Dear Chronic Illness – has anyone told you that Christmas is coming?

Dear Chronic Illness pin

Dear Chronic Illness,

Has anyone told you that Christmas is coming?

It is such a busy time of the year when everyone is supposed to be jolly, enjoying the madness of Christmas shopping, wrapping gifts and dressing for parties.  You probably don’t know, but food and drink play a huge role in the festivities – meals out with loved ones, chocolates and nuts, mince pies and egg nog, Christmas cake and plum pudding.  The television is overflowing with chefs telling us how to prepare for a magnificent feast timed to perfection.

Christmas dinner

Shop fronts and homes are transformed into a winter wonderland as decorations and lights sparkle.  The smell of a real Christmas tree invades the crevices of many a house, this one included.  The sights, sounds, tastes and smells of this time of year can be truly wonderful – glitter and glamour, carols and Michael Buble, cinnamon and nutmeg, mincemeat and mulled wine.

I want to enjoy it.  I want to take part and accept invitations to party.  I want to bake and give gifts to friends and family.  I want to feel joyful.

Christmas cake

You are my closest companion – with me 24/7, you know me better than anyone.  But the Christmas message doesn’t seemed to have reached you.

You hinder me and slow me down, meaning that I can no longer join in how I want to.  The invitations turned down at the last minute, the exhaustion after one trip to the shops, the increased difficulties dressing the tree and “decking the halls”.  The guilt at putting more on loved ones, being unable to host parties or bake up a storm.  The food once so tempting, now leaving only discomfort and tears.

You watch the weather and as the cold and damp creep in with the winter, you ramp up the chronic pain leaving my body struggling to leave bed, let alone leaving the house.  My hands fumble over Christmas wrapping, my back fails to keep me upright, dislocated joints reach a new level on the pain charts.

The expectation that Christmas should be “the most wonderful time of the year” is not the perfect mixer for brain fog and reactive depression.  Some days it is a toxic cocktail.

But as you are my constant companion, I must teach you about the festive season and in turn you must teach me how to live it with you cradling me.  I will try so hard to feel acceptance of you rather than resenting limitations that may be placed upon me.  When I feel you knocking at the door, I will learn to slow down, to say “no”, to pace myself.  My limitations will become my strength as I enjoy a slower, quieter but no less precious time with loved ones.

cradle
You cradle me

I know that you won’t be taking a holiday for the festive season.  I know that neither you nor I can guarantee how present you will be at the festivities from hour to hour, day to day.  But I do know that we must rub along side by side and cope in the best way that we can.  If an outing to a party is skipped or a visit to relatives proves too much, then so be it.  If it is impossible to throw off a low mood for festive cheer then so be it.

merry christmas greeting card
Photo by rawpixel.com on Pexels.com

We will wake together each morning and go to bed together each night.  Just like every other day, we will take the holidays as they come……but perhaps now that you know Christmas is coming, you could loosen your cradling arms just a little and give me some slack?

Merry Christmas,

Claire x

 

Stream of Consciousness – Becoming Chronic #SoCS #Chronic

There should be a Saturday on that title, but I am a day late which just about sums it up!!  But I had to join in this week, no matter how late, as the prompt was clearly written just for me.  I spotted Linda’s Friday prompt and it seemed to call out to me…..”Claire, Claire this is for you”, but the very thing relating to the prompt has been the same thing stopping me from typing, from letting my brain and my body work together, cohesively.

The prompt “Your Friday prompt for Stream of Consciousness Saturday is “-ic or -ical.” Find a word that uses the suffix “-ic” or “-ical.” Bonus points if you use both. Have fun!”

How many times do I use the suffix “ic” in the course of my blogging?  Just about every post.  Let me see – chronIC pain, chronIC illness, chronIC fatigue, chronIC bloggers, chronIC community.  But when does pain or illness become CHRONIC?  In fact what is it before this?

lit red and white candle lot on person s back
Photo by Ferdinand Studio on Pexels.com

The definition of chronic is “persisting for a long time or constantly recurring” – so how long is a long time? When does pain cease to be acute and cross into the chronic stage? How does a chronic illness earn that tag?

