Welcome to the first day of April, which means just one thing – the beginning of the WEGO Health, Health Activist Writer’s Month Challenge 2015! Again I will be participating in this writing challenge for those living with and advocating for those with chronic health conditions based upon given prompts.
Wednesday April 1st: Wordless Wednesday
Since this is the start of HAWMC, post a picture that shows how excited you are for the next 30 days. We always love a good Health Activist selfie!
Regular readers of my blog, and especially those who follow me on social media will know that life recently has been very tough due to the symptoms that are caused by the neurological condition that I am now forced to live with. The symptoms associated with my neurological condition such as dizziness, fatigue, pain as well as the severe weakness and trembling in the legs have all deteriorated. And as a result of this deterioration, it has resulted in the loss in the ability to do a lot of the things that once came so easily, or those activities that I enjoy participating in. One example, is the great difficulties that I have experienced in visiting our local high street. Before this sudden deterioration, I found it so easy to be able to park in the town’s car park and walk the moderate distance towards the top end of the town to visit the shops that I like to browse and buy everything that I need. However, recently due to the deterioration in the symptoms in my legs (the pain, trembling and weakness) even the short walk from the car park to the shops have felt more like the prospect of walking Mount Everest.
As a result, my carer has instead had to use the disabled parking bays in the town centre itself, so that I am able to use the amenities that I need to use, and still be able to go to the shops that I like to visit. This arrangement has been far easier as they are extremely close to all the shops that I regularly shop at, but in all honesty, some days it is still a struggle to go shopping because of the severe weakness and trembling in the legs. The dizziness, has also caused a very big obstacle in going out because it has become so intense, and has resulted in me having to wear a hat when visiting places (wearing a hat helps to limit the exposure to triggers that can cause vertigo, double vision or make the dizziness worse).
Last week was a particularly bad week, and a trip to town was cancelled after my legs almost gave way in the middle of town. Instead, because the pain and weakness was so bad, my carer and I returned to the house and watched a film. It is bad mornings with chronic illness like these which can be difficult for our morale and self-confidence; and very often it can feel that our day is already over thanks to chronic illness, unable to accomplish anything because of debilitating symptoms and so instead we find ourselves spending the rest of a ‘bad day’ spent in bed or lying on the sofa watching a marathon of our favourite TV series (my guilty pleasure of the moment is One Tree Hill).
However, I recently learnt that it does not have to be this way. I found a blog post that read:
Today is not over yet.
And it is true. At the time, I wrote off the day that my legs decided not to work properly and had to spend the morning watching a DVD instead of the shopping trip I had planned. But that was not the end of the day. After the film, and after I regained enough strength in my legs, my carer and I took a short drive to a nearby coffee shop and had lunch. It actually turned out to be a lovely trip out and exactly what I needed to take care of myself and my body against the effects that my condition has had on my life. And perhaps ‘Today is not over yet’ is a mantra that we spoonies need to remember. Just because a day has started off bad because of the effects of chronic illness does not mean the day will be bad. It does not even mean that the day is over.
We can find joy in the little things on the bad days – a letter or card from a dear friend landing on the doorstep, a cuddle from a furry friend, a favourite song on the radio, someone making our favourite meal. Our silver linings can come from the smallest of things.
So, our chronic illness may have meant that we have frittered away our time doing as little as possible, however as the quote suggests it does not mean that our day is over. We are still here and we are still very much alive and as long as we are it is not to late to do something, to do anything. It can provide the perfect opportunity to pursue some self-care practices in order to take care of not just our physical health but also our psychological health. A few self-care activities may include:
Even if you do end up doing something, it may be something that we hadn’t planned on doing or even wanted to do. However, it might just end up being something we needed or better than originally planned. Just like my impromptu visit to a local coffee shop.
So next time, you have had a bad start (or at any point of the day, really) to the day and your thought is navigating towards writing the entire day off as a bad one, just remember:
Today is not over yet.
Well, today marks the start of a brand new start month.
The start of something new – whether it be a new day, month or year.
It is like a fresh, white piece of paper, in which the past and everything that has come before forgotten, and instead, we are allowed to start afresh.
To start our story anew.
It opens up new possibilities and opportunities and allows us the hope for a better today and tomorrow (and beyond).
