“Chronic Pain – The Day After…”from BeingLydia.com

Great article by Lydia and just how I feel at the moment!

LydiaA1614's avatarBeing Lydia!

painWhen I am moderately to overly active one day, I can pretty much write off the next one as a pain day where I am taking extra meds and being totally uncomfortable in any position.

Chronic pain wasn’t new to me as I had been dealing with a bad knee since I was 15 and my lumbar fractures for 15 or so years after that. But the bottom fell out when I was first diagnosed with fibromyalgia (1998) and then osteoarthritis (2006). In 2008 I had a full knee replacement that ended up with complications and another level of pain.

When I first started dealing with excess amounts of pain I had the habit of avoiding anything that made it worse (or not better). This was not productive (literally and figuratively) but I would find out in one of the many pain clinics I have attended that it is a…

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A Chronic Christmas – inconvenient illness for the holidays

Pain pals,

I’ve been a bit low on spoons recently – ok, almost negative some days over the last month or so.  Blog posts, social media & all things requiring thought or energy have been low down the list of to dos.  Over the years I have been able to soldier on through the pain and dislocations, but I can honestly say that my worsening POTS/dysautonomic symptoms have made me feel so ill and the current drugs have done nothing to help.  Tricky getting ready for Christmas then when also caring for a house full of teens/students “dying” with coughs & colds!img_20161228_093658718

Wouldn’t it be great if chronic illness gave us a break over the holidays?  When the slightest change in the weather didn’t send symptoms into flight & flare? Shame it doesn’t work like that, but instead can stop us in our tracks.  I have lost count of the number of times in recent weeks when I have had to cancel plans, let people down and cursed my inability to just get on with life.  POTS meant I missed my nephew’s birthday party – he wasn’t bothered as Uncle Duncan was much better at go karting and I had managed the tricky task of baking a Lego Star Wars cake.

The school Christmas fair and the Early Years nativity were also off the social calendar at the last minute.  My teen daughter was secretly delighted that I wasn’t well enough to drag her to her school Christmas concert!  I have cancelled coffee & lunch, rearranged and then the same again.  We are supposed to feel merry & jolly in December, or so we are told, but it isn’t always easy when your body is screaming at you.

But there have been memorable moments.  I have spent this year trying so hard to shift some of the massive amount of weight that I’ve gained (chronic pain, immobility and drugs…lyrica mainly!) and was just starting to get some of my old clothes on, when I find myself on a synthetic steroid that will cause my ankles to resemble an elephants.  Fantastic!  One of my “lovely” sons said that he hoped this would mean that I wouldn’t feel the need to starve myself over Christmas as I was going to get fatter anyway.  Think there may be a silver lining there somewhere…..Then there was the first occasion that I put on my newly acquired compression tights – an ebay “bargain” at £30, I kid you not as they retail at £90! – it was a 2 person job, with my lovely girl helping her poor old mum puff & sweat the tightest lycra you can imagine up her legs.  We were both exhausted and if ever there has been a time to feel light headed this was it.  Then I remembered why I had put them on.  I had a school reunion – an 80s decade reunion in fact – that I had helped arrange, and now I wouldn’t be able to go to the loo all day as I couldn’t get my tights up or down!!  30792624840_5e2ed23d47_o
Said day was a great success, friends showed up who I hadn’t seen since school and whilst being there with a wheelchair was hard to get my head around, I did it.  About 40 converged upon a local hostelry for further refreshment after the formal lunch. Less said about the following days the better….

