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:
Word Cloud…Make a word cloud or tree with list of words that come to mind when you think about your blog, health, or interests. Use a thesaurus to make the branches of your “tree” extended further.
This is the Word Cloud that I have created. It contains words that are related to my condition, the challenges and problems that the condition has placed upon my life, and other words that relates to health and living with a chronic illness. It also contains words that have helped me through my darkest days living with a neurological condition – the social media platforms and the people that have supported me, the friends I have made along the way.
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:
Fitness Friday…What do you do to stay fit? Tell us about your efforts in maintaining a healthy lifestyle
Living with a chronic illness can often mean that you are not in control over a number of different aspects in your life. More often than that not, your life is controlled by the symptoms associated with your condition. For example, on the days where the weakness and trembling in my legs is very bad then I am unable to get out of bed because I can hardly stand or walk. Therefore, my life is being controlled by symptoms because my ability to do certain tasks is dependant on the severity of the trembling and weakness in my legs. However, an aspect of our lives that we do have control over is our personal fitness and general health. Taking part in regular exercise and eating healthy are things that are in our control.
It took me a long while, however, to find exercise that suited my abilities and symptoms due to my neurological condition. Due to the pain, weakness and trembling in the legs I am unable to take part in activities such as running, or going to the gym. Furthermore, my hand and eye coordination is also affected and therefore, I am not suited to be able to take part in sports which require good hand and eye coordination. In the past, I have tried pilates and yoga but as the balance problems associated with the neurological condition I live with, I eventually had to give it up due to the falls I was experiencing when taking part in these exercise regimes. There was also the Wii Fit, that my parents and I bought together for Christmas one year, but as the balance problems causes a swaying motion when standing, the Wii Fit board would no longer register me, as it would constantly tell me to stand still, which I was doing to the best of my ability!
Then the perfect solution found me whilst watching QVC on television (well, Mum had it on much to my dismay!). The special value item for that day was an AeroPilates machine. Aeropilates is a machine that incorporates basic Pilates movements whilst supporting the spine, joints and muscles of the body and uses resistance to strengthen muscles that are weak and lengthen muscles which are tight. The machine has a bed as all the exercises require either sitting or lying down. Therefore, this form of exercise is perfect for me as it is an exercise that I can still do even when my legs are weak as it requires either lying or sitting and in addition I do not have the worry of suffering a fall and injuring myself. Furthermore, this form of exercise also concentrates on areas that I need to work on to prevent further deterioration of symptoms as the resistance training is designed to strengthen and tighten muscles which are weak and tight, which mine are due to the spastic paraparesis. The machine can also be used as a rebounding machine by which the body moves back and forth thereby elevating your heart rate and providing an excellent cardiovascular workout. It is a great machine, especially for those with problems similar to mine. To find out more about this form of exercise, then watch this great video by Marjolein Brugman who developed the machine and form of exercise:
More recently, I have also started going to a place nearby to where I live called ‘The FeelGood Factory‘. This is not a conventional gym, but they instead provide power assisted toning equipment. These pieces of equipment (there are 12 pieces of equipment in total) facilitates both passive and active exercise and as a result can be used by anyone regardless of age, mobility, weight or fitness level. Furthermore, they are even suitable for those with medical conditions such as MS, fibromyalgia, ME and arthritis. The circuit of machines exercises all the major muscle groups in the body, and you can expect results whether you actively use the machines or allow the machines to work your body. To find more about this particular form of exercise then watch the film below:
http://www.youtube.com/watch?v=oLaS-HVyOJI
Not only does The FeelGood Factory provides a relaxing and safe workout but it is a lovely place to go with a lot of lovely and friendly faces and you are always guaranteed interesting conversations. I go approximately twice a week and me and my carer always look forward to going and seeing everyone we have had the pleasure of meeting there. If you suffer from a chronic illness and live near Llantrisant then I cannot recommend this enough and I have seen great results even after two months with various parts of my body feeling toned. It has also given me psychological benefits as I feel more relaxed, happy and even confident since I first started attending The FeelGood Factory.