In a previous life, I was taught that a general rule is that when an illness has persisted constantly for 3 months or more, it can be thought to be chronic.  The illness may have slowly crept up on the individual, or gradually worsened increasing symptoms and disability.  With chronic pain, the pain itself often takes over and actually becomes the “illness” as the individual lives with it day in and day out.  Acute illness and pain is sudden and dramatic, but usually short lived in contrast to the never ending spiral of chronic conditions.

When does it become chronic.jpg

My own chronic dislocations, chronic pain and chronic brain fog have seen what can only be described as some comical situations over the last 48 hours (yes got the ical in too!!)……having literally gone down a rabbit hole in true Alice style, I shot out of my wheelchair and dislocated the shoulder(again…groan) and the opposite ankle.  In my bedroom that evening my ever helpful kids were taking a long time coming, so yours truly decided that hopping on the good leg was the obvious solution to get to the top of the stairs.  One failure of knee joint later had the young engineer, lovely girl and yours truly all collapsed in a rather strange heap……but why was I crying with laughter??? Strange things happen with these chronic problems!! Got to laugh though….

But did you know that Chronic can mean something else entirely?  I discovered quite by chance that it is the name given to a particular strain of cannabis……ironic or fitting I wonder, with the increased debate over the use of cannabis and CBD (cannabidiol – THC psychoactive element removed) for chronic pain and illness?

shallow focus photography of cannabis plant
Photo by Michael Fischer on Pexels.com

Answers welcome!

This post is part of Linda G Hill’s Stream of Consciousness Saturday. Click on the link to find all the other awesome posts in the comment section, and join in! https://lindaghill.com/2018/08/17/the-friday-reminder-and-prompt-for-socs-aug-18-18/18d9a-post-comment-love-badge

Daily Prompt #Explore – My Brain Fog

How can I explain to you my brain fog, dear friend?

Come with me and explore the opiate shaped holes in my mind

Move inside my skull, around my head and explore

The maze of cotton wool corridors.

Think of what you have just left behind you,

Explore around the next corner,

And then turn back.

But the fog has enveloped that last thought

And we are lost,

To explore no more.

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Drawing by Lucy, Zebra Girl (wasc.uk/zebragirl)

 

Daily Prompt : #Explore 

 

 

 

 

 

 

 

 

 

 

 

18d9a-post-comment-love-badge

 

Monday Magic – Inspiring Blogs for You!

Here we are at the start of a new week and time to explore some more blog posts.  This week has passed in a blur of hospital visits – as you know if you’ve read about my rusty old body int the last couple of posts! – and I must admit complete brain fog and cluster headaches.

The brain fog has caused much hilarity at times when my words have come out as something completely different to how they started in my brain.  Officially called expressive dyphasia, and commonly seen with strokes, I don’t think I’ll tell you how it is described in our house….I have experienced it once before when playing football at school aged about 12.  I had a head on collision with a friend, nearly knocked her teeth out, and then proceeded to become very concussed over the next couple of hours.  By the time I reached hospital, I couldn’t walk, speak or see – as the swelling inside my head started to subside, I remember being asked questions, knowing the answer but the words that came out were not connected to my brain!  I am sure that some family members would say that nothing has changed…..

Monday Magic - with brain fog

I’m just reading a science fiction book and came across this passage “There’s a small subset of people whose cognitive functions get scrambled in outer space.  Something about how the pressure change of the vacuum affects the bonds between molecules in the neurons of their brains.” (All Our Wrong Todays by Elan Mastai) I had a light bulb moment – “YES! This is brain fog – even if it is in space”.

But moving on – checking over my spreadsheet of Monday Magic posts, I am amazed to see that there have been links for an amazing 354 blogs and some of those have featured several times. What a fantastic number of inspiring and motivational bloggers there are out there, and I feel that I find more new blogs every week.  So please take some time, sit down with a cuppa and enjoy some great posts with a bit of a self care theme running through them – all spoonie mums, my mate Jen Hardy would be really grateful if you would answer her survey ahead of a podcast.

