My Inspiration…

Over at WEGO Health this month is ‘Health Activist Inspiration Month’.  The purpose of this month is to celebrate what drives health activists to empower themselves and others as well as the inspiration behind what makes them carry on the important work.  As part of the celebrations, I have decided to share the inspiration behind the blog and what inspires me personally.

My inspiration comes from the loneliness and isolation that I felt after my diagnosis of a long-standing brain stem lesion and spastic paraparesis.  Like most other people, I turned to the internet – searching various search engines for any information about the condition, and organisations or blogs where I could connect with others exhibiting the same condition.  Imagine my disappointment when I found that there was no such information or support networks out there, adding to the loneliness and isolation I already felt after a long battle with trying to get diagnosed, as well as how different I felt from others my age due to the symptoms I was experiencing.

After inspiration from a close friend and fellow blogger, I decided to start my own blog and so it was born in January 2012 so that no one else who may in the future be diagnosed with the same condition will go through what I did – feeling as if they were the only one going through this and that no one else understands what it is like!!

I have now begun supporting the ‘Invisible Illness Awareness Week Project’ and the inspiration behind supporting the cause as my neurological condition qualifies as an invisible illness – by looking at me you would never though that there was anything wrong.  But that isn’t the case as my days are filled with constant dizziness, frequent attacks of vertigo and visual disturbances, as well as the stiffness and weakness in the lower extremities.  Many people underestimate the effects of invisible illness or dismiss them entirely, claiming that the person is lazy or “that it’s all in their head” and so on.

It is due to these common misconceptions that inspired me to write about my life and journey with this condition – as many doctors for years blamed my symptoms on anxiety.  In want to be able to express the truth about invisible illnesses as well as dispelling those myths that many people hold.

And now I find that although non-one else I have ‘met’ has the same condition or disability that I have, nevertheless I have come across many other patients and bloggers out there that I have been able to connect with and gain understanding and friendship.  And the inspiration that keeps me going?  Receiving messages of support during a bad day can mean the world…

WEGO Health Advocating for Another Carnival: Once Upon a Time…

Welcome again to another WEGO Health Advocating for Another Carnival, it’s the fifth day and the prompt is as follows:

It’s storytelling day! Write a story about yourself, your community as though you are a children’s book author.  Be sure to include a beginning, middle, and end.  Extra points for illustrations! 

I love this prompt! It’s really different and am sure it is a style of writing us health activists haven’t tried before.  It seems to be a lot harder than it sounds but here it goes…

Once upon a time in a large kingdom called Wales there lived a young princess named Rhiann.  Rhiann was a very lonely princess, nobody understood her as she had an invisible illness meaning she was unwell but nobody could see what was wrong.  This was due to a problem with her brain, a problem no-one else in the kingdom suffered from.

As no other person could see why the princess was so unwell, many of the servants and commoners were suspicious of her assuming that she was inventing the illness to gain attention.  This made the princess so very lonely, and isolated, her only friend being her trusted dog named Honey.

One day, along with Honey, Rhiann went for a walk in the forest where she came upon a little cottage.  The curiosity got the better of the young princess and she stepped inside, “Hello?” she cried out.  Then a mysterious looking witch came into the light “Yes, princess?” she replied.  “Hello, my name’s Rhiann and I just happened to come across the cottage, I’m awfully lonely and was hoping to find a friend.”

The old witch stared at her in wonder, “Yes, my dear Princess, I have heard all about your troubles, and I have something here which will solve all of your problems”.  The old woman gave her a mysterious looking box, which looked very much like a large book. Rhiann opened this book, and instead found a screen with a board with keys, one featuring each letter of the alphabet, as well as numbers and other symbols.

“Thank you so much” the princess cried out, running out of the cottage, Honey behind her, determined to get back to the castle as soon as possible to try out the mysterious object.  As she arrived, Rhiann headed straight to her chambers, settling the mysterious object on her bed.  After studying it for several minutes, the princess found an on button – and she was soon transported to other worlds on the screen.  This thing she was given, according to a note that was attached to this object by the witch, was called a laptop, in which she was able to explore the ‘internet’ – a portal which could take the princess wherever she wanted to go.  The witch also gave instructions on how to use the internet as well as giving her addresses in which she could go on to make friends.

The princess desperately typed and typed these addresses on the laptop and whoosh, she found everything she could wish for.  She found a place were there were a lot of different people with a variety of different medical conditions.  She chatted for hours and hours with these people, talking about a lot of different things.  And she found that these strangers, accepted her for exactly who she was with no judgement.

And as the months and years passed all of these new people became her good friends and the princess was never lonely again.

THE END

So, what do you think of my attempts at writing as if I were a children’s book author?  I wrote this as if I were the main character – and the loneliness and isolation ‘the princess’ felt was the same feelings that I have had for many years, the feeling that you are not accepted.  That was until, like the character in my story I became active on the internet, especially within the health community as since then I have had the pleasure of meeting a lot of people who have accepted me for exactly the person I am, and I am blessed to call them my friends.  This is dedicated to all of them.

