Uncategorized

Meet the Author – M J Smith

Duvet Dwellers Books & Cards

This month we were pleased to catch up with MJ Smith, the author of one of our favourite reads this year, Vascular Ehlers-Danlos Syndrome: The Journey Begins. This is a 5 star rated book and it deserves every star with its brutally honest, yet heartwarming account of being diagnosed with a rare illness and the consequences it brings. If you have been touched by chronic illness, you will identify with much he says. The relaxed and humourous style makes the book that could have been difficult to read, a joy to read in one sitting with a cup of tea.

m-j-smith-pic M J Smith

About MJ Smith

In 2013, M J Smith was diagnosed with a rare life threatening genetic disorder that changed his life forever.  In his effort to gain knowledge of Vascular Ehlers-Danlos Syndrome (vEDS), it quickly became apparent that there was little in the way of help or…

View original post 599 more words

Advertisements
Carer, Just wobbly life, Uncategorized

Never underestimate the meaning of  – a shed

This week has been significant in a good way. It has been one to write on the calendar – worthy of remembering. After 9 excruciating years, my husband has a shed. It may seem nothing to many but to us it is the final piece of a puzzle to starting a fresh. Putting a line under the crap that has gone before and a long with ‘The Pledge‘ put down roots and a routine to ground us on low spoon and emotional times.


My husband has always had access to a shed or workshop, to tinker, mend or create. It was his place to go to clear his thoughts, release emotions and relax. He is naturally creative and this was his outlet. Suddenly in one house move it was gone. Promises to have a replacement were broken and delayed. Mainly because of finances. Since he became my full-time carer it has been evident he needed a shed more than ever. Somewhere he could go to relax and to be himself rather than a husband or carer. He had tried other ways to have him time but there  has always been a big issue in his mind the guilt  of  being a way from me and worry of what he will come home too. This means the hobby is counterproductive. Not sure why he doesn’t trust me to be alone  (looking at the bruise collection on my legs and recalling the burnt saucepan from my attempts at booking eggs).

eggs

Chronic illness not only robs the sufferer/fighter of themselves and the lives they expected but does the same to those close around  them. It is nasty like that. We are hoping the shed will give some of him back.

Just need to work out how to afford to do the work bench and other bits he needs to do stuff in there. But for now he can drink tea/beer  in there and dream of his perfect space.

Already it has given him a much-needed boost and hope for the future.

Uncategorized

One Million lovely letters

One Million Lovely Letters by Jodi Ann Bickley

20150707_171535I read this for Duvet Dwellers book club in July

As soon as you have read the few pages of this book , you know you are reading a book written from the heart. It is warm, honest and Jodi’s amazing character shines through. You can imagine being  curled up on the sofa, clad in your snuggliest socks with a cup of tea, listening to her talk.

This is an autobiography of her life and how one tiny thing, such as a tick bite, can dramatically alter the direction your life takes. Her illness flips everything upside down, forcing her to learn basic skills again. The chronic nature of her condition descends her into despair and it is only the serendipitous  arrival of an app message that stopped her ending it all. Again, a small thing had  the ability to send her life in another direction .

One million lovely letter project was born and within hours the first of many letters was written. By writing letters to strangers in need of a little bit of positivity and caring, she not only helps them but herself. She uses the power of words to uplift the soul. Her writing oozes with warmth and love. It is felt in every letter you read.

This is a book to read if you are in need of uplifting and reminding how little things matter. You finish the book feeling as if you have received  a hug and been  told everything will be OK. it will also inspire you to grab some colourful pens, fancy paper and tell someone how special they are.

More info on the One Million Lovely Letter project – http://onemillionlovelyletters.com/

Uncategorized

Still Alice – a must read for everyone!

Inspired by the news,  they have made  Lisa Genova’s book Still Alice into a film which was out last month,I dug out my copy.

I sincerely hope the film gives this wonderful, powerful book justice. A picture can paint a thousand words but  when it comes to human emotions, langauge can describe and delve into someones thoughts better than a film. Thoughts are abstract and they are difficult to convey in words but harder in an actor’s body language alone. Good writers have the knack of portraying a character’s emotions and thoughts that resonate with the reader, luring them deeper into the story and forming a relationship with the protagonists.  At the beginning of the story, Alice is very adept at hiding her symptoms and emotions from others so it will be interesting how her fear and confusion is shown. I hope Kirsten Stewart is a strong enough actress for the role of Alice’s  independent and confident daughter Lydia and does not play her as an aloof, stroppy teenager as in Twilight. Viewers who have the disease say it is an accurate portrayal of its effects in an Independent article

Still Alice follows the life of Alice, a Harvard professor in Linguistics who develops early onset Alzheimer’s. Written from her point of view, it allows the reader to understand some of the emotions and complexities that are involved with a devastating diagnosis. She is forced from a world of academia and successful career into one of fear, anxiety and loneliness. That said it is not a depressing book as it highlights the human ability to adapt and desire not to give up easily.
I really wish I had read this whilst working in health care as it offers an unique perspective on the illness and gives some understanding on the sufferer’s ordeal. Most books view Alzheimer’s disease from the outside looking in. Lisa Genova’s ability to entwine her knowledge and experience in neurology with storytelling is exceptional. This book should be on everyone’s reading list. In a world where the number of people being affected by this condition it can only be good to raise awareness. A greater understanding can only benefit everyone.

