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?

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A Girl Behind Dark Glasses (Book) – A Review From a Fellow ME Sufferer.

Images courtesy of Jessica Taylor-Bearman

“I was an inventor, a researcher, a model, and I travelled the world through my imagination. At that time, it was my only saving grace. I existed in a place I called Limbo Land, hovering between the conscious and the unconscious. I could hear my family talking to me, see images of them, yet I couldn’t reply or make sense of what they talked about.” – Jessica Taylor-Bearman 

I have just finished reading ‘A Girl Behind Dark Glasses’ and I was so impressed I decided to write a review. A Girl Behind Dark Glasses is written by Jessica Taylor-Bearman and it’s an account of her life and struggles with a severe form of Myalgic Encephalomyelitis (ME).

For those of you that haven’t heard of Jessica; she is a courageous young woman who featured in Jennifer Brea’s powerful film Unrest. Jessica became acutely ill with ME at 15 years old, prior to this she had been a normal, active, energetic teenager. She spent many years in and out of hospital and spent a long time paralysed in a locked-in syndrome state, bedridden, unable to move, speak or eat.

She began to write in her mind, and when finally able to speak again, she began to write through her audio diary ‘Bug’.

“I loved the concept of creating lives and being able to tell precious stories, allowing others into my imagination so that my stories could become special to them too, simply by the words that I used. It is somewhat magical, don’t you think?” – Jessica Taylor-Bearman 

My thoughts about the book:

It’s very hard not to get angry as Jessica retells how she was treated by so-called ME specialists and by medical professionals in general. I know from personal experience how painful light and noise are, I know the agony caused by the simplest physical activity, I know the exhaustion caused by mental exertion and the frustration of not being believed. I can only imagine the damage caused by the inadequate and harmful treatments she was forced to endure, and how scary it must have been to lose her voice and her ability to defend herself.

But Jessica was failed on so many levels, not just in the treatment she received. The people trusted with her care failed to protect her and keep her safe from harm. There are some heartbreaking moments that had me in floods of tears; tears of sadness and tears of anger. She was mistreated, neglected and abused when she was at her most vulnerable – how could this be allowed to happen?

Vulnerable I may be but I was born a fighter, and this will only temporarily break me , I told myself firmly.” – Jessica Taylor-Bearman 

 

A Girl Behind Dark Glasses is NOT a sterile account of one person’s struggles living with ME – it’s far more than that. Jessica is an extremely talented storyteller and her style of writing was a pleasure to read. But don’t get me wrong, the ordeals she has suffered and documented don’t make for an easy read, and her words often brought me to tears because I could feel her pain like it was my own. Like any great writer Jessica draws you in with her imaginative narrative and keeps you engaged with every page – I found myself lost in her world. I am amazed by her strength; Jessica never gave up fighting, she never gave up hope and she never lost herself or her sense of humour.

I have followed Jessica’s story for quite some time now and her unwavering positivity, her sheer passion for life and utter fearlessness no matter what life throws at her, are infectious. Her personality jumps out from every page.

I would love to say Jessica’s story is unique but unfortunately it’s far more common than people realise. Medical professionals don’t understand this debilitating illness and many still refuse to believe it exits. We are frequently told it’s ‘all in our heads’ or given so-called therapies like graded exercise therapy (GET) and cognitive behavioural therapy (CBT) which are not just ineffective; they can be extremely dangerous and damaging. For this reason, A Girl Behind Dark Glasses is a vital narrative in raising awareness of ME. Please don’t underestimate the importance of this book: It is crucial that the neglect and the damage caused by outdated and harmful treatments, like GET are documented. One of the main symptom of ME is post-exertional malaise (PEM) which is characterised by a worsening of symptoms following activity. Exercise harms us!, it causes us pain and a severe deterioration in our health. You wouldn’t prescribe sugar for a patient with diabetes so why is exercise prescribed for ME patients? These kinds of treatment still go on today and many people with ME continue to suffer under the care of incompetent, uneducated and unsympathetic medical professionals.

