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

 

 

 

 

 

 

 

 

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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.

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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.

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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

Dopa responsive dystonia – a snowflake condition

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Read  the majority of literature on this rare form of dystonia and it seems very cut and dry. You have dopa responsive dystonia, if  symptoms  are seen from a young age and when a low dose of  Sinemet is taken, a miracle occurs. Suddenly everything is resolved and normal life  resumes, as long as the medication is taken.When I took my first yellow one I was expecting to cartwheel down the lane half an hour later.
Scratch the surface and you discover, even  for those who have the classic form, life isn’t that simple after all. Sinemet is a treatment, not a cure and bodies are not machines. There are good days and bad. Times when the magic works and times it fails to live up to expectations. Colds, other bugs, tiredness, stress, hormones and even a bacon buttie can affect how well you can move.

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Dig deeper and you discover DRD is a snowflake condition. Everyone is unique. Some are similar while others seem completely different but ultimately, they are all snowflakes.  The majority are children when symptoms appear but others are teenagers and adults. Some people respond extremely well to low doses so mountains can be climbed yet others need more pills to climb up the stairs. Some DRDers have cognitive effects,  such as depression, alongside movement problems. There are those who have minimal symptoms when they are not dosed up while some  rely on sticks and wheelchairs. Some just need Sinemet and others rattle as they take their cocktail of drugs but everyone  responds positively to the tiny yellow pill!

Another thing which is prevalent in DRDers, young and old, is the appreciation of the little things in life that people naturally take for granted. The ability to walk across a garden to touch and smell a flower is incredible. Making a drink with ease feels like a miracle.  Everyday your body reminds you how precious things really are and how easy things can be different.  Every moment the magic of levodopa works is treasured. It can be good to be a snowflake.

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You can also follow me on Facebook https://www.facebook.com/pages/The-ups-and-downs-of-being-wobbly/798978946849129?ref=aymt_homepage_panel

Uncategorized

New year, new resolutions

2014 whizzed by unbelievably quickly. One minute it was Christmas 2013 surrounded by packing boxes ready for a house move and the next it was coming up to Christmas just gone. Time is strange like that, it can hurry by yet there are moments which drag on forever. It seems it is  never the ups that feel that way.
2014 has definitely been one of big ups and seemingly massive dips with lots of life changes along the way. The main one has been moving to our own house with garden 🙂 a place to put down roots and make new friends. It has given me my independence back with the help of my not so trusty scooter, Bazil. Together we can explore, visit local shop (still an exciting experience after many months, being effectively housebound for a couple of years makes you appreciate little things) and even see the doctor alone. Our new home has given us security and a place to be a family whatever life chucks at us.

Another amazing thing this year was the birth of our dogs’ puppies. Having 6 scurrying balls of fur made the summer a magical one and now we have kept 2 of them, every day is special. My dogs keep us sane during the lows as they are always ready to cuddle,comfort and entertain.

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The lows have been hard work and still ongoing as we head into the new year. Job insecurity and the major knock on effect on finances is a big one with my wobbliness and ill health being a major factor as well as consequences of it all on all the family. I have seen more doctors, A and E departments and outpatients than I definitely would have liked or anticipated especially in the last few months with ophthalmologists; cardiologists, rheumatologist and neurologists. It seemed never ending and as I look at the calendar for Jan it looks as like this will continue with the added joy of DWP medicals. More health problems mean more care is needed, more medication in my already overflowing pill pot with more side effects, more stress for family, more hospital trips requiring hubbie needing time off and struggling to keep up with it all. Something has to give and unfortunately that something is full time work. On the plus side, the lows make you focus on the important things such as a home, family and love, as long as we have those hopefully we can weather any storms.
For every bad there is always a good somewhere even if you have to look or wait for it. Maybe that’s why I like rainbows as they are a reminder of this. With the downs you discover who your friends are and find other amazing ones along the way.
This year my resolutions are;

  • To learn to pace myself in the hope of avoiding more flares and wobbliness
  • Enjoy our home and build on the foundation is has given us
  • Keep up  and develop with this blog for my sanity and maybe someone will find something useful from it
  • Appreciate the little positive things and part of that is to carry on with my other fledging blog focussing not on wobbliness but things I love especially books and reading   https://booksteaandsnugglysocks.wordpress.com/  and facebook page
  • Be happy and enjoy life x

I wish everyone a good New year and hope 2015 is full of love, happiness and good health.

Uncategorized

Supervalue batteries and the amazing yellow ones!

When I first started my wobbly journey I used to say my battery was running out. I would be ok but the more I did things the worse symptoms got. Pre-diagnosis, it proved difficult to get the medical professionals to take me seriously as I would sit in front of a doctor explaining my symptoms, how my foot would drag and  how I had to concentrate to put one foot in front of the other yet I could walk the few metres in their consultant room with ease. Along with clear MRIs this just added to their “it is all in your head” theory. If they took the time to watch me walk down the corridor they would have seen how things really were. One of the signs of DRD is how things tend to be easier in the morning and symptoms progressively worsen during the day.

 

I am like a little pink rabbit in the Duracell advert though to be fair, I doubt the producer would have included me in the shot as I couldn’t even compete the majority of the non- Duracell bunnies. I have been supplied with supermarket batteries which were chucked in the reject bin while the rest of the world has been supplied with Duracell. Every day I never know how much charge my battery has or its quality. They can work pretty well when I first use them, convincing myself and others I am fine but as the activity or day progresses I become slower and slower. Symptoms worsen, such as muscle spasms in legs, clawing of hands and disjointed speech, as the charge is depleted. Sometimes if I stop, rest and then start the activity I can eek out the charge which is handy if I get stuck in a supermarket. My legs decide they cannot take any more steps so I stop and pretend to be intrigued by whatever products are in front of me. This is fine if I happen to be in the magazine aisle but some aisles are very boring and the alcohol aisle seems to convince folk that this wobbly person in front of them is really a drunkard. Once I gain enough umph I can convince them to move even if it is in a very slow, uncoordinated manner. Thank God for trolleys to lean on!. What would really help  is for supermarkets to strategically place chairs at the end of aisles for customers to sit and catch their breath or prepare themselves for the next part of the shop. I am always torn when shopping as when I am first dosed up, I can walk abit and feel I should walk as much as I can but I know I will run out of charge, making everything hard and a potential nightmare. So I end up using Junior, my scooter, to preserve some charge for later and the ability to talk to the cashier. He also allows me to whizz down aisles I would not otherwise reach and I can browse rather than the shop being purely functional.
I am lucky I have some magic yellow pills (Sinemet) which act as a battery charger in people with DRD. This drug is usually given to those with Parkinson’s disease. It is a shame the pills ability to charge depends on the quality and charge of the battery. Sometimes I am topped up enough to do stuff, such as see friends yet at other times I only get enough to curl up and watch daytime TV. Unfortunately, the charge still runs out so the more I do the quicker I wear out. You would think by now I would have got used to things and be able to pace myself but I still feel like I am on a rollercoaster of symptoms . In reality, I am waiting for someone to supply me with a life time of Duracell batteries!