Pacing is a simple concept. So why do I find it so hard?


Living with a chronic illness like ME/CFS creates many challenges. Along with the multitude of symptoms, we also have to learn to adapt to the restrictions placed on our lives and to manage our limited energy levels. The term “pacing” crops up repeatedly – “listen to your body and pace yourself”. It’s a technique designed to help us manage our complex symptoms and restricted energy levels. But what if you find pacing challenging? What if your body and mind refuse to let you rest? This is the problem I face and I’ve been looking for ways to address this.

My poor body has been throwing out very clear signs that I’ve been overdoing it recently. Tremors, palpitations, migraines, muscle spasms, cold sores, headaches, increased pain, to name a few. My body is screaming at me to rest. I’m very in tune with my body and I’m fully aware that I need to rest. So why do I find it so hard?

For those of you who haven’t come across the term “pacing” let me take a moment to explain what it means.

What is “Pacing”?

The core principle behind pacing is that you work within your energy envelope. When you have a chronic illness your energy levels are limited and simple tasks can be exhausting. Therefore it’s important to manage the limited energy you have by spreading out tasks throughout the day or even breaking down bigger tasks to smaller ones, taking regular rest breaks, and most importantly listening to your body.

It’s recommended that you rest before you reach you energy limit. This means stopping an activity you enjoy or one you’ve been meaning to do for days or weeks, before you get exhausted, even if you feel able to complete it. This is the part I find frustrating and hard to grasp.

Why I find pacing so hard.

I’ve never been a controlled and sensible person when it comes to my energy levels. Even when I was relatively well I would often have periods where I would push the boundaries of what my body and mind could take. Telling myself to stop and rest when I’m feeling relatively “ok” is an alien concept and my mind refuses to listen. “Just 5 more minutes”, “Just one more paragraph”, “I will finish this, then I will rest”, are all excuses my mind tells me.

But this is not surprising because the clear message portrayed in the media and enforced by society as a whole is to “push yourself beyond your limits”. Resting is seen as being lazy and we are encouraged to test our boundaries and constantly strive to do more. This is a message that can be damaging to those who suffer with a chronic illness.

See, the thing is with a chronic illness like ME/CFS we can often push ourselves to complete tasks but the payback is a bitch. We suffer, sometimes severe, deterioration in our health and increased symptoms if we push ourselves too far. The crash following increased activity can last for hours, days, weeks or even months. This is why pacing is so important, the stakes are so high.

This, to me, is a such a cruel aspect of ME/CFS and also an area which is the most misunderstood by people outside the ME/CFS community. People will see us carrying out tasks and assume we are ok, but they don’t see the consequences of our actions.

I think it would be easier if I COULDN’T physically do something, rather than being able to push myself to do something only to cause myself harm. It’s a constant battle between my body and my mind. It’s a balancing act between what I want to achieve in life and the limitations my body puts on these aspirations. I spend so much time weighing up each activity; Is it worth the payback? How much energy will it use up? Are there more important things I need to save my energy for?

And here’s the kicker; you may complete the same task multiple times over years and the payback each time is different, sometimes mild, sometimes severe. Just because you could do that task last week, doesn’t mean you can today. We never really know how our bodies are going to react.

But resting is boring!

When I have lots of exciting projects on the go, or I have friends visiting or my loved ones need me, I find it almost impossible to calm my mind and put everything aside to rest. I find it difficult to switch my brain off and concentrate on giving my body the time it needs to heal. And the physical symptoms of my illness like pain, muscle spasms and palpitations create another hurdle. My body is in a constant agitated state.

But it’s not just that. Resting is boring! There are so many other things I want to or need to be doing. I know rest is vital to give my body and mind time to recharge and renew, but it feels like such a waste of my life.

It’s not your fault you are ill.

If you also find pacing hard please don’t beat yourself up about it. Our minds and bodies are designed to be kept busy. We crave activity and interaction. I used to blame myself when my health deteriorated as it was often because I had pushed myself too far. But this isn’t a weakness and it’s not my fault my body is broken, just the same as it’s not your fault. Try to work with what you have and rest when you can. The added guilt and frustration triggered when we blame ourselves just adds to the exhaustion we feel, and the severity of the “crash” we experience.

How do you pace yourself?

Just because I find pacing difficult doesn’t mean I don’t try. I know very well the principles of pacing and what I “should” be doing. I just struggle to find the motivation to rest. I find “doing” easier than resting. Pacing and resting take discipline.

I do however find mindfulness meditation a useful tool when I want to calm my mind and focus on my wellbeing. Meditation is a simple and effective way to steady the mind, give clarity to your thoughts and help you to manage stress. This could be in the form of a structured ‘body scan’ or a guided meditation using an app, or simply practising breathing techniques. It’s the most effective method I have found for calming my overactive brain enough to allow myself to rest.

Practical pacing tips from fellow spoonie bloggers.

I could talk you through standard pacing techniques but as I’m crap at pacing myself it seems a bit hypocritical. So instead here are some links to excellent articles written by fellow spoonie bloggers, that give practical advice and simple techniques that will hopefully assist you in your resting life.

10 Top tips for pacing when you have fibromyalgia. By February Stars.

10 Top Tips For Pacing When You Have Fibromyalgia

To do or not to do? That is the real question. By My Med Musings.

The Importance of pacing and fibromyalgia. By Counting my spoons.

The Importance of Pacing and Fibromyalgia

Free ebook download including practical pacing techniques. Take Back Your Life & The Fibromyalgia Coach. By Tami Stackelhouse

You may also find this article usefulPacing with Fibromyalgia & Chronic Fatigue Syndrome.

But the truth is simple; I’m just doing too much and my health is suffering due to this. I need to try and back away from the stresses of life and prioritise rest and pacing. I’m fully aware of the importance of rest and I know many techniques that help with pacing, but I’m not giving myself time to practice them.

Therefore, I’m going to be taking a bit of time off from my blog. It could just be a few days or maybe a couple of weeks. Knowing me I won’t be able to stay away for long but please bear with me while I take the time to heal. Take care x

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Let me introduce myself

My name is Jo Moss, I am 43 and I have struggled with poor health all my life. After years of tests I was finally diagnosed with ME/CFS in 2006 and later with Fibromyalgia in 2013. I am hypersensitive to everything and intolerant to most prescription medication, so it’s been a struggle to find anything to ease my symptoms and to make my life bearable. Rather than helping, the side effects from the cocktail of drugs my GP and consultants have prescribed has actually worsened my health.

