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 prompt reads as given:
Wordless Wednesday: We all know a picture is worth a 1.000 words. Post/share a picture that relays a message or story to the reader.
My condition has not improved; at times it feels as if it is steadily getting worse and so as my condition has been significantly bad recently, it has meant that I have spent a lot of time in bed and watching television. I have particularly been enjoying spending time watching medical dramas – Saving Hope, Grey’s Anatomy, Emily Owens and M.D and notably Monday Mornings.
Although, I love these types of show, as a spoonie however, I do find them to be quite unrealistic. In one episode of ‘Saving Hope’ for example, one doctor immediately diagnosed a brain tumour (even before ordering an MRI!) in her patient after observing a symptom, although most common in this particular type of brain tumour but can also be indicative of other neurological conditions. Although many spoonies, go through endless hospital appointments and tests before receiving a definitive diagnosis, patients depicted on such medical dramas such as Grey’s Anatomy are quickly diagnosed and treated – if only the reality was that simple!!
But what if the condition is untreatable? My condition is one such illness that is sadly untreatable. Sure, I am prescribed several medications designed to control the symptoms that I experience; such as Gabapentin for the pain in my legs. Other symptoms however, there are no such medications to even control them, for example, the trembling in my legs. And although there are a lot of different medications to help control dizziness, unfortunately I have not found a successful tablet to control the dizziness or vertigo that I experience, especially since that one of the commonest side effects of many such medications is dizziness!
So, how should we cope with these untreatable conditions? Surrender and give up? No. We find ways that we can take control over our illness and its symptoms. My good friend Marissa over at Abledis.com who writes about creating our own daily prescriptions as a way of taking back control over our conditions and more importantly to combat the depression that is very often a result of living with a chronic illness.
It’s a simple yet effective tool to increasing the quality of life that often diminishes when chronic illness takes hold on your life…and best of all there are no unwanted or horrible side effects! It may also be a fun and unique way to not only make you take back control over life but also as a way of distracting yourself from the pain or other symptoms that medications does not seem to help.
So, what are some of the things that we can ‘prescribe’ ourselves to bring us comfort during relapses, or when we need to spend a lot of time in bed. Here are some examples of the little things that I ‘prescribe’ myself when my condition becomes too unbearable to cope with:
So, they don’t have to be big gestures or even something which is going to cost a lot of money. Give it a go!
Any other things that you would like to prescribe yourself more time for? What would you choose? As ever would love to hear your thoughts and suggestions. Comment below!
Welcome to the first post of the week-long carnival hosted by WEGO Health. This special writing carnival focuses on health activists who dedicate their time advocating for someone else.
Today for the first post I have decided to use one of the bonus prompts given. The reason for this is that today’s prompt asked to provide a descriptive portrait of the health community and to provide an image. However, as, I have mentioned before, the condition which I suffer from is an invisible, therefore, even I were to provide a descriptive portrait of the health community it wouldn’t shed light on the condition. In addition, as the condition is neurological in nature, it means that not every patient is the same, each unique and each exhibiting different symptoms.
The bonus prompt I have decided to use is entitled ‘From Inside the Fishbowl’ which asks:
People think that they know what your life is like – but appearances can be deceiving. Write a paragraph about what your life looks like from the outside looking in – then write a paragraph about what it’s actually like from inside.
So, if I and others like me in the wider health community were to be placed inside a fishbowl, seeing what my life looks like from the outside looking in they may come to the conclusion that my life was pretty great. Maybe they would conclude that there isn’t much wrong, I look ‘normal’, and am able to walk, talk, able to complete chores around the house.
However, as with all invisible chronic health conditions, the daily struggles and the symptoms with which I experience on a daily basis cannot be seen, they are invisible to the naked eye. If these were visible, people would be able to see the overwhelming fatigue that I often experience especially in the evenings, often needing to change into a comfortable pair of pyjamas before 7.00 p.m. The dizziness and imbalance that I constantly feel would be visible, the imbalance being characterised by the swaying back and forward that I experience when standing, legs visibly shaking also. It would also not be known that due to the spastic paraparesis that I suffer makes my legs feel incredibly stiff and weak, leading to the giving of way of legs, falls experienced on a regular basis.
If my life were visible inside a fishbowl, I hope people would understand how the condition in which I suffer has a negative impact upon all areas of my life, and how even though I may look fine, it is not often the case, instead feeling unwell the majority of the time – dizzy, my whole world moving and shifting. It would clearly be visible all the problems faced in terms of the mobility – the weakness in the legs, the trembling sensations that I feel, making them feel as if they are constantly shaking whenever I am standing. The tiredness I feel the majority of the time – the constant state of fatigue drowning me. Hope it just goes to show that appearances can be deceptive, and although a person may appear healthy and ‘normal; it may not necessarily be the case.