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In Chronic Illness

HAWMC Day 28: H.E.A.L.T.H

April 28, 2015 No Comments

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 given prompts.

Tuesday 28th April: H.E.A.L.T.H

Use ‘health’ as an acronym and come up with words that represent your Health Activist journey.

H is for HOPE
As I have written in earlier posts, hope is a vital ingredient for life with a chronic illness. Hope acts as a survival mechanism for when we are at our lowest ebb. It is what motivates us to overcome the obstacles blocking our path, to push forward and carry on living. Hope is the line between creating and maintaining a happy and meaningful life despite chronic illness or being consumed by the negativity that illness can create. Hope allows us to have something look forward to when it seems our future looks bleak.

E is for EDUCATING
The aspect I love is the reciprocal nature of being a ‘health activist’. As much as my blog and my writing, as well as my presence on social media, helps to educate and inform others of neurological conditions such as the brain stem lesion I live with or the impact of chronic illness in general, I also enjoy learning of other chronic conditions and the impact that these create in the lives of the individuals living with them. I have learned so much about other chronic illnesses from reading various blogs that I love reading and by getting to know others on social media; in fact, I have even been known to diagnose patients on certain medical dramas from what I have learned from other bloggers and health activists!

A is for AWARENESS
An important part of living with a long-term health condition is self-management. Therefore, to be able to implement a self-management programme it is important to be aware of every aspect of your particular chronic condition. We need to be aware of potential triggers that can induce symptoms, so we can stay away from them as much as possible and not exacerbate the condition. It is important to also be aware of anything that eases symptoms for when they do occur. It is about making positive conscious decisions to help ease symptoms as much as possible and to improve quality of life.

L is for LISTENING
It is so important to listen to our bodies. Your body knows what it is capable of, and so we need to listen to them, especially if your condition is one which tends to fluctuate. In order to be as well as possible, we need to be aware of any changes in symptoms and act accordingly. An example, and one which I have done a lot lately, after listening more to my body, is taking a rest when needed.

T is for TWITTER
I have come to absolutely love Twitter and use it a lot to communicate and connect with other health advocates, bloggers, and spoonies in general. As well as using it as a tool to promote my blog and the writing I do as a result, but I have also built a lovely support network with others who or have had experiences with chronic illness. It is a great tool to use as a way of sustaining a role in health activism, by tweeting information, links and sharing other blogs regarding the condition being represented.

H is for Hobbies
Living with a chronic illness, it seems can often take over our entire lives. It really does, everyday symptoms dictate to us how our day is going, what we can and cannot do, and so on. It can make us feel that sometimes we have no control over our own lives. It is important therefore to have a life outside of illness. One way to do that is to find hobbies and interests away from illness. It is great to have hobbies as a way of distracting oneself from debilitating symptoms and helps alleviate the effect of them on our lives.

Don’t let what you can can’t do interfere with doing what you can do!

In Chronic Illness

Dear Rhiann (at age 16)…

April 28, 2014 No Comments

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

Today’s prompt reads as follows:

Dear 16-year-old-me….Write a letter to yourself at age 16. What would you tell yourself? What would you make your younger self aware of?

This particular post is one which is both extremely personal and difficult to write. Life for me was extremely difficult for me when I was 16 – I didn’t really have any friends, I was experiencing depression and anxiety as well as living with symptoms of the neurological condition even though it was undiagnosed at that time. As you can imagine was not a very happy time for me at all. Now, I look back at that time in my life, I realise how much I have learnt about myself and life in general since then and furthermore how far I have come since that difficult and dark period in my life. And, so there are so many lessons that I would share to my 16 year-old self, given the chance. Here is a letter that I have written to my younger self.

Dear Rhiann,

You may not believe this but this letter is from you but a you from the future. Yes, that is right, as I am writing this I am actually 28 years of age and the year is 2014. I am actually writing this letter just less than two weeks before going on a cruise around the Mediterranean – yes, that’s right – I (and the future you!) will finally get to experience the beauty and history of Italy; a place which I remember you have always wanted to visit. So, that is one lesson that I would like to share with you – that although you may not realise it now, and despite how life is difficult for you right now, there are still many good things that are and will happen during our lifetime. That even what may seem completely impossible right now, because of the way you are feeling and the severity of the dizziness that I know you are experiencing, the impossible is still within your grasp. The trip may not be easy, and will at times be extremely difficult but I promise it will be so worth it.

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I know you are going through a very painful and difficult time in your life, having formally been diagnosed with depression, and having to start taking antidepressants a couple of days before your sweet sixteen. Writing this, I remember how sick they made me feel for the first couple of weeks, only being able to eat very little before I felt full. I also remember the incredible loneliness I felt back then, especially during school, having no friends and walking around in a daze, trying to pass the time until lessons started back after lunch. But I want to reassure you and let you know that things will get better and there is so much more in life for you to enjoy and experience.