 

 

The wheelchair has seen some action and helped with Christmas shopping, a meal out and dragging the dog for walks.  I must add here that none of this would have been possible without my spinal cord stimulator – whilst it does not get rid of my pain completely, I would be unable to cope without it.  I might have missed some events, but we did see a particularly entertaining nativity “Lights, Camel, Action” performed by the 5 – 8 year olds at our school – alternative name could have been “Strictly Come Nativity”. Of course the occasion when we forgot to stick it in the car, I managed a fantastic faint at the checkout of Waitrose supermarket.  I terrified a couple of young assistants who ran for water & debated calling an ambulance, but came round to hear Duncan going back to finish paying for the shopping and telling the shocked cashier “don’t worry, she does this all the time”! Well, a sense of humour is vital.  The wheelchair even saw a trip to parents’ evening at the A level student’s school, much to his embarrassment.  I did point out that it is me who has to sit in it – funny though that he finds it quite hard to get his head around me using it, and it was left at the door.  I’m sure that he wished some of his teachers’ comments had been left there too – mainly of the “needs to start working harder ” variety!!  He is such a jammy sod though that he received an unconditional offer just before Christmas – not a reason to stop working I hear myself state on a daily basis.

The final week of the school term arrived and Duncan was jetting off to Italy to meet with the design engineers at a fellow small audio company.  The original plan had been for us both to go – Audio Deva are an artisan specialist company designing fantastic turntables that Duncan hopes his new venture “Intimate Audio” will work with – but it15057249_634518260052328_1346051735637983232_n all happened rather quickly and reality was I wouldn’t be well enough.  So the student engineer found himself on a pre Christmas jolly to Genoa – just as well though as I’m not sure how useful I would have been when they stripped down a deck and rebuilt it. Daniel’s soldering skills beat mine.  This left me alone with the teens and I did enjoy the couple of days I had to myself.  I have to admit that I didn’t and couldn’t do much, but watched various cheesy Christmas movies and also managed to read some chick lit on the kindle – easier to hold when wrists are dislocating & painful!  We even hosted a small party for my book club friends.The following week Duncan went on his travels again with a trip to the in laws with the A level student, leaving me with my girl.  She worries about me but we did ok with no falls, and even managed some baking (cranberry & cinnamon donuts).img_20161124_193246307img_20161228_093523565_hdr

So it really has not been all bad.  I have missed writing and the support of my social media chronic pals, but I know that you all “get it”.  Christmas has been exhausting and I am looking forward to some R&R now, (earplugs needed with both sons at home).

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Breakfast Xmas morning – wonky cutting courtesy of Mr Saul

But the family have pulled together, some more than others (thanks mum & dad!), and we have come through the festivities relatively unscathed – they still can’t see when the toilets need cleaning though!

I hope that you have had a peaceful Christmas holiday,  Claire x

 

 

 

 

 

 

 

 

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The beautiful Italian home of Audio Deva

 

‘Tis the Season for Eggnog Donuts – from Smiles in the Trials

I have never made donuts but Lucy, the lovely daughter, has announced that she wants a baking day when she breaks up for the holidays.  So I think I might have to go shopping for a donut tin and have a go at this fun looking twist on donuts and Christmas – found on Amy’s website POTS: Finding Smiles in the Trials.

“Tom is strict about when Eggnog is allowed in the house.  You see, it doesn’t matter when it is available in the stores.  I started seeing it before Halloween, but it’s not technically …”

Source: ‘Tis the Season for Eggnog Donuts

eggnog-donuts

Great post on Sarah in Wonderland “7 Parts of my Chronic Illness that not everyone sees”

This post on Sarah in Wonderland is great – it will ring true with many of you I’m sure!

7 PARTS OF MY CHRONIC ILLNESS THAT NOT EVERYONE SEES

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“I’m always very open and honest about my chronic illnesses (or at least I try to be) but there’s still sides of my condition that not everyone is aware of. Why? Because my health makes me quite vulnerable and only people that live with me see me at my worst. At the moment I live with my boyfriend but when I was living at home, my mum, Pops and brother knew exactly what I deal with.

You never know what happens behind closed doors but I’m going to tell you a few things that appear often in my little world of pain.”  The full article  can be found here: 7 Parts of my Chronic Illness that not everyone sees

Book Review “My Husband’s Son” by Deborah O’Connor

Its been a rough couple of weeks and I’ve been unable to manage any writing – more of that in a life post!  But I’m trying to catch up with some of my book reviews in time for Christmas recommendations……

My Husband’s Son  by Deborah O’Connor

I was given a copy of this book through the Book Club on Facebook in exchange for a fair and honest review.  All opinions & thoughts are my own.