I urge everyone to read “A Girl Behind Dark Glasses”, it’s not just a story about one person’s struggle with the ‘ME monster’ – it’s far more than that. It’s a story of love, family, friends; of hope, strength and courage.

I am in awe of Jessica’s determination and her enthusiasm for life. Although she has battled through unimaginable traumas, her story still remains a positive one, and her compassion towards others is remarkable. I am humbled by her courage and I look forward to following her story as she continues to progress in her journey through life. Jessica Taylor-Bearman is a name to watch in the literary world – I wait with excited anticipation for her next book.

Jessica’s aim has always been to raise awareness of this debilitating condition. Please help her achieve this by buying her book and spreading the word. Thanks for reading. Take care x

How to buy the book.

A Girl Behind Dark Glasses is available direct from Jessica’s website. There are a few options: Limited edition (signed) hardback, paperback and eBook (currently half price). Please click here for more information. 

You can also purchase the book from Amazon or from Book Depository where they are offering free worldwide delivery, please click here for more information.

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You can’t help everyone and not everyone wants to be ‘saved’

Foreword: I wrote this piece a few months ago and I have been waiting for the ‘right time’ to post it. But I’m not sure there will ever be a ‘right time’; so I’m going to be brave and post it now. I’m the sort of person who sees the good in everyone. My empathy dial is always set to max, so I feel everyone’s pain like it’s my own, and I feel compelled to ‘help’ everyone I meet. But the truth is I can’t help everyone and not everyone wants to be saved. There have been times in my life where, unknowingly, I have sacrificed my mental health in my attempt to help others. This post describes one of these times.

In my mid twenties I met someone and fell in love – sounds idyllic, right? But this someone turned out to be anything but my knight in shining armour. He was abusive, controlling, vicious and full of jealousy.

I was going through a transition period in my life. I was losing a lot of weight – 5 stone up until I met M, and I was trying to rediscover myself after depression had dominated my teenage years. I had returned to college and my life seemed full of potential and possibilities.

M was everything I thought I wanted in a partner; he was a rebel, he had long hair, he was good looking and a heavy metal fan like me. He was kind and vulnerable at first, and I instantly warmed to him. He doted on me and confessed his undying love almost immediately. I should have seen the signs but I was distracted by all his attention, I had never been adored this way before.

Quite early on in our relationship he started showing signs of jealousy and wanting to control my actions, what I wore and who I spoke to. At first I wasn’t alarmed by this, in fact I saw it as a sign that he loved me so much he couldn’t bear me being around other men – I admit, I was naive. M was my first serious boyfriend, I was flattered by his attention and adoration.

His controlling behaviour soon escalated. I continued to lose weight and this attracted attention from other men. If I even smiled at another man he would call me a whore and accuse me of having an affair. He would put me down saying; “You have the figure of a boy!” or “You don’t even look like a woman anymore”

M was a ex-heroin addict and an alcoholic. He was abused as a child and spent time in care. I know he suffered with depression and had attempted suicide on a few occasions, and I wanted to help him. I wanted to find a way to comfort him, to make it all better. I wanted to protect him from his demons. I thought my love and kindness would be enough, but by staying with him I only caused myself pain.

He would come home drunk and start shouting obscenities at me. Some of the vile things he used to come out with scared me so much. The venom in his voice, the hatred in his eyes and the threat of violence were, in a way, more painful than the physical violence that followed. The saying goes; “Sticks and stones may break my bones, but words will never hurt me” but that’s not true. For me, the words were just as damaging, and the effects lasted much longer.

He experienced blackouts when he was drunk, so he would wake up in the morning like nothing had happened. I would beg for an apology or some kind of explanation for his behaviour but, because he couldn’t remember any of it, he just shrugged and walked away.

If I ever talked about leaving, M would say “Who would want you? Skinny, full of scars and excess skin, you are not even a woman anymore. I’m the only person who would put up with you” and I believed him. I had no self confidence – I believed I was ugly and worthless, and I was actually more scared of being alone, than being with him.