I also wanted to share a secret with you – the dizziness that you are experiencing? It’s not in your head, and you are certainly not imagining it as some doctors have led you to believe. Because of the rules of letting me write this letter to you, I am not allowed to tell you what is wrong, but there is an explanation for it. So, please don’t listen when the doctor’s keep telling you that the dizziness is psychological and a result of an anxiety disorder. Advocate and fight for yourself and your health instead of being timid and compliant like we are, as well as putting doctors on some sort of pedestal because they have had professional training and “they know what they are talking about”. One thing that I have learnt through years of navigating the medical field is that doctors are not always right; they are not infallible and they make mistakes. Listen to that voice inside your head that knows that something is wrong and don’t give up on finding answers to the reason behind the dizziness. Please keep fighting for answers. And don’t give up and lose hope that the answers will never come, because they do – it might take some years in the future but they do come. Trust me.

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I cannot say it isn’t going to be easy, or that it’s going to get better and you are going to live a full and normal life, but I believe that you are stronger than you think you are…and you can handle a lot more than you think you can…

And the loneliness you feel – it will go away, you are going to find people who will accept you for who you are, friends that are going to support you in times of need. I remember at sixteen being teased and ridiculed for who you are– just remember that no-one has a right to make you feel that you need to apologise for who you are. Don’t be ashamed to be yourself… You will find people who love you for exactly who you are and make you feel important and valued. It won’t happen overnight but those people are there waiting to find a wonderful friend like you are.

Before I forget – the heaviness and stiffness that you feel in your legs? The feelings that have been with you, since you can remember? Well, those feelings, they aren’t normal and isn’t something that everyone experiences…Maybe mention this at your next doctor’s appointment.

And good luck for your GCSE exams in a couple of months – not that you need it, you are going to do just great. You probably won’t believe it, but you will. Stop doubting yourself. Next stop will be your A-Levels, and then who know maybe even to University 😉

Take care of yourself and cherish this letter – keep it as a reminder for hope and the knowledge that life will get better and that everything is going to be OK.

From

Rhiann (aged 28)

In Chronic Illness

HAWMC Day 28: The First Time I…

April 28, 2012 No Comments

Welcome everyone to another post of ‘My Brain Lesion and Me’. For those readers just joining me, I am taking part in WEGO Health Activist Writer’s Month Challenge in which I am writing a brand new blog post everyday throughout April, based upon prompts given by WEGO Health. Today’s prompt reads as follows:

The First Time I…Write a post about the first time you did something? What is it? What was it like? What did you learn from it?

Well, on first thoughts I was going to write about the first time I went to University, but as I have already written about that during a previous post I decided against it. Instead I have decided to change the challenge a little bit and write about the first time I ‘experienced’ a dizzy spell.

At the time of my very first dizzy spell, I was around the age of 8, and it must have been around November or December as I distinctly remember that during the time the dizziness first started the school was busy with preparations and rehearsals for the annual Christmas Play.

Anyway, the very first attack of the dizziness occurred whilst on a shopping trip at a local DIY store with my parents, looking for new wallpaper for the living room. We were walking around the large, imposing store and out of the blue with no warning, I became incredibly dizzy, as if the room was spinning out of control around me, as if at any moment if I didn’t hold onto something quickly I would fall, and so I quickly grabbed and held on tight to my Mum’s hand to stop by body from collapsing. Obviously at the time I was very young, and had no clue as to what was happening to me, so my first instinct was to panic, it felt as if all the air in the store had vanished, and I was unable to breathe, my mouth became very dry and felt as if I was no longer able to swallow. My vision became disturbed – became blurry and was unable to focus on any visual clues around me, adding to the panic I was experiencing.

After what seemed like an eternity, we left the store, and being able to sit down in the car, felt like a huge relief, although the dizziness still continued for a while longer, but felt much safer sitting down, knowing that I wasn’t able to fall.

And that was the beginning of the dizziness, which gradually became worse, more frequent and intense until it became a constant in my life around a year ago, the dizziness with me 24/7.

Someone recently told me, it was important to get my story out there, especially as the majority of what is written about dizziness and vertigo discusses it being very much a symptom amongst the elderly, and so is important to make it clear it is something that can occur at any age. When it first started with me, with the exception of being sent for some blood tests, the dizziness was very much brushed under the carpet instead it being blamed upon psychological factors such as anxiety, instead of being referred to more specialised doctors for further testing. Dizziness isn’t something that should be ignored, and whatever the age of the person complaining of the symptom it should be taking seriously and investigated until everything has been ruled out. Believe me, it isn;t a nice symptom to live with, and can at times be totally debilitating.

Anyway, I hope you all enjoyed the post, and able to adequately describe the dizziness and what it was like when it happened. Please feel free to leave any comments and thoughts, I also appreciate any comments made…