In addition to severe ME/CFS and Fibromyalgia I have also been diagnosed with osteoporosis, IBS, anxiety and panic attacks, depression, migraines and insomnia. My health deteriorated so badly that I had a full mental and physical breakdown about 5 years ago. I have been virtually bed bound since and desperate to find something to help with my crippling pain and anxiety. I have been suicidal many times as I couldn’t see the point in going on if this was what my life was to be like, life didn’t seem worth living. But I’m still here and every day that goes by I feel physically and mentally stronger.

Reading that back it sounds so depressing but the reason I’m writing this blog is to give other people, who are in the same position, a bit of hope. My life isn’t easy but it is worth living. I may cry a lot but I also laugh a lot. I may get depressed but I’m also optimistic. No matter how bad things seem right now they will get better. You can take back control and give yourself hope for your future.

I must add that I probably wouldn’t be alive today if it wasn’t for the love and support of my amazing husband, family and friends. Thank you.

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Could medical cannabis be a treatment option for chronic pain patients living in the UK?

I have suffered with chronic pain all my adult life. I am a fibromyalgia patient who has exhausted all conventional routes for treating my condition. I have been prescribed a multitude of different pain medications over the years, and they have all either been ineffective for my pain, or the side effects have been too severe for my body to tolerate. I currently take CBD (Cannabidiol) oil, which has been somewhat effective for treating my pain, but I still suffer severe pain when my symptoms ‘flare’. I have extensively researched cannabis as a source of pain relief and I see it as a viable option. If CBD is partially effective, it makes practical sense that a full spectrum cannabis product including THC (Tetrahydrocannabinol), would be an even more effective solution. But is medical cannabis even a legal option for me at the moment, as a chronic pain patient living in the UK?

How effective is cannabis for chronic pain conditions?

In a comprehensive, Harvard-led systematic review of 28 studies examining the efficacy of exo-cannabinoids (e.g. synthetic formulations or cannabinoids from the plant) to treat various pain and medical issues, the author concluded, “Use of marijuana for chronic pain, neuropathic pain, and spasticity due to multiple sclerosis is supported by high quality evidence.”

Of the studies reviewed, six out of six general chronic pain studies and five out of five neuropathic pain studies found a significant improvement in symptoms among patients.

The truth is, there is still a lot of research that needs to be done to determine the effectiveness of cannabis based medication for treating chronic pain, and the results from clinical trials are very limited. But cannabis is fast becoming a promising solution for the treatment of chronic pain, offering sufferers pain relief without the side effects associated with opioid use.

Recent developments in the UK.

If you have be keeping up-to-date with the recent news with regards to medical cannabis laws in the UK, you will know that the government has recently shifted it’s thinking towards the potential medical benefits of cannabis. The government’s stance was always that cannabis had no medicinal properties and this was the reasoning behind it’s schedule 1 classification.

Following a couple of high profile cases the government ordered a review on medical cannabis and set up a temporary panel to assess applications for licences on a case-by-case basis. The government also ordered a review into current evidence of the medicinal benefits of cannabis based products and the appropriateness of their place within Schedule 1 of the Misuse of Drugs Regulations 2001.

The Cannabis Scheduling Review carried out by Dame Sally Davies (CMO) stated:

“Schedule 1 drugs by definition have little or no therapeutic potential. As summarised in this review, there is now conclusive evidence of medicinal benefit of cannabis based products for certain medical conditions, and reasonable evidence of benefit for indications that they may be useful under restricted circumstances.

My recommendation is that cannabis based medicinal products are moved out of Schedule 1 of the Misuse of Drugs Regulations 2001. It may be pragmatic for them all to be moved to Schedule 2 pending a fuller review by ACMD that can differentiate different products into the appropriate different Schedules.”

This was further backed by the recent recommendations put forward by Advisory Council on the Misuse of Drugs (ACMD) to the Home Office about the scheduling of cannabis-derived medicinal products.

“The ACMD agrees with the Chief Medical Officer for England (CMO) that there is now evidence of medicinal benefit for some Cannabis-derived products in certain medical conditions for some patients.

The ACMD advises that clinicians in the UK should have the option to prescribe Cannabis-derived medicinal products that meet the requirements for medicinal standards to patients with certain medical conditions. It is therefore appropriate for these medications to not be subjected to the requirements of Schedule 1 of the Misuse of Drugs Regulations 2001, as amended (MDR)”

Therefore, we can conclude that cannabis is likely to be rescheduled to Schedule 2 from Schedule 1, allowing it to be prescribed where a GP or other health professional deems it applicable, however, the fact remains that there are still few studies into medicinal access and most medical professionals are still not educated enough to prescribe it.

So what does this mean for chronic pain patients who think they may benefit from cannabis based medication? In the future GPs may be in the position to prescribe cannabis but as things stand at the moment, the only option would be to submit an application through the temporary panel that has been set up. What is the likelihood that an application for a medical cannabis licence would be successful for these conditions?

To answer these questions we must first establish the criteria behind the application process, and the potential barriers that have been put in place for patients wanting to access medical cannabis.

Application process and requirements for eligibility.

Who is eligible to apply?

Anyone who feels that they will benefit from taking medical cannabis, has backing from their clinician and has exhausted all conventional medication, in principle, can apply for a medical cannabis licence; no medical conditions have been excluded from this process. But in reality, the conditions of eligibility place significant barriers that make the application process very daunting, and unrealistic for most patients.

The following conditions apply to all licence applications to the panel:

1. You cannot apply yourself.

Patients cannot apply themselves, their clinician must do this. This means that, not only must your clinician have knowledge about cannabis based medication, but they must also be willing to take the time, and risk, to back your application. This is a huge barrier considering the majority of UK doctors are ignorant with regards to cannabis-based medication, not through fault of their own – cannabis science and the endocannabinoid system are not taught in medical schools. You could carry out your own research and try to educate your doctor, but it is unlikely that any doctor would be willing to take on the responsibility of prescribing a substance they have not been trained to prescribe. The lack of evidence about the effectiveness and safety of cannabis based medication is also a barrier.

Sir Mike Penning (MP) stated that “the implication that any prescribing clinician will be taking on personal liabilities” would deter many doctors from agreeing.

