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 is as follows:
Wordless Wednesday…We all know a picture paints a 1,000 words. Post/share a picture that relays a message or story to the viewer.
Image found on Pinterest
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 given:
Laughter is the best medicine…In honour of April Fool’s Day, is there something that always makes you laugh? A memory, favourite joke?
The old adage “Laughter is the best medicine…” may not be original and slightly banal; but after living with chronic illness for many years now, it is one that is undoubtedly true. On bad days, when you are feeling awful, and it seems as if there are storm clouds directly above your head, finding something that makes you laughs, just brightens the day and lifts the spirits.
My dog Honey makes me laugh constantly on the bad days; she is such a little character. Take the other day; whilst preparing the Sunday dinner, a few loose potatoes dropped onto the floor, and like the dog she is, Honey immediately picked one up from the floor, and as she is so stubborn would not leave go!! This led to Honey having the potato in her mouth for approximately 15 minutes, just wandering around and not wanting to let go! Here is a picture of her with the said potato:
After finally prising the potato from her mouth; Honey came back in with yet another potato in her mouth – clearly, we missed a potato on the floor, which did not go unnoticed by the dog!
It is these little antics, and the small things that she does everyday such as giving me kisses, or licking my feet that never fails in making me smile and laugh on even the worse days with my chronic condition. And it is these smiles and laughs which makes life worth living, even when the symptoms are so severe that it feels as if you cannot survive another day with them. So, on the bad days, even medicine cannot make one feel better, but laughter and finding things which make one smile really helps brighten the day despite living another day with chronic illness.
Living with a neurological can be difficult – at times, it can be bearable, with symptoms although always present, they are however manageable.
At other times, however, symptoms are out of control; life feels as if you are on a battlefield – your condition and its symptoms are at war with your brain and the rest of your body.
[Tweet “When symptoms are out of control, it can feel you are at war with your body”]
During recent times, my experience living with a neurological condition has been the latter – with symptoms becoming out of control, and everything being a struggle.
I think that what has been particularly tricky recently is because all the symptoms that I experience are out of control all at once. The dizziness has yet again been very severe, which has left me feeling incredibly nauseous a lot of the time. And not forgetting the severe trembling and pain in the legs, oh and not ignoring the terrible fatigue; hampered by episodes of insomnia.
Of course, it is not pleasant when even one symptom is out of control but is at least a lot more manageable dealing with one such symptom than several symptoms at once.
So, how do we cope when our conditions are out of control? How do we deal when we feel at war with your own body?
I have learned that often we need to hold on. Hold on until it passes.
As I would like to believe all bad times, whether it be because of a neurological condition, another chronic illness, bereavement or even a break-up, passes with time; just as clouds pass over to reveal bright, beautiful sunshine.
I choose to hold on to hope – the hope that it will pass.
[Tweet “I have learned that often we need to hold on. Hold on until it passes.”]
But just as much as we need to hold on – hold on to the hope that it will get better; those symptoms will improve given time, we also need to let go.
To let go of everything that we cannot change.
As much as I realise that we should let go of the worry and sadness of things we cannot control; I understand that it is often easier said than done. I admit that I find it difficult at times, and find myself getting upset with what I cannot do or find challenging as a result of the neurological condition. However, I try my best to keep the negative thoughts to a minimum and attempt to see the silver lining in the particular situation (e.g., not being able to get out of bed). I mean, who doesn’t love an excuse to have a PJ day and watch films all day?!) and accept that this is my reality.
[Tweet “We often need to accept the reality of our chronic illness and let go of things we cannot control.”]
There are certain aspects of my condition that I cannot control, such as the symptoms and the effects that these symptoms have on my life. I do have control, however, on how I choose to deal with the condition. It is not easy, however, especially when the symptoms are very severe. The way that I choose to deal with this illness is through my writing and sharing my experiences with others, volunteering for great causes, reading books, laughing and talking with friends, and watching my favourite films and television programmes. Those are some of the activities that I do to make me happy and help me forget that I am a person living with a neurological condition as well as distracting myself from the symptoms that haunt my life every day if even it is for a short time.
[Tweet “There are aspects of chronic illness that we cannot control, but we can control how we deal with it.”]
So, to help me cope with living with a neurological condition, I both hold on and let go! I hold onto the positives and let go of everything which I cannot control. How do you cope with the bad times and dealing with a life-long illness? How do you hold on or let go when life is difficult?
Remember, Alice in Wonderland when she fell down the rabbit hole and found herself in a different world? Well, recently that has felt like my life. Except, that instead of finding myself in a world filled with the Cheshire Cat, the White Rabbit and the Mad Hatter; I have instead found myself stuck in world of pain, dizziness, depression, falls and loss of feeling in legs.
No, recently it has not been a happy time, and one of the reasons why I haven’t updated the blog for a while. Writing in the midst of pain and depression has proved too difficult. I think, i have also not wanted to wrote about the tough times, as I often worry about sounding too negative and self-absorbed. However, a good friend recently reminded me that a blog about living with chronic illness should document the bad days as well as the more positive posts. To keep a blog is to be truthful and to be reflective of life; and life for everyone has its ups and downs, especially when you factor a chronic illness into the equation of life.
