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

 

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#Depression – it can happen to anyone!

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I want to share a link to a blog post from a very talented young man who has just announced his departure from progressive rock band The Enid.  Please don’t switch off because Prog Rock isn’t your thing – it isn’t really mine either, but my husband has followed The Enid for years and so also the career of Joe Payne since he became their lead singer 5 years ago.  His talent is undeniable – his vocals would work on any musical theatre stage let alone a rock band.

My reason for sharing is that Joe has written a very candid post describing how life overtook him and before he really knew it, he had been taken over by anxiety and depression and breakdown.  I have described before how my husband suffered a similar mental health breakdown a couple of years ago, after a period of extreme pressure from both work and several life experiences.  There is still a stigma attached to any health issues that are related to the psyche rather than the physical – but this should remind us that if a young, talented and successful young man can succumb to depression, it really can effect anyone. Let’s all continue to raise awareness of the importance of mental health care – thank you Joe for sharing and very best wishes for your future.

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https://thatjoepayne.wordpress.com/2016/09/05/a-new-chapter/

Reflections and resolutions

The end of the year always feels like a time for reflection, doesn’t it? Or is it just a time for looking ahead and making those dreaded New Year resolutions, only to broken by Jan 5th!?  I really, really want to be looking forward for my own sanity and for those around me – but not before I reflect on this year.  Please indulge me……

It has been a tricky year in our house for a variety of health issues and the related monetary concerns that being unable to work brings.  It is almost exactly a year since Duncan was given the correct meds for his depression and was able to start on the long road to recovery.  At first, when he was so ill and unable to think straight, he was adamant he wouldn’t take drugs.  During my time nursing I cared for many patients and relatives who resisted antidepressants and we had the “if you had a headache you’d take a paracetamol; you have a chemical imbalance that just needs a little extra help to be put back to normal” chat.  At least when it was my own husband, not only had I this medical experience, but I had also been there myself just 2 years ago.  As a society we still prefer not to discuss issues of the psyche, whether our own or others – there remains a stigma around mental health problems.  Maybe this is part of the reason that so many of us feel an overwhelming need to refuse medication – feelings of shame, embarrassment, failure, fear, addiction concern, to name a few.  I remember feeling like a huge failure when I joined club Prozac and illogically ashamed.  It took several months before Duncan was convinced of the need for chemical help and then the first drug only went and made his symptoms worse.  But with great support from our GP and the correct drug, he has made progress.  We would probably both say, about each other, that seeing your partner in the grips of something that you have no control over is the hardest thing to witness.images (10)

Then one of our sons was also ill and this really did knock us for six, as we had never seen him like this before.  It emerged that he had recognised certain symptoms when reading articles with titles such as “Existential depression in the gifted and talented adolescent” – I was lost by the end of the first paragraph!  Happily with the right support all round,  we all have a better understanding and things are back on an even keel.  But our youngsters today never switch off.  They are constantly over stimulated as they rely on social media to communicate, and have a powerful hand held computer in the shape of a mobile phone on tap 24/7.  Overthinking has always been an issue in the very bright, but I wonder if we will see it increasingly becoming the norm?

My appointment with the specialist pain team at St Thomas’s came just in the midst of these crises.  I warned the psychologist that she had caught me at the end of a particularly stressful and emotional week, but she told me to describe everything from the start of my back problems.  “But that began in 1991 – should I really go back that far?” “Yes, please” “How long do you have?” Poor woman didn’t quite know what had hit her!!  This in turn led to my 2 week inpatient programme and subsequently the implant.  It all sounds terribly easy like this……

I have had some highs and lows over the last fortnight.  One real success was a trip to London to visit the student with the other teenagers.  We decided to brave the train rather than London Xmas roads, and I even had a member of BR help me to get into the carriage which made me feel about 90!  We had a lovely meal on the South bank and then enjoyed following our three offspring around the Xmas market. download (2) So nice to see them actually getting on.  In their black skinny jeans, I couldn’t help but compare the legs to strips of liquorice…..but I digress.  We walked to Trafalgar Square to see the Norwegian tree and then the kids went back with their brother to the student flat, whilst we made our way slowly back to Waterloo.  It wasn’t easy, my foot was dead and my leg kept giving way, but with the help of the stim (and Duncan half carrying me!) I did it – a far cry from a similar visit last year when we went to the theatre on the same night as the tube strike.  That was one very long trek and never has  Waterloo  bridge felt so endless – it took 45 minutes to get me across the bridge alone!  A couple of walks in our local park were made so much easier and even enjoyable as I was able to whack up the stim and counter the leg pain, even sitting outside for a hot choc.

