A Patients Case for Medical Marijuana

Over eight million Brits suffer from disabling chronic pain and rely on opiates to get through the day. Most aren’t addicted – they don’t abuse their medication – but are technology dependent. Their neurons have adapted to the only function normally in the presence of the given drug.

‘Opioid epidemic’ is a phrase the media throws around like confetti. They vilify the doctors for overprescribing; patients for abuse; and drugs dealers for exacerbating the problem. But what about the substantial segment of patients who aren’t addicted, don’t abuse their drugs, but do rely on them to survive? Why are we seemingly exempt from the opioid epidemic? Simply put, because there is no alternative. We must live our lives on prescription opiates stronger than heroin, hold down jobs, drive cars, have families and function because for us this is the only reality on offer from the government.

When you search for ‘opioid statistics’ on google, you’ll find a wealth of reports about the abuse of these drugs but nothing related to the “approved” use of these drugs. To understand the epidemic is to understand opiates. They are designed to decrease the perception of pain but don’t fix or remove it. Many are also known to produce a sense of well-being and warmth. If you are presenting with chronic pain and you have exceeded the likes of paracetamol and ibuprofen, you will typically begin on the low-level Hydrocodone derivatives. Depending on your conditions the doctor might throw in an anti-seizure medication like Gabapentin or Pregabalin for good measure. As you inevitably become tolerant to the opioids – for some people it takes weeks, others years – you are slowly stepped up the opiate ladder until you reach the dizzying heights of fentanyl (the drug that is famously said to have killed Michael Jackson) and morphine. But what happens when you reach the top?

Unfortunately, I learned the hard way. After 10 years using codeine, tramadol and morphine to manage my increasing pain, they just stopped working. I saw a consultant who deemed that I had opioid-induced hyperalgesia. Despite being on these drugs for many years (a number of them as a teenager) this was the first time I had ever heard that word. I learned that it was ‘opioid-induced hypersensitivity to painful and non-painful stimulus’. The opiates that I was using to hold down a job, sleep at night, maintain a ‘normal’ life, had turned against me. They were actually making me worse.

I was fortunate in the scheme of things. I avoided other serious side effects of long-term opiate use like gastroparesis, hormonal dysfunction, liver damage, immunosuppression and more. I spent two weeks detoxing from the medication: I vomited, had hot and cold sweats, tremors and, rather strangely, I sneezed a lot. But when I came out the other side, my pain was less than it had been in years. I still had significant pain, particularly when I had a dislocation, but I was desperate not to take any opiates again. After some research, I found CBD oil. I ordered some and after the first dose, the effects were almost instantaneous. Within an hour my base level of pain had all but dissipated. It was roughly 5 hours later before I needed to take another dose. I had the first hours of pain-free life that I had known for many years.

There are a handful of alternative therapies, like Cognitive Behavioural Therapy and mindfulness, that can offer great relief to some people living in chronic pain. But it isn’t a ‘fix-all’ and should not be presented as such. I have personally found these very helpful but they do not actually ease the pain, they just allow me to cope with it better.  I have found CBD oil more beneficial to my pain levels than my prescriptions ever were. It has have allowed me to stay off opiates almost entirely (the perfect record was broken by a dislocated hip).

Cannabis has been proven time and time again to be medicinally beneficial. From Multiple Sclerosis and cancer to HIV/Aids and chronic pain; there are thousands of reports and government-sponsored reviews that outline the legitimate uses and benefits of cannabis. Yet still, my only legal form of pain-relief is one that is also making me sicker.

Today, MP Paul Flynn will read the Medical Cannabis bill in parliament. I’ll be there along with the United Patients Alliance to stand up for a better life for people suffering from chronic pain. Join us and you will see that we are patients, not criminals.

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National Self-Care Week

Happy national self-care week! A whole week reminding us to put life stresses aside, tune into our needs and spoil ourselves rotten.

Obviously, it’s ideal to practice self-care at all times, but with our busy lives, it can be really easy to go weeks and weeks without ever having a bit of downtime. With that in mind, I wanted to share some down and dirty methods of squeezing in some self-care throughout your hectic day….