There are other FeelGood Factories around the UK, to see if there is one near you then visit the Shapemaster website here.
In addition to exercising as regularly as possible, I of course take control over what goes in my body by maintaining a healthy and balanced diet, which is just as important as exercise for maintaining a healthy lifestyle. Of course, I still enjoy chocolate on occasion, but I do tend to avoid junk food and instead eat a balanced and sensible diet.
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:
Health Activist Choice Day 2!…Write about whatever you like
This past weekend saw the annual celebration of Easter. And it was also a long Bank Holiday Weekend. A lot of people revel in these long Bank Holiday weekends – it often means a long weekend off from work, and time spent with family. Many people even go away on these Bank Holiday weekends, perhaps visiting family or going on day trips with family and friends such as the beach if the weather permits. However, both my parents usually work on Bank Holidays, and therefore, this Bank Holiday I will once again be home alone. Friends and other members of the family all have their own lives and plans for such weekend and so don’t like to impose; or often I am in too much pain, or the weakness and trembling in the legs is so bad that I am unable to go out anyway.
Bank Holidays are a time where loneliness and isolation feels more evident when living with chronic illness
It can be so difficult when living with a chronic illness feeling isolated from the world. In addition, it hurts when you see or hear other people’s plans or stories for Bank Holiday weekends and you are once again stuck inside the house because of chronic illness. It is not only miserable to be stuck inside during the Spring and Summer Bank Holidays when the weather is beautiful and warm, but it is also incredibly miserable as there is never anything on television. The usual choices on television are films which you have already seen several times, repeats of old episodes of various television programmes and trashy reality shows.
It is on days like these that the blues can set in especially if symptoms are severe and persistent. So, the only thing to do is to make your own fun! But what some ideas of what you can do on such days when symptoms are bad and you need to make your own fun because of one reason or another? Here are some ideas that you can do on such days when energy levels are low but you also want some fun:
Movie Marathon: Think of your favourite actor or actress. Who is it? Sandra Bullock? Tom Cruise? Julia Roberts? Whoever it may be, consider having a movie marathon of all the films that they have starred in! Perhaps you haven’t got a favourite actor or actress; in this case you can watch films from your favourite movie genre. For example, I love romantic comedies – they are fun, girlie and more often than not have a sweet, happy ending. Perfect on days when you may be feeling blue. So, get the DVD player ready, grab the popcorn and settle down on the sofa for some feel-good entertainment
Pamper Yourself and give yourself some Love!: In my opinion, there is no better tonic when feeling low then to give yourself some well-deserved pampering! Especially when it has been a tough time dealing with chronic illness, and you have begun feeling blue. Have a lovely warm bubble bath using your favourite bath scent – for relaxing try lavender for example. Or paint your nails a wild and bright colour. I usually paint my nails a bright and colourful colour whenever I am feeling low; for some reason it cheers me up and puts a smile on my face no matter how bad I am feeling. I have had several bad falls recently so I also like to give my poor, bruised legs a pampering my applying soft and comforting body lotion. If you have some friends around for a night-in, you can even give yourselves facial masks whilst watching some films together – double the feel-good fun!
Take a Virtual Tour of a Museum: I know a lot of people love to visit a museum on Bank Holidays with their family or friends. I love history myself and I love visiting museums to learn of a different period of history. However, as energy is very often low due to chronic illness then walking around a crowded museum may be too much to handle. The solution? Take a virtual tour of a museum that you may have never been before. There are plenty of choices around; for example the British Museum offers a range of different virtual tours on a variety of different topics in history. Or if you are more interested in art then the Louvre has virtual tours on their website. Try searching ‘virtual tours’ and see what is available and find a virtual tour which suits your interests.
Get Creative!: In my experience of making cards, being creative whether it be making decopauge cards like myself, or painting, drawing or writing can be extremely cathartic and can also be good at distracting yourself from pain, boredom or feelings of depression that can often accompany being alone or unwell. So, whether you are an artist or a writer, try getting creative the next time you are bored, or suffering from severe symptoms. It’s cheap, and something you can even do from your bed if needed.
