dystonia, Just wobbly life

The revitalising power of the sea!

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Nothing quite like the seaside to calm the soul

It has been one of those weeks. One evening out, to discuss scarecrows of all things for the village Scarecrow Festival, meant three days of bed recovering. The joy of being a spoonie!

Today I longed to be out at the sea, even if it was looking at it through the car windscreen. Anti sickness meds taken and dosed up with yellows, off we went. It was heaven. We are so lucky to live close enough to the sea we can be there under an hour. We really need to go there more often especially on days the children are at school and the tourists haven’t arrived yet.

#wobblylife #seaside

The sound of the waves, the smell and salty air calms your soul and wakes it up. It is a truly revitalising experience.

The tide was coming in so I was able to hobble with help of my daughter to the sea. Shoes off and jeans rolled up, we went on a slow walk to the water. The baby turtles on the nature documentaries are faster than me. There is nothing like the feel of damp sand squishing beneath your toes to make you feel happy.

#wobblypaddling #wobblylife

I learnt that, being low on dopamine means you can’t leap up and a way from freezing cold waves. Instead you have one leg that freezes causes you to stumble forward needing to be caught by your hubby.

I do miss the ability to walk along the shoreline for miles with my husband. In the past I would be walking, skipping and jumping into waves with energy to spare. My husband would hold my hand for romance, not as a carer making sure I could get from A to B without falling over. Now the effort to walk the few metres  to the water while fighting a leg that is insistent on spasming and twist is tiring. I miss running to the water’s edge jumping over incoming waves with my daughter,laughing as the cold water makes  you squeal. I wish we had done it more when I could and appreciated those moments a lot more.  But I guess life changes and you have to look at the positives. I am lucky I have a great family as well as yellows so I can have days like today and still paddle in the sea*.

 

*If you take at least one step in the sea and get your jeans soggy, it is still classed as paddling.

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Book review

Reading for Dystonia

dystonia week banner 2016

For those that follow my other blog, you know I am wobbly by nature with a condition called dystonia. This week is Dystonia Awareness week in the UK so it seems fitting to review 3 books about the condition. When I was first diagnosed , as a bookworm, my  instinct was to find a book so I could find out more about this neurological condition. Google is great for many things but I needed words from people with the condition, to understand more and learn how to live with it. To my dismay, there were textbooks with prices beyond my bank balance but no sign of the books I craved, despite the condition being the third most common movement disorder and it affects at least  70, 000 people in the UK.  Roll on a few years I have found these.

A Twisted Fate My Life with Dystonia by Brenda Currey Lewis

A Twisted Fate

I stumbled across A Twisted Fate on Twitter and I am so glad I did. It has become one of my firm favourites in my Kindle library.

Written to spread much needed awareness of dystonia, Brenda Currey Lewis gives an honest, down to earth account of her life with generalised dystonia which began in childhood as well as a clear overview on what dystonia is.  Her story gives an insight into life with the condition and  shows how dystonia affects all parts of life including the lives of those around you. There were so many times I could relate to her experiences and I am glad my dystonia waited until I was older to surface in the 2000s. The writing style allows her strong character to come through and I imagine she would be amazing to talk to over a cup of tea.

I would recommend this easy to read, enlightening book to everyone who wants to find out more about the condition.

Diagnosis Dystonia by Tom Seaman

diagnosis dystonia pic

This was the book I wished I had found as I wobbled out of my neurologist’s room with a diagnosis. Diagnosis Dystonia covers a range of topics a newly diagnosed person needs to know, as well as information for those who have had the condition for a while. It is a book which is obviously written  with care and consideration of what the reader will need. Part memoir, describing his own journey with cervical dystonia and part guide to this condition, it delves into the physical and emotional side as well as different types, treatments, daily living and gaining support from others. Tom Seaman has written a book that gives an insight into the condition and shows ways to live with dystonia. It tells you there will be bad days but there are ways forward, to adapt and live your life. I have a rare form of dystonia (DRD) and there are parts that are not relevant but it doesn’t matter. There is something for everyone in this book. It can be read from cover to cover or dipped into when required. If I had this book when my own wobbly journey began it will look well-read with it opening naturally at certain chapters by now.

For those with the condition, it is a book of hope, determination and gives an insight into the world of dystonia so you can help yourself be your own advocate. For others, it gives you an awareness of the condition with all its ups and downs so you gain an understanding of the condition and support people may need.