WEGO Health Advocating for Another Carnival: Inside a Fishbowl Post

Welcome to the first post of the week-long carnival hosted by WEGO Health.  This special writing carnival focuses on health activists who dedicate their time advocating for someone else.

Today for the first post I have decided to use one of the bonus prompts given.  The reason for this is that today’s prompt asked to provide a descriptive portrait of the health community and to provide an image.  However, as, I have mentioned before, the condition which I suffer from is an invisible, therefore, even I were to provide a descriptive portrait of the health community it wouldn’t shed light on the condition.  In addition, as the condition is neurological in nature, it means that not every patient is the same, each unique and each exhibiting different symptoms.

The bonus prompt I have decided to use is entitled ‘From Inside the Fishbowl’ which asks:

People think that they know what your life is like – but appearances can be deceiving.  Write a paragraph about what your life looks like from the outside looking in – then write a paragraph about what it’s actually like from inside.

So, if I and others like me in the wider health community were to be placed inside a fishbowl, seeing what my life looks like from the outside looking in they may come to the conclusion that my life was pretty great.  Maybe they would conclude that there isn’t much wrong, I look ‘normal’, and am able to walk, talk, able to complete chores around the house.

However, as with all invisible chronic health conditions, the daily struggles and the symptoms with which I experience on a daily basis cannot be seen, they are invisible to the naked eye.  If these were visible, people would be able to see the overwhelming fatigue that I often experience especially in the evenings, often needing to change into a comfortable pair of pyjamas before 7.00 p.m.  The dizziness and imbalance that I constantly feel would be visible, the imbalance being characterised by the swaying back and forward that I experience when standing, legs visibly shaking also.  It would also not be known that due to the spastic paraparesis that I suffer makes my legs feel incredibly stiff and weak, leading to the giving of way of legs, falls experienced on a regular basis.

If my life were visible inside a fishbowl, I hope people would understand how the condition in which I suffer has a negative impact upon all areas of my life, and how even though I may look fine, it is not often the case, instead feeling unwell the majority of the time – dizzy, my whole world moving and shifting.  It would clearly be visible all the problems faced in terms of the mobility – the weakness in the legs, the trembling sensations that I feel, making them feel as if they are constantly shaking whenever I am standing.  The tiredness I feel the majority of the time – the constant state of fatigue drowning me.  Hope it just goes to show that appearances can be deceptive, and although a person may appear healthy and ‘normal; it may not necessarily be the case.

Did you Know?…

Did you know that September 10-16 is ‘National Invisible Chronic Illness Awareness Week’?  Well, it’s based more in America, but still there are plenty of ways that people living in other parts of the world can participate – there are even going to be online virtual conferences to learn more about invisible chronic illness and connect with others.  To learn more about ‘National Invisible Chronic Illness Awareness Week’, you can visit the website at:

National Invisible Chronic Illness Awareness Week Homepage 

As part of the Awareness Event, those running the event have shared ’30 Things’ Meme to share with others what it is like living with an invisible chronic illness – especially as many often exclaim “Nobody understands me!”  This therefore, is an excellent opportunity to educate others so that people will learn to understand!

THINGS YOU MAY NOT KNOW ABOUT MY CHRONIC ILLNESS 

So here is my ’30 Things about my Chronic Illness’…

1. The illness I live with is…  Long-Standing Brain Stem Lesion and Spastic Paraparesis

2. I was diagnosed with it in the year… 2010

3. But I had symptoms since… The stiffness in my legs I have experienced since I was born although due to no diagnosis and no awareness that there was something wrong always thought it was normal!!  The dizziness and vertigo began around the age of 8

4. Te biggest adjustment I’ve had to make is… Learning to pace myself, take regular breaks to sit down so that my legs do not give way.  For example, do chores in small chunks whereas I preferred to complete them all in one go before my symptoms became worse

5. Most people assume… That because I look ‘normal’ that I must be healthy, whereas the reality is that I often feel extremely unwell, the dizziness being constant and often feeling incredibly nauseous and weak

6. The hardest parts about mornings are: The incredible weakness and fatigue that I feel, sometimes it feels as though I haven’t had any sleep at all

7. My favourite medical TV show is… It has to be ‘Grey’s Anatomy’ – would be much more fun attending hospital appointments if all doctors were as good-looking as they are at Seattle Grace Mercy West!

