Still wobbly but back to blogging for Dystonia Awareness!

 

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.

More soon!

 

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!

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.

Meet the Author – M J Smith

From Under the Duvet

This month we were pleased to catch up with MJ Smith, the author of one of our favourite reads this year, Vascular Ehlers-Danlos Syndrome: The Journey Begins. This is a 5 star rated book and it deserves every star with its brutally honest, yet heartwarming account of being diagnosed with a rare illness and the consequences it brings. If you have been touched by chronic illness, you will identify with much he says. The relaxed and humourous style makes the book that could have been difficult to read, a joy to read in one sitting with a cup of tea.

M J Smith

About MJ Smith

In 2013, M J Smith was diagnosed with a rare life threatening genetic disorder that changed his life forever.  In his effort to gain knowledge of Vascular Ehlers-Danlos Syndrome (vEDS), it quickly became apparent that there was little in the way of help or…

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Crashing down with a bump!

 

After 3 amazing weeks of having a house full of laughter with in-laws,  things came crashing down when reality of chronic illness and limitations raised there ugly heads again. The rollercoaster of emotions in the family unit is the hardest thing to deal with.
Having visitors is spoon consuming and takes its toll physically but the fun moments and experiences make it completely worthwhile. They were understanding of the need for siesta, rest days and being slow.  The help they gave and emotional support for my husband was invaluable so a raw void has been left with them returning to their lives. You don’t realise how deeply you miss them and how much nicer life is with family close until you see them every day.

Loneliness is a difficult  issue to deal with and is rife in the Spoonie community and their carers. Solutions are hard to find when health obstacles, shyness and financial considerations stand in the way. It isn’t as easy as find a hobby or go places. Medication timing, fluctuating symptoms, accessibility and money restraints along with lack of self esteem make it a seemingly impossible  mountain to climb. We need to try somehow.  But for now we need to remember the good times of beach trips, sloe picking and dying hair purple as well as prepare for their visit at Christmas. The countdown starts here …

A calming day at the sea!

Sloe picking in time for Christmas!

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).

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.

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.

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.

What Facebook doesn’t tell you

Yesterday was a day of 2 halves.

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.

Treasures on the beach

 

Fast forward to 2pm

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

 

 

 

 

 

 

 

 

The Pledge

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.

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.

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.

Going on a puffin hunt!

 

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.

 

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.

 

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.

 

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.

                      

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.

          

 

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