The depression crept up on me out of the blue. I suppose, it wasn’t a surprise that the depression has reappeared; it is only natural, when living with severe and debilitating symptoms for so long, And the symptoms that have been severe lately has not just been the older symptoms such as the dizziness and weakness in the legs, but the newer symptoms have also been problematic. Before now, I had only experienced short periods where I have lost all sensation in my legs. Recently, however the periods with no sensation in my legs, have become much longer; lasting all day even. For me, it feels so strange and unnerving to feel no sensation, and means that walking is much more difficult as you really need to concentrate and look to where my legs are – and walking become a lot slower than normal!
It was due to the loss of sensation which led to a very bad fall down the stairs, the other evening. Typical, that I has alone for the night when it happened, having no one around to help me. Luckily, the fall didn’t result in any broken bones or other significant injuries – just a lot of bruises and a cut on my leg. The only casualty from the fall, was my Kindle, which now is broken and in need of replacing. This really upset me, probably more than it would have, if not for the depression. As many of you know, I have a love of reading, and my Kindle was a lifeline for me on the days where I am unable to get out of bed as it allowed me access to books when I am unable to go to my book shelves.
However, as the loss of feeling in my legs ended; the feeling coming back, it only resulted in pain, and after the fall, pain like I have never experienced before.
The constant battles with the dizziness and depression; and the battle between pain and loss of sensation in my legs have really thrown me down the vortex and transforming the world that I thought I knew. But, life with chronic illness can be like that; symptoms disappear and replaced with new ones. It’s a world that keeps changing. But hopefully, perhaps one day I can fall down a vortex that leads to my very own Wonderland…
Winter is a miserable season for everybody. It’s cold, wet and the mornings are dark and depressing, and the dark descends upon us far too easily in the evenings. For those battling with chronic illness, it can be even more miserable; with the cold affecting pain and fatigue levels. And of course, Winter, and the darkness that comes with it, can cause Seasonal Affective Disorder; a type of depression that occurs during the Winter months and is thought to be linked to reduced exposure to sunlight.
For me, the Winter months, and particularly living here in the UK, affects the amount of pain I experience. I find that the very cold weather, which unfortunately we are prone to here. This year has been particularly bad, with a lot of rain and the bitter cold, which has resulted in me being in a lot of pain whilst out with my carer, especially when needing the wheelchair. In order to help with this I really believe in layers, and especially thermal trousers and a top to protect your body from the cold. As I experience bad pain due to my neurological condition, particularly in my legs, I therefore never leave the house without a pair of thermal trousers on to protect them from the cold, and to lessen the likelihood of experiencing severe pain. Also, as many people have told me throughout my life, it is much better to stay warm and remove layers than it is to have one very thick layer on. This is particularly helpful also, when shopping, as most stores become very warm, so is very helpful to be able to remove layers. This year, as the pain has been worse, I have also tried to spend time out of the wheelchair when out shopping; as moving about is important to keeping warm, and so thought perhaps using the wheelchair was exacerbating the level of pain and fatigue that I have been experiencing.
Also, another necessity for going out and about during the winter months is to keep your hands and feet warm, with thick socks, gloves, as well as ensuring to wear an appropriate winter coat, hat and scarf. Especially important when living with chronic illness
Of course, when suffering a chronic illness and living with it everyday, with symptoms constantly making themselves known, a lot of time is spent indoors. During the winter months, it can be a good thing when the weather outside is awful! I like nothing better when it is very cold than to wrap myself in a lovely thick blanket and curl up with a lovely hot mug of hot chocolate with a good book or even watch a film on Netflix or from my vast DVD collection. I think this can also be a good tactic when dealing with the winter blues – think of all the things that you are able to enjoy whilst inside the house, whilst protecting yourself from the cold and rain (and perhaps even snow!) and bask in the enjoyment of being able to appreciate the little things that you can enjoy, such as watching favourite films or TV programmes, or even get around to reading that book you have wanted to read for ages.
In order to alleviate the amount of pain and fatigue that I have been experiencing, I have decided to start moving more and start a new exercise regime! Exercise releases endorphins which helps to release those feel-good chemicals in the brain and so thought that it would help to alleviate the winter blues that can occur during this time of year. However, exercise for me is difficult due to my mobility problems, and which regular gyms are not suitable. Instead, I have found a gym that is perfect for those with chronic conditions such as mine as the machines are power assisted and so moves your body for you. It is even perfect for those without health problems as he machines can be used actively, whereby you can resist against the movements, giving an increased workout. Once a week, I am also taking part in some Pilates, and although I have yet to see any benefits regarding the pain or strength in my legs, I am feeling more positive and seen an increase in my energy levels! The Feel Good Factory certainly lives up to its name!
To find out more about the Feel Good Factory and the ShapeMaster equipment visit the website here
This post is for the February edition of the Patients for a Moment (PFAM) Blog Carnival which this month is being curated by Leslie of Getting Closer to Myself