And this is most important when living with a long-term health condition. To live with illness every day is most difficult, and perhaps one of the most challenging aspects of living with a chronic an excellent is the unpredictability of it and the unknown of what each new day will bring.
Even with every little sign of illness such as a headache, for example, brings the fear of the start of new symptoms or even the possibility of a deterioration in our illness narrative. Therefore, hope is a vital thread for us to hold onto as it allows the possibility of a life without chronic illness and our lives dictated to by our symptoms.
During the recent weeks since my last blog post, I have been trying to remember these points.
As much as I have been trying to remain positive and to hold onto the invisible thread of ‘hope,’ I, however, have been living with the storm clouds above my head.
Just before the beginning of 2015, I had the hope that this will be a really good year. Don’t get me wrong; I do not have the irrational belief that I would miraculously improve during the coming year. As I had a few good weeks before Christmas, I did have the hope however that it would be the year that my symptoms would not deteriorate and I would not experience another decline in the severity of my symptoms.
It would seem that this particular thread of hope has unravelled.
In fact, these past few weeks has been the hardest weeks that I have experienced concerning my illness for a long time. It often feels that my body is taken a severe battering from all of my symptoms.
The dizziness has been so severe, that even doing the simplest things extremely difficult. The trembling and weakness in the legs have also been very relentless; my legs are feeling extremely jelly-like, that recently I have lost all confidence in being able to visit our local town centre and walking around the shops. Using my wheelchair is one option, however, due to the severe dizziness and the constant perceived motion that I am experiencing, it would make me feel even more nauseous.
Everyday of late has felt like an uphill battle from the moment I get up out of bed until I go to bed later that day. Because of the severity of the dizziness, nausea, weakness as well as the increased levels in fatigue, has meant that I often just want to go to bed and burrow myself under my covers and stay there for the foreseeable future. However, I have not given into my longings and have been pushing myself to still going out, although am finding my trips out have been considerably shorter than previous months.
During my last post, I discussed the feelings of loneliness and isolation that can often accompany chronic illness, and during this recent battle, these feelings have unfortunately only increased.
Perhaps one of the main reasons is not letting anyone in my close circle of friends and family know just how bad things have gotten. Of those who are in my tight circle of confidants, I have tried reaching out, not getting an immediate response when I actually in need of someone. It has often only increased the feelings of depression. Often thoughts of whether I’m liked within my circle friends usually follow, stupid I know but perhaps illustrates how difficult things have gotten recently.
I am trying to think of some ways to widen my social life, and perhaps make way for new friends, maybe even considering the social network Meet Up.
Or setting up a group for those like me who are living with a chronic illness or disability and who are also socially isolated because of it, just a thought in progress at this stage but would love to hear your thoughts and whether anyone has had any success with the site.
At the moment I am dealing with dark storm clouds but still, have hope for the appearance of a bright and beautiful rainbow in the hopefully not so distant future…
When living with a chronic illness, any chronic illness there are of course many symptoms that we are forced to live with as a consequence. Both physical and psychological effects of living with a long-term health condition such as the neurological condition that I live with everyday. Perhaps one of the most significant and common psychological repercussions of living with a chronic illness, which is not always discussed is loneliness.
Loneliness is often discussed in relation to the elderly. It is often seen as a consequence of getting older. However, loneliness is a feeling that can strike at any age and whatever the personal circumstances of the individual concerned. In my personal experience, through personal experience and with engaging with those within the chronic illness and the ‘spoonie’ community, loneliness can also be very much evident when living with chronic illness. Not only is loneliness is felt in terms of living with a chronic illness itself, in the feeling that no else understands what it is like with living with such an illness. However, loneliness can also manifest itself in the physical sense – the lack of company. One often consequence of being diagnosed with a chronic illness, is that friends can disappear from our lives. Many cannot handle seeing a friend being in pain, or cannot understand when plans are often cancelled due to the onset of debilitating symptoms. Living with chronic illness can often result in many hours spent alone in our homes. Hours spent lying in bed or on a comfortable sofa. Hours spent binge-watching boxsets, often because a lack of other options and to fill the deafening silence that surrounds us.