Enjoy your garden: When you are unable to get out of the house and enjoy a Bank Holiday at the seaside, for example, it does not mean you have to stay indoors feeling miserable. Try sitting out in your garden, enjoying the sunshine whilst reading a book or listening to your favourite music on an MP3 player. If stuck in bed, however, there are meditation exercises that involves you imagining that you are in a beautiful garden, beach or in your favourite place. Meditation or relaxation exercises are an effective tool against chronic pain, depression and anxiety. In my opinion, practicing such techniques are well-worth the time when living with chronic health problems.
Learn something new: This was suggested by someone I know via social media. I had no idea that the internet allows you the opportunity to enrol in free online courses! I think this is such a brilliant thing for anyone struggling with chronic illness or disability; as often because of our conditions we are unable to get out of the house. Many individuals with chronic health problems also do not work and as a result do not have the funds to access courses that charge and are often very expensive, however, there are a number of websites online that allow you to enrol on courses which are completely free! So, if as a result of your chronic illness you are stuck in the house a lot of the time on your own and find that you become bored, then this is a perfect opportunity to learn something you have always wanted to take up but have been unable to because of the lack of money or because you are unable to leave the house due to illness. It may also be a great opportunity to distract yourself from pain, fatigue and other symptoms that affect your life.
Read a book: This is usually the first activity that I go to when alone, bored and feeling unwell. Its cheap and does not require a lot of energy and thanks to my Kindle I have a number of books I have access too within easy reach. In my experience, when you are engrossed in a book that interests you, then time quickly passes.
So those are some of my tips to pass the time; distract yourself from boredom, pain and other severe symptoms. What other things that you can come up with to entertain yourself when alone in the house or just when you are too unwell to go out? As ever I would love to hear your suggestions and thoughts so please feel free to add any comments 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:
Hobbies…We at WEGO Health love hobbies. Tell us, what are YOUR hobbies? Are you a rock collector? Scrapbooking? Photography? Dancer? Share your talents. (Pictures encouraged!)
Battling fatigue, dizziness, trembling and weakness in the legs can make it extremely difficult to take part in hobbies. That it not to say I do not have any hobbies. One of my loves is reading; ever since I was a child I was a bookworm and loved reading fiction books that will transport me to different places and times. Or books just to escape from the reality of pain, dizziness and depression. The love of reading, fortunately has not left me and I am a proud owner of a large number of books. Those who know me, will already know that my favourite author is Jodi Picoult. I have at least two shelves in my bedroom dedicated just to her books. I love her writing style; the fact that each chapter is narrated by a different character enabling the reader to consider both sides of an argument and allowing the reader to determine their own opinions on the subject matter at hand. Each book is thought-provoking, deep and thoroughly researched. In my opinion, my love of reading, especially my recent devouring of novels are a result of the weakness and trembling in my legs. Due to the mobility problems that are a result of these particular symptoms mean that walking can be difficult, sometimes even I am unable to leave my bed because of them, and so it is in these moments that my love of books are a real blessing, as it a hobby that I can take part in bed or wherever I am stuck with my uncooperative legs.
Another hobby of mine is collecting butterflies. As a lot of my followers and readers of the blog will know that I am a big lover of butterflies. In my opinion, butterflies are beautiful; the bright and colourful colours of their wings, but also they are a sign of hope. The hope that something beautiful can come from the end of an old life. For someone with a chronic illness like myself, it really symbolises hope that despite being diagnosed with a long-term health condition it is not the end and something positive can still be found. This is beautifully summed up by the proverb “Just when the caterpillar thought the world was over, it became a butterfly”. I have a piece of artwork which encompasses this very proverb within the piece. It’s a lovely piece of artwork and I have near it my bed as a positive reminder that good things will still happen despite having a chronic illness.