But I have also learnt that the stim can only deal with so much!  As the weather has become colder over the last few days and the nights have been so windy, so my barometer body has played up accordingly.  My EDS has left me with extremely painful shoulders which dislocate regularly – Duncan monitors me when asleep to ensure that I haven’t lifted an arm above my head…and the weight then pulls itself out of socket!! The back pain at night has been reaching a peak and I actually fell asleep with the stim turned on, and a trip to our local shops became extreme as both the weather changed and my leg pain rocketed.  Even the stimulation couldn’t do battle with the nerve pain exacerbated by cold wind and rain – we couldn’t even stand upright – and the then familiar nausea and vomiting that follows when my body experiences large changes in temperature.  In this case it was stepping into our warm home!

For someone living with a chronic condition, looking forward to a new year can become something to dread rather than to celebrate.  At times the thought of living through another year in pain has been too much to contemplate even with the love and support of family and friends.  So this New Year, as others resolve to try that new diet, join the gym, do “dry January” etc., etc., I will continue to take each day as it comes.  As a family we will move forward together, continue to battle the intricacies of the benefits system, look toward Dunc returning to employment (albeit on a different level), the kids being teenagers(!) and for me to cautiously look to a year with some control over my body, that has been stolen by chronic pain, being restored to me with my stim.  I hope that we can remember that there is always someone worse off ……

Finally, after a very long post which I started on NYE, as you recover from festivities – I wish all my Painpals a peaceful and healthy 2016! download (1)

Panorama

imageHands up who saw Panorama on Monday night!  I watched it with my father in law by pure chance as I hadn’t noticed what the subject matter was to be.  For those of us living with chronic pain prescription pain killers are a huge part of our daily lives – and not just the opiates dealt with on the TV.  Believe me, some of the non opiates have some equally nasty side effectives and are just as difficult to withdraw from.

I remember well when the new man made drug oxycodone was first licensed for use in palliative care.  It was sold to us as the new wonder drug with fewer side effects and a reduced effect upon liver and kidney function.  However the nickname of Hillbilly heroin was starting to reach us and the alarm bells should have been ringing.  Very quickly the drug was being used for that notoriously difficult diagnosis – you guessed it, chronic pain – and it started to make its way onto the black market to join its cousin, heroin.  These days no American cop show worth it’s salts has a season go by imagewithout several references to “oxy”!

What about Joe Bloggs who visits his GP with sciatica? How will he be treated to help ease his symptoms? Diazepam – Valium- is always a good mainstay for short term use to reduce and relax muscle spasm, but what about pain killers?  The vast array ranges from low level opiates: cocodamol, codydramol, dihydrocodeine and the highly addictive tramadol; non steroidals such as ibuprofen, naproxen and diclofenac sodium; and the drugs found to help nerve pain such as the antidepressant amitryptilline and anticonvulsants such as carbamazepine, gabapentin and the gold standard pregabalin (Lyrica).  This must be prescribed by it’s trade name since various patents and licences have lapsed.  I have never known a drug to contain a list of possible side effects as long as that distributed with pregabalin – the manufacturer lists every body system to cover themselves! So Joe will leave his GP surgery clutching a script with probably suboptimal analgesia – that is not inadequate amounts, but rather not the best combination for Joe.image

So several years later Joe is finding that his long acting opiate (MST or OxyContin) is on the increase, the dreaded pregabalin is causing weight gain amongst other effects and he is taking higher doses of his short acting opiate (sevredol or oxynorm) for breakthrough pain. He is walking through the day in a fog after a sleepless night, with a brain and memory filled with opiate shaped holes, weighing 4stone more and now diagnosed to have chronic pain.  Oh, did I mention that he is also a fully paid up member of club Prozac by now?  Many of us living with chronic pain face depression and the need for “happy” pills.  More of that another time.  Alongside this Joe is attempting to show the DWP that he really can’t jump through the hoops that they would like him to, as he is no longer able to work.  Perhaps you recognise this weary, tired, depressed, overweight person who remains in pain?  To be continued…..image

How am I doing in Hereford?  I am being extremely well looked after – spoilt in fact – and I do feel guilty for not helping out.  We have had the same dismal weather making a damp squid of bonfire week as the rest of the country.  There have been a few bright lights and loud bangs for the dogs to bark at though!  I have managed to walk to the supermarket and met lots of neighbours on the way, including the retired gynaecologist (a Tommy’s man who objected to the pairing with Guy’s!) who made me laugh when he asked in a stage whisper how my bladder is!!  I continue to play with the voltage of the Scs as I need a higher stimulation in the cold, damp weather which is also aggravating the EDS – my shoulder slid out last night.  Does anyone else get paranoid that they will run out of voltage for enough relief?  How positional are other people’s Stims? I have found that if my pain is excruciating down to my foot, that lying flat on the floor increases the level of stimulation – I must speak to the CNS next week to see if I need reprogramming!image

Apologies for the odd posts today – problems with the iPad meaning I have lost the second half of the post twice!!