Mini Moments

Tiny ways throughout the days to practice a bit of self-lovin’

  1. Say No! If you’re anything like me, you struggle to say no to others. I want to keep everyone happy and will bend over backwards to keep it that way. Protecting your boundaries, focusing on your energy levels and capacity are great ways of practising self-care.
  2. Meditate. I like to bookend my day with meditation. I’m not perfect and often miss mornings/evenings here and there, but overall it really helps me slow down and get a bit of headspace.
  3. Treat Yo Self. It’s good to live within your means, but sometimes everyone needs a little splurge. It’s good for the soul!
  4. Keep Your Friends Close. Stop wasting your time investing in relationships that aren’t giving you anything back. Be brutal, it’s not easy but it is for the best. Focus on friends who reciprocate the effort!
  5. Get Some Rest. Hit the hay an hour earlier than you normally do. Spend the time reading, or ideally go to sleep early! Those extra zzz’s will top up your self-care savings account in a big way.
  6. Date Yourself. Switch off your phone, slap on a face mask and put on your favourite guilty pleasure movie. Spend an evening really getting to know yourself again.
  7. Speak Up. If things are wearing you down, don’t just accept it as par for the course. You have the power to change things and improve your life.

Self-care is like a savings account. You know you need to pay into it but it isn’t always easy. But the longer you leave it the more precarious your stability becomes. You can go weeks or months without noticing the impact of no savings. But financial emergencies will come up but if you have nothing to fall back on it can be disastrous. If you don’t have any savings, life is infinitely more difficult. Self-care is much the same. It’s often difficult to remember to treat ourselves well. The longer you leave it, the more depleted your energy and ability to cope with things become. If something comes along and rocks your world – a breakup, family emergency, work issues, illness – you might not have the capacity to cope with it.

Deposit into your self-care savings account and you’ll stay ahead of the game! You’re mind and body will thank you.

How do you practice self-care? Share your tips and tricks below!

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My PCOS Story: My Ovaries Tried to Kill Me

When I was 17, I almost died. My ovaries tried to kill me (though I didn’t know that at the time). It was midday on Sunday and I had just finished up a lovely lunch with my grandmother. I popped the ladies room and that’s about the last thing I remember clearly. The next thing I remember is waking up on the bathroom floor and my boyfriend helping me up. Moving was agony. I remember my grandmother called an ambulance but they were on strike and couldn’t promise anyone would come. They told me to wait outside just in case, so my boyfriend helped me outside. I remember laying on the pavement because I couldn’t stand. It started to rain but I couldn’t move. My grandmother, who was 86 at the time, called a friend with a car who rushed over to take me to the hospital. I don’t remember any of the journey. I remember next waking up in A&E as the nurses were trying to get an intravenous line into my arm. It was only at that point that I saw how distended my stomach was. I looked like I was 9 months pregnant. The doctors said they thought it was appendicitis and had scheduled me for surgery the next morning. I drifted off again.

I remember a lovely Jamaican nurse waking me up gently, telling me my blood pressure was extremely low and that the blood tests were back showing my white blood cells were through the roof. They needed to operate immediately, so she had me sign a consent form. I remember she very carefully put some surgical socks on my feet, then held my hand and kept telling me I was going to be absolutely fine.

Then I went into surgery for the planned, 45-minute appendectomy, but I overstayed my welcome by almost 3 hours. When I finally came to the following morning, I was on the ward. A nurse came by and told me the surgeons were coming around shortly to explain what happened. Three surgeons came by not log later and explained to me what had happened the day before. They had opened me up to do a simple appendix removal as planned, but when got inside the were welcomed by infection throughout my abdomen. My other organs were not coping well with it. They rushed to find the source, which they realised was no longer my appendix. Then they found it: a mass of ovarian cysts the size of a grapefruit that had ruptured. An extra surgeon who was a gynecological specialist was called in and the three men spent the next several hours cleaning out my abdomen, removing the cysts and repairing the damage. I had lost about 20% of my left ovary as a result. And they took out my appendix, just for good measure.

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This incident and the aftermath really rocked my world. Fertility, much like good health, is something you entirely take for granted until you’re told you might not have it. Last year, on top of my PCOS, I found out that I had the added complication of endometriosis. Having a family, when I am ready, is not a decision my partner and I can make alone. We will need support from doctors start to finish, and even then, it will be difficult.

