Becoming Visible in an Invisible World…

 

Last week (9-15th September 2013) was National Invisible Chronic Illness Awareness Week.  The idea behind this particular Awareness Week is to raise awareness of invisible chronic illnesses (which there are many!) as well as providing support to those suffering from such conditions, who may feel misunderstood by others, who often disbelieve their illness because they ‘look so good’.

What does a person with an invisible chronic illness look like?  The truth is, they look just like you or me.  Look at the person sitting next to you.  That person although may look healthy and normal , but their body may be hiding a secret.  That person could be battling a hidden illness such as fibromyalgia, ME, lupus, or MS.  They may look perfectly fine, but they may be in excruciating pain, dizzy or suffering from fatigue or other such symptoms often associated with invisible chronic conditions.

The symptoms associated with my condition such as the constant dizziness, bouts of vertigo, the trembling, stiffness and weakness in my legs are all invisible to the outside world.  No one other than me feels the trembling sensations or can feel the world spinning.  To look at me, I look normal, healthy.  Going out the only clue would be the crutch I use; but often people assume it’s used because of a temporary injury.  Often when I bump into someone I knew either from school or University days, or just a person whom I haven’t seen for a while asks “Oh, what have you done to your leg?” assuming the crutch is temporary and not because I am suffering from a permanent disability.

Nowadays, however the somewhat invisibility of my condition has become much more visible.  Because of the severity of the trembling in my legs, and the fatigue that has become so much worse, I now have to use my wheelchair much more regularly.  On the days where I am out with my carer, I am in my wheelchair more than I am out of it, to avoid falls and because the stiffness and trembling in my legs makes it so difficult to walk far.  It’s still true that the dizziness is bad that being in the wheelchair is difficult for me, but as the falls are much more regular and the trembling is so severe that now I have learnt I have little choice but to use the wheelchair.

 

Me out and about in my wheelchair

Me out and about in my wheelchair

 

 

Last week, whilst out with my carer, we went to our regular coffee shop for our favourite hot drink, is when I overheard a conversation between a middle-aged couple about me.  “I saw her walk a few steps before getting in the wheelchair, so she can’t really need it; she must be faking”.  This unfortunately isn’t a rare statement against those with invisible chronic illnesses who occasionally need to use a wheelchair or other assistive devices.  Those who are healthy can’t seem to fathom that a person can fluctuate between needing to use a wheelchair, or other assistive devices such as a crutch and feeling well enough to being without such assistive aids.

It raises interesting questions whether such awareness weeks and events are working and are successful in raising awareness of invisible chronic illnesses when there are still such prejudice and discrimination against those battling with such conditions.   How can we raise awareness within the wider community and population about chronic invisible illnesses and disabilities and the impact they can have on those living with them.  How can we teach others that wheelchairs are needed for not just those who are paralysed or missing limbs; that wheelchairs are not always a permanent fixture in someone’s life but can be used for certain situations or when a person experiences a flare in symptoms; a common feature with invisible chronic conditions.

During the National Invisible Chronic Awareness Week, people blogged, tweeted and shared information and took part in discussions on Facebook to raise awareness and connect with others facing similar situations but it seems that we have more work to do in educating the public, to help the end the prejudice and discrimination when those with invisible illnesses when using assistive devices as well as using disability badges…

 

Don’t judge others for you do not know their story…

On Wednesday at the ‘Life 4 Living‘ group that I attend, we had a very interesting seminar on Diversity.  In the seminar we were split into two groups and given a laminated sheet with a picture of an island, and a deck of cards with pictures of a diverse group of people, with only their occupation listed on the cards.  We were then told that a ship carrying the people on the cards was in an accident, which resulted in the ship sinking and the people being stranded in the middle of the ocean.  Each group had a lifeboat – however, on the lifeboat there were only spaces for 10 people, and hence we had to decide who of those people to save and whom to leave in the water.

This was obviously very difficult as the only basis we had to make our decisions is what they looked like and their occupations.  During our discussions we decided to save a doctor and nurse, to treat those with medical injuries, a carpenter to help build shelter from the bad weather, and gardener’s to help grow crops and nutrients whilst being stuck on the deserted island.

However, we soon learnt that the doctor who we chose to rescue was in fact a doctor of music and not a medical doctor.  And the nurse, was a veterinarian and so would not be very useful in treating human patients!  And the people whom we rejected, for example, the biker as we thought he looked like he would cause trouble, would in fact be extremely useful in an emergency situation as he was a surgeon.

