Category: chronic pain

Honey Colony Superior Cannabinoid Rich Hemp formula reviews on website; the grey areas of the law and usage of CBD in USA & UK

On By Claire Saul (PainPalsBlog)In chronic illness, chronic pain, Ehlers Danlos Syndrome, Pain relief1 Comment

I am very pleased to have a mention on the honey colony website as a reviewer of their Superior Cannabinoid Rich Hemp Formula.  The other reviewers are Kristin of A Life Well Read, Heather of The MS Life and Kristin of Mini 2Z – all fellow members of Chronic Illness Bloggers network. honeycolony-logo

My original review can be found here Review : Honey Colony Superior Cannabinoid Rich Hemp Formula for pain relief superior-3pack-600x600

The Drug Enforcement Administration in the USA announced earlier this month that all extracts of marijuana, including CBD, are illegal under federal law (Rolling Stone article Inside DEA Ban on Marijuana Extracts).  I understand that this has triggered great debate in many communities and that there are legal challenges being made to determine whether the DEA has authority to exceed the Controlled Substance Act.  Many suppliers of CBD & hemp products are reporting that sales will cease by 14th January 2017.

I wonder where this leaves the situation in the UK, particularly as the reviewed honey colony product is produced and shipped from the USA.  Having read various pieces, the law in the UK seems to me to at best be grey!   This article published on politics.co.uk by journalist Deej Sullivan sets out to examine Uk laws, the introduction of the Psychoactive Substances Act, the Misuse of Drugs Act and the role of government & the Home Office with respect to enforcing said Acts.  I admit that I am not a great deal clearer!

I continue to use my product (it may not be quite clear on the website that I no longer take Oxycontin – last New Year I down to approx 80mg daily – and that the spinal cord stimulator delivers an electric current to the nervous system not drugs Spinal cord Stimulation) – and still find that it helps with muscle and joint pain resulting from my EDS.

Claire x

 

A Chronic Christmas – inconvenient illness for the holidays

On By Claire Saul (PainPalsBlog)In chronic illness, chronic pain, Disability, Disability Aids, Ehlers Danlos Syndrome, POTS2 Comments

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.

Uncle Dunc doing his bit!

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

 

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

On By Claire Saul (PainPalsBlog)In chronic illness, chronic painLeave a comment

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

UK Study to help chronic pain sufferers back to work

On By Claire Saul (PainPalsBlog)In chronic illness, chronic painLeave a comment

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

On By Claire Saul (PainPalsBlog)In chronic illness, chronic pain, Ehlers Danlos Syndrome, opiates, Pain relief, Review, Spinal cord stimulator5 Comments

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.

7 Practical Ways to Manage Your Chronic Pain

On By Claire Saul (PainPalsBlog)In chronic illness, 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

When Chronic Pain Requires Drastic Action – more news…

On By Claire Saul (PainPalsBlog)In chronic pain4 Comments

Guess what, pain pals!  I had a call and my letter is to be published in the newspaper as a lead letter next week.  Photographs of yours truly have been duly sent.  More press for chronic pain, chronic regional pain syndrome and a little of how it is to live like this.

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When Chronic Pain requires drastic action

On By Claire Saul (PainPalsBlog)In chronic pain, Ehlers Danlos Syndrome, Spinal cord stimulator1 Comment

I want to share a story published this week in the British press and the email that I have sent on behalf of everyone suffering with chronic pain.

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Dear Daily Mail,

Thank you for sharing the story of Hannah Moore, the young lady who has chosen to have an amputation to help relieve her chronic regional pain syndrome(CRPS).  I know that the majority of people will be unable to understand why she would choose such a drastic route, but those of us living with constant intractable pain will understand the lengths that one will go to for any relief.
I have lived with chronic pain for many years now and have undergone various major back surgeries in an attempt to give me some relief.  My first operation, aged 21, followed me taking my nursing finals lying on a mattress!  Nursing at a time when we still “lifted” patients, combined with a genetic disorder of the collagen, undoubtedly marked me out for back & joint problems!  Following two failed back fusions in more recent years, last year I had a spinal cord stimulator implanted at St Thomas’ & Guys hospital in London and whilst this gives me some relief when it is switched on, it is not a cure..
The nerve damage in my back is permanent, as is the genetic condition (Ehlers Danlos Syndrome) causing faulty connective tissue to allow recurrent joint dislocations, circulation problems and more.  So….there is no cure, currently, for my pain.  I remember clearly the look of shock on a friend’s face when I said that I would happily swap my poor mobility for a permanent wheelchair IF it meant that I was pain free.  I would imagine that this brave young lady has come up against similar reactions.
Ironically I have recently acquired a wheelchair in order to give myself & family so more freedom, but I still do have constant pain which fluctuates in severity dependant upon the weather, my activity or for no reason at all.
I hope that with more recognition of chronic pain conditions, such as CRPS, that there may be some more understanding for this debilitating invisible illness.
Regards,
Claire Saul
A recent film has been made detailing life with CRPS “Trial by Fire” https://en-gb.facebook.com/trialbyfiremovie/
Link for the original story about 19 year old Hannah Moore – don’t be put off by the “sensational” headline

