Welcome to the final post of the WEGO Health ‘Advocating for Another’ Carnival! Hope you have all enjoyed the posts of this special week-long blog carnival. I welcome any comments that you may have and now you can also contact me via email, or even on Facebook, Twitter, Pinterest or even Google +
The last prompt of this carnival says:
Put a bow on our Advocating for Another week by sharing what you’ll plan to do going forward. Free write or choose one of the bonus ideas…
So, what next? Well, I am certainly going to continue with the blog – writing about life with this condition, problems and the truths behind living with an invisible illness and spreading awareness to others about the reality of invisible illnesses. I am hoping to continue my work by blogging for the Invisible Illness Awareness Week. And will take advantage of every opportunity to write that I can, from upcoming WEGO Health projects to the Invisible Illness Awareness Week – they all provide excellent opportunities to blog and spread awareness as well as providing brilliant inspiration on what to write. The prompts and ideas often challenge us as writers’, often making us better storytellers and writers.
Will also continue using social media along with the blog – Facebook and Twitter to connect with others and hopefully making new friends along the way!
And in my private life, I am hoping that the group I am involved with will continue to grow and thrive, and am looking forward to the new opportunities that will present itself as secretary of the group – we already have so many great plans for the group. Along with that I will also continue my work as a volunteer and now have been lined up as a potential tutor for courses as well as being asked to produce a newsletter for the Centre.
And all of this whilst trying hard to maintain my health and keeping as well as possible!
Welcome to the second post in the WEGO Health Blog Carnival. Today’s prompt says the following:
List time! Write 5-10 of your favourite things about your health community. Celebrate their uniqueness and be sure to tell us why those are your favourite things.
Today’s prompt asks us to reveal a few of our favourite things regarding our health community in a Sound of Music style!
What would be some of my favourite things regarding my health community as a whole?
Well number one would definitely be that I feel the community that I am a part of is that the people are much more understanding and less judgemental. Living with an invisible chronic illness makes you far more understanding of others and their circumstances, and less judgemental of certain behaviours or symptoms exhibited which healthy people may see as being odd. This is a really positive attribute not only for health activism but for life in general. And I believe that living with a chronic illness also teaches tolerance. Often people are suspicious and fear those who are different to themselves, those who are not congruent with the image that one holds of themselves. However, those who are chronically ill or disabled are brought together with an understanding of the difficulties experienced and which cannot be broken by those which more commonly divide – such as colour of skin, race, nationality, gender and so on. We are our own community, our own little family.
Another thing I love about the community is having to use time effectively – I used to procrastinate all of the time, always putting off chores until tomorrow. But now, as I never know how I will feel from a day-to-day basis I need to complete chores or tasks that need to be done when they arise, as I may not able to do them tomorrow. Also, comes in handy when I am able to go shopping – hated those days when Mum and I would spend endless hours trawling through different stores. This for me, and many others is now longer an option, so now am only able to go in and get what I need as quickly as possible, not wasting any time and not depleting my minimal energy. Then I have more time to spend on the things that I love (and able to complete without pain or fatigue) such as reading, writing, or simply watching my favourite feel-good film. Having time for ourselves is so important when living with a chronic health condition, important for our psychological well-being and great to do something that we enjoy during periods of remission or feeling well.
Another thing I love about my community is how everyone now embraces technology and social media. These new technologies and social media sites such as Twitter and Facebook, allows us all to stay connected with each other, posting comments of support through the bad times and send congratulatory messages during the good times. Many people assume the Internet is used for bad, and is a force for negativity and evil, such as ‘trolls’ sending messages of hate to others. However, the Internet can be used for good, it can be a positive form of communication. For me, and many others within the health community, going out of the home proves to be very difficult and so using the internet and the different social media that exists as well as support forums makes it possible for much-needed social interaction. And has an even more beneficial use if you take into account rare conditions such as mine, in real-life it may be very unlikely to meet anyone with the same condition but the Internet may make it possible to connect with the same condition. One group I participate in even uses Skype for group chats with members, which brings us all closer together and provides a more interactive experience.
The next point, I would say I love is being able to gain practical support from my health community. Often I find myself not knowing the best solution to a problem that I am experiencing; so asking others and brainstorming ways around the problem to find an effective solution which may even lead to more productive and independent life. And another great thing about being involved within the health community is the reciprocity – learning different tips and tricks on how to cope and overcome different obstacles and passing these onto others! Sharing information is so important in terms of health advocacy.
And the last thing what I love and think is great about my health condition – is that we are all unique and special in our own ways. Just like a snowflake, no two patients are alike and each exhibiting a different set of symptoms. Everyone is beautiful and special.
Hope you enjoyed the post – feel free to leave any comments….
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.
