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
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 is as follows:
Write a health acrostic for your condition, hashtag, or username! (acrostic = a poem where every letter of a word serves as the first letter of a word or phrase i.e. DOG = Digs Others’ Gardens)
This has actually been quite challenging for me as I have never written an acrostic poem – and has even been years since I have written a poem…but will give it my best short! Here it goes!:
Brain is at war,
Ravaging my mind
As well as my body, weakness overwhelming my limbs
It causing my world to endlessly spin
Not counting the endless falling
Spastic Paraparesis affecting my legs, often sends me
Tumbling to the floor; unable to rise
Enslaved, trapped in this body, not even
Medications can fix those lines that inflict my brain
Lying does not even cure the spinning
Even when my eyes are closed
Spinning joins me in my sleep
In dreams, my world is still in motion
Out those damn scars; those lines that fracture my brain; those
Never ending scars that affect my world around me so
What did you all think? A good first attempt? Feedback always appreciated…comment below!
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:
Say WHAT? What’s the most ridiculous thing you’ve heard about health or your condition? Where did you hear it and what did you think?
I once heard, a few years ago, by a doctor, that the dizziness I was experiencing was simply in my imagination and couldn’t possibly be experiencing it as I was far too young! Yes, dizziness is often discussed in relation as a symptoms often experienced later in life and sometimes referred to as “just another part of getting older.”
However, although dizziness is often seen in older adults, many of us, from experience, know that it can occur at any age, and can be as a result of a number of different factors. Dizziness can be as a result of a head injury, degenerative diseases and other physical ailments. And as I have read countless of times, during research, symptoms of dizziness are not normal at any age and are a sign that something is wrong, and therefore should be investigated.
Obviously been told this, and especially, someone in a position of power, like a doctor, and given that I was very young was distressing. Distressing to think that although the dizziness was severe and affecting me so badly, that no-one believed me. Telling me instead that it was all in my head also meant that the dizziness I was experiencing was not being investigated by doctors, and therefore further delayed me getting the correct diagnosis.
Obviously any symptoms that someone is experiencing which is out of the ordinary should be thoroughly investigated until all avenues have been exhausted, for peace of mind if anything.
What if the doctors that I visited took my dizziness more seriously? Perhaps then I would have gotten a diagnosis more quickly. Would it have made a difference in terms of treatment? Would the dizziness be less severe if I had interventions sooner? That I cannot answer but it would have meant that I wouldn’t have gone through so many years of believing that the dizziness was all in my head.
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:
“If I could do anything as a Health Activist…”
Think big today! Money/time/physical limitations are no longer an issue. What is your biggest goal that is now possible?
At the moment, as some of you may be aware, I attend a couple of social groups twice a week. These are open to everyone whether or not they have a chronic illness or not. The majority of the people who currently attend are middle-aged, and am by far the youngest person there! However, I do not mind this, and thoroughly enjoy the company when I attend the groups.
However, if there were no limitations placed upon my life, especially, the limitations that my illness places upon me, I would love to start a group specifically for younger people with chronic illness or disabilities; this will not only allow me to start a group that would support others that may experience problems associated with illness and disability such as isolation and loneliness but will also allow myself to meet others who are closer to my age.
This group would not only allow the opportunity to meet up and talk to others but I would also aim to apply for funding for trips to local sights and other amenities. In my own experiences, my illness and disability has isolated me from my peers, and have often kept me inside of the house, unable to go to places which may be of interest to me. So, allowing the opportunity to go on trips will break the isolation for myself and many others.
It has also been an idea of mine for some time, to also start a regular support group for people with dizziness problems like mine. Many people in my life, as best as they can, try to understand what it is to live with constant dizziness, but as we all know, it is very difficult to understand something that you have never experienced. So, it would be great to meet others, that are also living with dizziness for support and understanding, as well as gaining tips and coping strategies from each other!
And if money was of no issue, perhaps setting up a charity for those living with neurological conditions; a charity that aims to provide support and resources for a wide variety of neurological conditions that may not be covered by other specific neurological charities (such as MS Society UK). Living with the condition like I have, a long-standing brain stem lesion, I have found that it is extremely difficult to find a group or charity that fits my specific diagnosis, and therefore, it can even be more isolating as I have no idea which charity or organisation I can turn to for support and guidance. Wouldn’t it be great, therefore, to have a large general neurological based charity that can give advice, help with resources and support for anyone living with a brain condition – a place where anyone living with a neurological condition can belong.
It would be great to leave a long-lasting legacy after I am no longer here….
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 is as follows:
Post a picture that symbolises your condition and your experiences
Taken from: Matt Lassen Cartoons: Word of the Day - May 28 2011
Many of us living with chronic illnesses know that often it can rob us of our dreams and aspirations – often assuming that what we used to dream of achieving is no longer within our grasp. However, this is often not the truth – what may be out of our grasp is the most conventional route of achieving a particular dream; but often when living with a chronic illness, we need to find another route to be able to achieve our dream.
A dream of mine has always been to visit the beautiful country of Italy. In fact it is on my ‘Bucket List’ that we have complied at my social group which I attend. However, due to my problems with dizziness and vertigo, particularly affected by high ceilings flying there would not be a good option for me as the majority of airports are very large and have high ceilings – using this transport option would mean that I would be extremely unwell even before getting to the desired destination!
Airports – large and high. My idea of a nightmare!
