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30 Things About My Invisible Illness You May Not Know 2014…

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I originally completed the ’30 things you may not know…’ meme back in 2012.  However, I thought it might be fun to complete these 30 questions again, not only to meet new (and old!) fellow bloggers but to also see how my answers have changed during the past two years.  It is true that as my condition has progressed and am now have the need for mobility aids such as a crutch and sometimes a wheelchair, my condition it could be argued is no longer invisible.  To some extent this may be true, however, I have also found that when I do use these mobility aids I do so with suspicion from others because I look ‘fine’ and in their minds I have no need for such assistance.  It’s as if they are expecting someone with a legitimate illness or disability to have a specific mark, branding them as such.  It therefore does raise the question about what exactly defines an ‘invisible illness’ doesn’t it?

  1. The illness I live with is…
    A neurological condition known as a long-standing brain stem lesion, as well as spastic paraparesis.  However, there is some debate that there may be more going on and therefore am going through tests and seeing more consultants to determine this.
  2. I was diagnosed with it in the year…
    2010
  3. But I had symptoms since…
    As long as I can remember, I am certain that I have had the stiffness and weakness in the legs since birth but went undetected for so long because I hadn’t realised that there might be a problem with my legs as I never knew anything different!  The vertigo and dizziness started in early infancy also but the exact age I am unsure of but I was very young.
  4. The biggest adjustment I have had to make is…
    Accept the limitations regarding my mobility and accept my need for a wheelchair.  I am often incredibly stubborn and will refuse to use my wheelchair, and by the end of the day I am in a lot of pain as well as having trouble moving around because of severe weakness in the legs.
  5. Most people assume…
    That because I am able to stand and walk sometimes when I have the wheelchair then it must mean that I am faking it all for sympathy or because of laziness.  Many people need to learn that because a person uses a wheelchair does not automatically mean that they are entirely dependent on one.
  6. The hardest part about mornings are…
    It has to be getting up out of bed!  Fatigue is another symptom that I suffer as a result of my condition and therefore it is very difficult to get out of bed as I still feel so tired.
  7. My favourite medical TV show is…
    It’s still has to be Grey’s Anatomy, although I am also addicted to Private Practice!!
  8. A gadget I couldn’t live without is…
    This is a tough question as like most people I own several gadgets which are all so useful in my daily life living with chronic illness.  But having to choose just one I would have to say my smartphone (Samsung Galaxy Note 3) as I am able to do so much with it and can be with me wherever I go.  For instance, thanks to applications such as Facebook, Twitter, Instagram and Pinterest I can work on things related to my blog and keep in contact with fellow spoonies, which is fantastic on days which are struggle and need someone else to talk to.  More than this I can take photographs, be reminded to take medications on time, play games, watch videos or listen to music – generally be entertained and distracted from pain, dizziness, and life from a chronic illness in general!
  9. The hardest part about nights are…
    Trying to switch off from the pain and trembling that I experience in my legs due to the spastic paraparesis.  I often experience insomnia because of these symptoms and it’s even been known to wake me up!
  10. Each day I take __ pills and vitamins…
    9 pills
  11. Regarding alternative treatments I…
    Do not use any, as in my case the condition is not treatable even with conventional medical treatments, only can attempt to control the symptoms.  I did enjoy a lovely and relaxing massage whilst on holiday earlier this year which I did find help with the pain
  12. If I had to choose between an invisible illness or visible I would choose…
    An invisible illness could be more positive in the way that people are more likely to treat you as everyone else
  13. Regarding work and career…
    I would love to have a career and full-time job but often worry if anyone would hire me due to the amount of time that I am unwell and also would question if I could hold down a job due to my legs giving way a lot and the inability to stand for long.  Am also not allowed to drive due to the severity of the dizziness and vertigo, and public transport is not an option as it requires standing for a significant period of time
  14. People would be surprised to know…
    That despite living with a neurological condition and dealing with severe symptoms everyday that I still manage to be positive!  Many people expect me to be depressed because I am stuck inside of the house for most of my time, and so am surprised that I am positive and upbeat.  Also, a lot of people love my positivity board which contains letters from friends, cards and posters with positive quotes and photographs of happy memories, all of which help me stay positive.
