Posted in Archive, february 2021

Cancard UK; Fantastic leap for Chronic Conditions in 2021

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What is Cancard UK?

The Cancard UK is a fantastic leap forwards for pain patients and people with qualifying* chronic conditions in the UK. Essentially it is a card issued by Cancard LTD to its membership that provides evidence to the Police that the holder has a qualifying medical condition for which medical cannabis may be prescribed. This card indicates to the the police that the holder is therefore in possession of cannabis for medical reasons and that that they should confident in using discretion when they encounter a Cancard holder providing they are in possession of small quantities.

*You can find a list of qualifying conditions of their site, upon application you be asked to either provide a summary of care or have your GP sign to prove that you meet application criteria.

Why is the Cancard necessary?

Currently there is a short list of qualifying conditions for that entitle you to a private prescription of cannabis in the UK. However these are extremely expensive; An initial appointment* costs around £150, a follow up appointment which is required every couple of month £65, each prescription at least £30 per month. *Pricing examples taken from The Medical Cannabis Clinics.

For most people these prices are just not affordable, especially not long term. However it is known, and more evidence is coming out in support of this, that for certain conditions cannabis can provide significant relief, reduce pain, and help manage symptoms.

Does this make it legal?

No the law has not changed, however all police forces in the UK have been briefed on the the card. It has been co-designed and is backed by senior members of the police force, and guidance has been issued by them stressing that officers should feel confident in using their discretion in cases of possession when the holder is also in possession of a Cancard. It does, however, prove that you are legally entitled to a cannabis prescription which is a huge step forwards.

Cancard UK

If you are interested and want to know more I would highly recommend spending some time on their website and also on their social media. Not only can you apply for the card through the site which is an easy process, but it is also full of great resources such guides to self medication, how to handle being stopped by the police, the different components in cannabis and how each one affects different conditions such as epilepsy, spasms, pain etc. The Cancard UK is a great tool to utilise as well, one of the most recent videos was a tutorial demonstrating how to make it into a oil, which for those who prefer not to smoke is a very handy guide.

Next Steps

Currently the card does not cover growing your own plant at home, and pharmacies are still not selling to card holders. However, they are working on expanding so that growing is covered and therefore reduces the risks taken by the user.

Posted in Archive, february 2021, poems

Dislocations; Smashed Avocado Toast

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It’s the breath stealing, heart racing moments.

Nostrils flared, knuckles white with a fierce grip.

Head back, focused. Can’t swear.

Sausages. Bananas. Smashed Avocado on freaking toast.

Hospital? No. What can they do.

I’ll only spasm and dislocate again at one, then again at two.

Pass me Olaf, he needs his teeth done.

Sausages. Bananas. Smashed Avocado on freaking toast.

Fifth Knee dislocation of the day.

The spasms. Just. Wont. Stay. Away.

Still need to be a Floogal Rescue Machine.

Sausages. Bananas. Smashed Avocado on freaking toast.

Posted in Archive, January 2021

The Test Results Are In

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After spending the last several months in and out of hospital, losing the sight in my eye for an extended period of time and only partially regaining it, losing all sensation in my right leg and experiencing sensory issues in my arms I was once again told it looked like I had MS. Yet the examinations didn’t agree. I was left battling for help as different hospitals and departments seemed to find it impossible to communicate with each other. Well the most recent test results are in! We finally have an answer.

If I am honest I had almost given up on a diagnosis other than unknown complex neurology condition with global sensory loss. None of my Drs were communicating with each other, no one could agree with each other and that was resulting in me receiving no treatment. It has been a period of high stress and extreme emotion.

Today I finally had my Emergency Video Consultation  with the local specialist in Neurology; this was requested back in October. Firstly they are agreed it isn’t MS which is great confirmation. What they are sure of is that is another part of my Ehlers-Danlos Syndrome. Apprerently when I’m dislocating my knees the nerves around it are being over stretched and damaged hence the loss in sensation/function. The same thing had happened to my elbows causing the sensation I was getting in my lower arms and hands. This surprised me greatly; mainly as I had in fact asked the doctors this very question when I was on the ward last year and they laughed at me for suggesting it. In regards to my eyes the nerves are not communicating with my brain effectively, but are not damaged like you get in MS.

He’s suggested we get me booked in with my EDS consultant for some advice in the meantime on how to cope with these symptoms as they can last a significant amount of time.

So whilst the EDS is generally on a slippery slope currently and it’s all about managing it, keeping on top of my pain and being proactive, I feel that overall it was a very positive chat.