Got myself some new wheels! #wheelchair #mobility

On By Claire Saul (PainPalsBlog)In chronic pain, Disability Aids4 Comments

Yes, I’ve finally gone and one it and purchased some new wheels.  I think that any decent midlife crisis has new wheels as a prerequisite doesn’t it?  My new wheels are sleek black, with a red chassis, great suspension, smooth handling, top speed of…….getting a bit carried away here, I think.  No sports car for me or even a moped….but I have bitten the bullet and am the proud owner of a nearly new wheelchair.  I cannot believe that I am in my 40s and so excited by my new toy!!

My walking has really deteriorated over recent months, as on top of the nerve pain, my hips and knees have popped in and out like the hokey cokey. The problem with this is that my poor old ligaments are now so stretched that the muscles go into spasm to hold everything together – and the ligaments & muscles both hurt….like crazy!  On Sunday a short walk resulted in a well timed faint and resulting hip displacement which saw me being lugged like a sack of spuds from front door to the lounge.  Son number one announced that “Mum, you are too heavy” – charming! Nothing like a weight comment to make a girl feel good about herself.  Anyway this led to some serious ebay surfing and watching – not shoes this time sadly – and Duncan collected my wheels from a very kind couple last night.  The chair was only purchased 8 weeks ago for an elderly father, who has since passed away, but apparently they were very happy to hear how they have helped us out as finances are tight.

I attended my first governing body meeting of the school year last night, and by the end I could scarcely stand let alone walk to my friend’s car.  I don’t expect people who hardly know me to understand or even to appreciate how slow I am – most of them left together and of course were quicker than me – but how do you explain when one of them, who helped me to the car, commented that I seemed in a lot of pain? How do you explain that by the end of that 2 hours it was not only my back and leg hurting me, but my shoulders were screaming at me to such an extent that I couldn’t lean on my arms let alone pick my bag up? So instead a smile and innocuous comment along the lines of “there is always pain, but life goes on” and then I said that I was about to become the owner of a wheelchair….it really will make a difference on that walk between the front of the school and the year 6 building!

When I arrived home my chariot was awaiting me in the hall – apparently my lovely girl had already taken it for a spin up around the house.  Olly acted completely nonplussed by it – of course he had been embarrassed by pushing me in the hired one as a typical 17 year old lad – but then I caught him sitting in it in the dark last night trying to take the brakes off, ha, ha, ha!

So off for a spin in the park if my joint pain allows and the rain holds off……

Sam really is not sure!
My Karma!

 

A Year on…life as an #EDS zebra with a spinal cord stimulator & #chronicpain

On By Claire Saul (PainPalsBlog)In chronic illness, chronic pain, Ehlers Danlos Syndrome5 Comments

I’ve really struggled to get my act together over the last 10 days and write.  You may have noticed a gap in my posts – POTS symptoms in the heat followed by a migraine! This time last year I was mid spinal cord stimulator trial and planning my girl’s birthday, that is I was carefully pottering about with a massive dressing on my back and an electrical flex sticking out my side attached to a magic box of tricks handing out instructions!  So this also means I’ve been blogging for a year.

My kids really could not understand why I would feel the urge to write or why anyone would want to read anything that their mum wrote.  At first PainPals started out as a means to let friends & family know how I was getting on, to cut down on the number of repeat conversations. I had been really helped by info that I’d found online, particularly on Pain Support UK & by a lady called Tina Worth,  when I was first referred to St Thomas’ pain unit, so I figured that if I could help someone else at the same time this would be a bonus.  I never dreamt that I would link up with so many people, find so much help and support out there or that so many of you would want to follow me.  I am really grateful.

I still remember arriving at Guys hospital at 7 am and being the most scared that I had ever been before surgery.  This wasn’t going to be the longest, the most complicated or even the most painful surgery that I had undergone – but it really felt like and still feels like there was the most riding on it.  It offered hope and if this trial didn’t work then that hope for relief of the chronic back and leg pain was gone – and to continue living like this was not something I could contemplate.

