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.

Pin for later

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?

4

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.

Shoulder

My shoulder – dislocated

 

IMG_3236

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!

Advertisements

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:

IMG_1411

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!

Review of CBD Medipen – for chronic illness, pain, anxiety and well being

I came upon this review from Zec at Sat on My Butt blog and just knew that I had to share it with you – particularly those in the UK chronic illness community.  You might remember that I reviewed a CBD oil last year and I have been interested in trying something but was unsure what might be comparable (the oil that I reviewed was sent from the States)….this could be it!  Unfortunately we are currently funding our old dog’s drug habit  pain medication, and of course the family will vote that he comes before mum!! But this has been added to my list for Santa!

For the past three weeks I have been using the Medipen.

Medipen

Medipen aren’t allowed to make any medical claims about their product, but fortunately. nothing stops me from doing that!

So what is a Medipen?

A Medipen is a Cannabinoid delivery device that vaporises the Cannabinoids that are in coconut oil, I am and have always been a non smoker and I have no problem using the Medipen.

The vapour is very smooth and doesn’t make you cough and splutter.

The cartridges contain 1ml of Cannabinoids suspended in a pharmaceutical grade Coconut oil.

What are Cannabinoids?

The Cannabis plant is made up from 114 different compounds, the THC is the compound that gives the psychoactive or high sensation people get when smoking cannabis.

The Medipen cartridges contain CBD, CBDV & CBG which do not give those sensations but they have been proven to help people with a wide ranges of health conditions.

Inside our bodies we have cannabinoid receptors, they are part of the endocannabinoid system.

It is now believed that originally humans would have gathered wild growing cannabis to use as food and our bodies use it to help combat many ills and conditions.

Cannabis has now been bred to contain more and more THC to give people a high and that has led to Cannabis getting a bad reputation and becoming illegal.

Medipen starter kit

I received the Medipen starter kit that comes in a tin and contains The base of the pen that contains the battery and the brains and also a rubber tip on the end that works with touch screen devices.

It also contains a USB charger and a Medipen cartridge containing the Cannabinoids.

It really is foolproof, you screw on the cartridge, place the tip in your mouth and suck and that’s it,no on or off button or settings, it is ready to go at any time.

 

To read Zec’s verdict on the Medipen for his anxiety and chronic pain read the full post here: http://www.satonmybutt.co.uk/review-medipen/

I Am Here

I am here,

Do you still see me?

My heart is beating

Within my broken shell.

A mind is playing

The words of a lifetime

The will is surviving

To write a legacy well.SONY DSC

 

Am I succeeding?

Am I still growing?

In spite of a body

That creaks with pain.

My mind is creating

My will is still flowing

To harness experience

For a generation to gain.

 

I may be unseen

Not always present,

 

But can you still see me?

Here I remain.

 

Claire Saul

School Runs and Shopping Trolleys

My Monday Motivation to remind myself and others that no matter what, I can still make a difference!

Calling all Mums and Mums to be who have experienced #Fibromyalgia in #Pregnancy

This post comes from Melissa v Fibromyalgia

Pregnancy and Fibromyalgia Survey, Book and Page

After being disappointed at the lack of information about pregnancy with Fibromyalgia when I had Nu four years ago, I set about writing up my experiences and researching as new information became available.

On my Fibro Mama Pregnancy Diaries page I include my journals from my second pregnancy last year, which I edited and posted over this past year.

Now I’m writing a book!
On my new Fibro Mama Pregnancy & Fibromyalgia page I include the links to the ebook I’m writing as I publish the posts. When it is complete (and edited) it will be available for purchase, with extra content.
For now, could I ask you a favour?
Would you fill in a survey so I can add to the research available (limited) and my experience (two pregnancies makes me an expert in my experience not collective experience)?
Please take the time to visit Melissa’s blog,  her page that includes links to her coming book and the survey.