https://loveisconfusing.com/2017/08/16/three-steps-to-loving-yourself/

https://iterryblog.wordpress.com/2018/01/20/signed-and-sealed-with-love/

http://wherecomesthesun.com/practise-self-care-year/

https://fancy-like-that.blogspot.co.uk/2018/01/me-myself-and-my-cfs.html

http://www.chronicallyroyal.co.uk/2018/01/just-asthma-why-we-should-take-asthma.html?m=1

https://shannondianax.wordpress.com/2018/01/20/talking-about-my-mental-health-has-made-me-into-the-person-i-am-today/

https://www.jenhardy.net/take-survey-podcast-chronically-ill-moms/

http://www.sunshineandspoons.com/2018/01/25-products-that-make-life-with-chronic.html

https://kellyontherun.com/2018/01/16/single-not-pregnant/

http://www.fibrotofabulous.com/index.php/2018/01/09/why-i-restarted-meditation-and-10-reasons-you-should-do-it-too/

Heated Butter Knife
Who wouldn’t want a heated butter knife???  Find this on Sunshine and Spoons list!

Please remember to share some love by commenting, liking and sharing!

Have a great week,

Claire x

MS & Memory Issues: I’ve Remembered Why I Loved This Book from Meg at BBHWITHMS Blog

This is a great book review that had me laughing from Meg, the MS blogger at BBHWITHMS.

“A month ago, I saw a post on Instagram – about a book.  A book about woman writer that is living with MS.  Something about the brief snippet included in this post grabbed my attention and I clicked over to this writer’s IG profile and read some more.  I became more and more excited about this book  – to the point that I actually headed over to Amazon and ordered it right then and there.  This might not seem like a huge, monumental thing for most, but I don’t make spontaneous purchases online, even a $16.00 one.  I just don’t.  I add things to shopping or wish lists.  I bookmark pages, I even sometimes email myself a link as a gentle reminder that I am thinking about purchasing an item.  Each thing has to be thought about, the cost calculated into my budget and then maybe, if I still feel I want or need it after a few days or weeks, I will move forward with the purchase.  I don’t just buy things willy-nilly.  Yet that particular night I did, because something about Cory Martin and her story spoke to me and I felt I had to read her book.

It arrived…and I read it… in one day…and it was everything that I had hoped it would be.  She has written the exact type of memoir that I love to read.  She is open and honest and raw but does so with a humor that resonates deep within me.  This is someone else that gets the reasons to laugh and smile at this stupid disease. ”

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Picture from Google

To read the rest of this post go here I’ve remembered why I loved this book!

Friends reunited

It has been a busy week.  Exams, a school trip to Belgium, dinner out for Grandad’s birthday, SATS week at the primary school – and this is just the kids.  The boys kept enthusing about how peaceful the house was last weekend without their sister, although when she returned from the battlefields trip she said that they both kept messaging her!  The student engineer is half way through his end of year exams – this means only 5 more to go.  He keeps telling us how hard done by he is as all his mates Ch7FaaZXIAEn1N9only have 2 or 3, and all of his are maths – well, yes son, you are studying engineering!

For me it has been a week of catching up with friends, one whom I hadn’t seen for several years.  The other is a nursing friend – we started at the hospice on the same day and have since shared the same neurosurgeon for our backs and now the same physio for our different, but equally odd conditions!  She for an ankle injury, me for my shoulders.  I wonder if it says something about nurses of a certain age and the wear and tear on our bodies?!

I personally find catching up with old friends a mixed blessing when living with chronic problems.  On the one hand it can serve as a stark reminder of just how much said issues have impacted on life in the intervening years.  I remember a couple of years back when I went out with some ante natal friends for dinner – I think that I had undergone my first spinal fusion and had recently started using a walking stick (pink & sparkly!) – and one of the other “girls” kept saying to me that she couldn’t believe it and by the time we left the restaurant, she had become so upset by my condition that she was in tears.  I comforted her and told her not to upset herself!  My friend whom I hadn’t seen until last week has been through some horrendous health issues herself, yet she immediately said she could see that I have deteriorated.  Yes my physical condition has worsened, yet I haven’t experienced a potentially fatal condition – but my friend contacted me the next day to say that I am an inspiration to her for the way in which I have coped.  We have both undergone major life changes due to very different illnesses, both debilitating in their own ways.  My friend, if you are reading you know who you are – and you are the one who is inspirational to me!

