Category: chronic illness

Book Review from Being Lydia – “The Memory of Health”by Edie Summers

On By Claire Saul (PainPalsBlog)In Blogs, Books! Reviews & chat..., chronic illness, Invisible illnessLeave a comment

I want to share a health related book review with you written by my Chronic Illness Blogger friend Lydia over on her blog Being Lydia51+d1X4z47L._AC_US218_

“I have been given this product as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company. “

“The Memory of Health” by Edie Summers is a very interesting book. I think she had me from the start of the forward with “Dear Friend”. Why? Because I instantly felt this person wants to meet me where I am.

The 470-page book takes on many forms:

  • It contains excerpts from the author’s journal citing how her health is from day to day, etc.

  • The author has included some of her own poetry which gives a glimpse into how her illness comes out in her creativity.

  • There is some medical terminology to give substance and credibility.

  • And there is “the story”. All through the book, Edie talks about how we need to find and tell our story to truly heal ourselves. Her own story weaves in and out through each page, section, and chapter.

To read  the full review visit: Being Lydia

Lydia includes links to the author’s website and also for some special offers – the book can also be found on Amazon here: The Memory of Health

Disclosure: this post contains affiliate links.

The Problem with Pain Scales

On By Claire Saul (PainPalsBlog)In chronic illness

This is yet another great article tackling the difficulty of understanding and rating an individual’s pain.  Back in the late ’80s, one of the first phrases we were taught as a group of new student nurses was “Pain is what the patient says it is” and in the latter stages of my career as a Palliative care nurse, I witnessed many different descriptions of pain from a wide variety of people. However I have only come to truly appreciate the huge discrepancies in the different types of pain through personal experience.  Whilst I have always had pain from EDS and had my first back surgery in 1991 (in acute pain and cauda equina syndrome), it has been since my late 30s that I experienced chronic pain in my back and leg.  The further failed surgeries have exacerbated the symptoms of my EDS, and as I had to wean myself from using opiate medication in order to have a spinal cord stimulator, so the pain in joints and soft tissue was unmasked.  The irony in all of this is that I now would be a much better nurse – I think I was pretty good in the first place – and have a better understanding of my patients’ needs and difficulties explaining their pain.

So without further ado please have a look at this great post from occupational therapist & chronic illness sufferer Jo over at JBOT – Jo Southall

A critical look at the use of pain scales in occupational therapy, what pain patients really think. written from the dual perspective.

Throughout my Occupational Therapy training and my short but already meaningful career I’ve heard two key phrases in relation to OT.

‘Holistic’ and ‘Client centred’ .. even as students who struggled to explain exactly what being an OT involved we all knew that we had to practice holistically and be client centred.

So, we treat the whole person, taking into account mental and social factors and the environment, rather than just the symptoms of a disease. We do this placing the responsibility for the treatment process on the client, with the therapist taking a supportive role .

This is especially true when talking about persistent pain….

 

For the full article visit: The Problem with Pain Scales

3 OF THE BEST CHRONIC PAIN SUPPORT WEBSITES IN THE UK…from Barbara at Back Pain Blog UK

On By Claire Saul (PainPalsBlog)In chronic illness, chronic pain, Spinal cord stimulatorLeave a comment

Having suffered with chronic pain for many years, I know first hand that at times it can feel like there is little support out there for sufferers.  It was after using some of these websites myself, that I was inspired to start writing Pain Pals, to document my journey as I had my spinal cord stimulator trial for the chronic pain due to nerve root damage in my back.  My underlying chronic illness, Ehlers Danlos syndrome, has caused me even further deterioration and pain……meaning that I continue to look for support in day to day life.

This blog post from Barbara details some great sites that might be able to offer you or a loved one pain support:

My first choice has to be A Way With Pain – I was first introduced to this site back in 2013 after seeing an article on Julia Kelly a chronic pain sufferer, and founder of the charity A Way With Pain . In her Father’s words about Julia’s chronic pain,” Whilst the levels of pain and financial pressures have not changed, her positivity, self- confidence, and self- esteem are slowly returning. …..

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To read the full post visit :Back Pain Blog UK

8 Great Bookshops to Visit in Berlin

On By Claire Saul (PainPalsBlog)In chronic illnessLeave a comment

At a time when the ebook and internet shops seem to be taking over from the local book shop, I love this post showing some fantastic book shops in a capital city….Berlin

Currently….July 2017

On By Claire Saul (PainPalsBlog)In About me, Blogging, Blogs, chronic illness1 Comment

I found this link up party when visiting Roseann on This Autoimmune Life – she has written a lovely post for the party being co hosted by Stephanie on Wife, Mommy, Me blog.  It is a monthly link up where you are given 5 prompts to answer – Stephanie says it is the easiest blog to write…ever, and Roseann thought it looked like fun.

