HAWMC 2013 Day 5: My Future Aspirations as a Health Activist

 

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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:

“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? 

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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….

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NHBPM Day Eleven: My Favourite Thing….

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…

A problem shared…

Welcome to another blog post from ‘My Brain Lesion and Me’!

This month, the folks at WEGO Health are concentrating on ‘Health Activism in Real Life’.  So, instead of the focus on being on online support groups or on those like me who blog regarding a particular health condition or cause the focus is instead on those organisations or even on specific people who use the more face-to-face approach to health activism.  This could include any of the following:

  • Non-Profit Organisations, i.e. charitable organisations
  • Support Groups
  • Meet-Ups with fellow patients
  • Awareness Events
  • Conferences focusing on health conditions or causes

So, I thought that I would share my thoughts and views on this topic and its role in providing support to those who are dealing with chronic illness or disabilities.  Now, I have found great comfort in online support regarding my own health condition and subsequent disability – the internet has made it possible for me to forge friendships and a strong support system with people who may not have the exact same condition as me, but who are nevertheless exhibiting similar symptoms that I face every day.  Without the internet, it would not have been possible to speak out about my condition, increasing the awareness of my condition and what it is like to live with through the 12-12-12 Project over at Abledis.com.

 

Without the technological advances that are available at our fingertips – the computer, smartphone, tablets and so forth I am afraid that I would probably live a very lonely existence indeed, stuck in the house constantly with only my parents and the dog for company.  So, the internet and the support networks available are such a godsend for thousands of people out there who are housebound or who are unable to get out as often due to their health condition, giving the ability to be able to connect with others and not feel so lonely.

 

However, this isn’t to say that there is no place for the offline, there are many non-profit organisations out there that are doing a fantastic job in providing and support for patients or service users, advocating them in times of problems and providing an ear for them when they are struggling.  I myself volunteer for a great non-profit organisation providing support for those living with mental health difficulties, called Mind and the support they provide for people and the others services that they provide.  Not only that but it provides a safe, comfortable environment for people to make new friends and talk about their problems and experiences without judgement or criticism.

 

There are times when I just wish that there was a support group out there for people like me, experiencing a similar condition to myself where I can get support, advice and make connections with others – but there just doesn’t seem that there are any organisations or non-profit charities that my particular health condition and situation really ‘fit’ into.  Even searching on the internet hasn’t helped!!  But have started going to a new group, although wouldn’t class it as a support group more of a group for ‘meeting-up’, learning about different topics and hopefully going on trips around the local area.  It as been great for me – enables me to get out of the house for a few hours (something I can’t do with online groups!) and chat and meet a wide range of different people, most of whom living with a chronic illness or disability.

 

So, I am starting to get the best of both worlds – using the online and offline resources for health activism and both definitely have their advantages and disadvantages but still both are equally valuable in providing patients, carers and other people involved within the health community to share personal stories, gain knowledge, connect with others…

So, which of these do you prefer – using the online for health resources and enjoying the privacy and anonymity it provides or do you prefer the more personal touch and connect with others face-to-face, enjoy getting to know others on more of a personal level?  Would love to hear your views on this topic!!….

One Voice…

Hello, readers new and old – hope you are all well.

Or much better than I have been lately anyway – it really hasn’t been a great time for me, with legs giving way much more, becoming weaker, even leaving me in bed for a whole day a couple of weekends ago.  Whenever I attempted to stand, my legs would just collapse from under me…

A lot of people, would think it would be great to spend a whole day in bed, not doing anything – no chores, nothing instead spending the day watching TV, films or listening to music.  However, let me tell you the reality of it – it is so boring being stuck in a bed, I would much rather be doing something much more constructive than watching endless episodes of CSI, despite it being one of my favourite shows.

On topic, I was recently reading an excellent blog post regarding a person’s experience of a condition in which she describes as having ‘many voices’ and in which the community of people with the same condition is large – each sharing their own personal experiences of living with a chronic illness.

And that got me thinking of my condition – long-standing brain stem lesion and spastic paraparesis.  To search information about it, is extremely difficult – most being medical journals, to difficult to understand for those without a medical degree!  And the big fact that I have not met one single other person with either diagnosis.

Many of the information that can be found regarding my condition are those usually found on websites about Multiple Sclerosis, as MS can present with brain stem lesions, and spasticity of which I suffer is a common complaint within the MS Community.

