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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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.

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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.

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.

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

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

Juggling diagnosis

In less than a week,  I will have a test that could change everything and nothing at the same time. Ever since my London appointment, life has been off kilter and as much as I try to push it to one side and  forget it, it niggles. I went there with the expectation of discussing yellow ones, genetics and DBS but I came out with my diagnosis thrown up in the air with talk of young onset Parkinson’s Disease and a bit of functional neurological disorder (courtesy of a tremor induced by the fear of having to talk to another neuro and looming DBS talk – more of that another day :/). It feels like all the balls have been thrown up in the air and you are waiting to catch one but you are unsure which and when it will fall. It puts you on edge.It sends you straight back into limboland. Having spent years there previously, it was a place I did not want to revisit. Having a diagnosis –  a name – helps so much in grounding the mind. You can accept it, adapt and move forward to live your unique life. Being in limbo makes you question every little quirk and symptom. Is it DRD, PD or nothing at all but a glitch in the system. You begin to not to trust yourself. It drives you crazy after a while because no matter how you distract yourself, it doesn’t take much for the uncertainties to creep in. Evolution  really needs to design a mute button for thinking!
A DAT scan  will rule out YOPD, leaving DRD and decisions of whether to pursue more confirmation with lumber puncture and phenylanine loading test will be have to be made.These require coming off my magic Sinemet which is a horrendous and frightening prospect. Being older than usual with progressing symptoms I don’t fit the classic DRD criteria but with the dystonia and lack of tremor I don’t fit YOPD either. In my heart, I feel it is DRD with a twist, antagonized by vasculitis because of the diurnal fluctuations and improvement with sleep I experience.  The doubts creep in though with  freezing episodes, micrographia and voice issues among other things.  There is also an added twist in the tale with research coming out that GCH1 DRD causing gene is also linked with PD so you can be really unlucky and have both.
Ultimately, the test could alter everything and nothing. If it is PD, I will carry on taking yellows and carry on living in my own wobbly way with the bonus of at least people have heard of PD. They may not realise it isn’t just an old fogey disease but they have heard of it. This forms a platform for awareness campaigns like #1in20parkinsons. PD support groups are also available in most areas. If it is DRD, my wobbly life continues with a few more decisions to make with the bonus of may be by symptoms will reach a plateau.

Only time will tell which way my journey will go next ….

#DRD # parkinsons awareness #onein20parkinsons #dystonia

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

Wobbly Life

Really this should have been my first ever post as it explains why I am writing this blog;

My story is long and the journey to diagnosis for both vasculitis and dystonia was a battle and difficult. Not only for me but my family – watching my body progressively get worse with no answers. When the doctors told me I was fine, despite deep down knowing they were wrong, I tried to be ‘normal’ and learnt tricks to compensate for things I couldn’t do. If one hand struggled to hold the object I would use the other ( as a left-handed person it is amazing how much I use my right hand now by instinct), if standing I would lean against something, tremoring hands were hidden but it became harder to hide as my body fought back. It is hard to hide a voice which falters, misses words and refuses to say simple words in sentences and a body slowing down to sloth speed. I struggle even now , after years of medics saying “the results are normal so you are fine” and being left to get on with it, to admit to people even close family how I feel. I can be experiencing pain to the extent I am holding back the tears, trying to hide the fact my muscles are fighting each other attempting to contort my body into mind-boggling positions or I can be trying not to fall or be sick , and declare ” I am fine” when asked. Even times I have ended up in A and E with suspected strokes, I have declared previously I was OK, just tired.  This blog is so I am not hiding anymore. This is about how my life being wobbly and doinky really is. This is me!