This exercise, however, taught us how we often make judgements based on very little information causing us to make snap decisions on the type of person we are busy scrutinising.  We are too busy scrutinising others; determining the type of person we believe them to be instead of seeking out the person’s story.

bafe4bf9eb0fc3e4860e9c6e24c1f670

Many of you spoonies reading this will surely understand this; particularly those with invisible illnesses as we are often victim of others’ judgements.  For example, once I went out, and forgot my crutch.  Due to the problems with my balance, I was all over the place, and as a result, a woman came up to me and accused me of being drunk.  I have heard many other stories, of spoonies whom have been victims of incorrect assumptions made by others – people who have been accused of misusing a disability badge, because there were no outward signs of illness or disability, and thus were labelled as being healthy, and in no need of using a disability parking bay.  There are endless examples of these types of anecdotes that have been shared by spoonies everywhere.  I am sure everyone reading can think of at least one example from their personal experience.  Please feel free to share your experiences in the comment section below.

images

So, the game that we played at Life 4 Living, and through the experience of living with an invisible illness, has taught me to not make assumptions about people, without getting to know them first.  To not assume that a person has no wounds, or illness because there are no scars; no signs of illness or disability as not all wounds, illnesses or disabilities are visible, many are hidden as if keeping a secret from the outside world.  And as the quote above also tells us, we also shouldn’t judge so quickly or harshly as we may find ourselves walking in that person’s shoes.

Perhaps if we weren’t so quick to judge in the exercise at Life 4 Living then we may have chosen the people that would have been useful whilst being deserted on that island, instead of those we chose based on our preconceived ideas regarding their abilities and resources that they would bring.

 

This is a lesson that we all must learn….

HAWMC 2013 Day 24: Pinterest Board

 

295224_10150737756374254_36556179253_11203240_683573239_n

 

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:

Create a Pinterest board for your health focus.  Pin 3 things.  Share the image

Invisible Illness Panel: Journey to Diagnosis with an Invisible Illness

Hello to all my readers

I would like to take this opportunity to thank Christine Miserandino (@bydls) of ‘But You Don’t Look Sick‘ and WEGO Health for inviting me to take part in the Health Activist Roundtable yesterday as well as the other participants: Michele (@lifeaftertrauma), Andrea (@thegreatbowelmovement) and Amy (@abeeliever).

Unfortunately, there were some technical difficulties on my end which prevented me from fully participating so thought I would take an opportunity to discuss my thoughts on some of the issues that were discussed.

Topic 1: How did it feel to have symptoms but no succinct diagnosis? 

As with most people, I think that frustration is the first emotion that people feel when experiencing symptoms without an accurate diagnosis.  My frustration seemed to stem from the lack of understanding from the doctors, a lot of what is written regarding dizziness seems to be directed towards senior citizens, so when I presented with dizziness at the age of 8 many doctors were simply stumped.

Frustration is certainly a key word in terms of invisible illness – frustration as the problems and all what is associated with it cannot be seen so is often met with scepticism from medical professionals, as if we are faking and just want some attention.  Frustration as often with many illnesses, test after test comes back clear, and no cause can  be found and so that cycle continues time and time again, with a definitive diagnosis taking months and sometimes years to come to fruition.

Then instead of doing full investigations on what may be the cause, I was stuck with the label of ‘anxiety’, stating that the anxiety was simply psychosomatic – the easy diagnosis, the one doctors seem to use when they are truly stumped and  haven’t a clue what was going on or are too lazy to carry out full investigations or even write referrals.  Another emotion is loneliness and isolation – all caused by the lack of knowledge or understanding of what is going on inside of me, and having no one around who is going through the exact same experiences as myself.  This all started when I was 8, when the internet was still in its infancy and was something that I did not have access to, and social media certainly did not exist.  If only it happened when I was older and had access to the internet and social media sites, then I may not have felt that loneliness and isolation.  I just felt so different from my friends and peers from school, something was happening to me, something which isn’t visible, and so was not really understood by anyone.

Interestingly, in terms of the problems with the legs and the symptoms of the heaviness and stiffness associated with the spastic paraparesis, I only found out about them after the diagnosis.  As the cause happened at birth, I have always experienced these problems with my legs, so thought they were normal as I hadn’t known any different.  So, is important to remember that every little experience inside of your body that feels different or normal should be noted and talked about with the doctor – after all it could hold the key to getting that final diagnosis…

Topic 2: How did you navigate the health system during your quest for a diagnosis?

This is an interesting topic in terms of the UK Health System, as obviously it is extremely different to that of the US Health System.  As in the UK we have a National Health System, so we do not pay to go and see medical professionals or even for treatment after receiving a diagnosis.

This obviously provides challenges in itself, such as long waiting times to see specialists and consultants, especially within certain specialities such as neurology.  So, often GP’s will only send referrals when it is really needed.

And as I was labelled with a ‘psychosomatic related condition’ then doctors became very sceptical regarding any symptoms that I was experiencing, linking them all to the anxiety disorder and depression that was diagnosed. Once you are stuck with a certain label it is certainly very difficult to get rid of that particular label, and instead of investigating the problems, I was referred to psychologists, psychiatrists, occupational therapists and other mental health professionals – they didn’t seem to want to believe me when I said the anxiety problems that I was experiencing all started after the dizziness, and the panic attacks that I eventually had started after the dizziness had come on.  I became dizzy and then I started panicking, instead of the other way around.