However, I do not have MS, so therefore am unable to really approach MS organisations for support and information.  Near to me is an organisation for people with brain injuries called Headway, however many of the case studies that I have read suggests that the organisation provides support and help for those with acquired brain injuries – usually those sustained in adulthood as a result of an accident or trauma.

So where do I turn for help and support with my condition? I feel as if I am one person, on my own living with this condition with nowhere to turn, or for people to listen and understand just exactly what I am living with day-to-day…

Image: http://www.bbc.co.uk/wales/audiencecouncil/sites/your-voice/

 

The role of support and health communities for people living with chronic and long-term conditions…

Hey Everyone

Sorry, I have not posted for a bit but I have been unwell as my Dad has kindly given me his cold – which has made me feel very unwell and extremely lethargic.

Today, I would like to discuss the role of support groups and other health communities out there for people, like myself who have chronic and long-term health conditions.  These online support groups and communities, for me, has been a god send – as I find myself feeling unwell all of the time, as well as having the dizziness 24/7 and 365 days a year and therefore unable to really leave the house on my own, a lot of my time is spent alone – leading to feelings of loneliness and isolation which can then lead to feelings of depression.

As a result a lot of my time is spent online where I am able to talk to others out there who, although might not have the exact same conditions as me, sometimes have similar symptoms or experiences as me.  Communities or ‘groups’ even exist on social media sites such as Facebook, where in fact I am a member of a several groups, some of which are for people living with chronic and disabling dizziness.  No one, so far whom I have met online, has the exact condition as me, however, this has not meant that I find them any the less useful, or not able to get support out of them – many of the people whom I have met have become great friends of mine, and can still relate to what I am going through in terms of the dizziness as they too are going through something similar.  One of the groups that I am a member of, even have Skype meetings, giving us the chance to actually talk to one another instead of constantly typing answers at each other!!

These sessions, are something which I look forward each month with great enthusiasm – it doesn’t just give me the chance to speak to others about what I am going through with the dizziness, and to gather information and support from these terrific women but also gives me the chance to have a laugh and a giggle with people other than my parents!  Don’t get me wrong, I love my parents dearly and they are a fantastic support, but it does get very isolating just speaking with them day in and day out.

I have also found another very useful too online – an online health community called PatientsLikeMe.  If you would like to know more after reading this then please find the link in the ‘Blogroll’ section.

Information regarding the community - how it works

PatientsLikeMe was founded in 2004, and provides patients with all kinds of conditions and is basically a health sharing website for people with a variety of conditions, hence ‘patients’.  Patients are able to enter data regarding their conditions – such as the condition itself, or even multiple conditions, symptoms associated with said condition or conditions and even the treatments that the patient has taken in the past as well as those treatments that are presently being taken.  In addition, every now and again, members are also asked to complete several questionnaires regarding their mood and quality of life as well as questions regarding symptoms experienced – by answering these simple questions members create helpful charts and timelines to enable users to watch the progression of their condition over time – using the site, members can also add their care team to their profile, to keep their doctors up to date with everything.  There is an even a tool called ‘instantme’ where in 140 characters or less are able to type in on how you feel that particular day – there are 5 options to choose from – ‘very good’, ‘good’, ‘neutral’. ‘bad’, or ‘very bad’ – and then all you have to type in is why you feel that way!  Simple!  Myself, I use the ‘instantme’ tool everyday, as I find it an invaluable tool to track the progression of my conditions and to see if there has been an improvement or deterioration in my symptoms.

Using the site you are also able to find patients just like you – well I haven’t, but that’s another story, but for conditions such as MS or Depression, there are many members with that particular condition, and can even search patients with the same symptoms as yourself, as well as searching for those with the same treatments, and even search for those within the same geographical location – or can even search for those using a combination of criteria.  And furthermore, using the tools such as the symptom or treatments reports you are able to learn and find out and see what others are experiencing – as well as being able to ask questions, share tips that you have picked up along the way and to support others using the forums – which they are many of as well as through a private messaging service.  Basically PatientsLikeMe is a great social media site, like Facebook for those with long-term health conditions!!  If anyone reading this has such a condition, I would more than recommend joining – even though I haven’t found anyone else with the same condition I am still finding it a very useful tool to track the progression of my health – and can even print out ‘doctors reports’ showing the severity of my symptoms and any information that I have entered to show them how I am doing.