chronic illness Archives – Page 53 of 62

In Chronic Illness

HAWMC 2013 Day 11: Why I love to Tweet!

April 11, 2013 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 prompts given.

Today’s prompt is as follows:

Write about your favourite social network. Do you love Twitter? Facebook? Pinterest? Why?

I can be found on most social networks – Facebook, Twitter, Google+, Pinterest and Instagram! Facebook used to be my first choice of social networks as, it was the one all my friends used; it was convenient and had a lot of features that I could integrate with online socialising such as the messenger IM, games and so on. However, since starting the blog and the health activism, Twitter has now become my favourite social network to use.

Twitter has become my favourite social network for several reasons:

It only allows 140 characters per tweet and therefore is quick to get your message out there. It gets straight to the point, and can easily receive and view content quickly
You can be updated with current and breaking news which can come in very handy. You can follow organisations, charities, or even experts on your specific interest, and able to get up to date on all the latest research, studies and advice relating to your health condition for example
I love the ‘favourites’ feature – with so many blogs and articles that people tweet which I want to read but often don’t have the time, I can ‘favourite’ them; and save those links which I can read later when I have the time
Twitter allows you to send your message; your story where potentially millions of people will hear it
Twitter is also great for promoting your blog and new posts which have just been published and to get more traffic to the blog. According to my site statistics the majority of people find my blog through Twitter
It is a great platform for networking with other ‘spoonies’ and make new and lasting friendships – I have been blessed to have met so many wonderful people, who I now regard as great friends. Twitter allows us all to stay connected and to stay up-to-date with what is going on with each other. For example, if we read that someone is having a bad day then we can send messages of support and comfort. Twitter can basically used to form a small community of like-minded people, or people with shared experiences or in out cases illnesses!
Twitter is also a great platform to express opinions on a wide variety of local and global issues; and for bloggers and health activists especially it allows us to express opinions on the issues that matter most to us, and what is relevant to our health conditions
Twitter can also be a great tool for researching and finding new information by searching using specific hashtags. This may be useful for patients wanting to find information on new treatments or therapies that have been recommended by their medical team and determine how effective or what other patients thought of the treatment/therapy
The service TweetChat allows users to get involved and communicate live with organisations and chat with like-minded people. I love getting involved with the WEGO Health Chats via Twitter every week and discussing various topics relating to the chronic illness community
There are plenty of Twitter users that provides us all with a constant flow of positive quotes and messages in order to remind us to direct our thoughts in a positive way and become better than we are. You can log in to Twitter on a bad day and within minutes be lifted by positive words
Twitter can be used on computers, phones and tablets via the website or an application that can be downloaded – so you are able to get your message out anytime, anywhere!

Furthermore, if it was not for Twitter, I would never have met some wonderful people and help form the ‘Spoonie Book Club’ – a book club for those of us battling with chronic illness. A fantastic opportunity to talk with friends on topics that matter most to us, but more than that, also allows us to forget about our illnesses and conditions for an hour and just have fun discussing a great book and have some fun. Thanks to the other ladies that helped form the book group – Aisha, Anya and Megan!

If you would like to join and discuss some great books, you can connect with us by using the hashtag #spooniebookclub – the details of the book for this month can be found here

What is your favourite social network? And why? As ever would love to hear your thoughts!

In Chronic Illness

HAWMC 2013 Day 6: A Letter to my Condition….

April 6, 2013 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:

Write a letter to your condition – what do you want to get off your chest?

Unfortunately, today I am feeling particularly unwell, and am not feeling up to writing. So, instead I have decided to republish an older post, which was along the same line as today’s post, which asked us to write a letter to our condition.

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Dear brain lesion,

I am not sure quite what to say to you, as I have never written a letter like this before but I will try my best.

I find you very odd; I experience so many fluctuations in my condition – how I feel, and the severity in which I experience the symptoms that you cause me. These fluctuations not only change day by day, but can also change hour from hour, or even minute by minute!! And it’s these fluctuations that stops me from leading a normal life. This condition does not allow me the ability to make plans for nights out with friends, or holidays or full days out, as I never know how I will feel on that particular day, or even I am having a rare ‘good’ day, I have no knowledge whether it will remain that way, or if I will be taken ill sometime during the trip.

Living with you day-to-day is hard, and it’s particularly hard when questions are raised by others about you. You are rare, and not understood, even doctors can be baffled by you. This then causes the mammoth task of trying to explain you – what you are, how you affect me and so on. I would wish no chronic illness on anyone, but one which is especially difficult as you are is particularly hard to deal with. The loneliness and isolation that you cause, can often be overwhelming; no one can understand exactly how I feel, or what it is exactly like living with you. There are no support groups for people like me, living with you, no friends who I can call on when times are tough and I really need to vent; I have several confidantes – some online, some I can see in real life, but still no one that can just get ‘you’ and how you treat me; how you affect me.

I have lived with you for so many years now; many of those years I did not even know of your existence. Now, you are constantly making your presence felt, like a loud, harsh scream being blasted in my ear. Every turn I make, you are their, like a shadow; a dark figure lurking, waiting. And then within a blink of an eye, my legs will give out; lying on the ground, unable to get up due to the weakness in the legs. You causing embarrassment; you causing injuries and pain. The doctors tell me that there’s nothing that can be done – no treatments to help, no reigns that I can attach to keep you under control. When I was diagnosed with you, at first there was relief – relief at knowing that there was a name for you; relief that finally I had validation from the doctors’ that you were very much real, and not in my head as it was often claimed. Then, I have felt despair; despair at realising that there was nothing anyone could do to treat eliminate you from life. It was like being blindfolded and then left in the middle in the centre of a garden maze where I am expected to find the exit without any guidance and without the ability to see exactly where I was going.

