Next installment of Maz’s story – how will it work out with new best friend Veronica?

Next installment of Maz’s story – how will it work out with new best friend Veronica?

I wonder, has anyone had results with chamomile or ginger tea?
Hoping that you enjoyed the first episode of this radio play about Maz, who is a young woman who has a thirst for life and just happens to need a wheelchair to get about as she has EDS – so I’m going to post each episode link daily this week. Please remember that the episodes are only available for a set number of days, so download them all now and listen at your leisure!
http://www.bbc.co.uk/programmes/b07m5gwp

This blog post from Chronic Rants will ring true with so many
When someone who’s generally healthy feels bad, they can usually tell you why: they drank too much last night, they haven’t been sleeping enough, they’re under a lot of stress, they’re getting sick.
When you have a chronic illness, it isn’t always so clear.
I was doing unusually well over the last few weeks. I wasn’t feeling as good as I do in the fall and winter, but as far as summer goes, my pain and fatigue and other symptoms weren’t too bad.
Then I started feeling unusually bad. I was more fatigued. I was depressed. I was in more pain. The symptoms ebbed and flowed but were always around. What happened?
I weighed the possibilities:
View original post 398 more words
Whilst scrolling through the BBC iplayer earlier searching for a good drama to listen to, I came across this series with the introduction “An uplifting comedy drama about the lifes, loves and misadventures of wheelchair user Maz”.
I was pleasantly surprised when I heard that main character Maz has a genetic condition that affects her connective tissues called Ehlers Danlos syndrome. It makes me hope that the syndrome is becoming more widely known and recognised in the mainstream. Actress, fellow zebra and patron of Ehlers Danlos UK, Cherylee Houston plays main character Maz.
Follow this link for Episode 1 of “Tinsel Girl and the Big Reunion” by Lou Ramsden

I have just taken part in this short survey for Life in Slow Motion – dead easy, but could help others with chronic problems so please take a look! C x
I think we all have that “worst moment” ingrained in our minds. That moment we will never forget when someone said something shocking and awful about our pain that we will never forget. For me, it was a doctor. I woke up one morning with a sharp new pain that shot through my chest, up…
You don’t have to see a disability for it to be there – I love the sentiments of this video from The Mighty (www.facebook.com/ChronicIllnessontheMighty/videos)
This article, written by Kerri Goff and published on The Mighty, is very personal but highlights elements of life that I believe we can all relate to – with or without illness. How many of us can truly say that at some time in our lives we have not been our own hardest critic?
“I have an invisible tormentor that you cannot see in this picture, but trust me, she is always with me. Some days her voice is a faint a whisper and on others it is as if she is riding around on my back while screaming into my ears. “You suck! You are not good enough! You are weak! And you are not really that sick.””……

Find the full article at:
http://themighty.com/2016/08/the-voice-in-my-head-who-tells-me-im-not-really-sick/
I just want to give a shout out to the amazing Siobhan Marie O’Connor who has won a silver medal in the 200m swimming medley. Of course I support her because she is British, but I support her and salute her for succeeding in spite of the chronic illness that she lives with every day.
Siobhan has the debilitating condition ulcerative colitis which is hard enough to live with day to day for the average person, but for a world class athlete it is a major feat. To balance the demands of daily training sessions, early mornings, study, travel & dietary requirements for training with the symptoms that accompany inflammatory bowel disease – this 20 year old young lady has deserves all the accolades that will come her way.

(Idiots guide to inflammatory bowel disease – UC & Crohns – to follow!)
I’m sitting here recharging – yes literally as the scs running a bit low on juice – watching the Olympics and downing Pimms. The divers and then the gymnasts, wow they are fit and so many of them have overcome injuries to be at the top of their game.
Pin for later

This got me thinking about a lady whose work we admired in an art gallery recently and her story. She was an ordinary young housewife who had her family and set about bringing up her children and supporting her husband as a stay at home mum. Life felt pretty dark at times, although it should have been great, and now that wonderful thing hindsight has shown her and her husband that she probably had post natal depression for many years. During these difficult days she developed a painful nerve condition of the face called trigeminal neuralgia – all the same awful nerve pain that is experienced with sciatica down the leg or nerve pain down the arm, but running through the side of the face. I know that I have written at length over the last year about nerve pain and just how hard it is to treat, but it really is the hardest thing to control and the trigeminal nerve is probably the hardest to symptom control. This would have led to a continuous cycle of pain and depression.
She had never painted beforebut with encouragement started to put brush to paper and found a fantastic outlet for her pain and depression. Ov
er a period of years she developed her own very distinctive style – the gallery described it as Marmite, as people either love her work or hate it – and her work started to be noticed by art critics. Today she has exhibited in a top London gallery, her art sells for thousands and she is a leading figure in the Royal Institute of watercolour painters. Just think, this all started with what was effectively art therapy!
http://www.adrianhillfineart.com/ – link for the gallery in Holt for more information

Therapies that complement traditional medicine have long been recognised for their beneficial qualities in mental health, palliative care and cancer care. The use of art and specifically colouring is now becoming a regular therapy for symptom control. Adult colouring books are quite the rage! I have found that when the pain is not settling, sitting quietly with a picture to colour in really changes my mindset and thus my response to the pain. There is something about the different way in which you have to concentrate that slows down the mind and is calming. My girl, who does more than just colour, says that she finds painting and drawing relaxing. With art, it is possible to express thoughts and feelings that can’t be voiced. In the paintings of the artist described, it really is possible to see her battle with depression and pain in the dark outer edges of every painting – and yet the details of the actual pictures are bright and vibrant, depicting people living life to the full. Maybe some these actually picture activities that she would have liked to have done or places to have visited – even the slightly more risque elements to some of her work could be expressing a side to life never experienced. I wonder how many of us bloggers (not just those with an illness) use writing as a similar therapy – whether it is as a distraction from illness, a means to express ourselves in a way that we are unable to voice in everyday life or merely a way to escape from the stresses & strains of modern day life for a few minutes.
So to return to my original thoughts, it is possible to work and strive to overcome physical & emotional difficulties in order to produce a work of art, be that a physical painting, a novel or a perfectly executed high bars programme.
But we mustn’t feel or be made to feel the lesser for failing to overcome our situations or to
produce wonderful artwork. We can take inspiration from others though and each find our own outlet.
So, I’ve finished charging, my battery is showing full, the Pimms is long gone……nearly forgot, we came away from that art gallery truly inspired, but also with a slightly lighter purse and a girl grinning from ear to ear as she carried oil paints home! I think I know how she plans to express herself over the remainder of the holidays!
Turning chronic illness into chronic creativity
Stories about fostering and adoption
Personal experience of living with chronic illness when life is beginning
Living with disability, using personal experience for social change
The greeting card community company
Life With Chronic Illness
Living life with migraine, post-concussion syndrome and mental health
My Experience with Ulcerative Colitis - the good, the bad and the messy
My neuroimmune journey: PANS, ME, and POTS
Genuinity: a philosophical quest to make the world a better place
Thoughts of a twenty-something freelancer navigating her way one blog post at a time
Ramblings from a writer
Author, Poet, Storyteller
Welcome to the adventure, from the fun to the mundane and all that's in-between