dystonia, hospital, Just wobbly life

Christmas countdown: The Spoonie Way

It is the run up to Christmas and this year’s countdown consists of hospital appointments. Normally, there are at least two but everytime the postie clangs the letter box, another envelope bearing a hospitals logo appears. Bright Christmas card envelopes would be preferable. I have had rhuemie and neuro check ups already but now dates for gastro, further ones for rhuemie and blood tests for genetics have appeared. I am still waiting for a much needed physio appointment.  Add in the regular blood tests, a dentist trip and visits to the vets, I am counting down the days to Christmas by ticking off my ever increasing scribblings on my now tatty calendar. I could design a Spoonie version of an Advent calendar.

Forget smiley snowmen, there could be tinsel wearing medics or chocolate spoons!
Forget smiley snowmen, there could be tinsel wearing medics or chocolate spoons!

My phone is adding music to the festive activities when it pings alerts of the upcoming events. Maybe there is a way of changing a ping to a Christmas tune. Jingle Bells anyone?*

I remember when my diary was full of Christmas parties and meetups. I would deliberate on my perfect outfit for the festive fun. NowI sepnd my time, weighing up the pros and cons in relation too the medic I am seeing. Forget high heels, red easy to get on boots are the way to go. Dresses are replaced by comfy clothes that are easy to remove and get back on. Times have definarely changed.

The joy of being a wobbly spoonie!

*I think my brain cell is showing it’s lack of sleep.

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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.

Book review, books

Problem with being a Spoonie Bookworm #1 – Brain fog

Before my brain went wobbly I could easily read several novels a week and that was whilst  working. They ranged from page-turning bestsellers  to long complicated epics. As long as it had words in it, I would read it. Fast forward a few years of chronic illness and the accompanying medication, those days are gone. I may have more time on my hands but my consumption  of reading material has reduced significantly.The main reason is brain fog and fatigue.

When either or both descend reading any book which is  complicated, long with many characters or twists and turns is put to one side. I lose the thread of the stories as I fall asleep or wading through the treacle of my brain to  is too much of a battle.

Usually at this point, I fall back to well read favourites where I already know the convoluted plots   or easy to read, quick page-turning Chick lit. After reading several  of these in the bounce I was bored with the girl meets boy scenarios but wasn’t sure what else to read.

I was relieved when a fellow member of  Duvet Dwellers Book Club recommended Samantha Moon: Vampire for Hire series by J.R Rain. Once downloaded using the timely offer 30 days free Kindle Unlimited offer Amazon had sent me, I began to read.

Moon

The book follows Samantha  Moon – private investigator, mum and vampire. I wasn’t sure how it would all fit together but it works well and I was hooked. it is easy reading with a twist to keep you interested with crime chasing, family saga, paranormal and hint of romance. What more do you need? The characters have enough of a backstory to add depth to what could have come across as one-dimensional. Sam is likeable, quirky and no pushover even without her vampiric tendencies. You long to find out how the relationships  around her will develop as the consequences  of being a vampire hit home.

I read the first book Moon Dance in one duvet day. I not only enjoyed it but I felt a sense of achievement and a hint of the old me. I am now reading Vampire Moon  and enjoying even more. I am  wondering where the next  7 will take me.

It vaguely reminds me of the TV series Blood Ties I binge-watched while I was having chemo. The difference being in this, the PI was human fighting crime with the help of a vampire, the opposite to this book. It ahs the same feel and desire to read/watch just a little bit more.

Highly recommended  if you need something to satisfy the bookworm in you without bamboozling your mind on low energy days.

dystonia, Fatigue, Just wobbly life

What Facebook doesn’t tell you

Yesterday was a day of 2 halves.

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10.00am
I am writing this, perching on the seawall, courtesy of hubby helping me up.I knew when I first met him, falling in love with a bodybuilder would have its advantages.  With my back against a pillar and the sun shining  I feel happy.
He has gone for a stroll and my daughter has gone shell/pebble hunting. I have my book and I amazed the pledge has worked this week. We all feel better.

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Treasures on the beach

 

Fast forward to 2pm

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Pebble face says it all!

I have crawled to bed dosed up with Tramadol which is having minimal effect. I am up to my limit on  meds so I have no choice other than curl up in a darkened room with sunglasses on and try to sleep in the hope it will encourage my muscles to relax and stop fighting each other. After updating status on Facebook earlier with smiles, this is the side of my life friends don’t see. The payback from an earlier outing. The pain and tears. Fellow spoonie friends expect it and understand but others don’t see what invisible conditions do. It is not their fault as I tend to hide away and keep schtum (after all I get bored with it so imagine what they would feel). Admitting payback makes me feel like a failure as it is  proof I can’t do what they can  but it highlights that Facebook statuses do not tell the whole story. If I can only show the highs of my life with the occasional rant over broken appliances how many other people on my friends list (spoonies or not) doing the same, hiding the pain, heartache and troubles away when  all they need is a hug and a shoulder to cry on. Hiding away at moments when they really need a friend.

Hugs to all x

 

 

 

 

 

 

 

 

Just wobbly life

The Pledge

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The last two years have been tough. I always thought once I had a diagnosis and we knew what we were fighting, things would be easier but life isn’t like that. One hurdle is jumped and others appear in front of you. It doesn’t feel as if there is time to stop or rest, you just have to continue. Not stopping until you become so exhausted and end of tether is not good for anyone whether you are a spoonie, carer or someone juggling many commitments. Running on adrenaline, dealing with too many stressful situations with a limited support network has led to depression taking hold in the family and from an outsider that is harder to deal with, more isolating than any physical challenges I have experienced. Finding the glimmer of light that things could get better in the darkest moments seem as unlikely as finding the needle in a haystack.

