareness of my condition and what it is like to live with through the 12-12-12 Project over at Abledis.com.

 

Without the technological advances that are available at our fingertips – the computer, smartphone, tablets and so forth I am afraid that I would probably live a very lonely existence indeed, stuck in the house constantly with only my parents and the dog for company.  So, the internet and the support networks available are such a godsend for thousands of people out there who are housebound or who are unable to get out as often due to their health condition, giving the ability to be able to connect with others and not feel so lonely.

 

However, this isn’t to say that there is no place for the offline, there are many non-profit organisations out there that are doing a fantastic job in providing and support for patients or service users, advocating them in times of problems and providing an ear for them when they are struggling.  I myself volunteer for a great non-profit organisation providing support for those living with mental health difficulties, called Mind and the support they provide for people and the others services that they provide.  Not only that but it provides a safe, comfortable environment for people to make new friends and talk about their problems and experiences without judgement or criticism.

 

There are times when I just wish that there was a support group out there for people like me, experiencing a similar condition to myself where I can get support, advice and make connections with others – but there just doesn’t seem that there are any organisations or non-profit charities that my particular health condition and situation really ‘fit’ into.  Even searching on the internet hasn’t helped!!  But have started going to a new group, although wouldn’t class it as a support group more of a group for ‘meeting-up’, learning about different topics and hopefully going on trips around the local area.  It as been great for me – enables me to get out of the house for a few hours (something I can’t do with online groups!) and chat and meet a wide range of different people, most of whom living with a chronic illness or disability.

 

So, I am starting to get the best of both worlds – using the online and offline resources for health activism and both definitely have their advantages and disadvantages but still both are equally valuable in providing patients, carers and other people involved within the health community to share personal stories, gain knowledge, connect with others…

So, which of these do you prefer – using the online for health resources and enjoying the privacy and anonymity it provides or do you prefer the more personal touch and connect with others face-to-face, enjoy getting to know others on more of a personal level?  Would love to hear your views on this topic!!….