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.
When 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…
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!
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!!
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 it 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).
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).
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
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 Smilesin 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 …”
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
“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.
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 circumstances. 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!
This is my journey down the path of invisible chronic illness and learning how to self-care. I have interstitial cystitis, chronic migraines, hashimoto's and more. But in between all the chronic illnesses, I have a life...kind of. -Rachel Bob