Being alone is something that I routinely have to deal with as my parents are often working and have few friends living nearby that have the time to visit and keep me company on those days in which my symptoms are particularly bad. It was on New Year’s Eve and New Year’s Day this year however, the feeling of loneliness and isolation was particularly evident. Like previous years, I celebrated the start of New Year alone, whilst my parents were sleeping upstairs (both were unfortunately started work early the next day) and as I had no contact with anybody and no-one had bothered to phone or text me to wish me a Happy New Year the feelings of loneliness were exacerbated. I felt jealous whilst watching the live New Year celebrations on television and seeing those people who were friends and family for the night meant for celebration, whilst I was sat on my own. The first day of a brand new year also started on my own in an empty house with only a dog whose only interest was sleeping. As cards drove onto our street and emptied with the arrival of visitors to other houses in my street, I felt even more alone and felt incredibly low.
It’s frustrating living with a neurological condition like mine. Due to the symptoms which are particularly debilitating such as the dizziness and weakness in the legs (which are unpredictable and it’s not known when they may give way), I am not able to get out of the house alone. Therefore, as a result it makes it even more difficult to be able to go out and make new friends. It’s as if my neurological condition has torn down bridges between myself and the life that I want to lead, and instead has built a wall around me, trapping and confining me.
It is of course, easy to make online friends or even penpals which I have been trying as a way to quench my thirst for human interaction and companionship. These are great substitutes and an easy way to make new friends, but I still crave face-to-face interaction with someone around my own age over a cup of hot chocolate. Isn’t that we all want in life? Plenty of friends that we can count on during the good and bad times in our lives? How to achieve that when living with an illness that prevents you from leaving the house unaided is still a huge question that remains.
Although that I hope to gain new friends during the coming year, and hoping that I will have people to celebrate the start of 2016 with…
Well, here we are – New Year’s Eve. A time where we reflect on the past year that has just gone whilst looking forward to the new incoming year and all the possibilities that it could bring.
This time of year always seems significant as it offers hope and endless possibilities. It tells us that although our year has been full of highs and lows, it allows us to celebrate the fact that we have survived another year. It feels that we are on the precipice of change. It’s funny though really isn’t it? I mean as significant and exciting it is that we end one year and at the beginning of another, it really is just another day on our calendar. And although we often feel that the new year brings about change and new possibilities; nothing really changes (apart from the hanging of a new calendar on our walls).
The days after Christmas allows us to sit down and contemplate the year that has passed. To celebrate the triumphs of our years and to dwell on the things that didn’t go well or those which we weren’t expecting. It is a time to reflect on everything that has happened and to make plans for the new year (for me this includes a trip to Bath and another cruise!). We mark the occasion by making New Year’s Resolutions; a list of things that we hope to change or what we want to achieve during the next 365 days. Social Media sites such as Twitter and Facebook, even join in these celebrations by creating a review of everything we have contributed to our timelines.
I remember an old tradition that my Mum told me, and one which my great-grandmother used to do every year – this old tradition saw people opening their front and back doors as a way of letting out the old year and to bring in the new. A beautiful tradition that offers everything that the new year is all about – the celebration of the old, and looking forward to the future.
But however exciting and wonderous the prospect of a new year brings, it is not always the case when living with a chronic illness.
Although the new year offers celebration of getting through a year living with debilitating symptoms, endless hospital appointments and many days lying in bed, it can also be a time of great anxiety.
As many look forward to the new year and everything that it could possibly offer, we spoonies wonder what the next year will bring. What questions will be answered with upcoming hospital appointments? Whether new symptoms will present themselves? If there will be a deterioration in our health within the next 365 days. Yes, we contemplate everything non-health related too, but when living with chronic illness everyday, it is hard not to first think about our long-term health conditions when it is such a time to reflect and contemplate the end of one year, and the prospect of the start of a new one.
Personally, for me although this past year has seen many changes in terms of my own neurological condition; most of which are not for the good with the deterioration of many of my symptoms, there were however many highlights and positives that have happened during 2014, including:
Those were just some of the positive experiences that has made up my year during 2014. And hoping that there are many more during 2015!!
I hope that when you are sitting and contemplating your year during the last 365 days there are many good points to take away. And what’s more, I sincerely hope each and every one of you reading this has an amazing New Year’s Eve and that 2015 is a magical and wonderful year for you!
Cheers!!