Posted in January 2021, Archive

Welcome to 2021

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2021 has arrived! We rang the new year in a quiet manner, a nice drink, a dislocated thumb and an early night after realising we were out of bandages (and spasms were forcing my thumb to remain out). I hope all of you had a lovely NYE and are healthy and safe at the start of this new year.

So what does 2021 hold in store for me?

As you may know from my facebook page I have set up my own holistic health coaching business which is designed to help people who are disabled/dealing with invisible illnesses. Holistic Health coaching is a partnership that will empower them, pin point problematic areas and find realistic tools to help improve quality of life, improve pain management, mental health wellbeing, and more.

Dystonia & Me Holistic Health Coach

Enabling others to improve their quality of life is a passion of mine. My own struggles in that area, along with fighting for help with mental health, pacing advice and more stuck me as how much holistic health coaches are needed. I know that I could have benefited greatly from one in the beginning. I look forward now to helping others, for anyone interested you can contact me here https://www.facebook.com/DystoniaandMeCoaching/

Posted in Archive, December 2020

Let’s Bin Perfection.

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What is perfection? It’s a word that we toss around like it weighs not a thing, when the reality is that’s a ball and chain dragging our mental health through the mud chasing after. I’m sure my own view of perfection is mighty different to yours! If it wasn’t then it would be a case of bottling up a potion or creating a word doc telling you what steps to follow to achieve perfection and selling it for a killing; I’d be able to have my own purpose built bungalow. No it’s different to all of us yet we all seek it.

It’s the little negative moments experienced that make us seek it. It’s the old man tutting and shaking his head repededly at me because he couldn’t push past my wheelchair easily. It’s the side eye and the sarcastic comments that are made by people who don’t understand ambulatory wheelchair users exist. It’s dislocating 15 times in one day and just having enough. It’s all these things and so much more that make us want to chase perfection.

The fog of insecurity in our brains full of thoughts like if I just weighed less, if I wasn’t chronically ill, if I wasn’t in my chair, if I was more like them; it’s all based on the negative moments and turned into insecurity and self doubt. It’s a weight that no one needs.

But chasing perfection is futile. It’s an unachievable concept. It’s time we move away from it. On that note can we bin chasing normal as well? Learn to love ourselves the way we are. Life would be boring if we were all the same. I know I would rather be my unique self than identical to every other person.

Posted in Archive, December 2020

Treatment Day

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Currently I’m sat in the rush hour traffic on my way home from seeing my neurologist in London. It’s been a long day which upon arrival I soon expected to end in despair. Despite email confirmation of my appointment, my slot had not been added on the system. I’m a big believer in to be early is to be on time, and this slightly over anxious side of me always shows itself before appointments; being extra early was something I was extremely relieved about this time as it meant that they had time to order up the injections.

Watching the lights go past.

Thankfully I was seen and as usual I left feeling ever grateful that I’m under my neurologists care. He’s been a rock for me these last 8 years and continues to be. He’s agreed with maxfax recommendations to start me on Sinemet and recommended an alternative to try if this one doesn’t have the hoped for impact. Maxfaxs theory is that there are a small number of EDS (I’m CEDS) who also have dopa responsive dystonia and that I may fall into this category. I’ve not tried any of these medications before so I’m keeping my fingers crossed and hoping for some sort of dent in symptoms.

I’m planning on resting most the journey home as the injection site in shoulder always aggreviates my complex regional pain syndrome. More on this tomorrow.

Posted in Archive, march 2020, September

Isolation Week 2

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Although I only received my instructions to isolate myself for the next 12 weeks from the government on Monday, we had infact already been in isolation for a week as both myself and my partner Damon bad been symptomatic. Whilst I’m pretty much symptom free now, Dame is still locked away upstairs as he remains unwell. Whilst he would only be considered a mild case, it’s worrying none the less.

We decided early on that we would follow all instructions to the letter as we know how risky a simple cold to me can be. The symptoms I had last week had me reaching for my inhalers constantly. What hit home in particular for me was our two year old son is also on the shielding list due to his medical issues. Luckiky, as much as he desperately wants to go to the park, he’s quiet happy accepting, that there’s a nasty bug outside, so for now he can’t.

It’s hard however to follow the governments instructions when my partners in isolation. For example I’m not really supposed to be particularly near our children and supposed to be three steps away from everyone. Well with Damon isolated I’m the sole parent, and they are now both sleeping in our room. There’s no alternative. But we’ve got to make the best out of a bad situation.

I’m starting to experience more spasms and pain as my Botox wears off. My next lot is supposedly in London at the end of next Month which I’m expecting to be canacled. I’m hoping an alternative can be arranged at a local hospital in the meantime.