 

Heidi and Jason, a couple who are flung together in the most heart breaking of 29908515circumstances.  They have both experienced the nightmare of any parent – a child abduction – and the emotional & physical roller-coaster that accompanies it.  This is a book that depicts a psychological drama, with suspense & investigation, whilst also being sensitive to the human relationships of all the characters.

Heidi, a single mother, and Jason, a divorced father, met at a child safety conference to which they had both been invited because their children had been stolen from them.  They found that here was someone else who not only understood but shared a need to talk over memories to the point of obsession; someone who had a love hate relationship with sleep; someone who understood the need to keep looking back when others wanted you to look forward.  Within six months Heidi had packed up her life in Rochester to move north and in with Jason, and later they married.

Their individual stories unfurl within their joint story after Heidi spots a young boy in an off licence.  She is convinced that this youngster could be Jason’s son, Barney, who has never been found – but when she takes Jason to the shop he is certain that it is not his son.  “No matter how many years have passed……I’ll know him and he’ll know me.”  But Heidi is unable to put the boy from her mind and begins her own crusade to find out more about him.  As she goes “undercover” to investigate, she discovers secrets kept by people she trusts, relationships that are not all that they seem and that maybe a single life event does not have to define a person.  She is also forced to ask whether a parent will always instinctively know their own child.

I really appreciated Deborah O’Connor’s character development throughout the course of the book.  Heidi and Jason share a complex & often dysfunctional relationship which at times seems destined to fail.  At times it is difficult to see whether they have any connection beyond their children, Barney & Lauren, and there is always the elephant in the room – Heidi knows what happened to Lauren (no spoilers!) Jason does not recognize that Heidi is in turmoil – as she works her way deeper into the lives around the boy, her job suffers, relationship with family & friends break down and she finds herself empathizing and developing relationships in the most unlikely places.

The impact upon everyone touched by the cases of Lauren & Barney is enormous – from the parents, extended families & friends to the police officers investigating the cases.  It really is a heart breaking story with psychological twists & turns that I believe will see you in a very different mind set by the time you reach the staggering conclusion.  Is there always such a thing as the right course of action? Five stars!

 

UK Study to help chronic pain sufferers back to work

Researchers at the University of Warwick’s Medical School have just issued a press release detailing a study to explore ways to help people with chronic pain back to work.

They plan to work with both employers and the pain sufferer to assemble a package of care & support to re-enter the workplace.  Initially 30 work placements will be trialled with Serco, Coventry City Council & University Hospital Birmingham and if this is successful there could be potential for a roll out nationally.

Full details and contact for the trial can be found here: UK study to help chronic pain sufferers back to work

Review : Honey Colony Superior Cannabinoid Rich Hemp Formula for pain relief

Disclosure: “I have been given Honey Colony Superior Cannabinoid Rich Hemp Formula 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.”

 

For the last 6 weeks I have been trialing Superior Cannabinoid Rich Hemp Formula, an herbal supplement made by Honey Colony, a co-operative model based in USA that aims to empower the individual to be their own best health advocate. honey colony.com

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Cannabidiol (CBD) can be extracted from the cannabis plant and taken for health benefits, but without the euphoric feelings usually associated with cannabis/marijuana.  Honey Colony, who have a mission to empower the individual to be the best advocate for their own health whilst putting honesty back into the food supply, were looking for individuals experiencing chronic pain to assess the effects of CBD oil on their health and well being.