Deep down, I had always known or at least suspected that there was something wrong, that there was an problems inside of me that was the cause of all these symptoms, and it wasn’t until I left university and grown up somewhat, I became advocating for myself and pushed for being referred to consultants and specialists as I just wanted to find out what was wrong or at least put my mind at ease that it wasn’t anything serious.

Advocacy is an important part of the journey towards diagnosis, you really need to learn to stand up for yourself with doctors and other medical professionals!  Trust me,  if you stay quiet and meek as I often was you may never find out those all important questions!

Topic 3: Did the internet or social media help you in finding your diagnosis?

As I said before, when all of the symptoms started I was very young, and the internet was still in its infancy and as I had no real access to it as we didn’t have it at home.  Once I got a bit older, I admit I did ‘google’ the symptoms I was experiencing.  This was when I found that much of what is written about dizziness and balance related problems, will often regard it as something which affects the senior population, and could not find any information regarding these problems within my particular age group.

No, the internet and social media really didn’t help through the particular diagnosis stage, but has really helped me since then.  The support I have found since then has been incredible and have been lucky to have found life-long friends from various support groups as well as people I have met through Twitter, Facebook and of course, WEGO Health!

Topic 4: have you turned to the internet with symptoms or how your symptoms relate to your diagnosis and what goes with it?

Before the diagnosis, I had to really stop myself from constantly ‘googling’ my particular symptoms as it can be extremely frightening, especially when all the worst-case scenarios are presented on the screen.  As often what happens with new medical students you will convince yourself that you have something terribly wrong with you!

However, since the diagnosis I have done some research on the brain stem and much on neurology, and have found that damage to certain areas of the brain stem certainly explains the symptoms I have experienced and continue to experience.  Looks like the doctors were finally right!

Topic 5: How did you feel to finally get your diagnosis? 

I found it to be a very bittersweet experience, on the one hand I was so relieved to have the diagnosis – I finally got the validation from the doctors, that all what I have been experiencing wasn’t in my head after all, and instead was caused by damage to an area of the brain.  However, it was also quite upsetting as the consultant informed me that there wasn’t anything that can be done to treat or cure the condition, only certain medications that could attempt to control the severity of the symptoms, which unfortunately I have found not to be effective and continue to be severely affected by certain symptoms.  The consultant further informed that the symptoms and the lesion to the brain stem seems to be stable and there should be no further deterioration in symptoms.  unfortunately this hasn’t been the case as certain symptoms have deteriorated, some quite markedly where I am the point of being assessed for a wheelchair due to the weakness in the legs.

Another point to note is that doctors do not know everything; even these top consultants!

Topic 6: How did the diagnosis change the way you thought of your health and body, etc?

As I said before, I finally felt validated and relieved that there was an explanation of my symptoms.  Now that I finally knew after years of searching and endless doctors appointments and hospital visits I could finally live instead of merely existing within my body and my life in general.

Topic 7: How did your diagnosis change the way others thought about you and your health?

I’m not sure as I haven’t really discussed it with anyone but I now notice that nobody really says things like they used to.  Things like “You should get out more”, “You need to push yourself to be able to do things” and so on.  They have now come to realise that the symptoms were not imagined or psychosomatic, and there was a physical reason for them.  It’s like they think no longer think that I am to blame for what has happened to be and how I am – it’s like they now think I have a valid excuse to be how I am.

Topic 8: Do you have any tips for those currently searching for a diagnosis; now that we are over that bridge what would you tell someone still on the other side?

I would advise someone still looking for that validation  and important diagnosis to not to give up, and to not be afraid to challenge doctors or to ask questions.  We all need to speak up and to advocate for ourselves – if my parents and I didn’t then I may still be where I was 2 years ago; without answers, validation or that diagnosis.

 

Thank you, and thanks again to everyone at WEGO Health and to Christine for being a wonderful hostess!

Am Taking Part in an Invisible Illness Panel!

Hello Everyone

I just wanted to let you all know that tomorrow at 12.00 p.m. EDT (4.00 p.m. GMT) I will be taking part in an Invisible Illness Panel with WEGO Health and Christine Miserandino from ‘But You Don’t Look Sick’ who is very influential within the Invisible Illness Community, the author of the wonderful and relevant ‘Spoon Theory‘ and whom coined the phrase ‘spoonies’ for all those living and dealing with invisible chronic illness.  The topic will be the Journey to Diagnosis with an Invisible Illness.

You can join in the conversation by going to the tweetchat tomorrow, where there will also be a link to the online meeting room:

http://tweetchat.com/room/haroundtable

Wish me luck!!

 

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…