  15. The hardest thing to accept about my new reality has been…
    I am not like everyone else my age and cannot achieve the milestones that I was once looking forward to, passing my driving test being one.  Another example, is going out at night with friends, which I am unable to do due to the weakness in my legs, as well as the intense fatigue I experience at night.  It has also been hard to accept that I may need to use a wheelchair as my legs keeps becoming worse over time.
  16. Something that I ever thought I could because of my illness which I did was…
    It has to be going on a cruise.  Not only did I think it was out of my reach due to the severity of the dizziness relating to my neurological condition, but also I never expected me to be able to handle it, but I did and looking back the holiday was a fantastic experience, and between you and me we have just booked to go on another one next year around the Canaries!
  17. The commercials about my illness…
    Are non-existent as the condition is rare.  In fact it is so rare that I haven’t met anyone else with the same condition.
  18. Something I really miss doing since I was diagnosed is…
    Going on shopping trips with my Mum to our local city centre (Cardiff).  Since my legs have become so much worse am unable to go as a lot of walking is involved as well as not being able to queue in the big department stores as my legs often give way.  Also, large cities such as Cardiff can be very difficult for me to handle because of the dizziness, as it makes me very disoriented due to the large crowds, fluorescent lights in the shops and high ceilings and so on.
  19. It was really hard to have to give up…
    Doing all the exercise that I enjoyed such as going on my exercise bike or going on walks as not only is it beneficial physically, I often found it helped with mental well-being.  I also miss walking my dog as it’s something that both her and my Mum and I enjoyed doing together.
  20. A new hobby I have taken up since my diagnosis is…
    Blogging and writing.  If I had not ben diagnosed with this neurological condition then I would never have started blogging or meeting all of the wonderful people I have as a result of my writing.  I also never would have had the opportunity to contribute to the inspiring digital magazine ‘The Pillow Fort Magazine’ especially for those battling with chronic conditions.
  21. If I could have one of feeling normal again I would…
    Spend the whole day out of the house with dinner afterwards and maybe headed to a party after that!
  22. My illness has taught me…
    To listen to my body, and that we all know when there is something wrong.  To never settle when doctor’s are telling you there is nothing wrong when you know there is.  To keep moving forward and to never give up until you find a doctor that will listen and is determined to find out what is wrong.
  23. Want to know a secret? One thing people say that really gets under my skin is…
    “There are people much worse off than you”.  Yes, I understand this but it still doesn’t help!!
  24. But I love it when people…
         Listen to me and tried to understand even though it can be difficult due to the unpredictable and unusual nature of the illness.
  25. My favourite motto, scripture, quote that gets me through tough times is…
    It has to be “Life isn’t about waiting for the storm to pass but learning to dance in the rain”
  26. When someone is diagnosed I’d like to tell them…
    It is not the end.  You still have a lot to offer just need to be open to new opportunities.  You need to find a new normal instead of focusing on the past and everything that once loved doing but can no longer do.
  27. Something that has surprised me about living with an illness is…
    Although that I do not know anyone else with the exact same condition, I am still not alone.  There are many other people who experience the same struggles as myself and whom I can learn from and can support each other through the tough times.
  28. The nicest thing that someone did for me when I wasn’t feeling well was…
    Sending me a care package with things that I love and a beautiful card to add to my positivity board
  29. I’m involved with ‘Invisible Illness Week‘ because…
    To spread awareness of the difficulties faced when living with a chronic invisible illness; to educate people that although you cannot see the problem does not mean that it doesn’t exist.  That people with invisible illnesses are not faking or are lazy and that we should be careful when making snap judgements about people.  It’s a cliché but it’s true: ‘You cannot judge a book by its cover”.  It would also be nice to connect with others living with invisible illnesses like myself for support and friendship.
  30. The fact that you read this list makes me feel…
    I feel validated and supported so thank you!!
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The one important component to survive a life with an invisible illness…