Unfortunately, I am not alone in my journey with PCOS. Worldwide PCOS affects between 6-10% of women, about 1 in 5.. It is caused by a hormone imbalance and is the most common cause of female infertility. Many women will have symptoms such irregular but heavy periods, acne, excess body and facial hair, balding, sleep disorders, unplanned weight gain to name a few. And the pregnancy complications that come with PCOS are significant. If they can become pregnant, women with PCOS will have a higher rate of gestational diabetes, miscarriages, preterm deliveries, and stillbirths. Past childbearing years, you aren’t free, age 40, 50% of women with PCOS will develop diabetes or pre-diabetes.

Although there is no cure for polycystic ovarian syndrome, there is a range of treatments to ease the impact of the condition. They can range from taking particular birth control pills to weight loss and exercise can all help symptoms for some women. There is a shocking lack of awareness about PCOS which can be a big problem for women diagnosed with the condition. When I was diagnosed at 17, I had no one my age that could talk to about it and understand the impact it was having on me. If you have or know someone that has, PCOS do your part to educate and understand the condition. Taking the time to understand the condition and being able to talk about it with your loved one can show them they aren’t alone.

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My Happiness Toolkit

If you read last few posts, you’ll know that I’ve had a rough couple of months. Within myself, I’ve actually been doing really well. I’ve been going to therapy and I’m so happy in my new property. But it seems like just when the dust is settling, everything happens at once. My sister going into hospital. Losing a close family friend last week. Having a number of close friends seriously ill in hospital. With all that on my mind, I have been expecting to feel low. But instead of letting it set in, I have been proactive and managing my own happiness! Today I’ll share with you my happiness toolkit:


Set Aside Worry Time

I am a worrier by nature. I worry about my life, my mothers, my brothers, my sisters, my boyfriends – everyone that means something to me, I worry excessively about them and their decisions. Even people who I don’t particularly care about, I worry about them. I can’t help it! One of the best things I learned in therapy to help with this was ‘worry time’. How does it work? Well, every morning and night I sit down for 10 minutes and think about the things that are worrying me. I write it all down every possible little eventuality and I let my anxiety run wild. It is a bit odd at first and I struggled to really let loose, but after a week of doing it, I began to get into the rhythm and really enjoy it. Then for the rest of the day, whenever I start to worry I just get out a pen and write it down for later. Then I can have a worry free day but I don’t feel like I’m ignoring the things I “need” to worry about.

Have A Cuppa

I’m a tea addict. I have a monthly subscription box and I buy various speciality teas whenever I come upon them. I am slightly ashamed to say I actually have two entire cupboards in my house dedicated to tea alone. So it’s no surprise that when I’m feeling like I need a pick-me-up, tea is my go-to. My two comforting cuppas are Teapigs Chocolate & Mint Tea and Ahmad Rooibos & Cinnamon tea. The Teapigs literally tastes like chocolate mint ice cream. It feels like such a wonderfully luxurious treat but I can drink it all day long without any guilt! Cinnamon holds a special place in my heart (and my stomach). I can’t get enough of the stuff, so when I found this tea I knew that was the end of me. Its really difficult to find so when I stumble upon it I buy in bulk!

Set Happiness Alerts

This is my little secret that I’ve never actually told anyone! When things are getting a little tough, I set up calendar alerts with happy quotes and sayings inside them that resonate with me. So throughout a day or week, I receive little reminders at random times. Some of my past quotes have been things like “The secret of being happy is accepting where you are in life and making the most out of every day”, or “there is no path to happiness: happiness is the path”. It may seem cliché to some people but for me, these little reminders can really help. If I’m having a bad day or feeling low, receiving a little reminder can help bring me back to centre. Give it a try!