Why did I stay? It’s a question I’ve asked myself thousands of times. I have always been a strong and independent woman; how could I let myself be controlled and abused by a man? I felt pathetic, weak and a failure. Why didn’t I stand up for myself and say; “NO! this is not acceptable”. Why did I make excuses for him? Why did I continue to forgive him when he caused me so much pain? I don’t have an answer to these questions and I beat myself up about it for a long time – I blamed myself for being weak. I believe a big part of me staying was my need to ‘heal’ him – I could see he was hurting and I wanted to help. I actually saw my inability to ‘make everything better’ as a personal failing, but the truth is; you can’t help someone who doesn’t want to be helped.

Please don’t ever judge anyone for staying in an abusive relationship, you have no idea what it’s like until it’s your life. You don’t know the reasons why they stay or why they do not feel strong enough to leave. It wasn’t all bad, if it had been I would have left sooner. I loved him and when he wasn’t drunk he could be charming, kind and loving – we did have happy times together.

After 2 years of emotional and physical abuse, I finally found the courage to leave him. The truth is, he admitted to cheating on me and that flipped a switch inside me. Somehow I could justify the abuse but I couldn’t tolerate infidelity. He didn’t take it well: He barricaded us into my flat and refused to let me leave. He threw me around the flat like a rag doll, but I managed to escape. It was the most traumatic night of my life and it was the first time I had truly feared for my life, but I never looked back.

It took me years to recover. The physical bruises and scars soon healed but the psychological damage lasted much longer. Two years of abuse had a huge impact on my mental health; I was depressed, full of anxiety and negative thoughts, and my self esteem was at the lowest it had been at any point in my life. I still believed all the vile things he said to me. I still believed I was ugly, unlovable and worthless. Depression hit, I was an emotional wreck, but thanks to amazing friends and family I slowly began to find myself again.

With the help of antidepressants and counselling, I managed to learn to forgive myself for not being strong enough to leave him sooner, but my anger towards M has never gone away. The anger that someone could destroy my life, could make it a living hell – I cannot forgive him for that.

What started out as small signs of controlling behaviour and jealousy, soon escalated. At the time I didn’t realise it was abuse. I didn’t feel like it was severe enough to warrant me asking for help. He made me think I was overreacting, that a shove here and a grab there wasn’t abuse. Or that a harsh word here or criticism there was typical behaviour, that a bit of aggression was normal in a relationship. But the truth is; If someone loves you they will do anything to make you feel secure and happy, they would be mortified if they caused you the slightest pain.

A few months after I left M, I started a relationship with my now husband. He helped me heal and showed me what true love means. With his support I began the long journey of recovery.

Any form of abuse is wrong! Don’t ever let anyone convince you otherwise. If you are not comfortable with it, if it makes you feel scared, distressed or vulnerable, then it’s wrong. Please know there is help out there if you need it. The damage caused to my mental health lasted many years. I wrongly thought I could change him, that my kindness could heal him if I just stayed long enough, but the longer I stayed the more ‘broken’ I became. Please don’t sacrifice your mental health for the sake of someone else’s, like I did. Take care.

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Product Review – Molytor Hemp Protein Powder

I have been taking CBD oil for nearly 2 years now and I find it very beneficial for my health. Recently I also added a new product to my daily routine – Full Spectrum Hemp protein powder with CBD and CBDa from #Molytor. I was drawn to the protein powder because it combines the therapeutic benefits of cannabinoids like CBD and CBDa, and the restoring properties of protein and essential nutrients found in hemp seeds.

When I crash (I have ME/CFS) I struggle to digest solid foods, even the act of chewing is exhausting. I also have a very restricted diet due to many food intolerances. My GP prescribed energy drinks (Ensure) but these are packed full of sugar which, apart from being very unhealthy, are also a trigger for my fibromyalgia pain and IBS. In the past I have struggled to find a healthy drink so I’m really pleased to have this hemp protein powder as an option.

