I love writing, and am always looking for new opportunities to share my writing, other than my blog. Therefore, I was excited when I heard about a new digital magazine which is aimed for young people suffering with chronic illness to make living with such conditions, not only suck less but help to maintain a positive attitude through the battle of illness. So, when I read that the editor and creator of the magazine, Lizzy was looking for submissions, I dug out one of my many notebooks and began writing and editing a piece that I could submit to the magazine. And now, I am happy to announce that the magazine has been published and is ready for you all to read. I have had an in-depth look at the magazine and I can tell you that it is a fantastic one for anyone battling chronic illness to read. It is not only beautifully designed, but is filled with amazing photography and inspiring stories from other young women. To show your support, and help living with chronic illness suck less than you can buy the magazine here
P.S: If you have read the magazine and my article, would love to hear your thoughts and comments about it!
Yesterday, thanks to the wonders of WordPress, I discovered that it was my second anniversary of my very first blog post entitled ‘An introduction…‘. After discovering that it was the second anniversary of the start of this blog I contemplated the changes that have happened since the publication of the first post of the blog. Two years have passed and have now published approximately 225 blog posts since then as well as becoming active on social media, and also becoming involved in projects relating to chronic illness and neurological conditions. However, on the discovery on my blogiversary it made me consider the past and the changes have occurred since the beginning of writing this blog.
Some of the changes have been good; such as the introduction of a couple of social groups that I now regularly attend; the discovery of a passion for card-making as well as the addition of a personal assistant in my life, which has greatly benefited myself as well as becoming less reliant on my parents.
However, there are also a number of changes that are not so good. In looking over past blog posts, it made me realise how bad my condition has become. I suppose, living with illness over a long period, you are not so aware of the changes until you contemplate the past and the reality of your condition as it was then; this could be in the form of looking at past photographs, or re-reading old blog posts or journal entries. It is no secret, that I have been battling with dizziness since a young child, and although the dizziness was severe two years ago, it really has become so much worse since the start of the blog.
The problems with my legs has also worsened significantly worse since the beginning of ‘My Brain Lesion and Me‘. At the start of this blogging journey, I had little problems with my legs; although they have always been stiff and had experience discomfort when walking, my mobility was not really affected. Fast forward two years on, however, and my mobility has significantly worsened, progressing from needing to use a walking stick, to a crutch and now needing to use a wheelchair. And these two years has also seen the introduction of severe trembling in the legs, constant pain and now I have even been experiencing episodes of loss of sensation in them.
However, I am unable to change the past or the present of living with my condition, and it looks like I may have little control on the future. I am hoping for more information at the end of the month after several more hospital appointments, although I trying not to raise my hopes too high, in case of disappointment. For now, I will just have to live in the present and attempt to keep positive; to keep writing about my experiences of living with a neurological condition and to live the best life that I possibly can…
Now the Christmas and New Year celebrations are upon us; it also allows us the opportunity to reflect on the year that is nearly at an end, and to also look forward to the year ahead.
This time of year, allows us to not only reflect on the difficulties and struggles that have occurred due to chronic illness, but we can also reflect on what the year has brought us and express gratitude for the positive moments or for the people who have supported us and made life with chronic illness a little easier.
Every person; whatever their situation and whatever struggles they live with, every year brings many ups and downs. And living with chronic illness brings more downs than ups, but still we are able to find gratitude in all the positives that happen during the year. An example, of such a positive thing that has happened to me during 2013 is finding such a strong support network, especially on social networks such as Twitter. This year has seen me find many special and caring friends that make living with my neurological condition a little easier – they pick me up when I am down or struggling, and send me messages of congratulations on the successes. This year, through all the bad times, I am grateful for friends such as Anya and Aisha for all of their friendship and support, and of course all of the other wonderful spoonies who have messaged me support throughout the year, for which there are many – thank you!
Again, this year has also seen me gain another nomination for a WEGO Health Award; so for the bottom of my heart I would like to thank the person who nominated me for the award – I am truly honoured.