Another option would be travelling by a coach; which is one option in which my Mother and I were considering. However, this was quickly dismissed after a recent trip to the cinema in which I was left in bad pain within my legs due to the cramped conditions, and therefore thought that travelling via coach for many hours would most likely result in severe pain.
Coaches don’t offer a lot of leg room – and for me would leave me in pain
Therefore, the only option left to me is a cruise. My parents went on one a couple of years ago and loved it – really could not recommend it enough. Although it is only really my last option left to be able to visit Italy; there are however a lot to think about. Such as the constant dizziness and balance problems. Would going on a cruise possibly increase the severity of the dizziness, vertigo and balance issues. People with vestibular disorders often have super sensitive balance – and although cruises have stabilisers and ‘healthy’ people report not feeling the motion of the cruise ship; a person with a vestibular however may feel the motion and be affected because of it. On the other hand, my balance and dizziness are a result of a neurological disorder and therefore it is interesting to consider whether I would be affected by a cruise in the same way a person with a vestibular disorder would.
A Cruise – good or bad thing with a condition like mine?
There are a lot of advantages of cruising for a person with a chronic illness; which really do appeal to me:
I am yet undecided whether I will eventually go on a cruise; there are many factors to consider, and my health being the biggest factor to consider. Would a cruise be a good fit for a condition like mine? One thing though, I would love something to really look forward to and be excited about – my future currently offers me more hospital appointments and the same old routine!
What are your thoughts? Do you suffer with a chronic illness and like to travel? What, in your opinion are the best types of holidays for those with chronic illness? Any more advantages of a cruise? Its disadvantages?
Please leave comments – would love to know your thoughts as ever!
Welcome to another post for the ’12 Days of being Chronically Thankful’, a revised version of the famous ’12 Days of Christmas’ for those living with chronic illness, like me.
On the ’6th Day of Christmas’ I was chronically thankful for…a theatre production!
Now, living with a chronic condition like mine, I am unable to attend a theatre production in person – most theatres are very big with high ceilings, as most of you are aware, high ceilings, and flashing fluorescent lights are a trigger for the episodes of severe vertigo that I often experience, and hence going to see a theatre production would make me extremely unwell.
However, a few weeks back, during one of my first trips out with my P.A, we visited my local library, and lo and behold I found a copy of a DVD of a production of ‘Les Misèrables’ that was filmed at the O2 for the show’s 25 year Anniversary. I was so excited as it is a show that I haven’t wanted to see for years, but because of my condition I have been unable to go and see it in London.
As a result, I instantly decided that I would rent it from the library, and on a day in which I felt really bad, leaving me unable to get out of bed, I managed to watch it on my computer. And I instantly fell in love with the musical – the story, the songs just everything about it! And for a couple of hours, I forgot about how bad I felt, I was still aware of the dizziness and vertigo as they are hard to ignore! However, I was so engrossed with the production of this amazing musical that I was able to ignore it, and just really enjoy the DVD!
And now I am equally excited for the film version of Les Misérables, starring Hugh Jackman, Russell Crowe and Anne Hathaway among others – and perhaps even planning a trip to the cinema with my Personal Assistant, it will be difficult for me being in the building but I am determined to achieve this feat!
And for that I am ‘chronically’ thankful!
Welcome everybody; am writing this post on a quiet Sunday afternoon. For today I have chosen a short prompt as this particular day I really am not feeling well. I have chosen a prompt from an earlier date. In the prompt entitled ‘Anatomy Post’ it was asked that we re-labelled an anatomy picture with new names or descriptions the body parts. I have chosen to label the different parts of the body which are affected by the differing symptoms that are caused by my condition; some of them are invisible such as the dizziness and vertigo so I have used the body part in which these symptoms originate (i.e. the brain).
What I have chosen to write about doesn’t really constitute as being ‘weird’ but more of a ‘nuisance.’ What is the nuisance aspect of my health condition?
It would have to be the unpredictable nature of the condition – never knowing when I am next going to become unwell; when the vertigo is going to come on. One minute I can be feeling quite good (due to the constant dizziness I never feel one hundred per cent) and then BAM out of nowhere it comes on and catches me by surprise. Life with a neurological condition like mine is really like living on a rollercoaster!
Similarly, with the weakness in my legs, and the problems I experience with them giving way can also be unpredictable and will do so suddenly out of the blue. On occasions I have gone out, browsing the stores in my local town and then all of a sudden I am on the floor as my legs have collapsed from under me.
As you can imagine this can be a nightmare, especially when making plans with others especially in advance as I can never know how I am going to feel on that particular day; or whether I will become unwell at the event or night out. And my legs also makes it very difficult to make plans or even to go out as I have no idea when the next time they are going to give way, and as I am often unable to get up after a fall it can make it very awkward and embarrassing if I do suffer one when out, which means that I am only able to go out for short periods of time when I do to decrease the risks of any collapses as standing for too long or over exertion can be a trigger of these attacks.
And there is the suspicion of other people as the randomness of how one minute I feel fine, and the next I am absolutely giddy for no apparent reason confuses them. It’s easy to assume that the person is faking or exaggerating the symptoms when they seemingly appear out of nowhere; but this isn’t the case, believe me I would much rather feel absolutely normal in my daily life and set out to achieve everything; to live a normal and exciting life – to able to travel, hold down a full-time job, or simply by going out with friends to parties or nightclubs. However, my conditions stops me from doing these things; and sometimes it’s just a struggle to get up out of bed every morning and to complete the little chores that need to be completed. I would much rather be living my life rather than by simply existing within it.
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!