You can now keep updated on Facebook https://www.facebook.com/booksteaandsnugglysocks

Uncategorized

Writing a doctor would be proud of!

I love writing. I always have ever since I was a child. I always had a notebook with me to scribble down thoughts and stories whether I was at home, on the school bus or out and about. There is nothing as like grabbing your favourite pen (usually purple) and writing down what enters your head  letting the words appear on the page. For me, the best time to write is the middle of the night as I wake from  a dream-like state. Words. sentences and even paragraphs form so much easier when you are not consciously concentrating on it. My best essays were done based on midnight ramblings. Last night, I couldn’t sleep and found a pen to write a letter to my dystonia like some others have done very eloquently.

dear dystonia - Copy (2)

My writing was terrible. Even a tiny spider would struggle to read my words. The lack of sinemet and dopamine meant I could no longer communicate with my hands to do I wanted them to do. I have an app on my phone to write with and it is used more and more but it is not the same. Words do not flow and thoughts become disjointed in the delay of typing them because an app requires you to fumble about turning on the phone and finding the app then adding new pages etc. Sometimes the  ideas have faded by the time the page opens.It is frustrating and  I struggle to accept it . I miss the freedom and spontaneity a scrap of paper and pen gives you. Your brain does nt have to think, writing just happens

An old notebook shows how much my handwriting has changed on the last 5 years of wobbliness.In 2011, I was studying a fantastic literature course to keep me busy while I was off work while having treatment for vasculitis. My writing was normal and was done without a thought.

original writing

My handwriting began to get smaller the more I wrote.

big to small

A quick consultation with Dr Google triggered alarm bells as micrograghia is a common symptom of Parkinson’s Disease. I had already been told I did not have PD, despite other common symptoms such as freezing, tremor and no arm swing. It was enough for me to ask for a Sinemet trial. Luckily, I have a lovely neuro who was willing to give it a try. Immediately, I noticed the tremor in my hands calmed and my writing reverted back to its original size. It was amazing!!!!

An increase in meds and a final diagnosis did improve writing for longer so I could complete my course.

Roll on a couple more years writing is becoming more of a problem as the windows in the day my Sinemet works gets shorter and it does n’t take many sentences before it becomes an unreadable scrawl.

That said, it is  a daily miracle when my yellow pills perform their magic so I can pick up a pen and write freely with the added bonus of it being legible, not only to minute spiders with magnifying glasses or doctors.

At other times, I am so pleased I live in an age of text, smartphones and PCs ….

Uncategorized

Let’s jump!!!!

After the success of the ice bucket challenge in raising awareness for ALS many are using social media to say “this disease/condition exists” even if it only causes a little ripple.  A ripple can turn into a big wave which can in turn become a tsunami of awareness so lets jump for dystonia as high as we can.

Nigel jumping for dystonia snip

Jump for dystonia though my cuddly friend is doing it for me as lost my bounce along the way and he has plenty 🙂 He is also sooo much more photogenic xxx

Uncategorized

Acceptance and swallowing one’s pride

Had angiogram yesterday after having a summer of chest pain and nearly passing out.
While in hospital for just one day I have learnt to accept;

  • DRD will misbehave given any opportunity
  • It will ignore the levodopa whizzing around my body if it is stressed or in pain
  • It will turn me into a human pretzel while wearing only a hospital gown and NHS oversized paper knickers – felt mortified
  • It will create a new game involving a tremoring hand, jam on toast and an open mouth. –  felt embarassed and frustrated
  • It will make the nurse call bell redundant by clawing your hand and refuse to send messages to hand to move – felt isolated and trapped
  • It will make your voice quiet, difficult to understand or non-existent –
  • It will make you swallow your pride and admit defeat and ask for help.- felt extremely humiliatedI hate giving up and would rather struggle or do without than admit defeat and ask for help especially for normal everyday things. All I wanted after my procedure was a cup of tea. With my good hand out of action I had to rely on my weak though supposedly dominant hand. At moments like this I realise how much I have adapted and rely solely on my right hand. Picking up a mug of tea was an exercise of concentration. If someone was looking I would have looked like someone trying to levitate an object using mind control. My hand did not want to listen and when it did the weight of mug caused it to be slow. It was like watching a film in slow motion. The tea was heaven. The reverse action was just as painstakingly tedious and then my hand refused to let go of the cup. Simple tasks are not supposed to be so difficult. The next drink was left undrunk as my hand decided it had done it once it did not need to do it again.

