Just wobbly life

Still wobbly but back to blogging for Dystonia Awareness!

 

Dystonia 2018 banner

I can not believe it is over 2 years since I last posted. It is Dystonia Awareness Week so I thought I would check in and do my part. Every little thing matters in the greater picture.

What has happened since I was last here?

  • As expected I am still wobbly and life is still up and down (many downs) and  I am trying to smile and appreciate the good things when I see them.  It mainly works or at least helps.
  • Bazil, my scooter is no more but recently Herbie has arrived to give me the independence I need and crave
  • My daughter is now 18 – eek! I feel old
  • Pip my dog is now six but still mad and lovely
  • The shed did not work the magic I hoped. I guess I was expecting miracles in hoping it would solve hubby’s depression and stress. It helps but life is still very hard being my carer instead of just a husband.
  • I have been focussing on book blogging on Duvet Dwellers Books
  • And trying to write a novel

 

What have you been doing?

 

As part of this year’s week of awareness, I have put a bear I made up for auction. He can be found here.

Bertie Bear front

More soon!

 

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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.

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

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.

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.

 

 

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!

dystonia, Just wobbly life

What a night, what a weekend!

Last weekend was definitely an “up” moment in wobbliness. Hubby and I went to see David Gilmour at Royal Albert Hall! The gamble of buying tickets so far in advance paid off – THANK YOU BRAIN!

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Buying tickets and arranging nights out have become a big no-no in this household.  Not only is money tight and not to be wasted, experience has taught us there is a high chance  dystonia or vasculitis will cause  the whole proceedings to fall apart at the last moment. Whether it is because of pain, extreme fatigue, spasms or hospital admissions.  As soon as my body realises I want to do something exciting and fun, it hatches up a plan to play up like an irate toddler having a tantrum. All the excitement you feel and hopes you have are smashed. You are left feeling fed up, angry, envious of those getting ready and enjoying themselves as well as guilty for letting others down. That is on top of wasting your money. Tickets for theatre and gigs not transferable or refundable.  Selling them online is near impossible as there is not much demand for wheelchair tickets. Nights out as a spoonie are organised with  precision not on last minute whim. I have lost count of how many nights out have been cancelled over the years.

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This time my brain allowed me to have a night to remember. David Gilmour is my husband’s hero and I wanted him to experience seeing him live again. We saw him in 2006 when my wobbliness was just a little wobble in comparison and I could  limp through London and the underground system. How things change.

The Royal Albert Hall was fantastic, the architecture fills you with awe and they provided disabled parking directly outside the door we entered. One bonus of being wobbly! No hassle of managing the wheelchair through the city and our sat-nav found it without a hitch (getting out of London was a different story but that did not matter). Inside the area was easily accessible and close, unlike someplaces that are like a rabbit warren to get you to your place. The seats gave a perfect view of the stage and what a show! David Gilmour was amazing and I feel so lucky to have gone to see him. I feel very grateful that my body behaved as well as it did. It did not matter my hands curled up and my brain could not work out how to get them to clap or stand when everyone else did – I was there and I can hold on to the memories to be recalled for a lifetime. #100happywobblydays

Now I have to work out how to convince my brain to behave for Christmas.

dystonia

PD or not PD: the results are back!

I finally got a letter from my neuro with the results of my recent DAT scan and it was all normal – YAY!!! It is definitely not Parkinson’s disease.

Me – if I could still dance around the kitchen

I can breathe a sigh of relief and that niggle in a box, never to be dwelled on again (hopefully). Though, I had got my head around it either way as it would not change my meds or current daily life, my main worry was the risk of dementia*. More than the deterioration of  physical abilities, losing myself and recognising those I love was the scariest scenario. Even at times when I can not move and feel trapped in my own body, I am still me! I can still think my thoughts, dream my dreams  and love all thing I love until my next dose. To lose that is my ultimate nightmare. With the knowledge my brain cells are there, just not behaving means I can stop festering  on that thought in the middle of the night. I am sure it will come up with some other worries such as the genetic nature of DRD but they are for another day.

Today I am grateful for a normal result and magic yellow ones!

grateful

* My fear of dementia in association is common ( it gets talked about in the media) but it doesn’t happen to most people with PD and depends on many things. There is more info at Parkinson’s UK (who are great for support and advice) – Parkinson’s and dementia