Category: chronic illness

Monday Magic – Inspiring Blogs for You!

On By Claire Saul (PainPalsBlog)In Blog share, Blogging, Blogs, chronic illness11 Comments

How often do you have those weeks when life seems to have sped by and yet you’re not sure what you have done in that time?  I made a birthday cake with a robin theme – birds that is…..not Batman or Bristol City football club (me to hubby: “why on earth would I make a 7 year old little girl a Bristol City football club cake? She’s not a football fan and lives nowhere near Bristol” – he supported them as a child and still does!).  img_0349We went out for a family Chinese for hubby’s birthday as my brother and nephew were here – this birthday rolls on and on. I started another blog post – wrote the majority of it in fact, but never quite got it finished (one for later this week) – and I cancelled plans a couple of times. Oh….and I had several sleepless nights.

alarm clock analogue bed bedroom
Photo by Pixabay on Pexels.com

It never fails to amaze me just what sleep deprivation can do and when that insomnia is down to pain the resulting fatigue and drain is even worse.  Now I look back at the many sets of night shifts and then a period working continuous nights when the kids were young and wonder how I did it….much like any other shift worker.  The constant tiredness must be akin to constant jet leg, but without any promise of far off sunny climes!  I did get phone calls from school on more than one occasion back in the day when I had slept through my alarm and failed to pick my kids up from school.  It is one thing dropping off at 8.30am in your PJs and boots, but quite another thing picking up inn your dressing gown at 3.30pm!

monday magic inspiring blogs for you! (4)

 

My own blog may have failed to spring any new writing over the week, but I have managed to read some great posts that did make the light of day.  I have found some great new and very different bloggers on a couple of meet and greets (Danny’s Dream Big Dream Often and Esme’s Senior Salon) as well as some familiar faces.  So sit back, enjoy some you time and get stuck into some fabulous reads.

https://tinybuddha.com/blog/how-going-offline-for-10-days-healed-my-anxiety/

https://michelemorin.wordpress.com/2019/01/17/standing-on-the-edge-of-inside/

http://www.christafairbrother.com/my-word-for-the-year-courage/

https://pinkfortitude.com/random-acts-of-kindness/

https://italiangoodness.net/learning-how-to-cook-italian-food/perfect-risotto/

bowl chinese close up cook
Photo by Pixabay on Pexels.com

https://treesmendus.com/4-unexpected-tips-for-living-longer-with-chronic-disease-i-want-trees-please/

https://amykinsblog.wordpress.com/2019/01/20/dust-of-snow/

https://lifeattheintersection.com/2019/01/21/what-can-white-people-do-to-support-racial-justice/

https://everydayaspie.wordpress.com/2019/01/21/a-stranger-in-my-home/

https://spiritualdragonfly.wordpress.com/2019/01/19/growth-%F0%9F%8C%B1/

Please like, comment and share!

Have a great week,

Claire x

Monday Magic – Inspiring Blogs for You!

On By Claire Saul (PainPalsBlog)In Blog share, Blogging, Blogs, chronic illness12 Comments

We are already half way through January and in the PainPals house this means that a significant birthday has been celebrated by the hubby.  I couldn’t say anything in my last post as I had booked a surprise weekend away and he reads these blog posts!

monday magic inspiring blogs for you! (3)

For those of you who know me or live with a chronic health condition yourself, you will know that planning any sort of trip away is tricky.  The variability and unpredictability of symptoms and general wellbeing can make it difficult on a day to day basis – so it felt like a risk to book a trip away and I wasn’t confident enough to look too far afield.  We haven’t taken a holiday abroad since before I was disabled from work, and an annual holiday is a thing of the past for many reasons.  So it was with some trepidation that I plotted with the family and arranged a couple of nights away in a haunted 15th century inn on the coast in East Sussex.

Hubby had no idea!  We all managed to keep it a surprise and let nothing slip, only letting on the night before we left.  I had seen a review on the Mermaid Inn, Rye on Kerry’s blog Kerry’s Life and Loves and fell in love with the history and photographs of this historic hotel and town.  “How on earth will you manage on the cobbles and all those hills?” asked my mum, alongside a nagging little voice saying the same in the back of my head, but the bloodyminded side of me was determined to enjoy just a couple of days.  Sometimes it is so important to throw caution to the wind and let the chronic illness take a back seat, whilst “normal” life takes over! The inn is everything that Kerry promised – steeped in history, former residents include Elizabeth I, Shakespeare and Elizabeth the Queen Mother to name but a few, and the beams, low doorways and open fires are all other worldly.  The maze of tunnels beneath and around the inn were thought to have been used by smugglers and it is rumoured that several inhabitants are of the ghostly variety!  No strange happenings on our watch….