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Imagine you are a marathon runner, struggling at the half-way mark. You are fatigued, suffering from muscle cramps and out of breath. However, you are determined to complete the marathon and cross the finish line.

So, what spurs you onto the finish the marathon despite the pain and fatigue?  I can imagine that one thought that would help is to know that the end is in sight and awareness that the pain and fatigue will eventually end.

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Unlike marathon runners, for those living with chronic illness, there is no end in sight of the pain and fatigue that we endure

Life with an invisible chronic condition, however, is in no way alike to the marathon analogy above.  There is no knowledge that pain, fatigue or other symptoms will end when living with a chronic illness.  There is no finish line when living with an invisible chronic illness.  The question, therefore is if we do not know when the pain, fatigue or other symptoms that torments us will end then what help us get through our lives with a chronic illness?

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In my opinion, one crucial component of surviving life with a chronic illness is hope.

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Hope that despite living with debilitating and life-altering symptoms, that we can still lead a ‘normal’ and happy life.

Hope that the symptoms will eventually ease.  Hope that one day there may be even a cure.

For those living with an invisible chronic illness, the hope that they will be believed and taking seriously as many as of you will have experienced; many are disbelieving of any disabilities or conditions because there are no outward signs of there being anything wrong.

The hope that everything will be OK.

Hope is essential for every person, but perhaps it is more necessary for those battling chronic illnesses as it is vital for pulling us out of the deep trenches of pain, hurt and depression that living with an illness can cause.

Hope motivates us to push forward and to keep thriving through even the difficult times.  In my experience, when my symptoms are particularly severe and perhaps am stuck in bed because I am unable to get out due to weakness, it can help therefore to believe that tomorrow will be a better day.  Maintaining hope during hardships can make it slightly less difficult to bear.

[Tweet “Hope is what motivates us to push forward and keep living through the difficult times.”]

Before the diagnosis of a chronic illness, we have hope for the future and the plans we create because the possibilities that are ahead of us are endless.  However, after a diagnosis of a chronic illness, there is suddenly a huge question mark over our futures and the possibilities we envisioned for ourselves.

The future is uncertain.  Due to the uncertainty of the future, our faith waivers.  How do we maintain hope when the life we had known has suddenly changed?  How do we continue to hope when we experience more bad days than good?

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The truth is that each moment we are in chronic pain or affected by the symptoms associated with our chronic illness, we choose our attitude towards it.

Ergo, we can choose to be negative and resentful towards our situation. Or we can choose hope and positivity.

I often used to focus on all the ways that my neurological condition limited my life.

Instead of focusing on everything that I am still able to do, I instead focused on the things that I was now unable to do.

This type of cognitive thinking not only can lead to depression and anxiety but can also make you feel inferior to your peers.

Now, I try and focus on everything that I am still able to do, and especially those that give me joy and happiness.

It instills me with hope as well as the reminder that despite the limitations placed upon my life, that I still have things to offer the world.

Anyone reading this who is is living with a chronic illness, know that you still have something to offer and have lots that you are still able to do despite there being things that you can no longer to do.

Illness is hard; there is no doubt about it.  From my experience, I know that trying to maintain hope can be extremely difficult as sometimes it can feel that there is nothing to be hopeful for.

But there are things out there that can be healing; things that can make you feel hope still exists even through the darkest of times.

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Simple pleasures every day can help alleviate suffering from pain, nausea or fatigue.

These little delights do not have to be expensive or grandiose but can be found in the simplest of things, such as watching a favourite comedy, enjoying a cup of your favourite tea, hugging a pet or listening to a favourite album.  Whatever works for you.

Try writing your favourite things down in a notebook; often when living with illness we can forget, and reminding ourselves of the fun activities we enjoy can help bring joy and hope.

To conclude, hope is just one of the components to be able to survive life with chronic illness.

Hope is the line between living a happy life despite chronic illness or being consumed by the negativity that illness can create.

Allowing illness to consume our lives, and focusing on the limitations that it places upon us can, therefore, lead us to lose our identity to our conditions.

As the spiritual teacher Eckhart Tolle said: “As long as you make an identity for yourself out of pain, you cannot be free of it.”

By choosing hope, however, we can lead a productive life filled with the pleasures that heal us and brings us joy and free from pain.

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20 Things You Might Not Know About Me

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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/ 

 

 

 

 

 

 

 

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I’m supporting Balance Awareness Week! Will you?

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Every year in September VEDA (Vestibular Disorders Association) aims to raise awareness for vestibular conditions.  They also aim  raise money for research into these disorders which causes dizziness and affects the balance system.

According to the VEDA website:

The goal of Balance Awareness Week is to reduce the time it takes to diagnose a vestibular disorder. We help patients recognize the symptoms of a vestibular disorder and urge them to seek help from a professional specialist. We also encourage family and friends to learn more about vestibular disorders so they can support their loved ones’ who are suffering from dizziness and other debilitating symptoms.

Although, I do not suffer from a vestibular disorder myself; dizziness and disturbances in my balance is a large part of my life.  Due to a neurological condition, I am constantly dizzy as well as frequent episodes of vertigo and as a result my balance is affected with these symptoms affecting my gait (the way I walk) and causing falls.  Therefore, I understand and have experienced the loneliness, frustration and isolation these symptoms can cause and as a result I am supporting the ‘Balance Awareness Week’ (September 15th – September 21st 2014).

One way in which I have already shown my support for VEDA and raise awareness for Balance disorders is by purchasing a t-shirt designed by my great friend, Marissa.  Marissa has been a fantastic advocate for everyone affected by dizziness and vestibular conditions.  Marissa not only blogs about her own battle with dizziness and balance issues at her site Abledis.com, but she also founded ‘The Spin Sisters’ a podcast that discusses life with chronic dizziness and coping with a chronic condition.  To find out more about why Marissa is raising money and helping VEDA, then you can read so by viewing her personal campaign page here.