Rub-A-Dub-Dub

If there was a Bath Addicts Anonymous I would be the chairman. I have a bath almost every day when I’m feeling a bit wobbly. It makes me feel luxurious, it helps my pain, but most importantly it forces me to pick up a book and just relax. Like everyone else, my favourite bath time addition is a Lush bath bombs. Unfortunately, since my mobility has declined it hasn’t been so easy to pop out and buy them (and I’m not organised enough to buy them online). My favourite is Ylang Song Bombshell. But last Christmas I received some lovely Clarins Bubble bath with aromatherapy oils and I just can’t get enough of it! The smell is amazing and it makes just the right amount of bubbles because we all know that bubbles to bathwater ratio is tres important.


What do you have in your happiness toolkit? Does it look anything like mine? I’d love to hear about it – comment below and share!

Until next time.

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A Bump in the Road

I have had a really rough week. On Wednesday I was heading to my CBT appointment (future post coming about this). Amidst all the chaos of packing and sorting the move next week I thought it would be a welcome break from the packing. Shortly before I arrived, I had a call from my mum that my sister was on her way to the hospital. Having only spoken to my sister the night before, I was confused and troubled by this but relieved my mum was with her. We made a plan for me to visit in a few days, once she had settled into the unit. Only a few minutes later, I had another call, this time from RNOH, stating that my knee surgery referral had been sent back to my GP. The surgeon had gone away on holiday so they couldn't tell me exactly why, but I had been kicked off the waiting list. I had been waiting five months for the call from them about the date for my surgery… but instead, I have to start at the beginning again. Coupled with the news about my sister, to say I was distraught was an understatement.

I had my therapy appointment in less than 20 minutes. I decided I couldn't cancel so last minute so I made my way to the bus stop. I cried the whole journey there so no one would sit next to me on the bus (which I wasn't complaining about). I wasn't in the right headspace for CBT session, so when I arrived we decided to take the hour to discuss my day. So we did. I explained that I felt on the verge of total disaster again. How devastated I was for my sister. How I didn't want to worry my mum with more stress. How powerless I felt about my life in general. We talked for the full hour and then I went home. I cried on and off until I finally fell asleep at 2am.

Wednesday was a perfect storm of pressure for a huge setback. On Wednesday night, I was sure I wouldn't cope, and that I would fall into my old, mal-adaptive coping strategies that I had been working so hard in CBT to stop. I was certain I would fall apart again and end up right back at square one. But on Thursday I woke up and I felt okay. I still felt very low, I cried a few times, but I didn't have the normal 'tailspin' feelings that I normally do after such events.  I allowed myself the day to ignore my to-do list and allowed myself to practice some self-care: I had a duvet day.

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On Friday, I didn't cry once. I still felt low but my head wasn't filled with racingthoughts 24/7. I felt like I was coping. Honestly, I surprised myself. Before now, I would have succumbed to the emotions and let them rule me and my actions. This time, I felt the emotions, all the while knowing they will pass. Although I have been working hard in therapy for many months, I didn't necessarily feel like I had progressed very much (which is why I haven't written any blogs about it yet). It was at this moment that I realised how far I have come.Then I realised something; I was in control. Having this personal epiphany felt monumental and strengthened my resolve. I was going to handle this. I knew then more than ever that I could handle this. Although this was a big ol' bump in my road, it realised that wasn't going to be the undoing of me.

Sometimes the situations that life throws at us that feel like more than we can handle. You can't control life or the situations that come up, but you can control your reaction to those situations. Even if you may not feel like it, you will cope. Emotions will pass, situations will change and you will come through it all stronger than before.

Don't let a bump in the road let you forget how far you've come.

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Should We Have A Right To Die?

When I was 16, we lost a family member. She looked well, but the effects of age were catching up with her. It was excruciating watching the wonderful, warm personality we knew slowly fade away in front of our eyes. As much as she tried, she wasn’t able to hide her suffering anymore. After months of decline, she became too weak to even sit up and the decision was made. As I was so young, I stayed at home and my mum went along to be with her. My mum held her, stroked her hair and thanked her for always being there for us. She fell into a deep sleep and eventually, she took her last breath. She was our childhood Rhodesian Ridgeback, Cheshie.

Beautiful Cheshie
I’m not telling you this to make light of a serious issue. When we made the difficult decision to let Cheshie go, we weighed everything up. It was inhumane to put Cheshie through further pain and suffering. After her 17 years of loyalty and service, she deserved peace not pain.