The need for a challenge to help myself and others #BBCRickshawChallenge

Oh my goodness, what have I done?  I think that I experienced a brain storm this week – well an even greater one than usual!

Two years ago I had only recently started this blog and was recovering from spinal cord stimulator surgery when I wrote about some inspiring young people in the UK undertaking The Rickshaw Challenge.  This is a project that has run for several years now and is championed by the BBC One Show – and particularly by presenter Matt Baker – in order to raise money for the UK charity Children in Need, founded by the late Sir Terry Wogan.  A group of young people who will each have a story, from illness to bereavement to overcoming adversity, and have all in some way benefited from the charity, cycle a route across the UK on the rickshaw as a team and fund raise along the route.

p05jnlk3

Image from BBC website

The strength of mind and spirit to succeed always shines from these youngsters every year.  I was caught off guard last week by a young lady called Sabah who is a member of this year’s 6 strong team.  She has had multiple health problems, including cancer, a kidney transplant and now is on dialysis – but she told the audience in a most matter of fact way that she would simply do her stint pedaling the rickshaw and then stop for dialysis.  I was a wreck by this point.  But the determination of these young people, and Matt Baker who cycles the whole route with them giving encouragement and support, has really got me thinking.

692d2f59accb4a77110f6748d1d6a976

Image courtesy of Google search

My own health has deteriorated over the last 2 years, and there is always an issue with chronic illness and the deconditioning of the body.  For us bendy people with Ehlers Danlos Syndrome it is really important to keep moving and as physically strong as possible – most of us will have exercises from physiotherapists and doctors.  But chronic health can become a vicious cycle (no pun intended) as the body becomes deconditioned due to pain, fatigue etc and then the deconditioning reduces the ability to “move” or exercise, in turn leading to further deconditioning.  Add a spot of dysautonomia into the mix – check out what it is here – in my case dizziness, low blood pressure, raised pulse, fainting (POTS) and you have a recipe for an increasing number of sofa days and Netflix!

couch

Image courtesy of Google search

So what is a middle aged (eek) girl to do in order to keep the mind and body working? Well, blogging and writing and generally being part of this fantastic online community does wonders for the mind alongside being a school governor and now chairing an alumni committee.  The body isn’t so easy, especially on high pain and flare days.  The spinal cord stimulator still helps to mask the leg and back pain from nerve root damage, but then for the EDS pain throw in some pregabalin, naproxen, cocodamol and the odd shot of oxynorm and the result may be manageable.  The changes in weather don’t help and I am still certain that my titanium spine reacts to changes in air pressure!

But as the young Team Rickshaw show us, there is always someone worse off and always someone to inspire and motivate us.  Sometimes it is important to set oneself a challenge in order to move from one day to the next when life is throwing rubbish about.  I am still learning that those challenges need to be smaller these days than a decade ago – pacing….no, I don’t really do that very well.

b6dd67a65081b1bf170fcdad345edf9d--aunty-acid-comic-book

Image courtesy of Google search

So back to my first question…what have I done?  Well I have set myself a challenge and signed up for the Virtual Rickshaw challenge…..I will be riding on an exercise bike from the comfort of my living room between now and New Year.  I’m not going to pretend that I will be burning up the miles and covering anywhere near the real rickshaw ride, or that I will even manage to pedal every day.  But if those youngsters can overcome adversity and put themselves out there, then this old bird can surely help herself ….and if I can raise a little money for Children in Need, then all the better!!