The science bit:

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   Hemp         ←                              →    Marijuana

Agricultural production                                                                          Pharmacological production

↓                   ↓                    ↓                                                                                 ↓                                      ↓

Fibre            Oil                Food                                                                          THC                               CBDs

Cannabis is made up of over 60 compounds, and the 2 in greatest numbers are CBD and THC.  The compound that people will be most aware of by reputation if not name is the THC – this is the part that causes the user to experience the high we think of in recreational use! However it is possible to produce a plant that has higher levels of CBD and lower levels of THC.  As CBD has no component to cause psychotropic changes it is useful for medicinal purposes. Must know facts about CBD

So now the health benefits:

Pharmacological reviews have claimed that CBD has the following properties

  • anti-sickness,
  • anticonvulsant,
  • antipsychotic,
  • anti-inflammatory,
  • anti-oxidant,
  • anti-cancer,
  • anti-depressant

(https://www.ncbi.nlm.nih.gov/pubmed/22625422)

Honey Colony has developed an herbal supplement incorporating CBD which they state

  • Balances the Nervous System
  • Balances the Musculo-Skeletal System
  • Promotes Mental Clarity, Focus & Memory
  • Supports Calm & Relaxation
  • Supports Healthy Immune & Stress Response
  • Supports Healthy Inflammatory Response
  • Provides Anti-Oxidant Support
  • Supports Healthy Energy & Stamina

 

What makes the Honey Colony Superior formula stand out?

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This herbal extract is a combination of CBD oil and 6 other natural compounds

  • Sichuan Teasel Root
  • Dang Shen Root
  • Astragalus Root
  • White Peony / Bai Shao Yao root
  • Propolis
  • Bitter Orange Peel

 

The Honey Colony site states “whole plants or mixtures of plants are more effective than than isolated compounds.

Full details of the ingredients’ properties can be found here: https://www.honeycolony.com/shop/superior-cbd-oil/.

 

Why should I try Honey Colony Superior Cannabinoid Rich Hemp Formula?

I have a genetic condition called Ehlers Danlos Syndrome (hypermobility type) which means that my body does not produce collagen in the normal way – normal tissues containing collagen stretch & rebound like an elastic band, whilst mine is more like chewing gum!  It affects my joints, causing pain & dislocations, my circulation (Raynauds and Postural Orthostatic Tachycardia syndrome – I pass out regularly!), my gut, my bladder & my nervous system.  Cauda equina syndrome after a lumbar disc rupture many years ago has left me with chronic pain in my back, leg & foot.

I have struggled to gain any real pain relief in recent years and have taken a cocktail of drugs including the opiate Oxycontin (oxycodone), various antidepressants used for nerve pain and the gold standard for nerve pain, Lyrica (pregabalin).  Last year I had a spinal cord stimulator implanted to help relieve the nerve pain and my hospital insisted that I wean myself off the Oxycontin. Whilst I’m pleased to be off the opiates, a downside has been a huge increase in my joint pain so having been asked to write a review for Honey Colony I felt quietly hopeful & excited!

The Product

The hemp formula arrived in the UK well packaged and in a bottle of good quality & appearance – dark brown to preserve the qualities of the formula from light damage, with a pipette dropper lid and a black & bronze label.

It is recommended that the product is taken 3 times a day, placing 4 drops under the tongue for 90 seconds – sublingual for fast absorption into the blood stream.

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The product is a strange sludge colour, but please don’t let this put you off!  I found the taste bitter at first but after several doses my taste buds had adjusted and I was able to detect the sweetness of the honey.  For me this was a similar taste experience to that with oxynorm elixir!  Unlike some other CBD oil products on the market which use olive or coconut oil, the Honey Colony Superior Rich Hemp formula does not contain a carrier and does not need warming to thin the consistency.

The All Important Question – Did it help?

I went into this trial with an open mind and without reading any other reviews for this or similar products.  I haven’t used CBD products before so I am unable to draw comparisons between this product and other CBD products on the market. The immediate difference that I noticed was to my sleep. Like many chronic illness sufferers, my sleep is at best disturbed and at worst non-existent.  The particular type of spinal cord stimulator that I have cannot be used overnight and so I have to switch it off.  Without the oxycontin my nights have become worse from both the nerve pain and joint pain.

My nights have definitely been more settled following a final dose of CBD oil before going to bed – the muscle spasm around my joints is improved and I feel generally more relaxed.  I can’t pretend that I suddenly sleep all night every night, but I think that during wakeful periods I am less stressed.