Hubby was in for another surprise as we were shown to our room – he was not going to be allowed to forget his special age with the enormous helium balloons that the young engineer had arranged.  With the low beamed ceilings they took up nearly the whole room….did I mention that he had also arranged for a bottle of champagne to be chilling?!

 

 

We had a wonderful meal in the restaurant and the staff were all friendly and accommodating – even if they did wonder why this woman who was struggling to walk had booked to stay in really old building with steep stairs and no lifts!!  I managed though….even walking for some of the day in Rye on Saturday.  A word of warning – Rye with its cobbles and hills really is not wheelchair friendly!

 

I still find it frustrating that I couldn’t manage a whole day out and we spent Saturday afternoon watching a film in our room, but pacing is the name of the game.  This allowed me to go out for dinner Saturday night – to a lovely new restaurant called The Devil in Rye, which overlooked the gardens and walls of the ancient monastery – and then we spent the rest of the evening listening to jazz in a neighbouring Champagne & Jazz bar.  So grown up, nearly sophisticated and great fun.

 

It is a shame that I then slept for long periods on Sunday and all this morning, but sometimes it is worth using up all those spoons in one go.  So Monday Magic is teetering into Tuesday as I catch up from my slumbers……but I have found some blogs for you (even one about Elizabeth I) and hope that you will sit back and enjoy!

https://www.radiantnubeginnings.com/smile/

https://helensjourneysite.wordpress.com/2019/01/09/wellbeing/

https://despitepain.com/2019/01/11/how-to-help-doctors-listen-and-understand-better/

https://invisiblyme.com/2019/01/10/12-life-changing-reads-2019/

https://playdatesparties.com/how-to-get-motivated-to-clean-when-overwhelmed-by-mess/

https://www.eclecticevelyn.com/include-yourself-in-your-schedule/

https://notesfromtheuk.com/2019/01/11/professional-hazards-of-being-a-virgin-queen/

https://christiehawkes.com/forgiveness-starting-2019-with-a-clean-slate/

https://wehavekids.com/parenting/Encouraging-Children-to-be-Independent

https://www.momfever.com/2019/01/a-positive-way-to-look-at-january.html

Please follow, like and share these bloggers! By the way we somehow managed to wedge the balloons in the back of the car, around the wheelchair, and they are now adorning the lounge!

Have a great week,

Claire x

 

My Guest Post “Claire’s Story” on Young, Sick & Invisible

On By Claire Saul (PainPalsBlog)In Blog share, chronic illness, Ehlers Danlos Syndrome8 Comments

To start the new year I am honoured to have had my health story featured on the blog “Young, Sick and Invisible”.  I do know, painpals, that I don’t strictly fall into the group “young”, but Bethany who writes the blog does and is a pretty inspirational young lady, so please have a look at some of her posts and her regular guest blogger post.

guest post claire's story pin

So if you feel like reading a bit more about my Ehlers Danlos Syndrome and chronic pain – and to see some very glamorous pictures – have a look here where I answer the following:

1. Who are you? Name. Engaged/ Married Any children/grandchildren? Give as much or as little information as you feel comfortable with.
2. What Chronic illness/illness’s is it you have ..? With a brief description on what it is/what they are
3. What did you love doing before you was diagnosed ..?
4. Are you still able to work (explain briefly what you do and if you’ve have to lower hours because of the illness/illness’s)
5. When did you first develop the chronic illness/illness’s (or think they started – what were the beginning signs)
6. Was the diagnosis easy or not ..? – also explain how you was diagnosed and any struggle you had
7. Did you search the internet looking for help ..?
8. Where do you flare ..? – describe a flare
9. Try and describe the pain (maybe even using a metaphor like (Raynauds is like being sunk deep into ice numerous times a day)
10. How long do you flare and how do they affect you ..?
11. How do you manage/cope with the flares ..?
12. What are your main triggers ..?
13. What medicines/supplements do you take ..? (Briefly explain ones you have tried but don’t/do help)
14. What is your biggest tip for those who suffer from the same illness/illness’s as you ..?
15. How has your illness/illness’s impacted your life ..? (Positively and negatively)
16. What has it stopped you doing ..?
17. How has it impacted on your friendships/relationships ..? (If it hasn’t then don’t worry about this question)
18. How do you stay positive ..? – what has your illness/illness’s allowed you to do or become (positive) for example have you become more understanding ..? You might have stopped work but learnt to spread awareness ..?
19. What is your hope for the future ..?