8. A gadget I couldn’t live without is… Has to be between my iPhone or the Life Line alarm I have had installed – due to the weakness in my legs it means they often give way and so have a significant number of falls and so with these gadgets it means that I can easily reach somebody to help me.  The iPhone also helps me keep connected with others when I am too unwell to get out of bed to go on the computer

9. The hardest parts about nights are: When the dizziness is so bad that I cannot get to sleep, sometimes it has been so bad that I have had nights where I have had no sleep at all

10. Each day I take __ pills and vitamins… Every day I take 5 pills (sometimes more when the vertigo is severe I took one to help stop it and ward off nausea)

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

12. If I had to choose between an invisible illness or a visible illness, 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… Despite all my problems I still like to give back to the community and volunteer my time at a local mental health resource centre, which allows me to help out in any way that I am able.  It’s much flexible than a paid job, as if I am really unwell there is no pressure on me to attend

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 I never thought I could do with my illness that I did was… Probably graduating university and attaining a degree in Psychology.  It was a lot of hard work and draining physically but had a lot of help from the University itself to be able to achieve this

17: The commercials about my illness: There are none really as it is rare; have not met anyone else with the same condition! I would say that it is quite similar to MS

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

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

20. A new hobby I have taken up since my diagnosis is… Using an exercise machine called ‘Aeropilates’ it gives me the opportunity to take part in cardiovascular exercise whilst lying down without worrying about suffering any falls.  Another hobby is writing this blog, something I wouldn’t have done if it wasn’t for the illness

21. If I could have one day of feeling normal again I would… Go on a big shopping spree!

22. My illness has taught me… As I was misdiagnosed with suffering from anxiety before being diagnosed with the neurological condition, I therefore have learnt that doctors are not always right and that if we feel that there is something wrong than we should find an understanding doctor who listens

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: “Every day not be good.  But there is something good in every day” – So true!

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

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 someone did for me when I wasn’t feeling well was: Sending me a lovely present in the mail to cheer me up.

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: Positive and that I have helped the cause; and that I have successfully made people more aware of the impact of invisible chronic conditions.

Thank you for reading my answers to the questions!  I would love to know your thoughts on any of the subjects raised by the questionnaire.  Please feel free to add any comments below.  If you would like to connect with me privately, you can now email me at the following email address!:

brainlesionandme@gmail.com 

 

HAWMC Day 18: Open a Book…

Welcome everyone again.  It’s now Day 18 of the ’30 Days, 30 Posts Challenge’, and a new prompt to challenge us all Health Bloggers!  Today’s prompt reads:

Open a Book…Choose a book and open it to a random page  and point to a phrase.   Use that phrase to get you writing today.  Free write for 15-20 minutes without stopping.

Have been trying to decide which book I should choose for today’s challenge.  I was going to opt for a book by one of my favourite authors Jodi Picoult.  However, as I blog about my health condition, I thought it may be easier to choose a ‘Health related’ book to stay on topic of my blog.  Therefore, I finally decided on a book entitled ‘Sick and Tired of Feeling Sick and Tired: Living with Invisible Chronic Illness’.

The book is said to give hope and effective coping strategies for those suffering with invisible chronic illnesses and making them aware of their attitudes towards their illness and how to communicate effectively with family, friends as well as their doctors in a way that meets the needs of the individual.  How to random choose a page, and to pick a sentence…

So, I randomly fell upon page 29 and choose the following sentence:

Invisible diseases can wipe out one’s self-confidence and peace and in their place leave painful doubts about one’s own sense of what is real.

Now that I have chosen at random that passage, I feel that sentence is one that I can relate to and one that could have been written about me.  After the dizziness started at age 8, I went through years of trying to search for a diagnosis, going through many blood tests to determine the origin of the dreaded dizziness.

When no cause could be determined, is when the doctor used the “it’s all in your head” card, and describing the root cause of the dizziness as being due to an anxiety disorder.  As a result, it made me feel that I was the one at fault, to be blamed for my problems.  As the dizziness slowly progressed and became so bad that I was unable to leave the house unless I was accompanied by another person, I was referred to the local Community Mental Health Team.  And so began endless classes and other sessions of Anxiety Management Techniques, Relaxation and Breathing Exercises to lessen the anxiety I felt when in certain situations and to lessen the dizziness I felt.

I did put all these techniques and other tips that I learnt into practice, and felt I certainly did feel less anxious when going out, although I still needed to be someone.  However, I found that the dizziness that I experienced did not lessen at all.

Therefore, to reiterate the sentence from the book that I had chosen – it really dented my self-confidence and made me doubt myself, “was the dizziness that I felt real, or am I simply imagining it? Am I really experiencing it?”.

After a time, I did begin to even doubt if the doctors were correct in their diagnosis and felt that perhaps the dizziness was caused by something other than anxiety.  However, I did not have the self-confidence to bring up my concerns with the doctors, and felt that perhaps that I was being a hypochondriac.  After all they are the professionals and know a lot more than myself.

It wasn’t until another healthcare professional I talked during a course I was participating in, also voiced her concerns about the dizziness, and talked about possible neurological causes.  Hearing this from a ‘professional’ than gave me that push to go and see a doctor about getting the ball rolling for a referral to a neurologist.  The doctor whom I saw however was unconvinced that I needed to see a neurologist – sometimes if you have been branded as a patient with ‘psychological problem’ then it is hard for you to be taken seriously.  It helped that I also had a parent in my corner acting as an advocate.  And then finally I got the referral I needed to see a neurological consultant…

And as they say, the rest is history!!….

I hoped you enjoy today’s post…Again, please feel free to comment…