An impromptu visit to the seaside over the weekend may have changed that. Away from home, to do lists and expectations we sat, breathed in the sea air and just talked about nothing. The ebb and flow of the waves and coastal sounds and smells were calming. It gives the mind head space to realise there is time to sit, rest and appreciate just being. It provides that hope that is sometimes missing.

sea to do list
A pledge was made to come to the sea at least twice a week to just be.  If we can find a cafe nearby that sells a proper cup of tea or mug of Horlicks, it will be perfect. It is time to have a routine of our own that will fit our spoonie lifestyle rather than look back longingly at what we used to do or look begrudgingly at our present and be frustrated at the lack of resemblance it has to the future we imagined.   I can’t promise I can go for walks, have date nights etc but even on low spoon days we can watch the sea and be for a while. On good days we can stumble over the beach to collect shells/pebbles or whizz along the harbour. On bad ones, we can watch the waves in the warmth of the car.
Before we moved near the coast we assumed the sea would play a big part of our lives. We have let life distract us from what we have on our doorstep. Now we are going to try and let the sea do it’s job, appreciate it and let it calm us, revitalise our souls to help us deal with what life throws at us.

Just wobbly life

Sleep Glorious Sleep!

For years, as for many Spoonies and people with chronic conditions, a good night night sleep has been elusive. I count myself lucky if I have 4 hours straight. I struggle to get to sleep despite my body screaming for it all day and my eyes quite happily dozing on the sofa half an hour before. When I do drift off it is only a couple of hours before my brain cell wakes up whirling with ideas and thoughts. I can have brain fog all day but at 3 in the morning, it can remember all the things it has forgot to do, which need to be added to the neverending to-do list as well as planning all the things I could do. It has the knack of forgetting the body it is controlling (or attempting to) as it brims with enthusiasm for finishing degree and training to be something. It is indoctrinated with the philosophy of Mind over Matter so it thinks it can change the world. This idea is immediately shelved by the time by the time I am up and dressed. My brain cell  retreats back into it’s fog like state for the rest of the day.

When I was off my magic yellows for tests, I discovered the joy of a goodnight sleep again. Browsing through my draft folder I stumbled on this from that time:

“For the last 2 nights,I have slept!!!! Whoohoo 😊 if I could I would have jumped up and down with excitement as well as dance around the kitchen to Chris Evans’. It wasn’t just I slept through the night and more than 4 hours, I woke up refreshed. It was an amazing feeling! I felt awake and my brain was alert. I felt human. I didn’t even mind, I had spent the night, in my dreams, trying to convince my family they needed to collect the  potatoes I had deserted at the top of a steep hill because they were too heavy.  It was all down to being off my yellow ones.”

Now as I am lying here with a snoozing dog and snoring husband next to me , I want to experience that again. I may not be turning into a pretzel as much but I miss that pleasure of a good night’s sleep and the wide awake feeling when everyone else can see it.

Just wobbly life

Going on a puffin hunt!

 

#puffins #BemptonCliffs #wobblylife #daysout
Going on a puffin hunt!

 

Finally, we managed to return to one of my favourite places -Bempton Cliffs! For years, seeing the quirky puffin in reality rather than in a book was on my wishlist so when we moved, I was delighted to discover a local RSPB reserve -Bempton Cliffs was visited yearly by these wonderful creatures. I wanted to see them last year but illness and life’s low points got in the way so taking advantage of a sunny day we trundled over.

 

#BemptonCliffs #VisitorCentre #accessibility

Since our last visit they have updated their  visitor centre and have made the walkways wheelchair accessible -yay! It makes such a difference. A previous visit ended up with a puncture on the wheelchair so we were wary about returning. It used to be a bumpy ride and tiring for hubby who had the great job of pushing me, maneuvering around stones etc. In contrast, this time it was a smooth ride on the paths which lead to  wheelchair spots on the viewing platforms so you can look over the cliffs. It works well and  makes life so much easier. The improved accessibility definitely increases the chance of returning on a more regular basis.

#BemptonCliffs #accessibility #disability #wobblylife Bempton Cliffs pathways  #BemptonCliffs #accessibility

The centre isn’t quite as easy to get around as the aisles narrow once you add people into the equation. There are sharp turns to manoeuvre to get to the shelves to browse but it could have a lot to do with my driving skills. Despite the amount of time, I use my chair or scooter, I still need L plates. On the plus side, the lack of browsing means my bank balance was happier.

#BemptonCliffs #wobblylife

 

The scenery is breathtaking, fresh air revives you while the sea eases your stress. Add in the sight of flocks of birds going about their business, you can’t help but feel grateful and content. You can’t say it is peaceful because the birds calling and squawking are anything but.

#BemptonCliffs                        #BemptonCliffs #accessibility

#BemptonCliffs #kittiwake #puffin #guillemot

Kittiwakes, gannets, guillemots and finally the elusive puffin were seen. They

make me smile, every time I see one. They look comical and resemble a child’s drawing come to life. At moments like that, I feel happy despite all that is going on in the world and the limitations being wobbly entails.

#gannet #BemptonCliffs      #gannet #RSPB #BemptonCliffs       #RSPB #BemptonCliffs #kittiwake

#puffin #BemptonCliffs

 

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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.

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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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.