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:
Share something you learned from another Health Activist (that everyone should know!)
For this particular prompt; I didn’t just want to single out just one health activist because I have learnt so much from every health activist and blogger whom I have had the pleasure to come into contact with either through the blog itself or my Twitter account. Each of these amazing writers’ and health activists have so much knowledge to share to everyone. Obviously, the main advantage is that through reading others’ blogs, I have not just learnt their personal stories and whom they are as people, but have also gained a breadth of knowledge on a variety of different conditions.
However, by doing this and particularly after taking part in the ’12-12-12 Project’ over at Abledis.com and reading all the amazing stories of all the fantastic, and inspiring stories, it dawned on me how similar the experiences are for everyone who are chronically ill. Regardless of the diagnosis; there are common themes that seem to be universal for everyone battling chronic illness; examples of these include:
Loneliness
Fatigue
Pain
Sadness/depression
Frustration
Lack of understanding from GP’s
The same old responses by others’ such as “But you don’t look sick!”
Before starting on this blogging journey, I often felt lonely, isolated and down regarding my diagnosis and not finding anyone else with the same diagnosis. However, this is not the case anymore, as I found a large number of new friends; all with different conditions or disabilities. Despite that, however, I have found we still have so much in common regardless of our diagnoses, and the support and camaraderie have been amazing and have gotten me through all the bad days; and the times where I have been low. Christine Miserandino and the ‘Spoon Theory‘ is an excellent example, how a simple analogy can be used to describe the experiences of chronic illness for many – regardless of people’s diagnoses, the ‘Spoon Theory’ is one which everyone living with chronic illness can relate to.
So, if I was to share any advice to others who may have been recently diagnosed and are feeling low, and perhaps are lonely and isolated, then I would tell them don’t be – there are plenty of support online, on Facebook, or Twitter that can help regardless of gender, location, race, nationality or even diagnosis! Seek out all ‘spoonies’ and gain support from some amazing and caring individuals!
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:
Create a Pinterest board for your health focus. Pin 3 things. Share the image
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:
“I wish this gizmo could track my condition!” Write about which device, application, program, etc, you wish helped to track your health
I have an iPhone, and there are an overwhelmingly large number of applications available for the phone; many of them health related. There are applications to remind you to take medications; to track fitness and nutrition, as well as keeping a record of symptoms and possible triggers. There are also diaries and journals that you can download to the phone in order to take detailed notes of what is happening to one’s health. For example, on my iPhone I have the following applications to help not only track my health but also keeps me entertained through illness itself:
Facebook, Twitter, Pinterest, YouTube and Instagram – love these as it keeps my spirits up; entertains me as well as allowing me to keep in contact with all of my friends and be up-to-date with all the latest goings on.
WordPress – this is to keep up with my blog
Symple – this is a fantastic tool in order to track symptoms associated with your condition as well as all the factors that affect them. If one has started a new medication then it really is a great tool in order to see whether it has been effective in managing pain, for instance. Find out more about the application by visiting their website
Games such as 4 Pics 1 Word, The Chase, etc – purely for entertainment value and excellent at keeping my mind off my pain and keeps me occupied whilst at appointments
However, if I were to invent an application that could track my health condition; what features would it include? For starters, I would love a way to track the number of falls that I experience. During doctors’ and hospital appointments, I am always being asked how many times I have experienced falls in a given period, however, the truth is the number is so great that I lose count! Therefore, an app which record the times I fall would be extremely useful; even more so if it could be done with one press of a button.
I would also find use of an app, that could send an alert to someone whenever one occurs. This could be useful as a way of recording times when falls occur but also will be useful for getting help when a fall does occur, especially as I am often unable to get back up by myself. It may also be useful in gaining a little independence when out and about with my parents, or carer – I could go and have a look at what I wanted to by myself without needing someone constantly with me, but then if a fall did occur, they would be alerted and come and assist me when necessary.
Because of the recent attacks, I have been experiencing of complete vision loss, the doctors advised to keep a diary of when such attacks occur and to record the time that the attacks last for. However as my vision completely goes, I am unable to see the time, and therefore cannot record how long the attacks last for. I searched and searched for an app that could assist be in doing so without needing my vision; perhaps through voice assisted technology, however I was unable to do so. So, an application which could do just that for me, would really help in keeping track of this particular troublesome symptom. Even recording the times within the app, would also be useful, so I could instantly share it with doctors’ or consultants.
But most of all, the most helpful apps would have the option to be able to send all the data that has been collected could be sent to your doctor or hospital consultants and could then be added to your records. This would make it much easier than, for example, keeping a written record and then remembering to take them to appointments. Wouldn’t it be easier to be able to send data to our doctors between appointments so we can keep them up to date on our progress? Especially if new medications have been introduced to our treatment regimen. If doctors could keep-up-to-date by seeing data such as these between our appointments, and became concerned over deterioration in symptoms perhaps then they would be able to invite us for an appointment before a flare or relapse in our conditions occur. Wouldn’t that make it easier for both doctors and patients alike?
If you could invent an application to assist you in your daily struggles with chronic illness what features would you like to see? Share your thoughts and comment below!