2. Doctors will have to prove there is an “exceptional clinical need”.

Patients must have exhausted all other treatment options before receiving access to medical cannabis, which could delay receiving the medication that works for many months. Doctors will have to prove there is an “exceptional clinical need” and no other medicine would be suitable for their patient. If given approval, doctors will then be able to write a prescription.

3. Evidence must be provided.
There is also a requirement that if the medicine has not been tried (by travelling abroad) then it must have been through a clinical trial – which being illegal, most cannabis medicines have not been subjected to clinical trials.

Realistically, travelling abroad, is not possible for the majority of patients, therefore it is hoped evidence from clinical trials and experience from other patients with similar conditions will be sufficient. This highlights another barrier as there are very few, if any, double blind trial results to use as evidence.

4. Cost

The current cost is £3,665 per licence application. It isn’t 100% clear who would be liable to cover this cost but in England it’s likely to be your local CCG (Clinical Commissioning Group), and there is no guarantee that this fee will be authorised. This cost is likely to prohibit many patients from gaining access to medicinal cannabis, although this cost is under review.

What advice is available if you decide to apply?

If you do decide to put in an application, the advice given by Hannah Deacon, who has already gone through the process to access medical cannabis for her son Alfie Dingley is; Educate yourself. Research what options are available. Full spectrum cannabis products are very different to CBD products which are currently legally available in the UK. Don’t assume your doctor will know anything about cannabis – be prepared to educate them. Collect as much evidence as you can and contact the organisation ‘End our pain’, they are in the process of compiling a guide into the application process.

What is the likelihood an application would be successful?

The truth is; no one knows. This process is new to everyone involved so the outcome cannot be predicted. If you can meet the criteria stated, and you have the backing of your clinician, then it’s possible; no medical conditions have been excluded from this process. However, there are a lot of barriers that have been put in place which will prohibit the majority of patients from gaining access to medicinal cannabis. The biggest barrier being; the fact that there are still few studies into medicinal cannabis and the medical professionals are still not educated enough to prescribe it.

The licences granted so far have been for patients with epilepsy. Sativex (nabiximols) has been available to a limited number of MS patients for a while now, but to date no licences have been granted for chronic pain conditions like fibromyalgia. But this doesn’t mean it’s not possible, and it doesn’t mean you shouldn’t try.

The current application process is a temporary one and permanent definitive process will eventually be implemented. But no one knows whether ‘temporary’ means weeks, months or even a year.  Is it worth waiting until a permanent definitive process has been implemented? Is it worth waiting for the cost to be reviewed? Possibly, but we don’t yet know what medical conditions will be eligible once this permanent process has been implemented; will there be a strict limited set of conditions eligible or will anyone who’s doctor thinks they will benefit from medical cannabis be allowed to apply?

Personally, I’m going to have to wait and see what the next step is. I don’t have the backing of either my GP or Rheumatologist. Hopefully, once a permanent application process has been implemented, my options will look more promising. Until then, I will continue to treat my pain with CBD oil and and follow developments closely.

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11 Strategies to Combat Negative thoughts and Emotions.

 

This is a post I wrote especially for ProHealth’s Inspirational Corner and it first appeared there on the 3rd July 2018.

“Self compassion is simply giving the same kindness to ourselves that we would give to others”

We often talk about the physical symptoms we have to deal with when living with a chronic illness but we often shy away from discussing the negative, raw emotions that surface too. Anger, resentment, frustration, grief for your past life, self pity and desperation, are all emotions we face on a daily basis. But the hardest emotion I find is guilt. Guilt for having to constantly ask for help even when my husband is exhausted from working long hours, guilt for having to cancel plans at the last minute when I’m not well enough, guilt for not being strong enough to emotionally support my loved ones, guilt for not being able to cook for my husband, guilt for being emotionally needy, guilt for not having a smile on my face when I’m in pain, guilt for not being the life and soul of the party, guilt for all the things my husband is missing out on, guilt that I can’t be the woman he married. That’s a whole lot of guilt for one person to be carrying around.

I have always enjoyed looking after my husband, I know it might sound old fashioned but I always felt pride in cooking for him and keeping a nice house. I have always been in charge of the household finances and been emotionally strong and independent. Don’t get me wrong, I’m not the sort of person who spends hours each day cleaning and I’ve always had a full life, but I took pride in these things.

But that all changed 5 years ago when I became virtually bed bound due to severe ME/CFS and fibromyalgia. My physical and mental health had been deteriorating for years but rather than accept my limitations and rest, I did what many of us do and tried to push through. I hoped by ignoring the signs and fighting on, I could somehow beat the illness. I fought for years before I finally admitted I wasn’t coping and needed help.

So, the tables turned. Not only could I not look after my husband anymore, I couldn’t even look after myself. I couldn’t clean, I couldn’t be an emotional support for my husband, family and friends. I needed help with personal hygiene, I couldn’t even shower myself without my husband’s help. I hated having to ask for help. This was a huge shift for me and a big change like this brings a multitude of negative emotions – I often feel inadequate, selfish, a failure, pathetic and full of guilt.

Fortunately I’ve discovered lots of tools to challenge these difficult thoughts and emotions, they’re still a work in progress but I really want to share:

11 strategies for combating these negative thoughts and emotions.

1. Self compassion.

The biggest and most important strategy I’ve discovered is learning how to show myself compassion. Having compassion for oneself is really no different than having compassion for others. To have compassion for others you must notice that they are suffering. Having compassion also means that you offer understanding and kindness to others when they fail or make mistakes, rather than judging them harshly. And when you feel compassion for another, it means that you realise that suffering, failure, and imperfection is part of the shared human experience. We need to find a way to show ourselves the same compassion we show offers.

2. Prioritise your health and happiness.

It’s easy to get down on yourself and feel like you aren’t worthy of being the number one focus of your own life, but sometimes, you’ve just got to devote some time to your own needs, hobbies, and enjoyment. It helps you feel balanced and appreciated in the rest of your life, which can only be a good thing. I’ve spent so much time apologising and feeling bad about asking for help that I’ve often forgotten about my own needs and feelings. I also often forget that I didn’t ask for this either, it’s not my fault I’m ill.