If you would like to visit my challenge page please find it here…..no expectation to donate, but it would be lovely to receive some encouragement and support over the next couple of months…maybe you could even share for me.  I will give you updates of my progress…..so with today as day one I managed 3 miles with only a neck vertebra and shoulder dislocated.  Not bad going for me!!  (Don’t worry folks, I am ok – good excuse to avoid the washing up!)  Onward and upwards…

Chronic Pain and the Opioid Epidemic – with thoughts from Chronic Mom, Shelley

Here in the UK we don’t have the issues around a GP agreeing to treat chronic pain or of insurance covering prescription charges in the same way that patients in the USA do.  I am not saying that our GPs always get it right when treating those of us with chronic ailments, and I believe that chronic pain can be treated back to front – that is drugs are thrown at it as a first line and then referrals for specialist pain clinics come too late.  I was one of eleven on an in patient pain course for assessment for spinal cord stimulator implantation two years ago.  We had all lived with chronic pain for years and this was the end of the road…..whilst we appreciated the teaching of coping mechanisms, self help and psychological support, most of us felt that this had come years too late in our treatment “journey”! We were all taking opioids and in order to qualify for a stimulator trial we had to come off or reduce this.  A daunting task!

Opioids

Any one living with chronic pain will have a stash of opioid drugs in the cupboard! A few of mine!!

 

This isn’t necessarily a criticism of our doctors – I know that they have such a limited time to see and get to the bottom of each patient’s problems.  Who saw the BBC documentary series following Dr Rangan ChatterjeeDoctor in the House“?  He had the luxury to be able to spend time with his patients – over a period of weeks he spent time in the home, became familiar with families and habits, diets, sleeping patterns, which all allowed him to dissect issues such as fibromyalgia, cluster headaches, chronic fatigue syndrome and more.  But this is not the real world and in waiting rooms across both sides of the pond, the queue of people needing help for chronic pain grows.

I mentioned prescription costs and in the UK we are fortunate, yes I did say fortunate, to have a fixed price per item and for those of us needing more than one drug per month, the prepayment programme saves money on these charges.  But we are experiencing constant cuts and patients are seeing their regular medication being withdrawn – I recently read a letter from a young father who has had his medication for rheumatoid arthritis stopped due to funding cut backs. However in other parts of the world patients must cover the full cost of drugs if insurance will not pay out – I take Lyrica/pregabalin and prior to the initial licence expiring, each month’s supply cost hundreds of pounds. The first time that I was prescribed it was at the private hospital attached to the hospice where I worked – aged 39 I had to ask my dad to pay as I didn’t have enough money with me to cover the private prescription.  Dad has never let me forget that he put up the funds to start my drug habit!!!  Such a joker….

Without further ado I would like to share with you Shelley’s post in which she discusses the use of opioids – both on prescription and illegally.  It is an informative read, particularly for those in the States.

People with Chronic Pain did Not Cause the Opioid Epidemic

A great deal of people are uncomfortable with how often I address the “opioid epidemic” and how it hurts people with chronic pain. I think this is because healthy people like to imagine that doctors can fix everything and if something isn’t fixed that it must be the person’s fault. Therefore if someone is in pain they aren’t really being denied treatment for it, they just aren’t trying hard enough. Unfortunately the reality for people with chronic pain is very different. It doesn’t matter if you’re the perfect patient, doctors will no longer prescribe pain medicine.

Even if you’re lucky enough to find a doctor who will treat your pain, good luck getting your insurance to cover your prescription or your pharmacy to fill it. These days a pharmacy can refuse to fill your prescription and then call your doctor and tell them they were wrong to give you this medicine. Opioid hysteria has gotten so severe that now we’re bypassing the judgement of doctors and listening to pharmacists instead. My opinion of doctors has never been high, but they go through years of medical school for a reason. While pharmacists are educated they are not doctors and are not familiar with individual patients. So why are we granting pharmacist’s more power than doctors? Oh yeah, everyone on pain medication is an addict.

Here’s the problem though, the opioid epidemic does not come from prescribed pain medicine or chronic pain patients. In fact 75% of all opioid misuse starts with people using medication that wasn’t prescribed for them. Also 90% of addiction starts in the teenage years when teens are also misusing alcohol and hard drugs in addition to pain killers.  Have we banned alcohol yet? Because 88,000 people die of alcohol related deaths per year and no one seems to care. Instead we ban pain killers even though less than one percent of those who were well-screened for drug problems developed new addictions during pain care. In other words, people with chronic pain are not the problem and were likely never the problem…….”