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 about something ordinary that’s inspiring to you, something simple, perhaps overlooked, that fuels your activism
I am not sure whether it fuels my activism but sometimes inspiration comes from the smallest of tasks. In our house, I am the designated dishwasher! Of course, at times I am unable to complete the task because of illness, but most of the time I wash the dishes after breakfast, lunch and dinner. Often people, think of washing dishes they find it a chores; a mundane task that needs to be done.
However, I find it very relaxing, and when I am doing the dishes I find that it allows me to listen to my music, and think freely as I feel the warm water through my hands as I wash all the dishes. It allows me to look outside the window to our garden and look at the beautiful flowers that bloom there. Often, thoughts pop into my head as I stand there; I remember little details that I have forgotten about or interesting topics that I might discuss on the blog.
I can dream freely whilst standing at the sink; dreaming of a life without illness or all the little things that I want to achieve despite it.
Many see washing the dishes is a chore; however I see it more of a chance of relaxation; a chance at being inspired as well as allowing us to dream about all the possibilities that life has to offer!
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:
“The flower that blooms in adversity is the rarest and most beautiful of all” – Mulan. True or false? When do you bloom best?
I do believe the above quote is true – replace the flower with a person and put them through various life’s challenges; some despite the challenges will continue to persevere and flourish whereas as others will become bitter and wither. I would like to think that I am the former – that I am a flower that has bloomed despite the adversity that has befallen me.
Many of us battling chronic illness; whatever condition that might affect us; have instead of wallowing in self-pity and misery have instead turned illness into something positive by writing about our experiences with illness and spreading awareness to others. Going through illness is not easy – it is often exceptionally difficult,; symptoms overwhelming our bodies and mind. However, all those difficulties; all the difficulties that we face every day makes us stronger and determined. Determined that despite the illness, and the restrictions it places upon our lives, we will rise above them and live the life in the best way that we can. We appreciate all the good days so much more than perhaps healthy people, as often we rarely experience the good days.
Very often, being chronically ill, we are more sympathetic and emphatic of the struggles that others face. We are often more caring of others, and love nothing more than to support others’ facing similar adversities then our own. This is certainly what I have found since joining Twitter. If I am having a bad day, or facing some other difficulty, I am inundated with tweets of support from fellow ‘spoonies’ and other people whom I am honoured to call my friends. Often, we are more non-judgemental than most; especially considering invisible illnesses and disabilities, as we can appreciate that every person has their own struggles and inner demons, and are aware that although we may not be able to see all illnesses it doesn’t mean that they do not exist.
We bloom despite our personal adversities by all joining together; regardless of gender, race or even by diagnoses. We form communities and by supporting each other, and offer comfort when needed, we not only bloom and grow individually but also have the honour to see the entire plant, and group bloom also. We all bloom and soon an entire garden is filled with the most beautiful of flowers.
So, how does adversity affect my life? For starters, it often stops me from doing all that I want to do in life. Often, fatigue overwhelms me and as a result all I can do is lie on the sofa watching TV or a film. Adversity has touched my life, as dizziness and vertigo affects my daily life, in a completely negative way; because of these I find it difficult to go into shops that I may want to visit, or I became extremely unwell and nauseous within a blink of an eye and need to go to bed. The spastic paraparesis has adversely affected my life as I am not able to stand for very long; I lose sensation in the legs (and sometimes even my hands); often experience tremors in the legs and hands or very often they will just collapse from under me. A few years I never envisioned myself needing to use a wheelchair, however now I have one and will often need to use it. Chronic illness is like that though; like a snake it often creeps toward you, never noticing it is even there, until it bites you, and your life has instantly changed.
Personally, the adversity that the health condition has placed upon my life has affected me psychologically and socially – often I become down because of all the symptoms that I experience, and how often I am unable to complete tasks or go out. And it has also affected friendships; people do not understand the limitations that the condition has placed upon my life; and so friends have come and gone, often with no warning and some who never contact me, or invite me out with them.
When do I bloom best? I have to say this is a very hard question to answer! I am really not sure when I bloom best; often it just seems I am muddling along in life, and attempting to do my best to keep living despite battling with the condition in which I am afflicted. I recently found a love of the water; now with the support of a Personal Assistant, I am now able to go swimming, and I am loving it! I am pain-free, and if my legs do give way the water supports my body weight and they are able to give way with no injuries! I feel that I also bloom when I am determined and set my mind to something; for example, I recently managed to sit through a screening of Les Misèrables. Previously, I hadn’t been to the cinema in some years, as the cinema experience can trigger episodes of vertigo and nausea, however, as I really wanted to see the film in question I managed to push through all of the horrible feelings, and managed to see the whole film. I find often, that because of my condition and the places which can trigger them (such as high ceilings and open spaces), and as there are plenty, I have to push through the dizziness and vertigo a lot of the time, and when I do manage to do it successfully a real sense of accomplishment is felt and I bloom even more so!
Do you think the above statement is true? How does adversity affect you? When do you bloom best? Please share any comments below; I always love to hear from my readers so please get in contact….