My pain in my joints & soft tissues is definitely helped by the CBD formula – the relaxed feelings come within about 30 minutes and last for several hours.  This allows me to perform some of the moderate exercises that are essential to keep me moving & to  ensure my mobility does not further deteriorate.   The jury is still out with regards to the chronic nerve pain that I have in my back, leg & foot – I plan to continue monitoring this alongside the scs over coming months.  The temperature has dropped in recent days and so my pain has worsened – this will be a really good test period for some improvement.

I am completely realistic after so many years with chronic pain and do not expect a “cure” but any relief is really welcome, so I am thrilled that I am able to feel more comfortable in my shoulders, hips and hands particularly.

Prices, Value & Comparisons

Honey Colony products are available for shipping to the UK, but cannot be bought from suppliers here.  So when calculating costs a shipping fee must be considered.

A 30 ml bottle of the Superior Cannabinoid rich hemp formula retails for $92.55, with a current conversion of £74.73 and various reductions are available for larger quantities (https://www.honeycolony.com/shop/superior-cbd-oil-3-pack/). superior-3pack-600x600 The current postage on one 30ml bottle to the UK at Priority International rate is $48.75 or £39.36, or first class rate is $22.75 or £18.37.  The exchange rate has altered since the Brexit vote in the UK and unfortunately for me makes the product and postage rate higher as the pound falls against the dollar!

The product does feel expensive, particularly as I am no longer physically fit enough to work and we rely upon disability benefits & are technically a low income household.  However having now done a little research and value comparisons online with other products, I can see that other CBD oils claiming to be of a similar quality are comparable – it is difficult though as I may not be comparing like with like.  My verdict is that for the results I achieved, this product does offer good value and I would purchase under different financial circumstances.

Any Special Considerations?

Honey Colony recommend that pregnant and breastfeeding women consult a doctor prior to using the product.

It is possible for the consumption of CBD oil to result in a positive drugs test for THC – whilst this should be well below legal limits, it must be noted by the individual (in the same way that eating poppy seeds can result in a positive opiates test occasionally).

My Conclusion

I have been impressed with the results that I have achieved using Honey Colony Superior Cannabinoid Hemp Formula health supplement whilst caring for my symptoms from Ehlers Danlos Syndrome.  Whilst I have not eradicated all my pain, I have achieved a better sleeping pattern & have gained relief for my joint pain.  When personal circumstances allow, I plan to continue using this product as part of a pain relieving programme.

 

DISCLAIMER: all opinions stated above are my own and based upon my own experience.  I am not authorized to give medical advice and am no longer registered as a nurse.  Please consult your doctor or seek medical advice before commencing any health supplements/medications.

Book Review “Calling Major Tom”by David M. Barnett

Book Review for Calling Major Tom by David M. Barnett

 

I was given a copy of this book from Netgalley via The Book Club on Facebook in exchange for a fair & honest review.  All views are my own.calling-major-tom

 

I challenge you, whether Bowie fan or not, to read this book without constantly having Space Oddity going round your head!  Thomas Major is a lowly scientist working at the British Space Agency when he finds himself in a position to be the first man to visit Mars.  The only thing is that it is a one way mission, but Thomas has his own reasons for wishing to leave his life behind & entering a self imposed solitude.  Back on earth the Ormerod family are struggling to survive – teenager Ellie & younger brother James living with grandmother Gladys whilst their father is in jail. Ellie should be having the time of her life shopping & partying with her friends, but instead her mother has died, she is working 3 jobs, caring for her brother & worrying that social services will split them if they realise that Gladys has dementia.

It was difficult to see how these two very separate story lines could interlink and work, but they dovetail together beautifully from the day that major Tom tries to call his ex-wife from space and Gladys answers the telephone.  Their lives are linked through the most unusual series of events which see Thomas Major helping the Ormerod family overcome financial and social issues…and even come to terms with a few of his own demons.