Hours later, after an episode of my dystonia at it a worst, I needed a cup of tea (I am a tea-aholic). Having to admit to someone, even a nurse, I couldn’t do it and needed a straw was hard, shameful and mortifying. As an adult and not yet 98 years old, I should be able to do a task a toddler can do with ease. Even communicating what I wanted was hard as voice very quiet,disjointed and some words were completely gone. A plastic beaker and straw were given just to add to the feeling of reverting back to being an infant. The tea tasted better than I expected which was a bonus but not sure it was worth it.

beaker2

Uncategorized

Unexpected revelation

Sitting in a consultation with both my rhuemie and a neuro an unexpected conversation emerged about my upcoming appointment to Queen Square, London. It appears the reason my regular neuro is keen for my referral there is to see if I am suitable for DBS (Deep Brain Stimulation) to control my DRD as my lovely yellows ones struggle to keep it under control.Luckily I suppose, I knew what DBS was otherwise I think I would have reacted with horror if they had to explain it to me rather than just having a string of expletives running through my head followed by the determined ‘that is never going to happen’, while trying to appear calm from the outside. I imagine the reason my regular neuro kept quiet about it was he knows my reaction to having a lumbar puncture, never mind brain surgery. Yep, brain surgery. I can safely say I never imagined a time in my life I would be discussing brain surgery. It is a discussion characters have on the telly in hospital dramas. Not in real life and not about MY brain! It just does not seem right and feels completely alien to how life should be.
As a young teenager, I watched with horror a documentary on a potential new treatment for Parkinson’s disease which involved surgery. It looked horrific and what shocked me more was the patient was awake! I vowed never to have anything like that done and had nightmares about it ever since. Now the topic of similar (though I am sure not so bad but I am not brave enough to watch the procedure on YouTube) has come up in relation to me. It is just unreal and  Having electrodes in brain something out of a sci-fi movie.

Yet I seen videos of before and after and it scares me that I get tempted. They are like miracles.

A guy with PD

Warning: the next video has  some surgery in it (I could nt watch!) but shows how amazing it can be.

To have the freedom and movement without off periods sounds like a dream come true. Images of what life could be like run through your head like a movie. Running through autumn leaves (yep running not an off balance shuffle), swimming with my daughter, exploring the countryside with my dogs and hubby, working again, driving and doing all the things I used to do but appreciating every moment. No dips, no off periods, no freezes or storms triggered by the seemingly slightest thing. but then reality hits. You realise the method and risks you need to take  and as with everything, there are never guarantees it will work.
For now, for me it is a step to far. I have my yellows and compared to what I am like without them, they give me some freedom and movement. I would rather accept the ups and downs during the day and limitations than risk everything but it does n’t stop the  ‘what if’ movie running through my mind.

Uncategorized

The power of blogs!

I love reading blogs whether they are about hobbies, reading and books. A new book maybe discovered or a tasty meal .Most of all I love reading about people’s lives. They are an insight, a sliver into someone’s thoughts and everyday experiences. Sometimes an entry or part of paragraph will resonate with you and make you think ‘ I feel that’ or ‘I understand that’ . They can make you feel sad, happy and even “normal” as your thoughts, emotions and experiences though always unique are similar and you don’t feel so alone. This is particularly helpful when you enter the world of chronic illness whether you are in pre diagnosis, limboland or have received a label which alters your life forever.
Some blogs and writers have the ability to change people’s lives even if it has been discovered by serendipity.
One such writer and blog is Jean Abbott. Her own words says it all in her post “Changing Lives” on her blog Rainy Day Friend and her video.

Sharing her life with such honesty and being brave enough to release it with a video (I am so chicken I cringe at the idea of my neuro watching me shuffle around never mind send it into cyberspace) is amazing and life changing for some who watch it. A book of her life would be fantastic and one I would be proud to have on my bookcase.

I read a blog/video Dystonic Days whilst in limboland which influenced the decision to ask about a sinemet trial after all, I had nothing to lose and I hoped I would gain the ability to cartwheel in the road (not that I could do that as a child nevermind now). Like him, I had Parkinson’s Disease symptoms but I was repeatedly told it wasn’t PD.

Other blogs on Dystonia I like are:

Of Storms and Peace who tells the reality of dystonia and gaining a diagnosis with complete honesty.

Dystonia and me is an insight into dystonia, chronic Lyme disease and EDS