Guest Post: ‘Claire’s Story.’

January 1, 2019

–

Claire S.

Hi all, I’m Claire Saul, married to Duncan, 3 children aged 22 (boy),19 (boy), 16 (girl)

I have Ehlers Danlos Syndrome with POTS (postural orthostatic tachycardia syndrome) chronic pain & nerve root damage, migraine, gut motility problems, Raynauds

The EDS is a genetic condition of the Connective tissue – my body produces faulty collagen – so it can affect any part of the body that contains connective tissue.  Normal connective tissue is like elastic, EDS connective tissue is more like chewing gum. I have regular dislocations, particularly my hips and shoulders – I started dislocating aged about 8.

POTS is condition that affects the circulation on changes in movement, temperature.  When I stand up my blood pressure drops, meaning my heart has to beat quicker and harder to get blood round the body – but the circulation to the brain is reduced, causing me to pass out!  This can happen when I stand up, get out of the shower or when the weather is hot/sunny. My hands and feet turn purple as blood pools in them.

Before I was diagnosed I loved my job as a palliative care nurse, I loved socialising  & hosting dinner parties – dancing and going to yoga classes! I am not able to work – I was a palliative care nurse, but due to the chronic back and leg pain was medically retired due to disability.

EDS is genetic so I had signs from an early age – “knocked knees”, flat feet, dislocations, poor coordination, pain, headaches (prob early migraines) all before age 10, then during my teens dislocations increased, def migraines, fatigue, circulation probs (now realise POTS), Raynauds and “growing pains” IBS. Aged 21 a disc ruptured in my back and went into cauda equina (foot drop, severe pain, bowels and bladder not functioning) – had first back surgery. Chronic back problems – started here with nerve root damage

My shoulder pain was increasing and preventing me from doing some normal activities, so my GP referred me to the Hypermobility clinic at UCLH (Prof Graham’s clinic).  I was lucky that then a secondary referral from a GP was accepted – it has changed now and the patient has to be referred from another hospital consultant (tertiary).

The actual diagnosis was easy as I fulfilled so many criteria and my mum had gone with me so was able to give family history.  Although she isn’t formerly diagnosed, we can see that both she and my grandma when she was alive have symptoms.  I was given a diagnosis very quickly,  but no support or follow up – was told that my management needed to be local.

But the time it took to join the dots of various illnesses was not easy. I was finally diagnosed aged 42

To read the rest of my answers to Bethany’s questions visit Young, Sick & Invisible here!

Thank you so much to Bethany for having me as a guest blogger!

 

Monday Magic – Inspiring Blogs for You!

On By Claire Saul (PainPalsBlog)In Blog share, Blogging, Blogs, chronic illness8 Comments

monday magic 7th jan

Today is the last day of the school holidays in our house and the last week of the uni holidays.  So whilst the lovely girl prepares to return to school (in not the greatest of humour it has to be said but with a new haircut – 4 inches of her lovely blonde hair cut off!), the politics student is allegedly revising for exams and the young engineer has become an employer today.  I can’t quite believe that our little boy, the young adult who acts so daft at home, is now an IT entrepreneur with a business partner and an employee….I guess all parents must feel this at some time.

black and white connected hands love
Photo by Pixabay on Pexels.com

For our house, a sign that the new year is well and truly under way is when we reach the birthday of my best friend’s daughter on the 10th and hubby’s birthday on 11th January.  We went to the Pizza Express part of the 9th birthday party yesterday, deciding to skip the ice skating at Hampton Court Palace to avoid  the cold – and yours truly was the “best auntie ever” for the cake. This year I was tasked with “A Series of Unfortunate Events” for the theme, and fortunately my mob have all read the books and watched some of the Netflix show.  My lovely girl helped with painting the decorations on the sides and we were very pleased with our efforts, particularly when all the party guests recognised the characters.  This year is a big one for hubby (and me too later in the year – yes, 21 again) but more of that next week!

I wrote a long post for the Versatile blogger award yesterday and tagged various bloggers (who I thought hadn’t been nominated before) so I’m sharing one of each of their posts with you today. So grab a cuppa, relax and enjoy!

https://ginlemonade.com/2019/01/06/disabled-parenting-problems-this-might-become-a-series/

https://fancypaperblog.com/2018/12/01/the-band-when-theatre-causes-time-travel/

https://mydailyjournalonline.com/my-2018-journal-expectations-vs-reality/

https://debs-world.com/2018/04/08/what-ive-learnt-from-surviving-a-school-trip-that-went-terribly-wrong/

https://www.awalkandalark.com/exploring-hyogo-kinosaki-onsen/

https://www.ajourneythroughthefog.co.uk/2019/01/the-personal-hygiene-challenges-i-face-living-with-me-cfs/

https://www.brainlesionandme.com/embracing-the-warrior-inside/

https://mymedmusings.com/2019/01/07/little-things-do-matter-especially-when-living-with-chronic-illness/

https://trend-able.com/roll-on-face-masks/

https://www.sizzlingtowardssixty.com.au/new-year-evolution-not-resolutions/

https://kerrylifeandloves.com/2019/01/02/my-european-travel-wish-list-2019-edit/

https://pamelajessen.com/2019/01/05/chronic-pain-post-holiday-blues/

https://trippingthroughtreacle.com/chronically-strong-music-to-give-you-strength/

https://libertyonthelighterside.com/why-is-world-environment-day-important/

https://jaipurthrumylens.com/2018/12/08/jaipur-sunrise-winters-nahargarh-fort/

Have a great week,

Claire x

 

Old Year, New Year and being a Versatile Blogger

On By Claire Saul (PainPalsBlog)In Blogging, chronic illness, Ehlers Danlos Syndrome24 Comments

A few weeks back I was nominated for the Versatile Blogger Award by the wonderful Nikki, the Brainless Blogger.

versatile blogger pin

I met her on the “chronic illness” circuit – have a look at her site The Brainless Blogger here – but she also writes fantasy fiction and you can find some of her work under her pen name Lil Hamilton.  I think you will agree her own Versatile Blogger award is very well deserved.  Thank you, Nikki, so much for nominating me!

THE RULES:

1. If you are nominated, congratulations – you have been awarded the Versatile blogger award! 

2. Thank the person who gave you the award and include a link to their blog.

3. Select 15 blogs/bloggers that you’ve recently discovered or follow regularly. 

4. Nominate those 15 bloggers for the Versatile Blogger Award.

 5. Tell the person who nominated you 7 things about yourself. 

versatile-blogger-award

At the beginning of the New Year many bloggers reflect on the year that has just gone before and think ahead to set goals and/or resolutions for the year to come.  I thought that I would try to do something slightly different and incorporate my seven Versatile blogger answers with my New Year post!  So here goes…….

  1. I have a chronic genetic condition, Ehlers Danlos Syndrome, which means that rather than producing connective tissue that is elastic, mine is more akin to chewing gum.  It can affect any body part that has collagen/connective tissue.  I can’t remember a time when I didn’t dislocate one joint or another, or experience a pain free day but my first major problem came aged 21 resulting in major back surgery, nerve root damage and chronic pain.  Whilst a consultant picked up that I had a “syndrome” when I worked in his theatre as a student nurse, ironically it wasn’t until 20 years later that I was formally diagnosed at my old training hospital, University College London!
  2. I was a nurse in a former life.  It still hurts to say “was” rather than “am” – one of my greatest sadnesses to come with chronic health and disability has been losing my career and registration.  My passion was “head and neck” cancer nursing and later Palliative care – I was privileged to work in both specialities for many years.  2018 marked 30 years since the start of my nurse training and I was so fortunate to be well enough to spend a weekend with some friends from my nursing set, to visit the hospital and a few of our old haunts! img_1650
  3. I am a book worm! Remember the days before mobile phones using a torch under the bed covers to read? I was one of those kids! I still prefer proper books really, but will admit to reading nearly everything on my Kindle as easier for dodgy joints – but I remain a bit OCD with my books as I can’t stand for anyone to crease the spine let alone fold down a page corner! These days I write the odd review, belong to  book clubs and will read just about anything.  I go into 2019 pleased that I made my personal 2018 reading challenge (on goodreads) and hopeful that I can continue reading and reviewing.
  4. I am a mum to 3 young adults aged 22, 19 and 16.  This last year I have felt the most pride as a mum and also the most stress and angst as a mum to date – these kids don’t come with a manual and it definitely doesn’t get easier as they get older.  I guess my parents would agree!!  Let’s hope that the next 12 months are less of a rollercoaster….
  5. I love dogs.  All shapes, sizes and colours.  I am currently broody for a pup but our old (16 years) collie cross Samson is not in agreement with his mum.  He is my constant companion – a completely batty boy with special needs who we rescued aged 6 – and has seen me through the years since I was forced to retire.  He is completely in tune with my bad days and is very protective of me.  We also have a surrogate boy, the beautiful viszla Chester, who we have looked after for friends a couple of times a week since he was 6 months (Sam goes to Grandma on those days!) – we love him to bits.  Being at home, sometimes for long stretches, I couldn’t imagine being without a furry friend at my side!