Tom Seaman works hard to spread awareness via his blog

Misdiagnosed by Jean Sharon Abbott

misdiagnosed book

I have a rare form of dystonia – dopa responsive dystonia (DRD) which affects approx 1 in 2 million people. I have followed Jean Sharon Abbott on her blog Rainy Day Friend as she documents her life with this condition. I was excited to discover she was writing her memoir.

Misdiagnosed follows her life from childhood with the diagnosis of cerebral palsy  to when she was given the correct diagnosis of DRD. Unlike some dystonias, DRD can be treated with a drug commonly given to those with Parkinson’s disease. This small, yellow pill has the ability to transform lives. It can be the difference between  being in a wheelchair to climbing mountains. This positive book shows her strength and determination, the ups and downs of living with dystonia and appreciating the small things in life many people overlook.  It also highlights the need for awareness of dystonia so correct diagnosis can be given.

Jean Sharon Abbott’s has appeared on TV shows, written about in newspapers and magazines worldwide. Since her story has been told, others have been given the correct diagnosis so they are also living a life they never thought they would.

 

Useful links:

The Dystonia Society UK

Dystonia Medical Research Foundation

Michael J Fox Foundation

 

 

 

 

 

 

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Tea review, Tea time

A tea for sunny days

I have been over reliant on Builder’s tea recently. Don’t get me wrong there is nothing wrong with Builder’s tea – teabag in a mug, brewed to perfection, a splash of milk and drink. It hits the spot and has got me through many crises. I definitely live by the motto – keep calm and drink tea. Tea is a daily necessity but Builder’s tea is about the end product rather than the calming ritual other teas require.

This phase has come to a halt with the emergence of a late Christmas present. Hidden in a safe place in the depth’s of a teenager’s bedroom a forgotten gift, a  Basilur tea caddy  was found.

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A book of Basilur Magic Fruits

Still a teabag but that is where the similarity with Builder’s tea stops. Encased in an attractive book shaped caddy – perfect for bookworms like me – are a selection of fruit flavoured black tea. As I mentioned in a previous review of Basilur tea, I am new to flavoured black tea but I am impressed by the edge they give the drink.

In this collection, my favourite by far is the lemon and lime. Not only is the flavour refreshing, the citrus aroma  wakes you up.  It is perfect for sunny days, sitting in the garden whilst reading and  or first thing in the day when you can take time to savour the taste and reflect on the day to come. As an individually wrapped teabag, it is ideal for slipping in your bag for drinks out. I took mine for a hospital stay and it was bliss not drinking NHS tea. I am very pleased it is available as loose tea because as convenient teabags are, the ritual of using  teapot adds to the drink. This tea is made for taking your time and relaxing.

The other teabags in the collection are Strawberry & Kiwi, Exotic and Raspberry & Rosehip.

 

 

 

DRD tests, dystonia

It should have been Friday 13th

As soon as my Kindle screen froze and refused to work, I knew it was going to be one of those days. The sense of impending doom I felt last week when my appointment was postponed  descended once more. As a bookworm, immersing myself into another reality is my coping strategy when things are tough. My Kindle has been well used these last few weeks, which could explain it’s demise. Turning a page by the touch of a button is a lot easier than physically flicking the page one-handed when you are pretzel lying down. With no electronic reading library to turn, I grabbed a small paperback I borrowed from the library and prayed it would be a story I could get into.

The uneasy feeling remained throughout the journey despite the glorious sunrise and the barn owl swooping across a flat field to a fence post as we drove by. Every mile or so it seemed, I felt my shoulder and neck pull and stiffen. Cars and dystonia do not mix. Traffic slowed down to a stop as blue flashing lights appeared ahead. Time was slipping by and despite leaving in plenty of time, the fear of being late grew. As the snarl up eased and we trundled on our way, it was evident we would be late but only by a few minutes.

barn owl 2

Arriving at the hospital and debating which building it was, we were directed to the ward. I was given verbal directions of where to go once I arrived at the entrance but I am a spoonie with brain fog. Even before my brain cell had its wobble, I was useless with directions. I do not know my left and right unless I can refer to the scar on my hand. When I was still driving, it was common for me to arrive home late because I took the wrong turning on a roundabout. I have taken so many wrong turns, all roads look familiar. Verbal directions, especially over the phone when I can not see people’s gestures to help, are a mish mash of ” blah blah old corridor turn left blah blah double doors blah blah”. I can normally pick out enough landmarks to find my way but today that strategy failed.

