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.
The first prompt reads as follows:
It’s often hard to like pictures of ourselves – post your favourite picture of yourself
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:
Patients, what advice or tips do you have caregivers out there – professional or otherwise!
To be a patient can be exceptionally difficult – it can be lonely, isolating and as a result we often rely a lot on our caregivers, specifically close family members. We rely on them for emotional support, often financial support, and also caregivers also asked to carry out all those tasks when we are incapacitated and unable to do so. It is very hard to give tips for caregivers, as the needs of individuals with chronic illnesses varies greatly depending on their condition and the severity that the symptoms affect them. However these are a few tips that I could give:
But perhaps most of all, it would be useful to give tips to doctors advice on how to care for those with chronic illness. So, many times I have read stories on blogs or forums regarding the poor treatment of them, lack of sympathy and understanding. It’s ridiculous, as to my knowledge medicine is supposed to be a ‘caring profession’. So, perhaps it is time that the chronically ill rise and tell doctors how we would like to be treated. If I could advise doctors on how to treat us, these would be my top few:
What advice would you give your doctor or caregiver? Please get in touch – as always would love to hear your thoughts!
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 your health condition (or the health condition of a loved one) was an animal, what would it be? Is it a real animal or make-believe?
If my health condition were an animal , I would compare it to the Okapi. A real animal that is closely related to the giraffe, and which resides in the Ituri Rainforest, in the northeast region of the Democratic Republic of the Congo. It is thought that there are only 10 to 20 thousand still living in the wild, and therefore the sight of one is rather rare since they are close to being endangered.
I have chosen the Okapi as a metaphorical representation of my condition, as like the Okapi, my condition is also rather unique and rare.
Often, with doctors when they hear symptoms, they often “think horses, not zebras.” Perhaps this is the reason for many misdiagnoses, and waiting, often for years for the correct diagnosis when dealing with rare or unusual conditions. Doctors assume the symptoms are the result of a more common illness or disorder; such as when people assume hoofbeats are caused by horses, and not zebras. Therefore, when considering an animal as a representation of my condition, it has to be one which is rare and unusual, and one in which others are not likely to consider.
Furthermore, as a result of my condition, the symptoms that I experience, such as the dizziness and vertigo, can also be found in many different conditions as well as my own. The Okapi, is very often said to reminisce with another animal also – the markings that it has, bares similar similarities to that of the zebra, and therefore often mistaken to related to it, although the Okapi is said to be closely related to the giraffe.
What would I name the animal? For this I would have to go for ‘Bambi’ – yes, I know Bambi is famously a deer, but with the weakness in my legs, and the problems with the balance, I do look like Bambi a lot of the time. Imagine in the film when Bambi is trying to get up and walk – that is very much like me when my legs are weak; often unable to support me, and so legs collapsing just like Bambi’s is a regular occurrence for me!
My own ‘Okapi’ then would be extremely clumsy and off-balance to represent the weakness in my limbs; and would sleep for hours on end because of extreme fatigue. However, the ‘Okapi’ would also show strength and stubbornness as like with everyone battling chronic illness both of these traits are needed to get through each and every day.
So, next time you hear hoofbeats, think of the Okapi and not horses!
If your condition was an animal, what animal would you choose? Have fun with it; and let me know! 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:
Say WHAT? What’s the most ridiculous thing you’ve heard about health or your condition? Where did you hear it and what did you think?
I once heard, a few years ago, by a doctor, that the dizziness I was experiencing was simply in my imagination and couldn’t possibly be experiencing it as I was far too young! Yes, dizziness is often discussed in relation as a symptoms often experienced later in life and sometimes referred to as “just another part of getting older.”
However, although dizziness is often seen in older adults, many of us, from experience, know that it can occur at any age, and can be as a result of a number of different factors. Dizziness can be as a result of a head injury, degenerative diseases and other physical ailments. And as I have read countless of times, during research, symptoms of dizziness are not normal at any age and are a sign that something is wrong, and therefore should be investigated.
Obviously been told this, and especially, someone in a position of power, like a doctor, and given that I was very young was distressing. Distressing to think that although the dizziness was severe and affecting me so badly, that no-one believed me. Telling me instead that it was all in my head also meant that the dizziness I was experiencing was not being investigated by doctors, and therefore further delayed me getting the correct diagnosis.
Obviously any symptoms that someone is experiencing which is out of the ordinary should be thoroughly investigated until all avenues have been exhausted, for peace of mind if anything.
What if the doctors that I visited took my dizziness more seriously? Perhaps then I would have gotten a diagnosis more quickly. Would it have made a difference in terms of treatment? Would the dizziness be less severe if I had interventions sooner? That I cannot answer but it would have meant that I wouldn’t have gone through so many years of believing that the dizziness was all in my head.
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.
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.
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