On the other hand, I was told three days on the trot this week that I am looking so much brighter and more like the old me.  It seems odd when actually my mobility has been considerably worse this week and a dislocation of my right hip has left me with excruciating joint pain.  But my nurse friend immediately asked if I felt different for stopping some of the drugs – she recognised that the difference was in my head! The clearing of the brain fog…….she suffered terribly when on pregabalin and knows only too well the inability to concentrate, the feelings of drowsiness and disconnection from the world.  Whilst I am still taking 600mg pregabalin, I do feel that my memory is returning since stopping the opiates and combine this with some weight loss, hey presto….Duncan says he is getting his wife back.  Hmmm, not sure if that is a compliment or not……

What else has happened this week?   My change in profession – or now lack of – was brought home to me for International Nurses’ Day and Dying Matters awareness week.  But Duncan has taken the next step in a new direction this week as his hand made, bespoke audio speakers have gone to be reviewed by a hifi magazine.  He says it feels like sending his baby off – the thought of someone else disliking your creation before it has even really taken shape is scary.  We managed an evening out for the National Theatre Live encore screening of Arthur Miller’s A View from the Bridge. download (10) It was absolutely fantastic – Mark Strong and Nicola Walker headed a great cast, and the set was brilliant in its simplicity – spoilt only by two things.  The length, as I had failed to check in advance as any good disabled, pain ridden diva would do – only to find that there was no interval, and the fact that we were sharing the cinema with a group of 16 year old boys obviously studying Miller for GCSE.  Not sure which was worse….finding myself stuck in a very long performance, or sharing said performance with 16 year old school boys!

Finally, Eurovision!  That American got my vote – wait a minute, Justin Timberlake wasn’t a contestant.  So the Ukraine win with a cheerful song about ethnic cleansing and I wait for the 17 year old to return from a Eurovision gathering.  Enjoy your weekend!download (11)

 

Another Pain & farewell to brain fog

#chronic pain #chronic illness

Easter saw a different pain in our household, with hubbie experiencing the nearest to childbirth that a man can.  Initially he blamed back pain on a football club that he runs for 6 and 7 year olds, but as the intensity rapidly increased over a 2 hour period we both knew that something more was going on.  So I packed him off with my dad as chauffeur and the 17 year old as escort to A&E, with a strong hunch what was causing the problem.  Son was given strict instructions to keep in touch, ask questions and let me know what the doctors said.  Do you think he did?  Eventually I received a text with one word……MORPHINE!  What does that mean, Olly??

My hunch was correct and blood tests came back showing renal colic, or kidney stones in layman speak.  Allegedly the most acute pain and akin only to labour.  When I finally did speak to my dear son, he informed me that by the time his father arrived at casualty he was in agony and the initial drugs didn’t even dent it.  Oliver expressed his concern by reading his book!  The symptoms were classic(extreme pain at the edge of the lower ribs radiating to the side), except that there had been no grumbling warning signs, and subsided as the stone dropped into the bladder.  A scan the following morning showed clear kidneys, no abnormal blood tests and no predisposing factors – just one of those things!

My news is that I’m a week off the opiates.  HURRAY!  I’d be lying if I said that the last few weeks have been easy – in fact these lower doses have been harder to adjust to than the huge doses of last year.  Restlessness, stomach pains, upset stomach, increased pain, insomnia….need I go on?  The sleepless nights are unwelcome and painful, yet already my memory is returning and my desire to read and write.  The funny thing is with certain drugs that the brain slowly but surely turns to a cotton wool fog, but at first the benefits seem to outweigh the side effects.  But then the opioid shaped holes in the memory, the concentration and the well being start to turn the brain into a Swiss cheese.  I can only imagine that this must be a little what the onset of dementia feels like. My inability to think, to remember, to concentrate has stopped me from functioning normally and in certain school governance meetings I have felt just out of my depth.  This, combined with faints that may or may not be a type of seizure – hurray! – has left me unable to function as I want to.download

My GP was surprised when I told her my news this morning.  She is hopeful that I may also see some better bladder function return, but my poor guts don’t know if they are coming or going.  It will probably be a good 6 months before I am entirely free of oxycodone, so I have no plans to touch the pregabalin as yet.  But I do feel pretty proud to say that I’ve gone from 120mg twice a day to zero in 6 months…….I went to a book club last night and I’m even using Twitter.  Good riddance brain fog!images (1)