Arriving at the ward, I knew something had gone completely wrong when staff look panicked when I said I  had a test booked. Papers got shuffled, manic typing of keyboard occurred and then the phone calls were made. Several minutes later ,the news was broken we were at the wrong hospital!

Whether the original mistake was theirs or mine, after all I am the one with the dodgy brain cell, we will never know.  I do know I did try to get a confirmation letter of the time, date and location but I was told it is no longer policy to send out letters. To me this makes no sense, especially in neurology. I like things written in black and write, to be read and reread repeatedly or shared wich others as back up. As my handwriting is affected, scribbling down notes as I talk on the phone is not the most reliable. Even I can’t decipher my writing!

I ticked off bad things that had happened – Kindle, accident and wrong location – I came up with three so decided we were OK for the rest of the day. Fighting back tears and trying to control a twisting body, I decided I would rather have gone to the wrong hospital than have the procedure to go wrong as the last problem. I am not superstitious at all

It is a 3 minute journey from one hospital to the next according to the SatNav. An hour and half later, we were struggling to find a parking space. The hospital had phoned to see where we were. I missed the call as I  fumbled one-handed to find the phone. Balancing the phone on a spasming knee, using the wrong hand ( my dominant one was preoccupied with practising it contortionists ability) I managed to listen to the message. Afer many repeated listens on speaker I managed to scrawl the number down. It was decided we were too late for things to be done. One test occurs over 6 hours but it has to be done after a lumbar puncture. That requires blood test results before hand. As a day ward they shut in the evening and the lab was also unavailable that late (for that night only). It just wasn’t meant to be happening that day. Resigned rather than angry or frustrated, a new date was made. One more week of no yellows.

On the plus side

  •  I have met the staff on the ward and they are nice
  • Talking to the doctor has made me slightly less apprehensive about having it done (emphasis on slightly)
  • We know the correct hospital and where the ward is
  • The next appointment doesn’t clash with the junior doctors strikes
  • A couple of hours later, I was drinking a cup of tea that wasn’t a NHS version (the traffic had miraculously melted away for the home journey)
  • I will have some reading material with me next time.
  • I know to ALWAYS check which hospital to attend, not just time and ward.

 

 

DRD tests, dystonia

And then there were none!

 

There are no more yellow ones* in my pill pot – zilch, nada, zero and it looks rather empty as well as less colourful. Forget what I said about reducing meds not being so bad, the last 3 weeks (the tests were delayed) have been hard,  tears of pain have been shed and my head has never been so full of swear words…

No more yellow ones - Copy
Whoever wrote in the medical literature dystonia doesn’t hurt is lying. When it attacks it hurts. Muscles are powerful. It feels like something is going to snap, crack or break as the force of the contractions jolt my limbs and torso. Swear words ricochet through my  mind and I start breathing as if I am in an episode of “Call a midwife”. Unlike, labour there is no ebb and flow of the pain.  At times I want to yell as loud as possible when a spasm rips through your shoulder and back forcing your neck to twist side ways. It is a shame my throat feels tight and restricted otherwise the air would be blue. I struggle to talk never mind yell.  Bodies are not designed to contort into the positions dystonia forces them into. Unless you are a contortionist but that takes years off practice and you remain in control. This way round, dystonia grips hold of your muscles tightly and you can’t fight it. From experience, the more you try to fight the firmer the hold it has. The spasms just last longer and become more intense. Accepting you can’t win the battle is the only way through with the help of heat pads, cushions and distractions.
When you get stuck in a position simple things can become a great challenge, reading become near impossible when neck fixed upwards while one arm twisted inwards. Times like that, I wish there are “Where’s Wally?” posters on the ceilings just for something to do. Drinking tea has to wait until things have subsided unless my daughter holds the cup in a position I can slurp some. Sod’s law always dictates the best looking and tastiest tea is the one just out of reach. Tea and straws do not mix.

I'm a liitle teapot sepia
There are times, I look like a pretzel and others when I look like I am joining in with “I am a little teapot” nursery rhyme. I can’t sit down if I am standing and visa versa.  I went to GP  and had to apologise as I couldn’t sit. Being out in public makes me cringe and want to hide. Travelling on Bazil is out of the question most of the time as I can’t turn to see behind or the right. There are too many blind spots to be safe. Life has become more closed in than before.
Travelling in the car sets it off every time so I am panicking about the long journey to the hospital. How they do a lumbar puncture on a spasming, twisted back? I do not know but will find out later this week.
I am dreading the tests especially the lumbar puncture but as I become more dopamine deficient the lure of having a yellow one in my hand to take is keeping me from freaking out.