In addition to the piece of artwork, butterflies can be found everywhere in my bedroom! A butterfly clip on my curtains, a photo frame adorned with them and even on my wallpaper! I have just recently bought some butterfly LED lights to hang around my headboard. The lights are pretty and colourful and make a bad day a little better. As a symbol of hope and change, in my opinion butterflies are a perfect addition to be included in my own personal and private sanctuary. A sanctuary in which I can recuperate on my bad days, and just get away from everything. It’s a room which I spend a lot of time, so to make it as lovely and positive as possible is in my opinion very important.
Another hobby of mine, which I have been unable to do for a while because of trembling in my hands is card making. I love making intricate decopauge cards. It not only is it fun but doing them takes my mind off my pain and the dizziness that greatly affects my daily life. Again it is something that I have found to do despite my condition and one which I am still able to do even when my legs are too weak that I cannot stand or walk. I am still able to drag to a table and chair and make cards despite the severe weakness and trembling. I like making them for friends and family for special occasions such as birthdays but I have also been asked to make them for others too. It is a lovely hobby to create something both beautiful and special. Here are some examples of the cards that I have made:
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:
Reflection…This is a day to reflect. For WEGO Health family, we reflect on those who lost loved ones in the Boston Marathon Bombing last year and hope for a bright future for those impacted. Reflect on your journey to this day, what are your thoughts and hopes for the future
I am writing this post whilst lying in bed. It’s yet another bad day thanks to the neurological condition that I live with; it’s another day in which my legs are incredibly weak, and the trembling in them is severe that I am unable to walk far and so I am confined to my bed. It’s days like this which we are able to reflect – to reflect on the past, present as well as what might have been and dream of a brighter future despite illness.
I was a typical girly girl when I was a child. I loved the fairy tales and the idea of a happily ever after. That’s what I thought would happen when I grew up – that I would meet my own prince, get married and then live happily ever after. I had a very naive and child-like view of the world, and suppose my parents shielded me from the horrors and sadness that can very often exist in the world. Never did I imagine that I would live a life, like the one I am stuck in, I suppose that no one imagines a life with a neurological condition or any chronic illness. But that was the hand that I was dealt.
I obviously grew up, and developed enough self-esteem to realise that my happiness was not dependant on some hypothetical Prince Charming to sweep me off my feet. Instead, I dreamt of going to university in order to establish a career for myself. I eventually decided to study Psychology with the aim of finding work to help other people in need of support and understanding.
However, this particular dream was not to be, and instead of graduating with honours from University and entering the world of employment or even further study, my symptoms became worse. As an alternative to attending job interviews, my life became all about attending doctors’ and hospital appointments, to attempt to find the cause of my worsening symptoms. It was to be a long and difficult journey on the road to diagnosis; for example gaining the original referral to see a neurological consultant was a battle as the GP was adamant that my symptoms could be explained by the anxiety disorder I had originally been diagnosed with. That and long waiting lists to see consultants and for tests to be conducted.
Now, I have a definitive diagnosis. It might not be what I wanted or expected and the knowledge that the condition was a life-long one was both a shock and a disappointment – knowing that the symptoms may get progressively worse, and the knowledge that the symptoms may prevent from me from ever being to work. Yes, the journey has been difficult and the symptoms have become worse but on reflection I have learnt that despite being diagnosed with an untreatable and long-term neurological condition does not mean the end of my life. Life indeed does go on, and despite not being able to work I have discovered that I can still have a purpose in life and help others. I am involved with a new community for those affected by neurological conditions called Neuro Nula and am excited by not only the work that I have already done for them, but for the work in the future; to develop the website further and to help others who are facing similar situations that I once faced after being diagnosed. To make someone realise that they are not alone like I once felt.
On reflection I have also learnt that despite living with a neurological condition does not mean that I cannot accomplish everything that I dreamt of as a child. The journey towards those dreams may look different and may also take longer but they are still achievable. This is summed up brilliantly by a quote that I came across on Twitter:
