Being mindful in the giving of health advice….I have a new role

Last week I took up a volunteering role as a Chronic Pain Advisor for the online community of a UK disability charity (Scope).  I was approached through this blog to take part and those of you who have been with me for a while will know that this is right up my street.  To say that I am deeply honoured to have been asked is an understatement.

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a new role

I have started to make some comments on the site, and it suddenly felt very real when an official title popped up after my name.  It has also made me consider the importance of just how we relate to each other and the advice that we give – as a health care professional, a volunteer advisor or indeed a loved one.  For each and every person is an individual and will come with very different needs – how often is this truly recognised by our health care professionals when seeing people with chronic conditions?

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At a recent support group meeting the importance for sensitive communication skills became very apparent.  Everyone in the group either had the condition or had a relative/loved one with, in this case, Ehlers Danlos Syndrome and had gathered to hear a medical professional, deemed an expert in his field, speak.  Spoonies, don’t shout me down, but I do worry sometimes that when a group gathers there can be a danger of frightening new members with horrific tales of hospitals and procedures, but also a competitive element toward who has which symptoms – I have written about this before.

It became increasingly obvious as this particular meeting went on, that a couple of comments made by the presenter were very upsetting to some group members.  I am certain that there was no ill will meant, but a point was made that this illness is not progressive, and the insinuation was that any progression in symptoms was down to the individual not exercising sufficiently.  Now there may be an element of truth in this – the need to keep moving in order to prevent deconditioning – but the way in which it was said made many in the room feel like they were not trying hard enough.  Picture yours truly sat in the front row in my wheelchair, and the message that I could have taken was that if I had done my exercises properly I could have restored my mobility and eliminated my pain.

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My shoulder – dislocated

 

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My neck – vertebra popped out of alignment

Of course, I know that this is not the case for me and I also know that I do work at keeping as physically fit as I can and have always done my EDS exercises.  Years of yoga kept me nursing for nearly 20 years beyond my initial back surgery!  I also know that I can be bloody minded in my determination to do something…..but on days when fatigue hits, or pain flares, or the POTS leaves me reeling with dizziness and unable to sit upright, I assure you I will not respond well to being made to feel I am not trying! (Family..hold your tongues now and forget the other meaning of the word).

So this takes me back to my original point – we are all individuals and whilst we might share a diagnosis and certain symptoms, our actual experiences will all be different.  Only this morning someone said to me that they appreciated that their own pain was nowhere near as bad as mine, but they would like some advice….But pain is subjective and we cannot compare my pain with your pain.  I replied that one of the first things I learnt as a student nurse nearly 30 years ago was “pain is what the patient says it is” and I still believe this.  Sadly a lack of time at appointments, a lack of communication skills to unpick a patient’s symptoms, and a lack of continuity to develop a trusting relationship between patient and medic, all fail to allow for true individual care of the person.  This can be made even harder to swallow when a sweeping comment is made about symptoms by someone who has never actually experienced them.

Envy

 

It is so important for us spoonies to feel that we are listened to and being treated seriously – actually I think this is important for everyone, particularly where health is concerned and I hope to be able to justify the faith shown in me by the charity.  The exception to this though is the couple of cases of man flu in our house at the moment, and their belief that their pain is worse than anything else!!!  This is where my patience wears thin!

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Monday Magic – Inspiring Blogs for You! #Valentine’sDay

Love is in the air…..well it is Valentine’s Day this week anyway, and I hope that love is in the air for you, whether it be romantic or otherwise.  February 14th has never been a huge deal in our house – I don’t think Dad has ever sent Mum a card let alone flowers.  I have had flowers and cards over the years…and the occasional meal out – but I think after a particularly memorable night, crammed between 2 other couples in a Chinese restaurant and listening to their conversations as we couldn’t hear each other, the consensus was better to stay at home. OLYMPUS DIGITAL CAMERA We might have passed this on to our kids having just mentioned it to one son, who looked at me as if I was mad even mentioning doing something to mark the day.  Funny thing is we are going out this year – hubby is taking me to a live RSC streaming of Twelfth Night….might even get a McDonalds out of it if I play my cards right (are they gluten free I wonder?!).

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Monday Magic - Inspiring Blogs for You!Valentines (1)

So fingers crossed the current flare of POTS symptoms have passed by Wednesday otherwise he will be taking his daughter or mother in law!!  Talking of POTS – that is postural orthostatic tachycardia syndrome, not the cooking variety – I saw the online community working at its best over the weekend.  A member of a POTS group put up a very distressed post that signalled an intentional overdose of drugs was being taken – the members of the group went into overdrive to find out where this person lived in the world, making contact with personal friends to check on them, calling on Facebook to help via the reporting suicidal thoughts, and sending message after message of support and hope.  I am so pleased to report that a message was posted last night saying that a stranger had called an ambulance, and the POTSIE was safely in hospital being assessed and truly appreciating all the good wishes.  No trolls, no nasty comments – social media at its best!nope

Yours truly has been sitting watching the winter Olympics and gasping out loud.  The wind!! How are those snowboarders doing it?  I have found the ice dancing particularly inspiring – it took me back to being about 8 and reading the Noel Streatfield novel White Boots.  That book changed my life and I was going to be an ice skater!!  Dad took me to Streatham ice rink in south London, I put one foot on the ice expecting to glide away – and, you guessed it, my derriere met with a very cold, wet landing.  Bang went that dream.  But some of those Olympians are inspirational – the young Russian girls literally float over the ice with such ethereal beauty, and the Canadian pair are just something else.  A human body really shouldn’t be able to do that!! (My bendy  friends will recognise this sentence!).

From inspirational athletes to inspirational blog posts!  This week I have added in some posts for Valentine’s – they are alternating with the normal mix of fab posts from some old  pals and some new friends – some spoonies, others not!  So sit back and relax with some great Monday Magic blog posts!

https://shailajav.com/how-it-all-began-15-years-ago/

https://legallyblindbagged.wordpress.com/2018/02/09/night-to-shine-my-two-cents/

http://thedestinydive.com/2018/02/05/valentines-day-date-ideas-that-dont-include-a-restaurant/

https://ginlemonade.com/2018/02/05/anxiety-us/

https://thimbleandtwig.com/crafts/make-rose-petal-bath-bombs/

http://penny-pennystreasures.blogspot.co.uk/2018/02/no-matter-how-long-winter-spring-is.html

https://www.tasteofhome.com/recipes/sweetheart-coconut-cookies

https://theinvisiblef.com/2018/02/12/overcomers-louise-webb-healing-body-turning-illness-something-positive/

http://suzyhomemaker.co.uk/valentines-day-decor-2017/

http://www.abalancedbelly.co.uk/need-talk-fistulas/

http://www.todayifoundout.com/index.php/2015/02/bloody-sexy-drunk-origin-valentines-day/

https://melissavsfibromyalgia.com/2018/02/08/move-every-day-and-some-neck-and-back-pain-yoga-links/

https://www.elitedaily.com/p/i-cant-afford-a-valentines-day-gift-so-instead-im-planning-adorable-surprise-for-my-so-8138638

http://ladyjaney.co.uk/5-blogging-goals-2018-dares-wins/

http://www.myrecipes.com/extracrispy/valentines-day-blood-orange-cocktail

https://bettysib1998.wixsite.com/young-sick-invisible/single-post/2018/02/05/f

http://www.lifehack.org/524580/100-quotes-about-love

https://dinosaursdonkeysandms.com/2018/02/06/dizzycast-ep-3-a-disclosing-dizzy/

https://laurenconrad.com/blog/2018/02/friday-favorites-275/

http://mummyitsok.com/blog/what-is-postnatal-depression/

Really share the love this week and share these posts, comment and make a blogger’s day!

Have a lovely week,

Claire x

 

 

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Monday Magic – Inspiring Blogs for You!

Good morning – just about at the time of writing – and welcome to February.  It is a freezing morning here and we have even had a few flakes of snow – yours truly plans to stay indoors for the day.  It must be cold as the lovely girl actually put on a coat when she went out to do her paper round this morning, and believe me this is unheard of!.  Then it took hubby nearly 10 minutes to defrost the car windscreen, which was just as well as the student engineer and his other half wanted a lift to the station, but they were both still in bed 10 minutes before hubby needed to leave to get the girl to school!!  I have never seen two young men get out of the house so fast!!

Never a dull moment in our house this week with umpteen trips to see different doctors.  Gastroscopy on Monday – “would you like sedation, Claire?” “err…do I look stupid? Of course I want sedation!!! I’m a nurse and I have seen these….” – orthopaedics on Tuesday,(will write a proper post), GP on Wednesday.  Dad was really disappointed that I couldn’t arrange anything for Thursday and Friday!!  But of course there was the Blue Moon to distract everyone…or not in our case as it was too cloudy to see….and for me it really didn’t matter as fatigue and brain fog as dense as those clouds took over.  Well that is my excuse and I’m sticking to it!pexels-photo-271897.jpeg

I wouldn’t want to leave out the middle child – particularly as we did receive contact from our politics student that wasn’t football related.  At 11pm Saturday night the ipad pinged and a message popped onto the screen – words to the effect “I have flu, I’ve thrown up everything I’ve eaten…what do I do?”.  Isn’t it amazing how these young, independent adults suddenly want their mummy & daddy for advice?  I mean what does he really think we are going to do from 300 miles away?  That makes me sound awful, and I’m not, honest – it just amused me. pexels-photo-416520.jpeg“Keep drinking….no, not alcohol, water!  Paracetamol….well ask a friend to go buy you some…..and don’t exceed the 24 hour limit!!”  We did speak to him yesterday and half his halls have flu, but I think he will survive.  I mean, I have had a shoulder hanging out again all weekend – what is he complaining about?? (This is tongue in cheek for those of you now wondering about my sense of humour – believe me, the son in question has the driest, darkest sense of humour around!)

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In England the 1st February was #TimetoTalk Day – recognising and talking about mental health and illness.  I hope that opening up about this health issue is not confined to one day only, and I have found some great blog posts that focus on different aspects of mental health.  There is also a cosmetics review, some tips for all us bloggers to help our writing, and tips to juggle a busy life.  Two posts that really jumped out at me this week: one is published on a new blog, Chronic Pain India – please read the story of Namrata, A Hashi Warrior; the second is something close to my heart as an ex NHS nurse – the decision of The Ealing Mummy to leave the NHS.

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Monday Magic 5th Feb

 

So give yourself that break from whatever you are doing, grab a cuppa, sit down and explore some fantastic blog posts!

https://avionneslegacy.wordpress.com/2018/02/02/staying-afloat-while-riding-the-waves-of-depression/

https://myanxietymatters.wordpress.com/2018/02/05/the-amazing-power-of-storytelling/

https://chronicpainindia.com/2018/02/02/the-winning-horse-a-hashi-warrior/

https://phayteaspulse.wordpress.com/2018/01/19/simple-guide-to-having-a-daily-blog-routine/

https://www.raisiebay.com/2018/01/dont-look-forward-look-back.html

https://orianasnotes.com/2018/02/02/review-urban-decay-naked-illuminated-trio/

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Image courtesy of Oriana’s Notes

https://chronicillnesstraumastudies.com/patient-medical-history-new-doctor-appointments/

http://honestmum.com/my-tips-on-juggling-work-and-family/

http://theealingmummy.com/the-day-i-was-interviewed-live-on-bbc-television/

http://butstillbreathing.com/hypocratic-oath-a-letter-to-all-the-doctors/

Please give some feedback and comment, like, share posts!

Have a great week,

Claire x

 

 

Monday Magic – Inspiring Blogs for You!

Monday Magic 29 JanGood morning on the last Monday of January!  Our week has passed in a flurry of parents’ evening, book club, Burn’s night celebrations and not forgetting our son’s better half being offered a great new job.  Funnily enough we haven’t had any news on the politics student other than a text about football scores – oh, the life of a first year student!

Parents’ evening was like a speed dating event…five minutes per teacher and when the bell rings get up and run!  Not sure the computer goblin automatically churning out slots on the online booking system had allowed for mass movement between the hall and the library, and he hadn’t allowed for a wheelie like me – although hubby just used the wheelchair to barge through other parents!  For Burn’s night we were greeted by a piper resplendent in kilt , sporan and full regalia.  How is it that one set of bagpipes can sound as loud as the  (what is the collective term for bagpipes – haggis? sporan? noise?) whole Edinburgh Tattoo?  It certainly had the desired effect of moving guests swiftly from the lobby to the dining area, but I think the ladies serving whisky must have been deaf and in need of a few drams by the time the meal was served.  Slightly disappointing this year was the lack of kilts….couldn’t persuade hubby into one!

Our book club read the new Emma Donoghue book The Wonder this month – review to come – and as usual we had lively debate from the actual book, to last month’s book again (The City and The City by China  ……..) which is being made into a TV series starring David Morrisey, to the current BBC TV series McMafia and Hard Sun.  Amongst the blog posts that I have for you this week is an online book club aimed specifically at those who would find it hard to get out of the house to attend one.  This could be spoonie friends, elderly, young/new mums….anyone who enjoys a good book.  Talking of which, I am taking part in a blog tour this week so will just drop a flier in for it – more info later this week.Review Tour

I am sitting here Nil By Mouth and have a hot date with a gastroscope this afternoon, so it does pain me somewhat to invite you to pick up your coffee…..but I will do just that and encourage you to kick off your shoes, sit down and enjoy some great posts from some lovely bloggers.  Maybe I will give the pilates a go whilst you down your caffeine….

https://survivinglifeshurdles.com/the-surviving-life-book-club/

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courtesy of Surviving Life’s Hurdles blog

https://www.midlifesmarts.com/theres-new-ism-plump-ism-and-its-rife/

http://achysmile.com/index.php/2018/01/25/daughters-migraine-school/

https://www.nicolefrancesca.co.uk/homepage/2018/1/22/i-am-the-1-10-statistic

http://millysguide.com/6-reasons-pilates-good-mental-health/

https://www.chronicmom.com/2018/01/how-to-deal-with-people-who-dont-believe-youre-sick.html/

https://reclaiminghope.blog/2018/01/26/whats-your-favorite-01-26-18/

https://www.trulymadlysassy.com/2017/12/19/the-gift-of-loneliness/

https://ribbonrx.com/2018/01/29/two-frightening-side-effects/

https://emlinthorpe.com/2018/01/22/being-blanked-made-me-smile/

 

Please comment, like, and share the posts you love.

Have a lovely week,

Claire x

Why Me? Well Why Not me? A Trip in the Tardis won’t be Changing my Lot!

Today I finished reading a science fiction book that has got me thinking – not my usual cup of tea but I have been asked to review it, so that will be coming!  Anyway the premise of the story was of life taking different turns and thus different timelines – the what if? or sliding doors scenario.  The main character finds himself with 3 different versions of himself due to time travel – the timelines all run from 1965 to 2016 and the world is a very different place in each one.  Which timeline is the correct one for the world? Is there such a thing as the “correct” one? How can one minute action change the whole future of the world? If we were all given different life timelines would it be possible to always make the right choices?

Life is full of uncertainties and every day is full of actions that will have consequences. How many times have you wondered after an event “what would have happened if I’d gone left rather than right?” It made me think about a recent conversation where a mother was saying that her poor teen child was always the one that things went wrong for, had the worst health problems, and suggested everyone around them should be sympathetic.  She said “When my teen gets upset and asks why does it always happen to me, I agree that it isn’t fair.”

Why Me

But is this the right way to answer?  Is Mum allowing the teen to always put the blame for every situation on to someone else? It may be better to stand up straight, shoulders back and tell the world “well I don’t like what has been handed to me, but I’m going to damned well get on with it”.  Over the years a powerful message that I learnt from so many patients was the “Well why NOT me mentality?”.  As you all know I can apply this to my health – I don’t have a fatal condition (neither does the teen!), but it is tricky to live with and I find it hard to think I may be like this for another 40 years.  I wonder if I hadn’t taken up rowing aged 12, or if I hadn’t become a nurse, or if I hadn’t fallen down the stairs in my second pregnancy and hurt my back again (hmmm….might answer some of the questions about son number 2!!), or hadn’t had a third pregnancy, or had genetic testing, or, or, or…..there could be so many different timelines if only something had been done differently.

But what a waste of energy.  The past can’t be changed and sadly I don’t yet have a time machine…..and even if Dr Who did offer me a spin in the Tardis, how much would it change?  Not my genetic condition…..I could think “Why me?”, but actually the bigger question is “Why not me?”.  When a close friend died aged 37 from breast cancer, I did ask “Why her?”…….but then look out the window and it could be anyone’s mother, father, brother, sister, friend couldn’t it?  If I could change our family timeline I would want to ensure that my kids hadn’t inherited EDS and that nothing bad would ever happen – but I can’t do that, so my job is to ensure that they accept it, live life to the full and for the moment.  If problems arise – the politics student’s migraines, the lovely girl’s dislocations and pain – then we will deal with them…..but by shouting “why me? it’s not fair….” is not going to help.

So, back to my novel – the main character found that every time the scientist invented a new machine, he also invented the “accident” of that machine; every time he was sent back to try to alter the timeline/revert to the original timeline, his actions would have a knock on effect….with unforeseen consequences.  I think I am actually starting to sound like my old physics teacher – for every action there is an equal and opposite action – or something like that!  So I guess for me and the teen, it means we have to get up, not dwell on the bad bits (sometimes easier said than done) and get on with the good bits.  But this is only one old crone’s ramblings!

Although if I’d had that time machine and could have made it so that I could join in at the SHS Burn’s night dancing last night…..equally I think hubby, Duncan, would be turning his back so that he wasn’t swept up to do the Gay Gordons!!

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Burns Night Celebration – picture from SHS Association

Have a great weekend!

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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

Tuned Up and About to Charge the Battery – the Pain Clinic

So I made it to the pain clinic in one piece – just!  The body work did its utmost to stop me and it was probably the furthest that I have travelled in my motability chariot (in time – it was rush hour travelling into London, you understand!) – so our arrival at St Thomas’ was surrounded by a cacophony of feelings in back, hips and thighs, with the right hip spluttering the loudest.

Fortunately parking is never an issue because the carpark is so blooming expensive – but, any blue badge pals out there – did you know that at St Thomas’ you are able to park for free if you show your appointment letter and you actual blue badge to PALS.  At Guys you can also park for free in the NCP carpark along the road by presenting your letter, NCP ticket and blue badge to security before you leave.  Might have saved someone a small fortune there!  What was an issue was getting into a lift from the basement to the ground floor – I mean, come on people, I am not sitting a wheelchair because I am feeling a bit tired.  I can’t actually climb the stairs!!

Tuned Up

The engine revived with caffeine and banana, we checked in to the pain clinic which faces directly opposite Big Ben and the Houses of Parliament – currently shrouded in scaffold.  I always forget just what a wind tunnel is created along this stretch of the Thames and Wednesday morning was no exception – good job I was using my wheels because the icy gusts would have tackled me easily.  As predicted the CNS was surprised and concerned when she saw me, but once I reassured her that the bodywork changes before her are down to the dreaded stretchy body parts, she went about checking the pain levels.  I am pleased to report that once her little box of tricks “spoke” to my implanted little box of “tricks”, it was established that my switching on and off, general usage of the stimulator and recharging is all scoring full marks! Hurray.

Next the tricky part.  Any chance of a retune?  This was no problem and the external box turned off and then turned back on the internal box…..jump starting the battery back to life and automatically altering the sensation.  The biggest difference is the feeling in the sole of my foot – it is difficult to describe, but the electrical pulses feel more rapid and “wider”.  The pathway of the pain through my foot is so specific that I could draw it for you to see, so the area that needs to be covered by the neurostimulation is very specific and so very specific electrodes in the lead on the spinal cord need to be active.  But how about getting some of that lovely electrical stimulation that knocks out the way my dodgy wiring sends perceived pain to my nerve centre – my brain – into my right hip and thigh??

Of course the proper response is that nothing can be altered for pains that haven’t been investigated – it wouldn’t be good to mask pain that is due to injury or a new illness.  But of course in this case one bendy chassis is causing wear and tear on the bearings and axles, putting the tracking off massively.  The biggest concern had to be keeping the pain coverage in my right side to the same level – it would be awful to lose the fantastic coverage i have.  But with a little tweaking she managed to give me a little sensation in my hip and if I lean back into the chair (or better still lie down onto the electrodes) the strength of the stimulation increases.  It doesn’t get rid of the pain or even mask it in the same way that it masks the nerve pain, but any little bit of relief this rust bucket will take!

So the bodywork may not have been replaced by a shiny, sleek sports model, but with a bit of fine tuning it is slightly more comfortable.  (BTW the beach buggy above was Dunc’s first car, and whilst sparkly, not very comfortable!). Thanks for all the good wishes – really appreciated.  Now I’m off to recharge my battery for a new week…..and in this case I assure you I am being literal, not metaphorical.  Should take me a couple of hours to complete!IMG_0817

(BTW: any St Thomas’ pain/input patients out there – the booking system was changed last year and the nurses are no longer allowed to book our appointments.  But since central bookings has taken over, quite a few of us have slipped through the net – hence why I had no appointment last year.  If you have a problem call them or email the nurses at their catchy new address:

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One Rusty Old Body In Need of a Tune Up! Trip to the Pain Clinic

Tomorrow I go back to St Thomas’ hospital, London to the Pain clinic and it struck me that this is where my new life as a blogger began.  Three years ago I was first seen in the Pain clinic for the start of physical and psychological interviews to assess my suitability for a spinal cord stimulator trial.  Just over two years ago I became the recipient of an implant.  So much has changed in this time.

The last time that I was seen – approx 20 months ago – I walked into the clinic and was able to report that the scs had made a huge difference to my pain but we made a decision not to try to link it in to my neuropathic bladder damage.  Tomorrow the clinical nurse specialists might be surprised to see me enter in my wheelchair, albeit a smart burgundy number, rather than on my sparkly walking stick. File_000 They might be shocked to learn that my autonomic nervous system has become increasingly worse since the implant onto my spinal cord – merely coincidence, I couldn’t really say – causing me to regularly have severe dizzy spells, faints and difficulty controlling my body temperature.  I did dislocate several joints whilst I was on the residential 2 week pain course so this wouldn’t be new, but the fact that my right shoulder is out of place more than it is in and the faints generally knock a few body parts out of alignment might raise eyebrows.

All in all I think we can safely conclude that the body is behaving more like that of an eighty something, rather than a forty something (no, my own kids….I have not yet hit half a century!).  So it feels like time for a tune up……last week it was the cardiologist – heart still ticking, although the pipework could be in better nick!  Saggy vessels were the delicate descriptors for the network carrying the blood of yours truly.  Yesterday it was the turn of a new consultant – the upper gastro intestinal – to cast an eye upon this beauty.  She deemed a camera necessary to check out the fuel pipes and investigate the pains and possible paralysis of the stomach. Something to look forward to.  Next week there is a trip to the bone man – yes Mr Orthopaedic Shoulder Specialist is going to look at the dodgy joints, check the scan which will show a classic dislocation and hopefully come up with a solution to glue the arm permanently in place and all with minimum pain.  I think there may be a visit to the rheumatologist on the cards sometime soon, but don’t want to be greedy.

Rusty body

So tomorrow I hope that I can have a tune up – maybe the frequency and bandwave of the stimulation increased and widened to cover my right hip and leg too.  At the moment it covers the chronic, constant nerve pain in my back, left leg and foot – the result of nerve root damage in the lumbar spine.  The pain in my hips is different and is caused by a mix of arthritis, recurrent dislocations and stretched ligaments/soft tissue.   But the whole host of chronic pain types are all as a result of my Ehlers Danlos Syndrome, literally a pain in the neck that has gradually overtaken life, but no use whinging as my kids remind me daily!  So when the nurses express surprise to see me so altered,  it won’t be because the scs isn’t working – would I have it done again?  In a heartbeat as it has given me  a way to manage some of the pain.

But I am hoping that with their little box of tricks, that looks very like a mechanics electronics box for tuning a modern car, the nurse might be able to switch on a couple more electrodes, alter the band width, tune in some good music and drown out some of this other bl**dy pain.  They might not be able to get rid of the rust, but will report back when I am wired for sound!

Monday Magic – Inspiring Blogs for You!

Welcome  to a bit of Monday magic – I hope you all had a great weekend.  We saw the middle child, aka the politics student, return to university yesterday and I don’t think it took too much preparation on his part because he hadn’t unpacked most of it since his return!  Yes, he has been living from the cases on the floor of his bedroom for the last few weeks, which have become increasingly full of chocolate wrappings from Christmas, crisp packets, new gifts, clean washing, dirty washing…you get the picture, not an inch of carpet to be seen.  Anyway hubby deposited him back yesterday with or without all that he needs and the next thing will be to reclaim the room and change the odour from Eau de Teen Boy to fresh air!!

The eldest continues to undergo job interviews from the various applications that he has put in.  Since when did the selection process become so complicated?  If you get shortlisted from your application, you firstly complete a phone interview, then online psychometric tests (“Mum should I say what I think they want to hear, or what I think might be right, or is there even a right answer?” “How on earth should I know? I’m just your mother!”) then in his case, a phone/skype interview with a live computer coding test…..and then after all this a face to face interview in an office, meeting a real person, drinking coffee and talking!  Wow!  He does have a final interview this week with a big American firm (so I’m told) – but I have no idea what they do, what he would do…..just hope something comes to fruition …..and if it requires a move out of home and away from my kitchen & bathroom, hurray(and then we will welcome him back for visits with open arms!!).

This week I was sad to see a couple of blogging groups’ admins have to post that group members were not following basic rules and were not supporting the spirit of the groups.  I really hope that this is the minority of bloggers and that the majority still look to support others, follow people because of a genuine interest and to interact.  Maybe I am being naive, but I hope not.  I have some old blog friends and some brand new bloggers to introduce here with a huge variety of post – from healthy eating (although the advice will not work with the student engineer!) to dealing with bullying to the hilarious post from Hot Mess Memoirs about giving back crying babies.

Daniel

Sit back, grab a cuppa and enjoy some terrific posts!

https://positivelyrachel.com/2018/01/11/living-with-overstimulation-and-hypersensitivity/

https://livingthechronicillnesslife.com/2018/01/11/engaged/

http://thehealthsessions.com/eat-vegetables-with-every-meal/

http://www.bbhwithms.com/i-used-cannabis-daily-for-my-chronic-pain-for-the-past-year-this-is-what-happened/

https://chroniclesofmyalgice.wordpress.com/2018/01/13/21-days-of-prayer-fasting/

https://invinciblefortitude.com/2018/01/11/7-tools-against-bullying/

https://hotmessmemoir.com/2018/01/13/new-babies-giving-back-cry/

https://www.health-hats.com/3254-2/

https://thenellybean.com/my-issues-with-the-word-influencer/

https://sarcasticbohemian.com/2018/01/12/how-to-survive-nightmares/

Monday Magic - Inspiring Blogs for You! 15 Jan

Please remember to support some fab blog posts by sharing, commenting and liking.

Claire x

Monday Magic – Happy New Year! Inspiring blogs to start 2018

Happy New Year, Pain Pals! Welcome to 2018….

Monday Magic - Inspiring Blogs for You!

I hope that you have all had a wonderful holiday season – I appreciate that for many of you this will have been hampered by health problems, for others it may be the first year since a bereavement, or just simply a difficult time – but we have to believe that there is always something positive, even out of negatives (hope my eldest is reading…..we call him Mr Glass half empty!).

I’m not going to do a look back at my year and bore you silly…..this week is probably enough.  Our week hasn’t gone exactly to plan – when does it ever? – with yours truly managing to fall off the sofa (I know, I know!) and putting out my shoulders, neck, ankle and hip in one foul swoop!! Of course this would be the night before we were due to travel to visit the in laws…..add hubby having a horrendous case of man flu (actually he has the most awful chesty cough and was banished to an empty child’s bed last night!) and the trip is off.  if you are reading, Dave and Wendy – I am so sorry! Kids are too as it meant any plans for New Year’s Eve parties in this house were ruined…..the teen girls due to gather decamped to another location and at the time of writing we have had no communications from the lovely girl! Plus one boy still old cold and snoring in bed here, having made it home.

Boxing Day

But two huge positives for me were managing a lovely family meal out on Boxing Day, and hosting the extended family the day after.  My brother’s family, the student engineer’s partner, and of course my lovely parents…..plus the drone that one very silly auntie bought her nephew for Christmas.  Well I didn’t think he would be flying it around my living room!!!

IMG_20171227_175844405

I have put together a huge list of New Year blog posts for you from some of my blogging family…..many from the Big Up Your Blog community, others from Chronic Illness Bloggers.  There are reflections, good wishes, goals & resolutions, poetry and don’t miss Phil’s hilarious Predictions from a legit Psychic!  Plus the first is a great blogging invitation on Smorgasbord.  Sit back with a glass of something good (dry Jan can start tomorrow!) and enjoy.

https://smorgasbordinvitation.wordpress.com/2018/01/01/happy-new-year-and-the-start-of-the-2018-series-of-smorgasbord-posts-from-your-archives/

https://cristianmihai.net/2018/01/01/a-new-beginning/

https://www.linkedin.com/pulse/prepared-give-your-100-2018-jez-cartwright/?trackingId=o8g10gFzhm1TEUaBd7y6nQ%3D%3D

https://mashaellman.com/2017/12/30/my-wish-for-you-2018/

https://medicalmysterymusings.wordpress.com/2018/01/01/reflect-and-restart/

https://www.navigatingthestorms.com/fun-things/holidays/making-new-years-resolutions-first-do-this/

http://shesnotsobasic.com/new-years-affirmtaions/

https://therightdirections.wordpress.com/2017/12/26/2018/

http://www.theressomethingaboutkm.com/the-circle-of-knowledge-2017/

https://thephilfactor.com/2017/12/30/2018-predictions-from-a-legit-psychic/

https://blushandbrewsblog.wordpress.com/2017/12/29/faves-2017-book-edition/

http://sportfitnessjourney.com/running-resolutions-newyear/

https://brainlessblogger.net/2017/12/31/my-new-years-resolution-compassion/

https://mistybooks.wordpress.com/2016/12/31/resolutions-be-careful-what-you-wish-for/

http://supermomhacks.com/lessons-in-parenting/on-new-years-goals/

https://wheelescapades.com/2017/12/28/best-nine-of-2017/

https://suzie81speaks.com/2017/12/18/smoke-and-mirrors-how-to-avoid-hating-your-blog-in-2018/

https://www.midlifesmarts.com/celebrate-new-year-scotland-style/

https://illness-to-wellness.com/2017/12/28/preparing-for-the-new-year-pick-5/

https://vinzpoetry.wordpress.com/2018/01/01/new-year-better-be-nice/

Please be kind and share some love for these bloggers with likes, shares and comments!

Happy New Year! 

Claire x