So here goes with what I am CURRENTLY doing…..

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Documenting – My daughter finally has an appointment with a genetics consultant tomorrow having been turned down by paediatrics and rheumatology for consultations.  So in the hope that she will be recognised as having hypermobile Ehlers Danlos syndrome and have some more help at school, I am documenting her issues to date…mainly pain, dislocations, dizzy spells, lack of coordination….and on it goes along with the strong family history from yours truly and my mum before me.  Wish us luck!

Accomplishing – my initial response is very little, but then I look at my post on this blog “Magic Monday – Inspiring Blogs for You!” and can say that I am accomplishing a regular weekly feature…..thanks to all of your amazing blogs.

Enjoying – my daughter and I are currently enjoying the American teen TV series Awkward – it really has become a guilty pleasure.  The traditional teen drama is turned on its head with irony, role reversals and humour…..we laugh out loud!

Reading – I am currently reading The Devil’s Claw, a proof copy that I will review for author Lara Dearman, Sapiens: A Brief History of Humankind by Yuval Noah Harari and The Versions of Us: The Number One bestseller by Laura Barnett (our monthly book club read).  I read masses and belong to a local group, Netgalley and the fantastic “The Book Club on Facebook” run by Tracy Fenton from Compulsive Readers blog.

Spending – I seem to be spending more and more time visiting different hospital consultants.  I really have gone from being a medical professional to a professional patient!  Good job I don’t mind hospitals – can’t say the same for the waiting room times!

The school holidays have begun, which whilst it means that I have more mess in the house, less food in the cupboards and more stress, secretly I do enjoy having the kids about – even the 21 year old who is currently on a summer internship – but don’t tell them I said that!!

Claire x

Taking Care of You – How Much Time Should You Spend On Your Well-being?

On By Claire Saul (PainPalsBlog)In chronic illness2 Comments

This really rings true for so many reasons with me and for my “healthy” friends too……

Christy B's avatarWhen Women Inspire

It’s a busy time, and we’ve got a lot to worry about. No wonder so many women are struggling to find a few moments each day to address their own well-being. Children, partners, pets, parents, friends, and careers all seem to come first. But even if you have an hour or so in the evening, doesn’t it feel a bit selfish to then indulge? It shouldn’t do, but for some reason, we tend to feel a little guilty prioritizing ourselves.

Why should you self-indulge? Your health and well-being are essential to others as much as it is for yourself. If you’re unwell, you can’t focus your strength and energy on family or work. You have to take time out to rest and get well again. But if you’re regularly taking the time to focus on your health, you’re actively reducing your risk of becoming ill in the first place.

What…

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Monday Magic – Inspiring blogs for You!

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

Good morning, it is a beautiful day here in South London and the beginning of the summer holidays.  The A level student – will have to change his name now – has been dog and house sitting for the last week, and the lovely girl is currently in her PJs painting…..she may be great at art, but she is so messy!!  There are paints, pencils and pencil shavings everywhere – the beginning of my lounge turning into an art studio for 8 weeks.

The rejected bull terrier!
At work….

She is currently working a matching picture of her grandparents’ other bull terrier (she didn’t like the first one that she started – pictured!!), has been asked to paint some canvases for the library in her old primary school (I think Harry Potter will figure!) and has a viking picture on the go for an instagram pal.  Oh, not forgetting the self portrait for her course work and the scrap book entitled “Blood, Flesh & Bones”.  She is taking some hideous pictures of family members hands, feet, elbows…..my dad told her she can’t afford his fee to strip off!!

Lucy self portrait
The start of a huge self portrait

As for me, well it has been a tricky week as you will have seen in my post about my benefits review, and I hate to complain about the lovely weather but it does send my circulation/POTS problems crazy.  I did manage a night out in London with Duncan though!  He told me we were going to a jazz concert in the Crypt of St Martins in the Field, Trafalgar Square – but when I saw some news feed that morning I had a sneaky feeling that I was actually being taken to the Formula One Live event in Trafalgar Square!  I wasn’t, but it did mean that the whole area was extremely busy and this was my first time in the wheelchair in a very crowded place which was quite intimidating.  The concert, with the wonderful Zena James, was fab though – a mixture of traditional and modern music jazzed up.  You should hear Zena’s version of Rag & Bone Man’s “Human”!!

