social networks Archives

This post is for the ‘Patients for a Moment Blog Carnival’ hosted by Leslie at ‘Getting Closer to Myself‘.

This month’s theme is Social Media and illness, with which there are two parts! The first part is to describe our illness using just 140 characters; just as if we were using Twitter to do so. This could just be one statement characterising the illness experience, or a series of statements of 140 characters.

The second part of the challenge asks us to describe how social media has personally impacted our illness experience.

So, how can I describe my condition just using 140 characters? Well, this could be extremely challenging giving the complexity and the unrecognised nature of my illness. But here it goes…

Neurological condition affecting the brainstem. The effects include constant dizziness, vertigo and spastic paraparesis affecting the legs

The first part is self-explanatory, obviously the illness that I live with is a result of a neurological condition, known as a long-standing brain-stem lesion. The lesion is scarring of the brainstem, possibly as a result of a head injury of birth, although as it was diagnosed years later, the exact cause of the lesion is unknown. The effects that I listed are the main symptoms that I experience as a result of the neurological condition. As the statement suggests this include the constant dizziness (feeling as if my world is unbalanced), vertigo (as if the world around me is spinning). The spastic paraparesis is another symptoms that is troublesome to my daily life. It affects primarily the legs as suggested by the above statement. It causes stiffness and weakness of the legs which makes it uncomfortable and at times very difficult to walk. Often due to the weakness, it can cause my legs to suddenly give way from under me. Recently, I have been battling severe trembling in the legs, a jelly-like feeling in my legs, which above all is extremely uncomfortable and leaves me unable to stand for long. Of course, there are other symptoms that I experience such as nausea, neuropathic pain and fatigue.

Are you able to describe your condition in 140 characters? Give it a try!

To the second part, then! How has social media impacted my illness experience? For starters, the impact upon my illness experience is mainly positive. Social media, not only allows patients to connect with others and share their stories and experiences, it also allows patients to raise awareness of their particular chronic illness, and share with others what it is like to live with illness every day, and everything that goes with it, for example, I often tweet via Twitter on how I am feeling, and attempt to write how the symptoms affect me and what it is like to live with them. Not only is social media fantastic and advocating and raising awareness of illness, but it is great to connect with others, particularly when we are experiencing a flare or relapse, and gain support from other patients in similar circumstances. It provides camaraderie for those experiencing chronic illness, like myself.

Think about when you are ill in bed, it often involves being stuck in bed, alone whilst everyone else is busy living their lives. Asa result, it often leaves you feel lonely and isolated, right? Think if illness was a regular part of your life; being stuck in bed, lonely in your bedroom with no company was a regular part of your routine. That feeling of loneliness and isolation is also a regular part of your life, however Twitter and other forms of social media, provides patients with chronic illness a perfect tonic, as it allows to converse with other people even when in bed via new technologies such as smartphones and tablets.

It provides entertainment and diversion from illness. Often, when I am bed bound due to the extreme weakness in my legs, or due to severe dizziness, I am very grateful for the supportive messages that I receive on Twitter from other chronically ill patients and friends; they really brighten the day, and also reminds me that I am not alone on the journey through illness. Social media provides real-life perspectives on illness, and besides the entertainment and social aspects, perhaps the most valuable features of such sites is it’s a place free from judgement and stimatisation that many experience in the real-world, as well as educating others about particular medical conditions in order to tackle the problem of stigma .

Another day, and that means a brand new post as part of the WEGO Health ‘National Health Blog Post Month’. Today, is a diversion from discussing life with a chronic illness and health, as the prompt that I have chosen (as we get a choice between 2 prompts) asks us to discuss our favourite thing that is not health related nut likely improves our life.

For me, my favourite thing, and one which improves my life is my brand new iMac. It really has become the centre of my universe, and one which I spend the majority of my time! Although, admittedly many of the reasons are health-related!! 😉

I am sure those of you reading this and who are too suffering from a chronic illness or disability will ne able to relate – when one is sick, the computer, whatever the make and model, becomes a real lifeline. I know there are a lot of people, many of those who are completely healthy that also claim that their computer is their ‘lifeline’, but in my opinion it is more true for us who are crippled by illness, often we are unable to go out and instead stuck indoors, often alone and without company.

In this instance, my computer has really become the centre of my social life! Not being able to go out, particularly alone, has meant that through my computer and the internet, on social networks such as Facebook, Twitter, as well as Skype I am able to keep in touch with friends and family. The computer and internet, also allows me to write this blog, as well as finding any pieces of information regarding my condition – any tidbits of information that I can gather to not only to learn everything there is to know (which isn’t a lot!! – pitfalls of living with a rare condition) but to also find anyways that I can help myself to get stronger, or any treatments that may help control the symptoms that I experience.

And then there are the opportunities to connect with others with similar difficulties that I face, the opportunity to join and explore different support groups; to connect with others, whom although might not have the exact condition as myself, but know exactly the difficulties I face, and can relate. This is support really is invaluable source, as it enables you to talk to others who are going through similar experiences whom you can vent to, from others who understand and can give you great advice when you really need it.

Finally, as I am not able to go out that much, or if I do, am often unable to spend a lot of time out, so the computer and my internet connection allow me to browse all my favourite stores and brands. If I need something, or need some new clothes, I can shop in the comfort of my own hom; without the worry of the possibility that my legs may give way, or struggling with the dizziness. I don;t have to carry heavy bags around, that cause the discomfort in my arms; I can safely buy what I need (or want!) and can have it sent directly to my home. This is one aspect where my computer really makes my life much easier!

Not only my iMac is great for going on the Internet and connecting with others, but on those bad days; the ones where I am stuck in bed as my legs are so weak that I can hardly stand, the computer can transform itself into an entertainment centre!! Recently, I purchased software for my iMac; software which has the ability to turn on my computer into a TV!! Thanks to a USB dongle, I am able to receive Freeview channels, and also have the ability to record programmes that I wish to watch. And there is good all iTunes!! I have quite a few series saved onto the hardrive that I have downloaded direct iTunes – so I also have the option to watch one of these when I am stuck in my bed. Of course, there is always the DVD player; to play the endless number of films and television boxsets that I own. All these are great for keeping me entertained whilst unwell; often feel that when I watch these I have company and don’t feel so alone.

So, these are the reasons for my iMac being my favourite thing that I own and although not health-related makes my life easier and probably happier for it!

What is the one item that you own, which is your favourite, and why? Would love to hear you stories…