I’m really impressed with this new product from Molytor. It’s easy to incorporate into my diet and I know I am getting a multitude of nutrients along with protein and the benefits of CBD and CBDa. It’s gluten free and contains no added sugar so it doesn’t upset my IBS or trigger my pain.

To get the extra calories I need for my daily intake I just add the hemp protein to smoothies or sprinkle it over food. I also add it to my porridge in the morning – one of the only foods I can digest when I crash. But the powder is so fine it can be added to any food or drink.

Those of you that struggle with the taste of CBD oils may find this product a good option. It has a pleasant nutty taste (slightly grassy) It’s perfect for those who don’t like CBD drops or vapes and it’s much healthier than other CBD edibles like gummies. It contains 3.3mg CBD and 1.3mg CBDA in each teaspoon.

I have already noticed I’m not so ‘stiff’ and my joints are less painful – I think that’s the Omega 3 & 6 working. Another bonus is my skin is less dry and irritated (I have eczema and very sensitive skin) It’s still early days but I’m already impressed with the results so far. It also means I need less CBD oil each day as I’m getting a good chunk of my daily CBD dose through this hemp protein powder.

If you want to find out more about this product please click here: http://www.molytor.co.uk/product-category/hemp-protein-powder/

Why choose hemp protein powder?

Hemp protein powder is made from hemp seeds. Hemp seed is considered by many to be the safest, most digestible, balanced, natural and complete source of protein, amino acids, and essential fats found anywhere in nature, containing all of the 20 amino acids, but also each of the nine essential amino acids that our bodies cannot produce.


Hemp seeds also have anti-inflammatory properties  – Hemp seed contains chlorophyll which gives protein powder its green colour.  Chlorophyll is the green pigment found in plants that provides your body with alkaline protection against inflammation. Hemp protein is also rich in potassium, which can help balance your electrolytes and aid in water balance. CBD and CBDA also has anti-inflammatory properties.

Further reading: https://draxe.com/7-hemp-seed-benefits-nutrition-profile/

Why take CBD and CBDa?

Cannabinoids like CBD and CBDa have many potential therapeutic properties. They work with the body’s native endocannabinoid system which regulates 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, Cannabinoids like CBD help to maintain this balance – homeostasis.

I have discussed CBD and CBDa many times on my blog so I won’t repeat myself by going into a lot of detail. If you want to find out more please head over to the CBD section on my website, there are lots of interesting articles. https://www.ajourneythroughthefog.co.uk/category/cbd/

Please note: I am not affiliated with this company, I just really like the product and I wanted to share it with you.

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8 Spoonie tips for getting the calories and nutrients we need on our ‘bad’ days.

Food and Nutrition Series – Part 1

I was asked by one of my followers to write a post about food and nutrition. As it’s a very broad subject I have broken it down into a few articles which I will post over the next few weeks. I wanted to start with a problem I know many people with chronic illnesses face – and that is getting enough calories and nutrients when we are too weak to cook or, some days, too weak to even eat solid foods.

8 Spoonie tips for getting the calories and nutrients we need on our ‘bad’ days.

When our energy levels are low we can find it hard, or sometimes impossible, to prepare or cook food. But it is at these times that we need nutritious, healthy, high calorie foods to help our bodies repair and to give us the energy to get through the day. I personally cannot stand long enough to cook, even on good days, but when I crash I struggle even to digest solid foods – the act of chewing is exhausting. My GP prescribed me ‘Ensure’ drinks but these are packed full of sugar which is a major trigger for my fibromyalgia pain and IBS.

There are steps we can take to prepare for these bad days so we can conserve our limited energy for other tasks.

1. Snacks

Firstly, make sure you have a good selection of snacks handy which you can grab on the days you are not well enough to prepare or cook food. I always have snacks by my bed for those really challenging days. Bananas are a great option – they are an excellent source of potassium and vitamin B6, fibre and carbohydrate, and supply some vitamin C. I eat rice cakes a lot, just add a topping of your choice. Cereal/protein bars are another easy way to consume calories but I haven’t yet found one that isn’t packed full of sugar. If you feel well enough on your good days you could make your own – they are simple to make and freeze well.