I would love to hear how everyone’s isolation is going. So please in the comments on my Facebook page do let me know. I’m aiming to keep this isolation diary updated daily either with blogs here or VLOGS on the Dystonia and Me page.

Stay inside. Stay Safe. Support our NHS.

Posted in Archive, October 2019

Full Body Dysfunction

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I had really debated whether or not I would post this blog. As you will know over the last 7 years I have strived to share the ups and downs of my journey with you all in a brutally honest fashion. However what I am experiencing right now is something I am finding to be increadibly difficult to deal with and awfully humiliating at times. However as I have found in the past that ripping the metaphorical band aid off and sharing bluntly with you all to be rather helpful I figured I may as well start at the beginning.

I shall try to keep it brief. About three weeks ago after several days struggling with a dislocated jaw and severe spasms to the point I couldnt eat or drink  I collapsed in the kitchen. The resulting head injury leading to an ambulance needing to be phoned. Several seizures later I was whisked off to resus. I dont remember much of the first four or so days in the hospital. Luckily despite being severly ill I had the sense to keep notes of my concerns, for example being denied antisickness and painkillers following several hours of vomitting and seizures.

For some unknown reason that was never communicated to me all of my medications were stopped the whole time I was in the hospital which led to uncontrolled seizures, spasms and pain. My kidneys were found to be damaged, there are changes to my spine and in my brain matter, I have been diagnosed with epilepsy. Twice whilst I was in there I had an NG tube placed and failed. Unfortunately the second time round it took the drs 6 hours to view the xray showing it misplaced. In this time I was quite distressed due to the fact I was violently vomitting blood due to a tear from the ng in the lower eosphaoghes for the better part of the 6 hours all with a dislocated jaw. A rather agonizing experience.

Throughout my 6 days in hospital I was on IV fluids 24 7 due to the fact I currently am having extreme difficulty swallowing and can go days at a time unable to do so. At the point of discharge I had managed a few sips in a 3 hour period and was discharged with no plan of action. Its been a hurrondous time since then with me only getting worse. However I am now also completely bowl incontinent which has left me terrified to leave the house. But being the mum of a 2year old means fear cant win.

Hopefully I’ll have a more optimistic update soon.

Posted in Archive, August 2018, September

How Many Dislocations Is Too Many?

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It has been a little over two weeks since my trip to the hospital where I was subsequently put on a strict liquid-only diet whilst I wait for a referral to see the oral surgeons. The liquid diet has to a degree reduced the overall number of dislocations I’m experiencing on a daily basis which is positive, however, my jaw dislocations are still very frequent. Days such as today I find quite frustrating, I don’t know how best to help myself.

The Dr. I saw who did not believe in Dystonia or have any understanding of EDS was extremely disapproving of the fact that my local hospital had given me a small dose of morphine after the third attempt to relocate my jaw failed. I’d spent over 24 hours dislocated and only had paracetamol throughout, I had not once asked for painkillers until this point. His attitude had left me worried about how to manage my pain at home. I am on my 12th jaw dislocation today. I have broken down in pain multiple times, yet all I have taken to manage it is ibuprofen and paracetamol, alongside applying lavender wheat bags to ease the surrounding muscle spasms that are aggravating it. Normally I would have taken something stronger such as Codeine or Tramadol by now,  which is a treatment plan agreed by both my GP and Neurologist, however I am so aware if on the off chance I have to return to the hospital for help with relocation I will need to inform them of what medications I have taken. I am fed of misinformed and ignorant professionals treating me like a drug seeker. I should not have to deprive myself of the painkillers I need because of one arrogant man.

I feel extremely frustrated. I know that referrals such as these take their time; however, I am concerned that this will just be the start of a very long process. Whatever ‘fix’ they come up with for my jaw, will have to take into account my Dystonia, and that seems like an impossible ask.

Posted in May 2018

New Beginnings

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At the start of May my degree came to its close. After three years living in Oxfordshire it was time to start making new plans for the future; which is why on the 11th of May we packed up and moved to St. Helens, Merseyside. It’s a long way from my family which is hard but we are surrounded by my in-laws who I love dearly.

Happy in our new home

Getting to know a new area and work out the most disability friendly routes to places is tiring but so far I am feeling very settled and happy in my new environment. I’m now several hours away from my neurologist which is less than ideal but he has agreed that I can remain on his treatment lists. Whilst moving to a new neuro more local would be easier I don’t feel comfortable leaving his care as he has been my rock for the last six years.

I’m having a couple issues with my jaw spasms and the osteoarthritis at the minute but overall I’m coping well. I’ve introduced a new herbal supplement to see if it helps with pain relief and will be reviewing this soon.