Monday Magic

This week I have some posts on blogs that are all new to me and I have really enjoyed finding them.  I hope that you all enjoy exploring some new reads too…..so sit back with your cuppa and take some R&R with a new blog post!

https://needlintobenormal.com/2017/07/06/you-cant-go-back/

https://asecondlifeweb.blog/2017/04/11/idiocy/

https://headachehelper.wordpress.com/2017/07/16/the-what-not-to-do-if-you-have-chronic-pain-series-1-beat-yourself-up/

https://thelessonsoflyme.wordpress.com/2017/07/14/lizards-and-bunnies-and-cats-oh-my/

https://kathleenburkinshaw.wordpress.com/2017/05/03/why-did-i-choose-the-last-cherry-blossom-for-my-title/

http://www.bbhwithms.com/multiple-sclerosis-information-overload/

http://www.multipleexperiences.org/2017/07/15/what-i-would-have-done-differently-with-my-ms-diagnosis/

https://fromroopalismind.wordpress.com/2017/06/08/it-is-easier/

http://www.spinepainwarrior.co.uk/post/162956718101/coping-buying-equipment

http://www.lifeunplannedblog.com/how-to-be-less-of-a-hot-mess-and-rock-your-to-do-list/

Please like and post comments if you enjoy these posts – and for any C.I. bloggers who haven’t already, please check out The Chronic Illness Bloggers community, we are a very supportive bunch!

Claire x

 

 

 

 

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

On By Claire Saul (PainPalsBlog)In Blogging, Books! Reviews & chat..., chronic illnessLeave a comment

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

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

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

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Picture from Google

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

Normal or Difficult Problem? All depends which specialist I see……..the joy of chronic illness!

On By Claire Saul (PainPalsBlog)In chronic illness, Ehlers Danlos Syndrome, Invisible illness5 Comments

I had a Personal Independence Payment medical review this week (more of that another time!). My GP had requested a home visit, mainly as my dysautonomia/fainting is so much worse, but I was merely given another appointment a little nearer to home.  As it seemed near impossible to tie up the DWP who would have received the letter, with the review service (formerly known as ATOS) we decided between us that Duncan would try to get me there, but the GP was adamant not without all the letters that she had been sent recently.  Half a tree later we left her surgery – and this was just the correspondence since the beginning of the year.

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PAIN PALS BLOG

The day after the assessment, I received a copy of the letter dictated by my new rheumatologist to my GP.  Lovely man, but the person who he describes in this letter doesn’t appear to be me.  In fact she is completely at odds to the lady described a month earlier by the orthopaedic consultant, after a dislocation that required a trip to A&E!  The history of my shoulder pain was wrong, and apparently I have “a reasonable range of movement” …”with some discomfort” – ahem, I am hypermobile with very stretched ligaments & tendons so everything moves in every direction and I was actually referred for PAIN management.  Apparently my “other joints are normal” and I “really know how to manage my hypermobility syndrome”.

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Image saved from Pinterest

The ortho consultant said “she has been having pain in that shoulder for some time and was seen by my colleague 2 years ago…” and “on examining her shoulder it moves through a reduced range and her x rays show progressive glenohumeral joint arthritis, with a marked difference from 2 years ago”.  He goes on to say “Unfortunately Claire has a very difficult problem to solve. She has EDS….& has developed arthropathy within the glenohumeral joint”.  I was told 2 years ago that if I were 30 years older I would be whisked in for a shoulder replacement……this time the consultant could see a huge deterioration on x ray, but again explained that a shoulder replacement with my EDS is just not really an option as my ligaments & cartilages are so stretched.  A shoulder replacement would not stand up to recurrent dislocations!

Pictures from Google search

So, the thing that the two specialists agree is that I have a really good knowledge of EDS and both do recommend conservative treatment with physiotherapy – again!  The physio with expertise in hypermobility syndromes who the rheumatologist recommends is out of area; my old physio who works with the ortho consultant is no longer able to see me on the NHS as he is a Consultant physio……..

This is the reality of a condition that affects multiple body systems with no one person leading the care!  So now the search for a physio, who understands that I can’t be “fixed” but need ongoing rehab,  is ON!!!

Chronic Pain and Avoidance

On By Claire Saul (PainPalsBlog)In chronic illness1 Comment

This post from Julie puts into words the feeling of having energy sapped by everyone and everything when you live with chronic illness…..

juliefj's avatarThe second time around

Making it through the day with an overactive immune system is exhausting. You are trapped in a body that seems hard-wired to misbehave. You look and feel very different than you once were. You find many small things to celebrate. You purchase colorful new shoes because your feet and ankles feel better, you laugh at inane jokes just to feel alive. You hide your pain as much as possible so you can still seem fun and lively, this takes a lot of effort. Normalcy is an adopted attitude.

When you are in your twenties and diagnosed with a lifelong disease, it is a shock that is very difficult to accept. You have medicine bottles everywhere and are told to take this pill four times a day, the next pills you take eight of once a week, one pill morning and night, and another only at night. Disbelief sets in and you…

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