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But life goes on and I want to recap the last year – the difficult bits, the positive bits & well the rest!  Has the spinal cord stimulator worked is the question that most people ask. Yes & no. Probably the hardest part of this journey is learning & accepting yourself and then explaining to family & friends that this is not a cure.  I have permanent nerve damage & a permanent genetic condition.  Would I go down this route again? Absolutely.  Whilst the scs is not the be all and end all for me, it has given me relief and some control back.  I have to admit that I still have “stim envy” for those who are having 24 hour permanent stimulators, as I have to turn mine off every few hours.  A “buzzing” stimulator also has to be switched off to drive – meaning that I can’t drive as I am unable to sit in the car without it on – and should not be left on whilst sleeping. So painsomnia again!  I understand that different surgeons use different devices, there is a cost, and that in the UK high frequency devices are only licensed by NICE for one specific diagnosis.  But….I still envy my friends who are able to have them on all day!

I have written posts about drugs and chronic pain, and I do feel proud that I’ve managed to come off the high dose of oxycontin that I was on a year ago.  It was not easy!  In fact I think that my bloody mindedness was what got me off and the biggest benefit must be the kids saying that I am like the old me again.  A downside is that the opiate was masking my increasing Ehlers Danlos pain and now the pain in my hips, shoulders, knees etc is much more acute and disabling.  I can’t manage without pregabalin(lyrica) and am still on the maximum dose for my nerve pain – St Thomas’ have said that I may never be able to come off it.  But I’m about to start a trial of a cannabinoid hemp formula supplement which I will review on here, so watch this space for some (hopefully) good results.  My autonomic nervous system has deteriorated and symptoms such as fainting, headaches/migraines, circulatory problems, postural changes do seem to have worsened since I had the electrodes implanted.

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Blue POTS fingers

No one is able to confirm if the stimulator could be increasing other symptoms, but I do wonder as it is the spinal cord and thus the nervous system that it is acting on.

Positives from this last year have been joining social online communities.  I had no idea how anything worked this time last year and my kids would laugh at me -facebook was totally their domain. But the support that I have found from fellow spoonies on wordpress, the amazing Julie Ryan and Chronic Illness Bloggers, Ehlers Danlos Uk & Twitter has been beyond any expectations.  The realisation of how many of us there are and how many families who support & are supported is simply staggering.  To find the Twitter #SpoonieSpeak set up by Tania from http://www.WhenTaniaTalks.com on a Friday evening to a new EDS chat that I stumbled upon last week, there is so much support & good feeling toward each other.

I still struggle to accept my limitations and am pretty rubbish at pacing, but I have accepted this year that a wheelchair gives me more freedom and that whilst my spinal cord stimulator has helped to manage pain, I am one of the third for whom the disabling factors of EDS get worse with age.  I’d rather my boys – young men now – didn’t have to get me out of the shower and dry me on a bad day…..in the humid weather last week I had breathing problems after a shower and the eldest’s main concern was that I didn’t die whilst naked. Charming!!  There was an article in a tabloid recently about some ladies who wouldn’t let their partners see them naked because they were worried about saggy breasts post feeding, caesarian scars or stretch marks.  They should be so lucky to have the choice – and only one scar – they should see my patchwork.  We have to laugh as all too often chronic conditions rob us of dignity & leave us in PJs.

On a brighter note I have managed to join 2 book clubs and reading is certainly easier without the opiate background to enhance my brainfog.  The first has been a local group that we found through Google Meet ups and Duncan & I both go along – probably helped to persuade him when he knew that it met in the pub!  The second is The Book Club on facebook which has been amazing. 14222267_10154600381361495_2740355709948892258_n I feel honoured to be able to read and review the works of authors who are also members – I hope that you have enjoyed some of my reviews that I have published on here.  Next month we have tickets for a birthday event for this group in London and I really hope that I am well enough to attend & actually meet some of these lovely people.  Think I might have to buy that wheelchair to get me there – we’ve been a bit slow as I’m still not quite sure what to invest in.

At times I feel very aware that other amazing bloggers seem to publish something every day and I just don’t seem to get my act together, or feel that I can write such inspiring pieces (have you read Genevieve at http://www.shipwithnosails.com or Ness at http://www.TheGirlWiththeFiveLads.co.uk ?).  But it is through these lovely ladies such as Amy at http://www.SmilesintheTrials.wordpress.com that I have drawn support & understanding and new friendship.  A year ago I would never have imagined that there would have still been any interest for what I might post or tweet, but here I am, still writing, making birthday cakes when I can and more importantly still holding my head up high…..well most days!

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A year on out for Lucy’s birthday
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With 3 generations….birthday girl with mum and grandma