I loved this book – it made me laugh and cry.  The view from the space ship window is described so vividly that I could see it, and the personalities of the individual main characters brim with life.  The comedy that the writer incorporated into the character of Gladys turns a sensitive situation into a human one.  She made me laugh out loud.  The back story for Thomas Major unfolds and he is surprised to find himself changing as his relationship with the family on Earth develops and makes him re evaluate.  These people were very easy to identify with and I wanted to know what life had in store for them.  Mr Barnett makes the reader care.

A feel good story showing the best in human nature without over sentimentality, and how communities can come together.  An uplifting read that I give 5 stars.

Also on goodreads, Netgalley & Amazon

Reading,Cake & having fun – with #wheelchair & #chronic illness! #TBConfacebook

What a week!  Challenging for various reasons – the tilt table test, a cardiac outpatient appointment where the results weren’t available, an almighty faint where the dog failed to break my fall and I cracked my head on the wood floor, and I think along with dislocating my shoulder I may have cracked my collar bone.  This meant rolling out & covering a 12 inch square cake with icing one handed – tricky!!

But the cake played a pivotal role in my weekend.  Earlier this year, not long after being persuaded onto facebook by the younger Sauls (who now regret it, ha, ha, ha), I stumbled upon “The Book Club on facebook” and sent a request to join the closed group.  I had no real idea what it involved, who might be a member or the expectations on me, but I have always been an avid reader.14222267_10154600381361495_2740355709948892258_n  Living with a head full of opiate shaped holes & Ehlers Danlos brain fog has meant that I have struggled to concentrate enough to enjoy reading for  a couple of years.  This last year has seen me come off of opiates completely and start to read again – joining both a local book group and the facebook group has played a massive part in this.  I have discovered authors & genres that I haven’t tried before, I have found netgalley & started writing book reviews again, and I have completely taken over the kindles at home as I have flooded the account with books from the Book Club & netgalley. I have fallen back in love with words.

Back to the cake then…..the Book Club on facebook has just celebrated its second birthday with a party in London.  A fantastic opportunity to meet on line friends, stalk & meet some of the many authors who belong and generally have a night out in a swanky London night spot.

This was a big deal for me as it was the first real event using my wheels!  I have been to the park and the cinema, but not to a social occasion.

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The new wheels!

Many of the people who attended were alone and I commented to Duncan that they were pretty brave to attend a big event (about 250 people) like this not knowing a soul.  His response, as my carer & chauffeur for the night, was that I would have gone alone in the past and mingled & talked to anyone.  The old me….I am still struggling with this!  But we had a fantastic evening – don’t get me wrong it was hard, I had to really dig deep and was absolutely shattered by the end.  But I managed to wear some of my old clothes – so I have shifted a little of the weight gathered over the last few years of immobility – and with a slick of lipstick nearly passed for the old Claire.  We weren’t quite brave enough to attempt the train & tube yet with the wheelchair so drove, but we stayed the night in the student engineer’s flat which is up the road from the party venue, meaning that Duncan was drunk in charge of a wheelchair and hopeless at managing the kerbs around Kings Cross!  Of course we completely cramped our son’s style when his flatmate arrived home and we had to be introduced.  His friend asked at midnight if we had been to our party yet – how old did that make us feel as we were getting into our PJs??

The cake? you ask.  I made the birthday cake for the party – copying the group’s colours and logos, it was my guarantee to myself that I would go to this social if it killed me.  The lovely people that we met, the discussions of books, even the student flat, all proved that I am more than my ailments.  Oh….not forgetting that the party actually looked pretty good to the student son as he asked me to invite him to join the group the next day!  Thank you “The Book Club” admin – you don’t know how much this group has helped me this year x

7 Practical Ways to Manage Your Chronic Pain

This is a great piece on “I Told You I Was Sick” blog by guest writer Molly Garner

Are you living with chronic pain? These 7 practical ways to manage your chronic pain can help you get the comfort you need without synthetic drugs or chemicals.

Source: 7 Practical Ways to Manage Your Chronic Pain