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There are two t-shirts available in the Balance Awareness storefront – one funky and lighthearted design that features the phrase ‘Dizzy not Drunk’.  This is because many people who suffers with vestibular disorders often are accused of being drunk because it can result in an unsteady gait when walking which is also a sign of intoxication.  The other design is a simple and plain design with the hashtag ‘Cure Dizziness’ and ‘Balance Awareness Week 2014’ underneath.  The ‘Cure Dizziness’ design is available in adult (men and women) and youth sizes.

There is only six days left on the t-shirt campaign, so please if you can then purchase your own to show support for everyone affected by dizziness and balance disorders.  These disorders can affect anyone at anytime and is something that could affect at you at some point.  As Marissa says:

Rocking an awareness t-shirt means we all get to stand in solidarity with those suffering in silence… PLUS you’re getting a cool looking t-shirt!

 

If you aren’t able to get your own t-shirt then please  help spread the word and raise awareness about such conditions on social media and help all those who are suffering with such conditions in silence.  Awareness is a catalyst for a change so help and be a change agent!

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Reflection on Robin Williams and Depression

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I was very saddened to hear of the loss of one of the greatest film comedians of our time – Robin Williams.  Like many others, I grew up watching him in films such as Mrs Doubtfire, Jumanji,  and Jack as well as delighting in his performances as Mork in the hit comedy series ‘Mork and Mindy’.  Not only was Robin Williams an incredibly talented comedian but he also showed great vulnerability in his performances in more serious roles in films such as ‘Good Will Hunting’, and even in his earlier roles such as ‘Jack’ where he plays a ten year-old child trapped inside a man’s body due to a rare ageing disorder.

His death is incredibly sad.  Not only has the world lost a huge talent who loved to make others’ smile and laugh despite hiding an incredible sadness within himself but his family lost someone they so deeply loved.  A wife has lost her husband and three children have lost a father.  But what is also sad and tragic is the ugliness that a minority have people shown in the wake of his death.  Reportedly, Zelda the daughter of the late star has left social media due to messages from cruel trolls.  Also, there have been many who have posted such cruel and horrible online messages because of the way he died.  It was established early on, that Robin Williams sadly took his own life after many years of battling demons such as alcohol addiction and depression.  In the wake of the news, many blamed Williams for his death stating that they had no sympathy as he was to their minds selfish and not thinking of his family.  Others asked themselves what did he have to be depressed about as he ‘seemed to have it all.’

Robin Williams in 'Patch Adams' a film that taught us that laughter is the best medicine
Robin Williams in ‘Patch Adams’ a film that taught us that laughter is the best medicine

But that is the thing about depression – it does not discriminate (Click to Tweet)

But that is the thing about depression – it does not discriminate.  Depression does not care if you are rich or poor.  Depression does not even care if you are famous.  Depression is a cruel illness which can affect anyone at anytime.  It is an illness that I am all to familiar with; it is an illness that has affected my life since my teenage years.  And add a diagnosis of a chronic illness such as Parkinson’s Disease, with which Robin Williams was reportedly diagnosed with before his death than depression, it could be argued that depression is a natural reaction.  Chronic illness, and particularly one of a degenerative condition can rob you  and changes everything that you knew – your health, mobility, relationships, career and the future to name but a few.  Chronic illness makes life uncertain and scary.

Chronic illness makes life uncertain and scary (Click to Tweet)

To those who accused Robin Williams  and those who commit suicide of not thinking of his family, this could not be further from the truth.  As someone who has been so down, even experiencing thoughts of suicide, then I know that in these situations the person are thinking of their family and loved ones – when depressed, and certainly when also experiencing a chronic illness which makes  you reliant on your loved ones you therefore feel that your family would be better off without you around.  Of course, it is not true, but depression is a beast that changes the way you think and therefore convinces you to think the worse.

Fortunately, I found support, especially the support available online within the spoonie community.  I came to the realisation that life is worth living despite living with a neurological condition.  Unfortunately, it was too late for Robin Williams.  If you are reading this and you feel depressed and suicidal then please reach out for help – tell somebody.  Life is worth living even if it may feel that it doesn’t right now.

In regards to Robin Williams, let’s remember him for the person he was – a person who had a raw talent and loved to make others laugh and be happy.  Let that be his lasting legacy and not the way he died.

To talk to someone in the UK  you can call ‘The Samaritans’:

  • 08457 90 90 90 * (UK)

Or contact Mind: The Mental Health Charity: www.mind.org.uk

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