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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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

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…

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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!

Autumn, dystonia

Seasons change and so does the clocks

leaves pile free

Autumn is my favourite season with its stunning colour changes, crunchy leaves and crisp mornings. It inspires me to whizz through the village and countryside on my scooter allowing my dog to run through any piles of leaves. If I can’t kick them in the air, he can instead. The clocks go back so the nights arrive early. The evenings involve low lights, keeping warm by curling up in snuggly socks, reading whilst drinking cups of tea. The family comes together more as everyone gravitates to the warmth of the fire. Dogs included.

leaves free
What I always forget, until it happens, is dystonia hates the coming months. As soon as the temperature drops even slightly, the pain increases as muscles refuse to relax. My back seizes up and my hands ache continually. The slightest sniffle decreases my yellow one’s ability to control symptoms.  I generally become slower and every movement becomes harder. I am sure I have tortoise genes which not only make me slow but trigger the desire to hibernate until the Spring. I become bundled up with thermal clothes and layers upon layers jumpers. It is definitely not a fashion statement. Wheat heaties, hot water bottles and handwarmers become essential items. I have been known to have a hot water bottle on my knee as I go the shops on Bazil.
The clock change means we lose an hour. It is simple action and people happily talk about the extra hour in bed but dystonia has to protest. I have to be late taking my yellow ones so spasms creep in especially in my hands. An hour can make a big difference and once my body gets too low it struggles to catch up even dosed up. It has a knock on effect for days. My regular routine of clock watching at 4.30am, unable to go back to sleep becomes 3.30am so days seem longer and tiring. Less sleep means more symptoms and it becomes a vicious circle.

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I am so glad Halloween, Bonfire night, Advent and Christmas are dotted throughout this time to make things brighter.

dystonia, Just wobbly life

Seasons change and so do the clocks

leaves pile free

Autumn is my favourite season with its stunning colour changes, crunchy leaves and crisp mornings. It inspires me to whizz through the village and countryside on my scooter allowing my dog to run through any piles of leaves. If I can’t kick them in the air, he can instead. The clocks go back so the nights arrive early. The evenings involve low lights, keeping warm by curling up in snuggly socks, reading whilst drinking cups of tea. The family comes together more as everyone gravitates to the warmth of the fire. Dogs included.

leaves free
What I always forget, until it happens, is dystonia hates the coming months. As soon as the temperature drops even slightly, the pain increases as muscles refuse to relax. My back seizes up and my hands ache continually. The slightest sniffle decreases my yellow one’s ability to control symptoms.  I generally become slower and every movement becomes harder. I am sure I have tortoise genes which not only make me slow but trigger the desire to hibernate until the Spring. I become bundled up with thermal clothes and layers upon layers jumpers. It is definitely not a fashion statement. Wheat heaties, hot water bottles and handwarmers become essential items. I have been known to have a hot water bottle on my knee as I go the shops on Bazil.
The clock change means we lose an hour. It is simple action and people happily talk about the extra hour in bed but dystonia has to protest. I have to be late taking my yellow ones so spasms creep in especially in my hands. An hour can make a big difference and once my body gets too low it struggles to catch up even dosed up. It has a knock on effect for days. My regular routine of clock watching at 4.30am, unable to go back to sleep becomes 3.30am so days seem longer and tiring. Less sleep means more symptoms and it becomes a vicious circle.

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I am so glad Halloween, Bonfire night, Advent and Christmas are dotted throughout this time to make things brighter.

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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.