Simple granola bar recipe:

https://minimalistbaker.com/healthy-5-ingredient-granola-bars/

2. Healthy Protein Powder.

My next tip is to find a healthy protein powder. I need a gluten, dairy and sugar free option, and up until now I have struggled to find anything that meets my needs. Molytor (the company I buy my CBD oils from) have recently launched a hemp based protein powder that is not only packed full of nutrients but it also contains CBD and CBDa, I love this product. I have written about it in a separate post please click here to read it:

https://www.ajourneythroughthefog.co.uk/2018/06/764/

Protein powders can be added to smoothies, soups, sprinkled on any food and even added to drinks like hot chocolate. It’s an easy way to add extra ‘healthy’ calories, protein and nutrients. I add it to my porridge – one of the only foods I can digest when I crash.

3. Smoothies

Smoothies are a great option. They are easy to make and easy to digest. This is my favourite smoothie recipe:

https://www.onsuttonplace.com/banana-oatmeal-smoothie-recipe/

You can substitute the almond milk for hemp, coconut or rice milk and you don’t have to freeze the banana if you don’t want to.

Bananas and oats are very soothing on the body – they are gentle on my belly (my IBS always flares when I crash) and they help me relax. You can get someone else to prepare this in advance, it stores well in the fridge. I personally soak the oats in the milk for a couple of hours to soften them.

You could try adding energy boosting foods like chia seeds, bananas, quinoa, oats and almonds but avoid sugar if possible. Or try adding vitamin C rich fruits to boost your immune system.

Here is a link to more smoothie ideas.

https://www.prevention.com/food/20-super-healthy-smoothie-recipes

4. Batch cook food in advance and store in the freezer for emergencies.

On the days when you feel able, try batch cooking food for the week. Don’t be afraid to buy prepared vegetables and packet mixes – they save a lot of time and energy. Slow cookers are a great option for this – just throw everything in and turn it on. Ask your partner, friend or family member to help you prepare food for the week.

I eat pureed cooked chicken and carrots (we call it chickot) This is easy to digest and soothing, so unlikely to trigger my IBS symptoms. I have a few pots in the freezer at all times. It can be eaten as it is or added to rice, pasta, potatoes etc.

5. Soak food in water to soften.

Chewing can be exhausting when you have a chronic illness like ME/CFS. If you don’t have any pureed or soft foods to hand, why not try soaking the foods you have in water first – I do this with rice cakes. It might sound odd but it works – it softens the rice cakes and makes them easy to digest. I add my chickot (chicken and carrot paste) to the soaked rice cakes.

6. Porridge.

Porridge is my ‘go to’ food when I’m exhausted – it’s soothing, easy to digest and gives me a long lasting energy boost. I add sliced bananas and hemp protein or ground linseed to add protein, fats and other nutrients. You can buy instant porridge that’s quick and easy to make. If you are sensitive to gluten, you can buy gluten free versions.

7. Hydration

When I crash I often struggle to stay hydrated. I’m comatosed for long periods of time, too weak to move. But it’s vital we stay hydrated. I have a glass of water beside my bed at all times. If you struggle to sit up, a plastic bottle with a straw is a good option. Even on good days, I struggle to turn on our taps, so carers fill plastic cups with fresh cold water and place them on a table near my bed, at easy reach.

8. Supplements

You may want to consider taking vitamin and mineral supplements on your bad days. I take an iron rich supplement drink called Floradix, it also contains a selection of vitamins and other minerals. It is worth noting that with the aid of a balanced diet and if you have good health, then there should be no need to take supplements, but sometimes we need the extra boost.

Do you struggle preparing and eating food on your ‘bad days’? Do you have any tips you would like to add?