 

Back in 2015, the assisted dying bill arrived in the commons. Under the bill, a terminally ill person would have been able to request assistance with ending their life if diagnosed as having less than six months to live. The argument from the opposition that this change of law would be a “slippery slope” and would be readily abused by carers and medical professionals. The bill was overwhelmingly rejected by MPs.

Currently, under UK law, any person that aids a suicide is at risk of a lengthy 14-year imprisonment. A week ago, Noel Conway from Shrewsbury took a stand. He suffers from motor neurone disease and wants to die a dignified death with the support of a doctor, legally. He has brought his case to the High Courts and will likely spend his final months fighting the courts for this right. He is compos mentis, making the decision on his own, though with the full support of his family, yet he is still legally not allowed.

Being aware of my own bias on the subject, I ran a twitter poll to get a social temperature (albeit within my own echo chamber). Interestingly, the results align almost exactly with the official statistics: 82% of British public support assisted dying for terminally ill adults. So with such an overwhelming majority, why did 72% of our politicians vote against it? With one person travelling to Dignitas from the UK every week and the numbers rising, they can’t ignore public opinion much longer.

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Omid, a 54-year-old man has an incurable multi-systemic atrophy disease that affects his nervous system. His symptoms are similar to Parkinson’s with speech, coordination, and movement all being gradually lost. He suffers greatly each day. Yet despite this, he has many years of life left in him yet. In 2015 Omid attempted to overdose but was unsuccessful. It was after this attempt that he was moved away from his family and into a nursing home so he no longer had the ability to try. More than 300 terminally ill people like Omid end their own lives every single year. Behind that statistic is an army who are physically unable to commit the act because their illnesses prevent it. They are sentenced to suffer until their body physically can’t cope longer.

By denying this change in the law, they are condemning people like Omid and Noel and all the terminally ill citizens in the UK personal autonomy. We are sentencing them to spend their final months suffering greatly until their bodies physically can take no more. For me, as an animal lover, it boils down to one simple question; Why do we afford our pets more dignity in death than our family?

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Dealing with “Helpful” People

Bonjour from France! The last week has been amazing – exactly what I needed – and I can’t wait to share some posts about it with you when I’m back in the UK next week. For now, though, I wanted to talk about something I have been dealing with this week whilst on holiday, but come across often back home too. I’m talking about “helpful” people.

I want to clarify I am not talking about people that help generally. I am incredibly fortunate to have a wonderful partner, friends and family who are very tuned into the kind of help I need and as someone who struggles to ask for help, it is something I am thankful for every day. What I am talking about, is the type of help you don’t – or rather wouldn’t – ever ask for.

I personally describe disability to others as a masked bandit. It will steal something different from each of us and to varying degrees, but it will ultimately take away our abilities and the freedom of choice. Because of this, the things you can do become incredibly important. Before becoming physically disabled, I was always a ‘doer’. It was a large part of how I defined myself and it was very wrapped up in my personality. This lead to a very difficult adjustment when I suddenly wasn’t so able to do so much. I didn’t want to accept that I wasn’t the “same person” (or rather, I didn’t feel like I was) and it shook me to my core. It took some time, a few months of talking therapy, but I am now able to live a much happier life, within my physical limits. I haven’t given up by any stretch, but I am now aware of the activities that are worth the energy, or those which I should ask for a bit of help with.

These helpful people are doers themselves. They assume that you need help – perhaps because you are struggling or perhaps just because you have a disability – but they want to just ‘do’ it rather than waiting to ask. What these ‘doers’ don’t always appreciate, is that there is often an emotional attachment to activities for disabled people. Moving your wheelchair/walking stick without asking, taking your bag away from you so they can carry it, imparting medical advice when you’re not a doctor, ordering you to sit down whenever you try to move/do something – Without asking permission, this kind of help can feel very intrusive and overbearing.

People with disabilities are very aware of their own abilities. If we are attempting something, we can almost certainly do it. But if we can’t, give us the chance to ask for that help. If you repeatedly have people taking control and doing things for you, it can be at most disempowering and at least incredibly frustrating. If you have fallen into any of these, don’t worry! It’s an incredibly easily remedied problem: just ask.

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