    img_20180413_192555334
    My old boy Samson
  6. I make celebration cakes. Not professionally, but for friends and family.  I have always made birthday cakes for my kids, but when I had to stop working I started to play about with some more ideas and experiment with icing.  The strangest request was from a friend wanting a “Tesco” carrier bag for her husband!!  The icing is becoming more and more difficult though as my joints deteriorate – rolling out a sheet is nigh on impossible with a dislocated shoulder, so I’m trying to teach hubby!  Fingers crossed that I will be able to make a few masterpieces (ha, ha, ha) in 2019.
  7. My guilty pleasure is binge watching box sets – Netflix and Prime have become my best friends in recent years and I blame my daughter for the binge watching!  These days it is much harder to join in with family activities, so it is great to be able to spend time on the sofa with my lovely girl…..some favourites for us in 2018 were the finale of Sense 8, the German series “Dark” and “You are Wanted”, “Travelers” and “Anne with and E”.  We are both looking forward for the next season of Dark to be released in March!250px-darknetflixposter

There you have it – seven things about me, with a bit of looking back and looking forward thrown in.  Maybe I should have said that I don’t make resolutions – I’ve never been able to stick to them beyond the first week of January so years ago I just thought why set myself up to fail?!  I am happy if I can go into the new year with some positivity and hope!

Tagged Bloggers who are versatile and interesting – great if you take part, no problem if you don’t.  You are all still versatile!

Lorna at Gin & Lemonade

Orla at Fancy Paper Blog

Anindya at My Daily Journal

Debbie at Debs World

Josy at A Walk and A Lark

Jo at A Journey Through the Fog

Rhiann at My Brain Lesion and Me

Sam at My Medical Musings

Lainie at Trend-Able

Sue at Sizzling Towards Sixty

Kerry at Kerry, Life and Loves

Pamela at There is Always Hope Blog

Jen at Tripping through Treacle

Liberty at Liberty on the Lighter Side

Arv at Jaipur Thru My Lens

versatileblogger111

I could have tagged so many blogging friends here – some are other chronic illness bloggers, others I have met in groups or follow.

Enjoy and have a very Happy New Year!

Monday Magic – New Year Inspiring Blogs for You!

On By Claire Saul (PainPalsBlog)In Blog share, Blogging, Blogs, chronic illness, Happy New Year19 Comments

New Year’s Eve 2018….how did this happen?  The year has flown by.   I remember as a child hearing my grandmother and her sister saying that the older they got the quicker time flew, and I didn’t have a clue what they were talking about.  Now with each passing year, I understand them more and more – I even sound like them!

New Year Blogs

This last week of 2018 hasn’t gone quite to plan – just the usual faints, dislocations, pain and kids! – but does any festive season?  A highlight to kick off Christmas was a visit to watch the Bolshoi ballet performing The Nutcracker – Mum and I might have been watching in our local Odeon cinema, but the joy of live streaming meant that we were able to watch as events unfolded live direct from the Bolshoi theatre in Moscow.  We were blown away by the host who skipped from Russian to French to Spanish to English without drawing breath, I was exhausted just trying to keep up with her but the dancers were something else as they twisted and turned to the classic Tchaikovsky score.

This year a first in our house happened as Santa got fed up with waiting for the last of the youngsters to arrive home, probably getting into bed at the time that they would have been getting up only a few years ago and so the stocking delivery was made at 8am Christmas morning.  IMG_0311It comes to something when mum and dad are sat sipping coffee and waiting for the kids to emerge!  Another first was the grand outing of the new power wheelchair to make the trip to my parents’ for our Christmas meal.