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When the isolation of illness causes the outside world to feel ‘alien’

When you have severe ME/CFS, or any illness that causes you to become housebound, you feel isolated. It’s very easy to feel forgotten. Your life is put on hold but the world goes on outside without you. How can an event that is so catastrophic for you not impact on world around you? How can life for others go on as normal? You are surrounded by a cocoon that protects you from harm but it also excludes you from life.

I have spent the majority of the last 5 years confined to one, darkened room. I also don’t watch TV because it’s so exhausting, so I miss out on a lot of developments in the world. Fashions change; When did Men’s clothing become so tight? The music scene changes; I haven’t got a clue about any current artists. Language adapts; slang words that I haven’t the foggiest what they mean. And what’s with this Monopoly money everyone is using? Trends, fads, media, films, TV programmes, politics, they all evolve.

This alienation also extends to friends and the social life you have relinquished. Your only social interaction is online but social media only shows us the edited highlights of someone’s life. Many friends who were once frequent visitors become like passing acquaintances or at worst, strangers. They continue to have fun and to experience adventures without you, their life continues as normal.

But this cocoon means so much more than isolation from developments in the outside world. The cocoon is also there to protect us from viruses, noise, stress, light, anything that could exhaust us, cause us pain or cause a deterioration in our health. For the sake of our health, we are shut off from the outside world, with only a vague understanding of what’s going on around us. We hear hushed conversations, doctors visit, family and friends make brief appearances, care workers come and go, but you feel detached, like you are observing someone else’s life. Loved ones try their best to help, but the cocoon creates a barrier. We are often too scared to break down the barrier for fear of getting hurt.

And anytime I have to leave my protective cocoon (for hospital appointments) I’m bombarded by a sensory overload. Everything is so loud and colours are so bright. I’m bewildered by how unfamiliar my once familiar neighbourhood is, and it’s actually quite scary.

My biggest fear is that I will never recover enough to leave my protective cocoon and rejoin the real world, but I also now fear that outside world, it’s a scary and unfamiliar place. The longer I spend in isolation, the more alien the outside world seems. How long will my isolation last? Will I ever get the chance to emerge from my cocoon, or will I forever be one of the forgotten ones, hidden away from the world? If I am ever well enough to leave the safety of my cocoon, will I even recognise the world that greets me? How will I adapt?

Does anyone else experience these fears?

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:  https://www.ajourneythroughthefog.co.uk/category/cbd/

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

https://www.facebook.com/ajourneythroughthefog/

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.

https://www.facebook.com/ajourneythroughthefog/

MEpedia – Our Future.

What is MEpedia?

MEpedia is a project founded by MEAction, powered by the patient community, and built by volunteers including patients, students, and researchers. The team at MEpedia are crowd-sourcing a knowledge base on the history, science and medicine of ME, CFS, and related diseases. But they need your help. http://me-pedia.org/

Imagine a website where all the information currently available about ME (and related diseases), from all over the world, was in one place. Imagine the possibilities. The newly diagnosed, who are confused and scared, unsure where to turn, can log on and access up-to-date information. If you are having problems finding a sympathetic doctor, you can log on and search for one. The media can use the site to research ME (and related diseases) and access correct information, rather than the bogus quotes often supplied by so called experts.

MEpedia can be used as a platform to educate medical professionals, whether currently training, newly qualified or experienced. It will serve as an invaluable research tool for all everyone. We spend so much of our energy fighting doctors against the tide of misinformation and disbelief, MEpedia would give us a database of knowledge to arm ourselves with. And the more information we can collate on one site, the more likely we are to find common cause or common treatment.

From the success of Millions Missing we already know how strong our voice is when we unite. MEpedia has already gotten over 4 million page views, 90% of it was written by three or four people. Imagine what could be achieved with more help.

Contribute to MEpedia today.
You are probably telling yourself (like I did): “I’m not medically trained or qualified to contribute”, but there are many ways you can help. Anyone can create pages, write content, add links/citations, fact-check, or even just fix typos. Everyone has something to offer, whatever your skills & experience, even if you have never edited a wiki (like Wikipedia) before. Get involved and help the patient community identify all of the best and most important resources for our disease and its research, treatment and history.