You have made me your victim, from something that I cannot escape. Never will I escape you; you live deep within me, deep within my brain, there will you be there forever. But I will not let you win, I will not let you beat me, and I will be happy despite you, that I am determined of. Because of you, I have found inner strength, have found things that I am good at, and have found ways in which I can help others and participate in social activities and pastimes. Despite you, I have found friends whom I can talk to and despite the problems you cause, they like me for who I am, and look beyond my imperfections.

I may not be able to beat you, but because of you, I am stronger than I have realised; have made me aware that I can overcome certain obstacles and overcome challenges that come within my path. And I will not let you beat me – all the obstacles and challenges that you present , I will overcome; find my own path into achieving everything that I wish to. I am hoping to go on holiday, possibly on a cruise, and I am determined not to let you beat me – I will have a good time despite you.

And for that I thank you.

Rhiann x

In Chronic Illness

HAWMC 2013 Day 3: Wordless Wednesdays

April 3, 2013 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 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

In Chronic Illness

HAWMC 2013 Day 2: Brain Stem Lesion? Here’s all you need to know…

April 2, 2013 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 is as follows:

Introduce your condition(s) to other Health Activists. What are 5 things you want them to know about your condition/your activism

For you all that are new to the blog and therefore to me – Welcome! My name is Rhiann and I am 27 years old living in a small town within South Wales (UK). The conditions which I live are a long-standing brain stem lesion and spastic paraparesis. Both are as a result of damage to the brain, in which I suffered at birth (or so the doctor thinks) however I was not diagnosed until I was 24!

The brain-stem lesion basically means that there is scarring on the brain stem. As a result of this, I live with constant dizziness with which I have suffered since I was approximately 8 years old, although it may have been before this age. As well as the constant dizziness, I also have episodes of vertigo (spinning sensations) and visual disturbances. The spastic paraparesis is connected with the brain stem lesion, and causes stiffness and weakness in the legs, and neuropathic pain. The difficulties I experience with my legs can result in a lot of falls, especially as they often give way on me. Lately, I have been experiencing episodic periods of numbness in my legs and cannot feel any sensation.

These are the 5 things that I would like to share with anyone new regarding my health condition/activism:

My condition and the effects that it has on my life is for the most part invisible, and therefore it can be hard to accept that there is anything wrong. But there is – and although the symptoms cannot be seen, they still have a huge impact upon my life and am unable to do a lot because of it
You are unable to compare one sufferer of a neurological to another – think of us all as snowflakes. Like snowflakes, each case is unique as and it is possible that mot all patients will exhibit the same set of symptoms. The types of symptoms and the severity of the symptoms both can vary widely from patient to patient.
The condition is unpredictable – apart from the dizziness which is constant; many of the other symptoms can appear with no warning. Added to this, I as the symptoms are unpredictable, I never know how I am going I am going to feel from day-to-day, sometimes even minute-to-minute. Because of this it can be extremely difficult to make social plans with friends, as there is always a possibility that I will need to cancel
Although symptoms can be unpredictable, I have however found that there are certain triggers that can exacerbate the severity of the symptoms. These include fatigue (a major factor that can increase the likelihood of symptoms occurring), the common trigger – stress! I have also found that the cold weather can really affect the spasticity in my legs, and so during the winter months I ensure that I really make sure my legs are warm when out, such as thermals underneath my clothes. In contrast the very hot weather can also increase the severity of the spasticity and other symptoms, and during the summer I have to make sure I drink plenty and stay in the shade as much as possible.
There is no treatment or cure for my condition, yes, I take some medications, but they are only to try and control the symptoms that I experience (although I have had little success with them). The medications are for management of the symptoms rather than to treat the root cause – the damage has been done and unfortunately cannot be reversed. Due to this, the condition is life-long, and at times can be disabling; there are times when my legs are so weak that I cannot get out of bed, or the dizziness is so bad that I am falling over the place, and so just need to lie down on my bed and rest. The condition is also rare and so there is no real support for those like me (one of the reasons why I started the blog), and because the condition is such an enigma there is little research or literature on it, or no charity or organisation to provide support or advocacy – basically my condition is unknown.

In terms of my health activism I am on several different social networks. You can find me on

In Chronic Illness

To Go or Not To Go…

March 19, 2013 No Comments

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! — 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 — 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? — 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:

Cruise liners and the companies running them are very happy to accommodate for those with disabilities and chronic illnesses – if you tell them in advance what you need then they will happy to accommodate your specific requirements. Or if they cannot themselves they will signpost you to places where you will be able to rent certain mobility aids, etc
If like me, you are unable to determine when you will become unwell; symptoms appear with no warning then on a cruise you can simply head back to the cabin to have rest or a nap. If you were on a conventional holiday and out on an excursion you would not be able to do so
With mobility problems like myself; cruise ships have plenty of elevators that you can use, and if you suddenly get tired, there are plenty of lounges, bars, restaurants or seats that you can plop yourself down on to take a break
When the cruise liner has reached a particular destination and has docked, if you are not up to go sight-seeing then you do not have to – you can just stay on the ship and relax!
Plenty to do and lots going on! I personally like to be entertained and if I am up to it like lots to do – and cruises offer that. Amenities often include theatres, cinema, spas, swimming pools, ice rinks, and lots more!

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!