3. Communication.

I hide a lot from my loved ones because I don’t want to worry or burden them, but this is often counterproductive. By bottling up our emotions they grow and become much bigger problems – we give them power by shutting them away. I’ve found that communication makes a huge difference. Talk to your loved ones about how you are feeling, they may be feeling negative emotions too, they may feel they don’t do enough, or feel frustrated that they can’t take away your pain. Talk to your support network, whether that’s friends online or in real life, about how you are feeling, we are often so self critical, a bit of perspective can achieve a lot.

4. What would a friend tell you?

One tip that has really helped me is asking myself what a friend would say. We spend so much of our lives talking negatively to ourselves. If a friend was experiencing these same problems and negative emotions, what would you say? Write a letter to yourself, but imagine you’re writing it to a friend. What would you tell them about what they’re doing? Would you say they weren’t good enough or that they’re not worthy? No, you wouldn’t. Chances are you would be supportive, encouraging and positive.

5. Positive affirmations.

When I pay attention to how much strength it takes just to survive, and I focus on how far I have come and what I’ve achieved, I find it easier to let go of my negativity.

You need to realise you are worthy, you are a good person and you have a lot to offer despite your poor health. On a day when you feel emotionally stronger, spend a few minutes writing a list of your strengths. If you don’t feel able to do this, ask a friend to do it for you.

Spend a few moments each day reading this list and thinking about what makes you unique, what you bring to your relationships, what makes you a good person and what makes you worthy of love and compassion.

6. Do things that make you happy.

When you live with a chronic illness the limited energy you have is normally used up carrying our practical tasks like washing, cleaning etc. We feel we ‘should’ prioritise what we perceive to be essential chores but this often does not leave us with the energy to do the things we enjoy. Having fun, smiling, laughing, spending time with friends and relaxing are essential for our wellbeing.

7. Rest and restore.

These negative emotions often arise when we are physically exhausted – fatigue makes everything harder to deal with. Concentrate on being kind to yourself – rest and find ways to heal yourself.

8. Acknowledge your life is tough.

I try my best to remain positive but sometimes life throws too much at me and I become overwhelmed and exhausted. It’s at times like this that guilt sets in – I feel weak, I feel like a failure, I feel like a burden. My emotions take over and my mental health deteriorates. But the truth is – I’m not weak and neither are you – we just have a lot to deal with.

9. Focus on your abilities, not your disabilities.

To alleviate the frustration that often accompanies a chronic illness I try to concentrate on what I can do rather than what I can’t do. Acknowledging my abilities rather than focusing on my disabilities has been very liberating and is an excellent tool for enhancing well being and self worth. It also helps to reduce negative emotions.

10. Acknowledge your feelings are valid.

Although these negative thoughts and emotions are exhausting and often represent a warped perception of reality, we need to acknowledge they are valid. It’s completely understandable, given the challenges of poor health, that you experience these frustrations. Please don’t beat yourself up about feeling this way.

It’s perfectly natural to spend time grieving the life you have lost, it’s a vital part of the healing process. We often forget the importance of acknowledging grief and when we don’t give ourselves this time to mourn, anger and guilt can take over.

11. Remove self blame.

This is a big one for me! It’s not our fault we are ill and it’s not our fault we need to ask for help! The limitations our poor health places on our lives need to be acknowledged. We need to accept them and encourage those around us to accept them too. Let’s commit to stop blaming ourselves for what is out of our control.

When these negatives emotions rear their ugly heads, the best thing we can do is cut ourselves some slack. Be kind to yourself – show yourself some compassion. Rather than beat yourself up, try to rest and find ways to heal yourself. By focusing your energy on self love and compassion you bring a calmer, more centred person into your relationships.

But please don’t forget; It’s ok to feel overwhelmed, it’s ok to feel sad or depressed, it’s ok to feel angry about your situation, it’s ok to cry, it’s ok to ask for help, it’s ok to admit you are not coping, it’s ok to have bad days – you are only human. Take care.

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40 things I wish I could tell my younger self.

One of the main reasons I started writing my blog was to reach out and help others.  When I write my posts I pretend I am speaking to my younger self; whether that’s the anxious child fearful of the world around her, or the depressed teenager desperate to fit in and be liked, or the broken adult suicidal from pain. This post is a collection of thoughts and realities that I wish I had known when I was younger, and some I am still trying hard to grasp as an adult.

1. Don’t be ashamed of your story and who you are. Don’t waste your time hiding the real you and trying your best to fit in. Embrace you quirks and flaws – they are what make you unique.

2. It’s ok to admit you are not coping it is not a sign of weakness. It’s ok to cry, it’s ok to ask for help, it’s ok to admit you are not coping, it’s ok to have bad days – you are only human.

3. Failure is not a negative thingit teaches us so much. I was a high achiever at school – I don’t remember failing any exams, but the longer I didn’t fail, the more fearful I became of failing, so much so that it prevented me from trying new things as I was scared that I wouldn’t be any good.

4. It’s ok not to be good at everythingIt’s ok to do something just because you enjoy it, not because you are good at it.

5. Perfection is not real. No one is perfect. Pushing to achieve perfection just leads to frustration and feelings of inadequacy.

6. Anxiety and depression are ‘Real’ medical conditions and you are not alone in how you feel. My teenage years were a scary time, I had no idea what my feelings meant – I thought I was a weirdo and alone in how I felt. I wish I could hug her and tell her it isn’t her fault too.

7. Self compassion is so importantYou are worthy of love and compassion. “Treat yourself as you would treat a good friend”. We all makes mistakes – forgive yourself and move on. I still really struggling with this one but I’m starting to learn how to show myself the same compassion I show others.

8. It’s ok to say no sometimes, and it’s vital to set boundaries.

9. Stop comparing yourself to other peopleYou are unique, celebrate your uniqueness. No one has it all figured out.

10. It’s not self indulgent to spend time congratulating yourself on your achievements. Pause and enjoy the moment before racing on to your next task or goal.

11. Celebrate your abilities, not your disabilities. Rather than criticising yourself for what you can’t do or who you are not, concentrate on what you can do and who you are.

12. Accepting your current situation does not mean you are giving up. Acceptance is liberating and vital for your well being.

13. You are not superwomanCut yourself some slack.

14. Don’t take yourself so seriously – it’s ok (and healthy) to laugh at yourself sometimes. I have always been quite serious and taken myself too seriously. This inability to laugh at myself has made me more susceptible to being hurt by others.