There was much hilarity, particularly on the way home as my joystick skills left a bit to be desired……

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Here I sit on New Year’s Eve in my PJs watching Madness on the BBC and the fireworks along the Thames in London and although I may have had to miss a party, I can still raise a glass of bubbly with hubby (kids all out!), find some great blog posts to see you into 2019 and wish you all a very Happy New Year!

https://ifitbringsyoujoy.com/make-life-better/

https://ginlemonade.com/2018/12/16/the-christmas-cow-year-in-review/

https://mymedmusings.com/2018/12/09/loving-moments-of-life/

https://trend-able.com/cocktail-party-survival-tips/

https://a30minutelife.com/resolution-new-year-2019/

https://www.novemberschild.com/2018/12/13/dreams/

https://www.realmomlife.com/my-word-for-2019-happier/

https://retirementtransition.blog/2018/12/16/unrealistic-expectations/

https://www.mycupofcocoa.com/favorite-reads-2018-edition

http://liferedesign101.com/2018/12/18/how-to-get-a-week-of-happiness/

Have a great 2019,

Claire x

 

Happy holidays!

On By Claire Saul (PainPalsBlog)In Christmas, chronic illness14 Comments

Life has got in the way of blogging over this holiday period.  Between the Christmas preparations and festivities, and the odd body failure here and there, time has flown by……but I am sorry that I haven’t felt up to using the computer screen even to wish my blogging friends a Merry Christmas and missing a Monday Magic!

Now we are in the no man’s land period between Christmas and New Year, when no one can quite remember what day of the week we are at.  I have had so many posts in my head ready to write and not one has made it to the page – I blame brain fog, POTS and a dislocated shoulder and ankle….plus a house full of young adults, big shoes, the dog and mess!  More of their antics on Monday Magic tomorrow.

Here I want to extend very happy holiday wishes to you all….and a few pics!!

 

 

Monday Magic – Christmas blogs for you!

On By Claire Saul (PainPalsBlog)In Blog share, Blogging, Blogs, chronic illness, Monday Blogs12 Comments

The tree is up, new lights adorn the outside of the house and the Christmas cards are written.  The young engineer returned home and found glitter and sparkle adorning the house – much to his disgust….Mr Grinch!!  but then he has the cheek to criticise the lights in our hallway – too bright, too harsh – and presented me with a box of soft white lights to use instead.  Not a “I’ll change them for you, Mum” but rather a “put these up – they’ll look nicer”.  Needless to say the lights have not been changed.

IMG_2110
Not my house…..but on our estate

This weekend brought the return of the middle child – the politics student – home from university for Christmas.  An enormous suitcase returned on the coach with him and I have a sneaky feeling that his entire wardrobe is in there ready for the washing machine.  I wonder how quickly the clothes will make their way downstairs and into said washer?  Hopefully before the smell invades the rest of the house!

Hubby and I have worked our strategy for the Christmas shopping – early, local trips that don’t last too long and then home to collapse for the rest of the day.  I think that he will find himself doing more of the wrapping this year!  A couple of achievements have been that we managed my old school carol service last week and a family meal out last night with our kids, the eldest’s other half, mum and dad, and my brother and nephew.

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What is my eldest doing to make his cousin’s face glow like that?!

The preparations for Christmas can be stressful – the food, family dynamics, shopping, expense, parties, having enough hours in the day. If you read my post yesterday – a letter to my chronic illness – you may have some understanding that this stress can be so much worse when paired with health problems, physical and mental.  Amongst the posts this week are several offering suggestions to help cope with stress, to plan and to make checklists.  There is a fab post of creepy Christmas legends, some wonderful magical moments and some lovely Christmas poems.

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So grab an eggnog or some mulled wine, sit back and with a week to go enjoy some great Christmas posts.

https://www.navigatingthestorms.com/fun-things/holidays/stressed-out-for-christmas-excited-planning-helps/

https://www.brainlesionandme.com/christmas-analogy-for-spoonies/

https://www.achronicvoice.com/2017/12/17/holiday-checklists-spoonies-supporters/

https://www.awalkandalark.com/merry-christmas-blogging-friends/

https://fancypaperblog.com/2017/12/09/ten-ways-christmas-is-lovelier-than-last-year/

https://safemindspace.home.blog/2018/12/15/creepy-christmas-legends-and-customs/

https://debs-world.com/2018/12/16/my-25-day-countdown-to-a-happy-christmas-2/

https://justmuddlingthroughlife.wordpress.com/2018/12/04/christmas-stresses/

https://susielindau.com/2018/12/13/recapture-the-magic-of-christmas/

https://pamelajessen.com/2018/12/16/seasonal-poetry/

Please like, comment and share!

Have a great week,

Claire x

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

On By Claire Saul (PainPalsBlog)In Christmas, chronic illness25 Comments

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
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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