For the full post please visit Shelley at The Chronic Mom

One Liner Wednesday – My Bendy Body

images (4)

So……Life with Ehlers Danlos today meant opening the microwave and putting my neck out!!!

nf-badge-1linerweds-2017 (1)

#1linerWeds

From Linda’s One Liner Wednesday – visit her blog to see other participants’ one liners! https://lindaghill.com/2017/11/08/one-liner-wednesday-this-is-your-brain/

 

Monday Magic – Inspiring Blogs for You!

Good Morning and welcome to another week, another Monday Magic and some more great blog posts to explore!  Monday Magic

Here in England the schools return this week, much to my daughter’s disgust, and it feels slightly odd that we only have one child still at school.  I have almost missed the ritual trip out to buy school shoes and stationary, but my 15 year old doesn’t need me for this any longer.  Note that I have said ALMOST, not really missing queuing up with a numbered ticket in a branch of Clarks along with a bunch of harassed mums and boisterous children……however there are going to be some shopping lists I should think, ahead of the soon to be politics student going off to uni in a couple of weeks.  He is more concerned about his football season ticket and joining the Facebook freshers’ group than how many sets of bed linen and cutlery he might need. Who am I kidding? One set of bedding will last the term, won’t it – there is no way my 18 year old son will change it of his own accord, YUK!

Moving on swiftly, September is Chronic Pain awareness month and naturally with my background I will be mentioning it….just a few times!  This week also happens to be Fibromyalgia awareness week – which falls under the chronic pain umbrella – and Kat writes about this over on Chronically Composed – a Scottish journey with Chronic Pain.  The other posts I have found this week include a back to school guide, an emotive poem about depression (you can see I have commented on it), a young dad struggling with illness and surgery whilst raising his family, and a face that many of you are already familiar with – Danny from Dream Big who is currently concentrating on his Youtube channel and MS awareness.  Plus a great post looking at what is more important in blogging…numbers or friendship?

But to kick off I have kindly been given permission to bring you this fun poem from Anna on Healing Hugs and Hope blog……

An Ode to My Heating Pad

Oh, heating pad,
 your warm hugs ease
my aches and pains.
I need your healing squeeze
When my feet get cold,
or when I get one of my migraines.

From arthritis to subluxations,

you’ve nursed me through.
When I find my muscles tied,
I cuddle up to you.
It’s so nice and toasty,

with you by my side.

Due to my poor circulation,
I’m often very cold.
When my thyroid acts out,
you are too hot to hold.
Still, you know I’ll be back,
  it’s your gentle hugs I’m mad about.
If you love your heating pad so much, why don’t you marry it? Well, maybe I will….

A Silly Poem for People with Chronic Illness by Anna Ottlinger HEALING HUGS AND HOPE

So now time for feet up, cuppa in hand and enjoy some great posts!

https://chronicallycomposed.wordpress.com/2017/09/03/my-fibromyalgia-awareness-week-2017/

https://thezebramom.com/2017/08/24/back-to-school-guide-for-parents-with-chronic-illness/

http://lifesapolyp.blogspot.co.uk/2017/09/dialectical-behavioral-therapy-for.html

http://angelanoelauthor.com/inspiration-motivation/be-awesome-in-real-life/what-matters-more-numbers-or-relationships/

http://channongray.com/talk-mental-health-awareness-stigma/

https://thisreallifedad.com/surgery-going-knife/#comment-332

http://www.homeschoolinsights.com/2017/09/trials-of-chronic-illness.html

http://www.weareholistic.com/mental-health-care/might-call-depression/

 

I really hope that you enjoy these as much as I have – and had a giggle at the poem from Anna. It appealed to me as I really can’t go anywhere without my heating pad!  Please explore the blogs leave some messages and share posts you enjoy.

Claire x