15. There are practical ways to manage your anxiety. I wish I could take my younger self aside and walk her through some strategies for coping with anxiety, like mindfulness. It’s taken me years to acquire these skills but for so long I struggled alone.

16. Grieving is an important part of the healing process. I wish I could tell my younger self how important it is to talk about and remember loved ones, no matter how painful it is. It’s part of the grieving process and memories are precious – celebrating their lives helps us heal. We often forget the importance of acknowledging grief and when we don’t give ourselves this time to mourn, anger and guilt can take over.

17. Your feelings are, and will always be, valid.

18. You don’t have to wear your pain like a badge of honour. I fought against taking painkillers and antidepressants for a long time because I saw it as a sign of weakness – I felt I needed to prove how tough I was.

19. Physical appearance has no bearing on happiness. Weight has no bearing on happiness – your self worth is not determined by a number on the scales. Everyone has a part of their physical appearance they don’t like – even the beautiful people.

20. Success is not measured by monetary wealth and possessions. Success is measured by health, happiness, love, balance, family and friends.

21. Things can change in a heartbeatfor good or bad. If you are going through a tough time, know it won’t last forever, and if things are good, make the most of every minute. But change isn’t something to be feared – embrace it.

22. Being popular isn’t the be-all-and-end-allHaving a few close and loyal friends is more important.

23. There are ways to cope with negative emotions without beating yourself up further. Anger, resentment, frustration, grief, self pity, guilt and desperation, are all emotions I have faced throughout my life. Self compassion, forgiveness, removing self blame and finding time to pause, reflect, rest and restore – I wish I had known about these when I was younger.

24. Take care of your body and mind – you are not invincible.  I have abused my body and mind far too much over the years. When I was younger I felt invincible and this was often reflected in my actions.

25. Nothing is as bad as it first seems. Take a step back; pause, reflect, rest and relax.

26. Rest, relaxation and reflection are vital for your mental and physical health. I have always (before becoming ill) lived life at 100mph not allowing myself to rest, mainly through fear of allowing my dark thoughts time to surface, but also because I wrongly thought by resting I was being lazy.

27. It’s important to be yourselfit’s the only way to be truly happy. Pretending to be someone else is admitting you are somehow ashamed of the real you. You don’t have to constantly try and prove yourself to others.

28. It’s ok to be a geek. Learning is cool, books are cool (although by saying cool I’m probably acting uncool and showing my age) You don’t have to hide your love of these things to try to fit in.

29. Everyone you meet has something to teach youEveryone has their own unique story. Take a moment to pause and listen.

30. Choose your battles. You don’t always need to be right – sometimes it’s best to let it drop and move on. Preserve your energy for more important things.

31. When someone compliments you; believe it, smile and say thank you – you are worthy.

32. You can’t control everything. Trying to control what is out of your control just leads to frustration and anger.

33. Find time to do what makes you happyThere’s a bit if a theme going on here. Have I made my point?; happiness is vital. You deserve happiness – right now.

34. It’s ok to spend time doing fun things There doesn’t always have to be a reason, purpose or goal for everything you do in life. You don’t always have to be ‘getting things done’.

35. It’s ok to show your weaknessesIt’s ok to let your guard down and ask for help- you don’t have to be strong all the time.

36. You can’t help everyone and not everyone wants your help. If I see someone is hurting, then I want to help heal them. But the truth is; I can’t help everyone, not everyone wants to be ‘saved’, and some people are not deserving of my love and energy.

37. Mental health is just as important as physical healthdon’t let anyone convince you otherwise.

38. Suffering from a mental illness does not make you a bad person. Neither is it a sign of weakness or something to be ashamed of.

39. Try to leave the past in the pastNo matter how much you worry about past mistakes, you cannot change them.

40. You can’t please everyone, all the time. There is always going to be someone who disapproves or disagrees with what you are doing. But that’s ok – you don’t need their approval or validation, just be true to yourself. And it’s ok if someone doesn’t like you – It’s not a reflection of your character or self worth, and it doesn’t mean you are a bad person. Do what makes you happy.

Writing this list has been a real eye opener for me and has made me question a lot about how I perceive myself, and the enormous amount of pressure I have put on myself over the years.

Where did I get this notion that I had to be tough and strong all the time? When did I first start believing that I had to take on the world to prove I was brave? When did I stop asking for help because I saw it as a sign of weakness? When did I decide everything I did in life needed a purpose and a goal – doing something just because it’s fun seemed frivolous and wasteful? When did my self worth become intertwined with my weight and physical appearance? – Did society teach me this? We are all the product of our genes and our environment – but how much of this negative perception of myself has been taught, and how much is due to the mental and physical illnesses I inherited? I hope by writing these thoughts of encouragement down I can cut myself some slack and give myself time to heal.

What words of encouragement would you give to your younger self?

For more personal stories, reviews, news, inspirational quotes and in-depth discussion, please head over to my Facebook page.

A Comprehensive Beginners Guide to Buying CBD Products.

As CBD becomes more popular, the range of options available grows. In the UK we have a thriving CBD market but not all products are equal, and sadly not all suppliers are what they seem. So how do you decide what CBD products to try and how do you avoid being ripped off? How do you choose a safe, legal and effective CBD product for your needs?

The following is designed as an aid to guide beginners in choosing effective and safe CBD products. The amount of information may seem overwhelming to begin with but taking the time to educate yourself now could save you a lot of money and frustration in the long run.

What is CBD?

Firstly, let’s establish what CBD is. In simple terms, Cannabidiol (CBD) is one of the most prevalent chemical compounds (cannabinoids) in the cannabis plant. Unlike the more famous molecule, tetrahydrocannabinol (THC), CBD is non psychoactive so therefore will not get you high. It’s legal and safe, and has been shown to have many potential therapeutic benefits.

How does CBD work within our bodies?

Without getting too technical, CBD and other cannabinoids in CBD products, interact with the body’s native endocannabinoid system. This system, found in all mammals, is tasked with regulating a wide array of the body’s functions like mood, appetite, sleep, hormone production, and even pain and immune system responses. The endocannabinoid system is regularly adjusting these functions in an effort to keep them in balance.

A properly functioning endocannabinoid system is crucial for our health and well-being. It serves the vital purpose of ensuring our cells maintain optimum performance. CBD helps our endocannabinoid system make adjustments to bring our bodies back into balance, or homeostasis.