 

*Sinemet – levodopa

DRD tests, dystonia

More than half way down – eek!

I have managed to get more than half way down on my magic yellow ones (aka Sinemet) and it has been a lot less traumatic than  I expected. Compared to how my body is when it misses one or two normal doses by accident or is dealing with illness, it is coping quite well. Though just because it is coping, it doesn’t mean it isn’t protesting.

  • I am slower
  • My right foot turns in and walking is painful as I end up walking on the side of my foot or tiptoe. I forgot all about tiptoing until I had reduced by 1 pill. I remember tiptoing at work pre-diagnosis but never thought it was a dopamine related thing.
  • My toes curl under under more
  • My left arms favourite position is bent while my hand’s preferred position is curled. It isn’t fixed most of the time but it has had  moments of clawing with an added twist. One finger sticks up but luckily it isn’t the middle one. That would be extremely embarrassing in public.
  • I freeze more and my right leg refuses to listen when I say move. It is a bit like trying to get my Jack Russell to do something when he has his own agenda. However much you yell at it, it doesn’t happen until physically moved or it decides it wants to. Mind over matter doesn’t work!
  • My neck is tense and is pulling. All muscles in my shoulder blade are protesting.
  • Abs feel at times they are doing sit ups on their own.
  • Nausea is back in full force.
  • Forget about writing unless you have an electron microscope.
  • Talking is hit and miss, whether the required word can be said. If my tongue and lips see it as an impossible tongue twister, it becomes a game of charades or guess the word from a description. Simple questions the hardest as the tend to require specific words, where as a ramble can be made of manageable language.

Reducing my yellows has highlighted that I am better in the mornings and sleep gives me a boost.  Siestas are a daily requirement.

Cutting down again tomorrow but that is for another day.

I still have got plenty of snuggly, loud socks and I can still drink tea while cuddling my dogs so I am still smiling.

 

P.S This is late being published – sorry!

Just wobbly life

Magical Glow Clouds

Courtsey of Storm Henry, we woke up to our very own version of Night Vale’s Glow Cloud.

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“the cloud glows in a variety of colors, perhaps changing from observer to observer, although all report a low whistling when it draws near” * DSC06804“here’s a tip, take your kids out and use the Cloud’s constantly mutating hue to teach him or her the names of colors. It’s fun, and it shows them the real-life applications of learning” *DSC06809

Fortunately, these clouds were benign and did not rain dead animals on us, unlike the Mighty Glow Cloud in Night Vale’s podcast.

I may not have seen the Northern Lights but these are a close second!

 

*   “Glow Cloud” Episode 2

 

 

 

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DRD tests, dystonia, Just wobbly life

As long as there are funky socks, it will be OK

 

 

Life is better with funky socks
Life is better with funky socks

Having received the date  for the dreaded lumbar puncture and phenylalanine loading test, it time to be proactive rather than wasting time and precious dopamine on worrying.

As best I can, I am ready for the enforced duvet days which are on the horizon.

 This is my dopamine deficient/spoonie survival kit

 

  •  colourful happy socks. The best way to conjure up courage is funky socks.  The world can look dark, mood grim until you look at your brightly clad feet and they lift your mood. They work particularly well for hospital admissions when you have to wear the ugly, self-esteem draining hospital gown. Stripey toes are an absurd sight but they ground me and remind me that whatever is happening I am still me.
  • Sweets lots of sweets. I have a sweet tooth  but forget chocolate, lollipops are the way to happiness. They also distract from any nausea and feeling green.
  • books. I have collected my library stash as well as placed many on order to keep me going for the next few weeks
  • Kindle books have been downloaded for days my hands will protest at the idea of holding a physical copy
  • audiobooks have been downloaded for sleepless nights, eyeache and headaches when reading is impossible but literary input is needed. I am looking forward to Harry Potte series.
  • a list of programmes to watch on TV has been made including Sherlock, Call a midwife, Norell and Mr Strange, Pennydreadful. I am not sure I will be able to deal with BBC’s War and Peace since brain fog gives me the attention span of a gnat. Any other suggestions would be gratefully recieved.
  • Music has been downloaded. My mP3 player has been found and charged.
  • Two new fish have been added to my aquarium for me to watch from underneath my duvet. There is something very relaxing about fish swimming in the water doing their normal thing.
  • Heaties and electric heat pads are always needed.
  • A selection of different teas because Builder’s tea just does not work when you need to drink it with a straw.
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Library stash
Sweets galore!

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