I also have to be so thankful for everyone who has taken the time to read, liked, shared and commented on my many blog posts throughout the year. I have shared much of my life and experiences of living with a neurological condition, and so I am grateful for everyone who takes the time to read, and perhaps even take something out of it, such as a little more compassion or understanding of those living with chronic conditions. During the coming year, however I would like to connect with even more people living with and experiencing chronic illness, so please feel free to get in touch whether it be by email, Facebook or Twitter and share your story and experiences.
There were however, many downs also. The symptoms that I experience such as the dizziness, trembling in the legs and the pain have all increased and worsened exponentially compared to when they first started. In addition, the days where I am unable to get out of bed because of the weakness, pain or dizziness (sometimes all of the above!) have also increased. This year has also seen the increased use of my wheelchair; last year, I only used the wheelchair on very rare occasions. However, as the symptoms have become worse, with the trembling and weakness in the legs becoming such a problem, that the wheelchair is used at least once a week if out for long periods such as the days out with my carer, going to the social group that I attend and hospital appointments, and so on. In addition, with all the dips that have occurred, depression, have also reared its ugly head at times making the journey through chronic illness even harder.
Me in my wheelchair that is now a regular part of my life this year
But now, as the year is drawing to a close, it is time to start looking forward and to the possibilities that the mew year has to offer. The beginning of the year for me involves three hospital appointments for an introduction to a Neurophysiotherapist as well as tests to help narrow down the cause of the dizziness – so here’s hoping for more answers and an effective treatment plan! And next year I also have a cruise around the Mediterranean to look forward to in May. And perhaps I will discover new and beautiful places to discover with my carer, although for me nothing could top ‘The Potting Shed‘ in Llantrisant.
I would just like to wish all the reader of my blog – both new and old a very Merry Christmas and hope it brings everything you wish for and much more. I would also like to wish everyone the most wonderful New Year and hoping 2014 is an amazing year for everyone.
But most of all I hope everyone has a happy and healthy Christmas and New Year celebrations.
Christmas – it’s often known as the ‘most wonderful time of the year’. It is also however, a stressful time of year, with all the preparations that need to be made – the presents, food, decorating the home and so on. Add living with a chronic illness to the mix and the stress is exponentially increased. The fatigue that often accompanies many different chronic conditions makes it very difficult to plan for Christmas, or even to feel the joyfulness of this time of year.
Whilst everyone is making lists of all the material goods that they wish to be under the tree come Christmas Day; we spoonies are wishing to be free of the debilitating symptoms that affect our whole life. Simply, we wish for a cure; a cure that will end the chronic illness in which we live, so we can live a normal life.
Give back to those who help us throughout the year…
This year, however, whilst shopping with my carer for presents for my loved ones – parents, friends that have been there for me throughout the year, and of course my dog, made me very happy. It was then that I remembered the old adage ‘it is better to give than receive.’ And this is true, especially when living with a long-term chronic illness – Christmas allows us the opportunity to give back to those who are there for us everyday of the rest of the year. The presents we give, of course, do not have to be expensive, but they are simple small token of thanks for everything that they do for us.
Speaking to my close loved ones, they often speak of the helplessness they feel; they are not able to take away the hurt, upset and anguish that accompanies chronic illness, and as much as they wish they could cure me they obviously are not able to do so. However, instead they do what they can; they offer to help in the ways that make my life easier such as taking me to places that I need to go, be there for hospital appointments, do the little chores that I cannot do, as well as doing the little things that lifts my mood such as buying me chocolate or putting on my favourite film, and during holidays such as Christmas buying me little gifts to cheer me up as well giving me things that are practical.
Therefore, being able to give presents at this time of year, makes me very happy that I am able to do something, even if it is a small token of gratitude, and give back to those who give so much to help me throughout the entire year.
After all, isn’t giving to others encompasses the spirit of Christmas?