CBD delivery methods.

CBD comes in many forms including oil and paste (oral use), vape liquids, capsules, edibles, tea and topical balms or creams. Which method of consumption you choose is largely down to personal preference but the bioavailability (absorption rate) varies with each method. I will discuss this further in a later post.

What are you looking to treat?

Your reason for taking CBD will affect the product you buy. Different cannabinoids and terpenes have different potential therapeutic benefits. By looking at the lab reports for each CBD product you can match a CBD product to your individual needs.

What are cannabinoids?

Cannabinoids are a large class of chemical compounds produced by the cannabis plant. CBD is not the only Cannabinoid found in Cannabis. In fact, scientists have identified over 113 different cannabinoids in the cannabis plant, each interacts with the endocannabinoid system in different ways. For example, a CBD product with high levels of CBDa may be effective for pain conditions because CBDa is a good anti inflammatory. While a CBD product with added CBG may be good for anxiety and insomnia, due to it’s relaxing properties.

Some of the main cannabinoids and their characteristics:

CBD – Antibacterial. Promotes bone growth, Reduces seizures. Reduces blood sugar. Reduces inflammation. Reduces vomiting and nausea. Relieves pain. Neuro- protective. Inhibits cancer cell growth. Relieves anxiety.

CBDa – Reduces inflammation. Inhibits cancer cell growth

CBG – Aids sleep. Relieves anxiety. Muscle relaxant. Slows bacterial growth. Promotes bone growth. Relieves pain.

CBC – Inhibits cancer cell growth. Promotes bone growth. Reduces inflammation. Relieves pain.  

THC and CBN are controlled substances in the UK. Therefore, for a CBD product to be legal, it must only contain trace amounts (below 0.2%) of these compounds.

What are terpenes?

Cannabinoids are not the only compounds found in Cannabis. Terpenes are fragrant oils that give cannabis its aromatic diversity. Terpenes, like cannabinoids, interact with the body’s endocannabinoid system. They also have their own individual beneficial properties, and when taken alongside cannabinoids, produce what’s called the Entourage Effect. So when looking for the right CBD product for you, the terpene profile is also an important consideration.

Some if the main terpenes and their characteristics:

Pinene – Anti inflammatory. Anti bacterial. Aids memory. Promotes alertness.

Myrcene – Sedative. Sleep aid. Muscle relaxant.

Limonene – Treats acid reflux. Anti anxiety. Antidepressant. Relaxing.

Terpinolene – Analgesic. Pain reduction. Digestive aid.

Linalool – Anti convulsive. Analgesic. Anti anxiety. Promotes relaxation.

Terpineol– Calming aid. Antibacterial. Antiviral.

Caryophyllene– Anti inflammatory. Analgesic.

Humulene – Anti inflammatory.

Extraction method.

The most popular extraction method is CO2 extraction – this allows for plant extraction without using harmful chemicals.  Alcohol extraction is another method used but if, like myself, you are sensitive to alcohol, this should be avoided. Alcohol extraction in the hands of amateurs or scammers can lead to an unsafe CBD product but in the hands of experienced professionals it is an effective and safe extraction process.

Carrier oil.

CBD oil contains a hemp extract which is mixed with a carrier oil. Hemp oil, olive oil and MCT oil are popular choices. For some people, like myself, the type of carrier oil is important. Whether down to personal taste (some carrier oils are more palatable) or allergies or intolerances, the type carrier oil may need to be considered when choosing your CBD oil. I personally avoid olive oil as it aggravates my IBS and acid reflux, but we all react differently.

How to stay safe and avoid scammers.

As CBD becomes more popular, more amateurs and scammers are jumping on the bandwagon. Please stay safe by following some simple rules. By carrying out the following checks you can minimise your likelihood of being ripped off:

Get recommendations. This could be from friends or from an unaffiliated CBD support group.

Do they provide third party verifiable lab reports on request? All reputable companies will be happy to provide lab reports that prove the purity and potency of their CBD products.

Does the price match the potency advertised? Price is often an indicator that a CBD product may not be as it seems. Whether misleading labelling or down right lying about the CBD content – if it seems to good to be true, it often is.

Are the company happy to answer your questions or do they seem guarded and suspicious? A reputable company will be happy to provide you with any information they have about their CBD products.

Are they members of the CTA UK? Although not a legal requirement, to become a CTA member certain checks have to take place.

Is the company making medical claims? CBD is sold as a food supplement in the UK. To sell CBD legally companies are not allowed to make medical claims. If a company is doing so, it may be an indication that they are not reputable.

The Cannabis Trade Association UK (CTA UK).

If you don’t feel confident carrying out your own checks on potential suppliers, then buying from a CTA member or registered company could be a good choice. The CTA UK works with all sectors of the hemp and cannabis industry to promote good practice, provide practical advice and ensure consumers of legal cannabis and hemp products have access to top quality information. They also carry out checks on all members. Please note it’s not a legal requirement for CBD companies to register with the CTA, so just because a company is not a member, does not mean they are not reputable.

For more information please visit their website http://cannabistrades.uk/

Labelling.

CBD products are labelled with either milligrams (mg) of CBD or the percentage of CBD, and sometimes both are present. For example; 500mg of CBD within a 10ml bottle of CBD oil is 5% strength. The 500mg refers to the total CBD contained within the 10ml bottle, while the 5% refers to the concentration of CBD.

Unfortunately labelling is not standard across all CBD products. Some companies take advantage of potential customers lack of understanding. Educate yourself so you do not become a target. The labelling should state total amount of CBD per product but unfortunately some companies deliberately confuse customers by stating the amount of hemp extract in the product, or the percentage of CBD in the extract, rather than the total CBD.  For example; if the hemp extract used contains 15% CBD and they use 1000mg of extract to make a 10ml bottle of CBD oil – some companies would label this CBD oil as 15% or 1000mg (10%), when in reality it’s only 150mg (1.5%).

If in doubt, don’t be afraid to ask questions, ask for the lab report, be direct and ask if the percentage or mg refers to the total CBD in the product or just the extract. If you are still insure, join a CBD support group and ask lots of questions or even better, choose a supplier with clear and transparent labelling.

Lab reports.