There are so many different roles contributors can play, at every level of cognitive ability or technical expertise. Every contributor can play one or more roles. All are important and help MEpedia grow and improve the project. We all have limited energy but even small acts accumulate to create big changes.

For more information about contributor roles please click here: http://me-pedia.org/wiki/How_to_contribute#Roles

So, how do you get involved?

If you are on Facebook please join this group. https://www.facebook.com/groups/218347055598647/

If not, click here to get started: http://me-pedia.org/wiki/How_to_contribute

Familiarise yourself with MEpedia and jump in. If you are unsure where to start, try adding some terms to the Glossary section http://me-pedia.org/wiki/Glossary

Together we can change our future.

 

Useful links:

http://me-pedia.org/wiki/Editorial_Guidelines

http://me-pedia.org/wiki/MEpedia_article_outlines

http://me-pedia.org/wiki/Science_Guidelines#How_to_cite

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

Missing Millions – London 2018

Every year an event called Millions Missing takes place in Countries across the world to raise awareness of ME and to help make it visible. People with severe ME are often forgotten because we are hidden away in darkened rooms, too sick to leave the house. At the core of the demonstration is a collection of shoes. Each pair of shoes displayed represents one person who is ‘Missing’ from the world due to this debilitating illness.

I wasn’t well enough to attend an event myself but my sister and her husband went to the London Millions Missing event to represent me, and I am so thankful for this. My sister collected photos and stories from ME sufferers at the event. With their permission I am going to introduce a few of them to you.

Firstly, in the main photo, is my wonderful sister Rozy.


This is Lucy Grimwade. She wants proper research into ME. She has had ME since she was 12 years old. She misses school, friends, dancing with her sister and being normal.

Lucy wants more recognition from government and healthcare. #MillionsMissing London.


Jess wants to be believed.

This is Jenny.

Jessica wants more funding for research. I’m sure you all know the courageous Jessica who featured in the Jennifer Brea film Unrest Thank you for giving us a voice.


Grace wants to go to school and for people to not stare at her. Luke and Sarah want their daughter to be able to have friends over and have social interactions.

From the left Toby, Jacky, Emma, Lynn. Are supporters of people who live with ME. Lynn wants more government funding for research.

Vanessa and her mum Geraldine. Vanessa wants to be believed. Geraldine wants more funding and research so people can get better.

Jane and her husband Lawrence. Jane wants an end to GET and CBT. Lawrence wants to be able to do things together with his wife.


Carolyn wants to let people know about network M.E. self help (network MESH West London) to get support from like minded people and a newsletter.

Amanda and her partner Talay want more funding for medical research and practical support and improved disability benefits and a cultural change so that disabled people are not viewed as an economic burden but as individuals who can make a valuable contribution to society. And better education for health practitioners.

Ruth and her husband Ian want Biomedical research and they want it now.


From the left Tom, Liz and Chris are family members of someone who lives with ME. Liz wants to be heard and believed by doctors and school. And understanding.

Lea wants the medical profession to take it seriously and recognition that people die from ME.


This is Apolonia.


Steph wants more funding for research.


James wants to be able to work. There needs to be more knowledge and flexibility in the workplace. And recognition from government that it is a real illness.

Cato wants for research and funding for research and access to the right treatment.


Ollie wants more funding for research.


Thom and Rebecca don’t want to be silenced anymore.


This is Karen. Ill nearly 28 years. “I want a life back and I don’t want see anymore suicides or early deaths”

And lastly, a short video from the event. A big thank you to my sister and everyone else who attended all the #MillionsMissing events around the globe.

#ajourneythroughthefog #chronicillness #MECFS #MEaction#spoonies #chronicpain #meawarenessmonth #myalgicE #PwME#meawarenessweek #meawarenessday

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

https://www.facebook.com/ajourneythroughthefog/