Reputable companies will provide lab reports for their CBD products. These are important as they confirm the safety and potency of the product, but they also allow you to match your needs to the individual CBD product. Some, or all of the following information should be on the report:

  • Potency testing
  • Pesticide testing
  • Microbiological testing
  • Terpene profile
  • Cannabinoid profile
  • Residual solvents testing

Unfortunately some unscrupulous suppliers may attempt to forge or edit lab reports, so it’s important you carry out a few simple checks. You need to be able to verify the report is genuine, and for the company and product stated. To do this you need to check the report has the following information:

  • Name and contact information of the lab company.
  • Is the name of the client the same as the name on the product you purchased (final product)?
  • Is the name of the product tested the same as label on the product you purchased (final product)?
  • Does the report look like it has been edited?

Strength of the CBD product.

A common misconception is that you need a high strength CBD product for it to be effective. In most cases, starting with a high strength can actually be detrimental, and a low and slow method of introducing CBD is preferable.

There are a few reason to start low and slow:

  • You need to give your endocannabinoid receptors time to become more active.
  • CBD works in a bell curve so once you reach optimal symptom relief, more CBD does not mean more relief.
  • Cannabinoids like CBD has biphasic properties, which means that low and high doses of the same substance can produce opposite effects, so CBD can have different effects at different doses. For some that can mean high doses of CBD are sedating but for others, high doses cause heightened anxiety or paranoia.
  • Also, we all react differently, some people are naturally sensitive to CBD, while others may find they are allergic or intolerant to the ingredients in CBD products. Taking a low dose to begin with gives you the chance to test how your body reacts without overloading it.

Therefore, taking a CBD product that is too strong, too soon is not only a waste of money, but it can also have a negative effect on your health.

It needs to be noted that certain conditions, like epilepsy may need higher doses of CBD from the outset, so what condition you are looking to treat is also an important consideration.

Dosing.

While we all react differently to CBD, a low and slow approach to introducing CBD is often recommended. But what does this mean? In terms of CBD oils, a strength of between 2.5- 5% is ideal, starting with approximately 1 drop, 3 times a day. This equates to a starting dose of 2-3mg, 2-3 times a day. It’s best to stick to this dose for about a week and then slowly increase until you get the desired results. As I mentioned previously, the low and slow approach may not be suitable for conditions involving seizures, like epilepsy.

Full spectrum vs CBD isolate.

There are CBD products on the market that contain CBD alone (made from CBD isolate), and others that contain an array of cannabinoids and terpenes. But what is the difference? As I have discussed, each cannabis compound has its own potential therapeutic benefits. Therefore a product containing a full array of cannabinoids and terpenes should have a more beneficial effect on the body than one made from CBD alone. The combined benefits of all the compounds found in Cannabis in known as the Entourage Effect – the combined effect is greater than the individual components. Therefore a full spectrum CBD product is seen as being superior to a CBD only product.

It is also worth noting that, CBD oils and edibles made from CBD isolate, are now banned under the Novel Foods Act.

Price.

I know price is a big consideration for a lot of people but please don’t base your choice of CBD product solely on price. No matter how cheap a product is, it is still a waste of money if it doesn’t contain the cannabinoids and terpenes needed to be effective for your personal health challenges. Also, price does not always reflect quality. Just because a CBD product is expensive does not mean it’s superior or the right product for you.

Indica vs Sativa.

Please don’t be mislead by the Indica/Sativa debate – it’s really just a marketing term. Apart from the legality of Indica strains (which I’m not going to delve into here), the truth is, once the THC has been removed from the equation, the strain is irrelevant. CBD is CBD no matter what strain it comes from. Whether a CBD product produces a relaxing or stimulating effect is due to the array of cannabinoids and terpenes present, not the strain.

For example a CBD product containing higher levels of CBG and Myrcene (terpene) will have a more relaxing effect, while one containing more Pinene (terpene) may cause you to be more alert. Also we all react differently to CBD. Some people naturally find CBD stimulating while for others it can have a sedating effect.

Join a CBD support group.

I know there is a lot of information to take in, but by doing a bit of research before starting your CBD journey, you can save yourself a lot of time and money in the long run.

If you would like to find out more about CBD, I help run a CBD support group here on Facebook. All advice and information given is impartial and unbiased. 

https://www.facebook.com/groups/CBDusersUK/

Thank you for reading. Please feel free to ask any questions about CBD, I will do my best to answer them. Good luck on your CBD Journey.

I have lots more CBD related articles on my website. Please click here to read them.

I’m also on Facebook if you would like to follow me.

Have you tried CBD? How has CBD helped you?

Please note: I am not a medical professional. Although CBD is sold as a food supplement in the UK, it can interact with certain medication. I would always recommend you speak to your pharmacist or GP about any possible interactions.

https://cbdoilreview.org/cbd-cannabidiol/cbd-p-450-enzyme/

For more personal stories, reviews, news, inspirational quotes and in-depth discussion, please head over to my Facebook page.

How to recognize anxiety in yourself.

I can recognise all of these in me except procrastination. I have a complete inability to procrastinate. I’m so impulsive – as soon as I think about something I have to do it. If I wait, my mind just runs through the ‘task’ in my head over and over again, thinking about every possible outcome. These thoughts become so obsessive that I cannot concentrate on anything else and they can last for hours or even days – it’s exhausting and often triggers a panic attack. So I have learnt just to do it when I think about it – where possible.

#ajourneythroughthefog #chronicillness #MECFS #mentalhealthawareness#fibromyalgia #blog #anxiety #depression #selfcare #love

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Depression: Coping when our loved ones are also ill

From the Blurt Foundation

Living with depression is incredibly difficult; not just for those of us who are unwell, but for our loved ones too. There’s not one area of our lives that depression doesn’t touch.

When a loved one has depression, we feel the effects of the illness on our relationships, and we often feel helpless, confused and uncertain. When we have depression, and have a loved one who also has depression, it can feel impossible to navigate. Depression can affect different people in different ways. It’s tough on our psyche to both simultaneously need support, and to want to do all that we can to give it – especially as there’s a shared understanding of the illness.

The ME/CFS Community needs your help.

The reason I started writing about my experiences was to raise awareness of invisible illnesses like ME/CFS and Fibromyalgia, and to try to reach out to help others who are suffering like myself. I often feel I’m not doing enough to raise awareness, so today’s post is an attempt to rectify this. ME/CFS has the biggest detrimental affect on my life so I’m going to start there. Can you help me?

*What is ME/CFS?

Currently it is estimated that some 250,000 people in Britain are affected by ME/CFS. This figure is estimated to be 17 million worldwide. Yet there is still very little known about this illness and only minimal funding has been made available for research into causes and possible treatments. Patients are still commonly misdiagnosed or told the symptoms are all in their head. There is currently no cure and no universally effective treatment. Those treatments which have helped reduce particular symptoms in some people have unfortunately proved ineffective or even counterproductive in others.

http://www.meassociation.org.uk/about/what-is-mecfs/

*An ME/CFS Revolution

Since the release of the incredibly powerful film Unrest, I feel like a revolution is happening within the ME/CFS community. Our illness is finally being discussed in the mainstream media and we are finally being taken seriously. For years we have fought so hard to have a voice but we have gone unheard.

The ME/CFS community is a community of Fighters. We have had to shout (not literally) to be heard and to battle the stigma of not being believed, and to raise awareness, because if we didn’t do it we would be forgotten.

I have had to fight every step of the way. I had to fight to be taken seriously or just to be listened to by doctors. I had to fight to get a diagnosis. I had to fight to get treatment or access to the medication that could ease my pain. I had to fight to get the health benefits I need to live. I had to fight to get the adaptations and mobility aids I need to function.

I have to fight the stigma and the non believers who say it’s all in my head. I have to fight the pain, the exhaustion and the frustration. I have to fight to stay alive, to battle the often overwhelming despair at not knowing what my future holds. I have to fight when I’m at my most vulnerable and weak.

As a community we are stronger than even we realise. In the midst of despair we do not give up. We may be shut away in darkened rooms but, thanks to the internet, we keep fighting from our beds. We write blogs, books and poetry. We create documentaries and videos. We create art, compile petitions and organise demos. We organise fundraisers and support each other at every opportunity. I am so proud to be part of this community.

Will you fight with us?

But sometimes we don’t have the strength to fight. Is there any wonder that the suicide rate is higher with ME/CFS sufferers than the general population? We spend so much of our life fighting, there comes a time when we don’t have the strength to fight anymore.

What I’m asking all of you, the non ME/CFS community, is; Will you fight with us? Help us raise awareness. Watch and share the film Unrest (it’s now available on Netflix). Talk about ME/CFS at every opportunity. Join the MEActionUK Network. Ask how you can help. Get involved with the Millions Missing UK events which are occurring around the globe on the 12th of May. Help us raise funds to enable research into this debilitating condition and possible treatments. But most importantly, believe us and don’t give up on us. Thank you for taking the time to read this post. Take care.

Please share and help me raise awareness.

#ajourneythroughthefog #chronicillness #MECFS #mentalhealthawareness#fibromyalgia #blog #anxiety #depression #selfcare #love #meaction#missingmillions #unrest

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My CBD Journey

I can’t tell my story without discussing CBD (Cannabidiol). It’s made a big positive impact in my life and I would like to share my experiences with you.

I’ve been virtually bedbound with severe ME/CFS and Fibromyalgia for about 5 years now. I also suffer from anxiety and panic attacks, depression, osteoporosis, migraines and insomnia. Desperate to find anything to help I searched the internet for possible treatments and came across CBD.

Being diagnosed with an incurable and largely untreatable condition is devastating. You will go to any lengths and try almost anything to relieve your systems, and believe me, the internet is full of crazy ideas and promises of cures. While searching through the myriad of possible ‘cures’ I came across CBD. I did a lot of research and it seemed to be a promising treatment. So, about 2 years ago I started taking CBD oil.

If I’m honest I didn’t expect much but I was willing to try anything at this stage. I was pleasantly surprised. I noticed an almost instant improvement in my anxiety levels and my general well-being. It took quite a lot of trial and error to find the right oil to tackle my pain but for the first time in years I could see a future for myself.

My pain is now a lot more manageable and I can finally sleep. It’s very effective for my everyday pain and my flares are less frequent. When I do have a flare it helps me stay calm which I find is half the battle. Unfortunately it doesn’t take away the ‘flare’ pain but it does ‘numb’ it. I’ve managed to wean myself off Tramadol, Propranolol and sleeping tablets and Omeprazole (gradually) and I feel so much better for it. If you choose to reduce your medication please do so under the supervision of your GP

To begin with I only noticed a slight improvement in my fatigue but I have severe ME and it’s taken years for my body to get this weak and exhausted. After a few months of sleeping better and with reduced pain and anxiety levels my body has started to respond. I have less fatigue and flu-like symptoms. I don’t crash as much and they are not as severe even though my activity levels have actually increased. With every day that goes by I feel physically and mentally stronger. Considering I’ve spent the last 20+ years with my health deteriorating this is a huge step for me.

I don’t want to give people false hope. CBD is not a miracle cure or a quick fix. It hasn’t taken away my symptoms but it has allowed me to manage them far more effectively than any prescription medication ever has and without all the nasty side effects. But you still need to listen to your body, pace yourself and rest when you feel a flare coming on.

The reality is, I am still very poorly, but compared to 5 years ago, and before I started taking CBD oil, I have made a lot of progress. Back then I couldn’t even hold a conversation or read one sentence on my mobile due to exhaustion and cognitive problems. I was having multiple panic attacks a day because my body and mind were so broken. I wasn’t sleeping – at all. My pain levels were uncontrollable and I was completely isolated and suicidal. It’s taken time but I now write a blog and have a very active presence on social media. My anxiety and pain levels are much more manageable. I’m sleeping for the first time in years without the aid of sleeping tablets. My body and mind are stronger and I haven’t had any suicidal thoughts for over 3 years. I believe a lot of this is down to CBD, it has given me the breathing space I need to rest and repair.

I believe it’s important to take an holistic approach when dealing with your health and well being. I have developed a number of coping mechanisms over the years and have found a combination of things that have helped to improve my overall health. CBD is just one part of this but it has made a big impact in my life.

Please note I am not a medical professional and I can only comment on my own experiences. Please speak to your GP before taking CBD as it can interact with some medication. Please include your GP in any treatment changes.

Have you tried CBD? What improvements have you noticed?

if you would like to learn more about CBD please read my ‘Comprehensive beginners guide to buying CBD products’

A Comprehensive Beginners Guide to Buying CBD Products.

What is CBD? FAQs

#ajourneythroughthefog
#CBD
#CBDusersuk

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