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 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.

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

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?

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

 

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?

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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

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Missing Millions – Global Virtual Meetup

For those of you, like myself, who are not well enough to attend one of the #millionsmissing events, there is a Global Virtual Meet up happening.

https://t.co/80uu2Nf9tf

#ajourneythroughthefog #chronicillness #mecfs #MEaction #spoonies#chronicpain #meawarenessmonth #myalgicE #pwme

https://my.meaction.net/events/millionsmissing-global-virtual-meetups-for-may-12

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Guest Post : ‎Sefik Villasante‎ – My Story


My Story of overcoming the dark and desperate times is one that I hope can show others that there is a way out to the other side ! It was Sept 2016 and after 12 years of striving and seriously hard work and sacrifice I achieved a promotion within a huge U.S Multinational Company . I was ecstatic nothing was going to stop me I had the position the pay the title and the plaudits that I had richly deserved . Along with my family wife and children we could all share in my success!

9 months later I was a wreck ! 9 months of 17 / 18 hr days 5 days a week a culture that was far from supportive , toxic in nature , a work force hell bent on undermining you and your position had left me broken .

One of my main strengths was my confidence my ability to present and interact with the workforce and my passion and belief in the company and what it could bring to further my carrier and growth of the business .

I was left hiding on the ware house, wanting to hide away , keep quiet not be noticed and physically unable to even open up and email or log into my p.c . Every moment of my working day was miserable it was consuming me the fear of work the heaviness of failing the 10 cups of coffee a day to try and pep me up , the utter hate of the alarm going off at 04.30am and that drive into London it was desperate time.

I had noticed a definite down shift in my mood 2 months before I went to the G.P explained my situation and yep 150mg of Sertraline were was the answer . No No No pill could get me through this the work , culture and 18 hour days were relentless !!!

So driving home 9.00pm at night on a Friday I said I cant do this anymore H.R don’t care , manager doesn’t care , the company doesn’t care well then I will show them !!! Maybe this will make you listen and take notice !!!

I attempted to drive my car into the central reservation of the A40 , it made perfect sense I was exhausted I would blame the company show the world how I had been broken I was crying out for someone to take this seriously !!!! Something made me pull away at the last second .Was it luck , an angel , and hunch , or the last bit of reasoning I had in me that said you don’t have to do this ?? I pulled into the hard shoulder and had a cry and a talk to myself .

How could I tell my wife , my kids , work , my friends , family that I had failed !! Yes I had failed , failed failed failed failed !!! Everyone else but me opinion mattered but my own !!

Fast forward and after I sent an Email to my Boss explaining I couldn’t do this anymore , I felt a weight had been lifted . I myself had acknowledged I was in a bad desperate place and needed help .Never has watching a U Tube clip resonated so much . “The Black Dog Syndrome” Perfect in every way .

18 months of counciling , Self Compassion Groups , Mindfullness , Self Confidence Groups , CBT , Richmond Fellowship service , and a 6 month spell with a Physchatrist and of course understanding that medication is not taboo its a requirement for some .

I was under the impression a month away from work was all that I needed and I will me back to normal . I dosent work like that it takes time a lot of time and work and changing your values and your old way of thinking .

What really is important to you , what do you value , is money the answer to everything . What I’ve understood and this is key is that Money dosent bring you happiness it brings you choices .Success dosent make you Happy , Happy makes you Success !

Yes its been tough very tough for 18months I didn’t tell anyone I hid away pretended I was working from home, working nights on the lap top I was living a secret life . But as soon as I let my story out and told the world the support I had was amazing. It was like I was given a 2nd chance and new direction and new me ! Ive changed direction , had the confidence to leave a carrier of 14years start all over again at the age of 42 see my first sports day , xmas play go to a parents evening do the school run , tuck my children into bed sit around the dinner t able the list goes on and on .

Never live your fears don’t say you cant go on there is a way out i’ve done it . Suffering from chronic depression and anxiety is not taboo its reality and its a sign you’ve tried so hard, so hard and taken you to the edge you havn’t been a grazer you’ve been a decent individual !!

Help is out there in may forms and through many amazing people and groups , reach out to those closest to you and never give in and go to that dark place that you would be better of not being hear ,

You are Amazing You are Beautiful You are a Parent Brother Sister Aunt Uncle Son Daughter , You can achieve all you want never loose sight of that !!

Sefik

XXX

Be proud of every step you take.

About 5 years ago I had a physical and mental breakdown. At the time I didn’t realise quite how ill I was, as I had a complete disconnect from reality. I was exhausted, my body was fighting back and I didn’t know how to cope with this mentally. My physical health (I have ME/CFS and Fibromyalgia) deteriorated to the point where even speaking caused palpitations and tremors.

The lead up to this breakdown was a particularly stressful time. I was battling anorexia, I was fighting an appeal after having my health benefits removed, my husband had just been made redundant and I was scared I was going to lose my home. I couldn’t understand why my body and mind were failing, I felt like they were betraying me and I didn’t know how to cope.

I was so exhausted that even when resting I had adrenaline coursing through my body, I was in constant fight or flight mode which caused even more exhaustion, made it impossible to rest and sleep, and also heightened my anxiety to a level I had never experienced in my life up until that point.

To try to understand what was happening to me, and in an attempt to ground myself in reality and save my sanity, I started writing a diary.

It’s been over 4 years since I wrote in my diary. I put it aside, too scared to reread what I had written, fearing my raw thoughts and feelings would trigger another breakdown. But I now feel strong enough to face these fears in an attempt to understand what caused such a catastrophic event in my life. What was my mindset? What were my fears? How did I rationalise it? How did I survive it? What will I unearth? What will I learn?

The following are some excerpts from my diary:

The last 6 months have been horrendous. I didn’t realise how mentally and physically ill I had become. My body and mind, after years of stress, anxiety and abuse have given up on me. I’m just surprised it didn’t happen sooner. I’m coming to realise ’the signs’ have been around for years. All problems are linked to anxiety and control, ‘FEARS’ I am fearful of everything.”

“I know I have come a long way but the journey is far from travelled. I should have seen the signs three years ago.”

“Well, I’m learning a lot of very hard lessons about myself. Time to accept I’m currently losing my lifelong battle with anxiety. I need a chill pill, I need to lighten up.”

“Haven’t slept in days. My ME/CFS Is horrendous. Not surprising when sleep and rest are the most important things for recovery. I keep forgetting and confusing words, it’s quite comical really.”

“You are safe, You are calm” [I used to repeat this to myself over and over again when I felt like I was going to die, it was my mantra and the only thing that kept me alive.]

“I’ve got to get over the notion my body is trying to poison me. I’m lucky it’s working at all after what I’ve put it through.” [I had forgotten about this, but I think it was linked to my anorexia. Anytime I ate it aggravated my IBS and caused so much pain, I felt like my body was attacking me.]

“Just when I think I’ve got the hang of something my neurotic mind starts questioning it, it’s my anxiety causing everything.”

“I need to sleep but every time I close my eyes I see the demons.”

“I’m going stir crazy in the house, I need to escape.”

“I stayed comatosed all day trying to avoid a panic attack. Even the slightest movement causes dizziness and palpitations.”

“I didn’t realise how detached I’d become from my own body.”

“I haven’t written in a few days because I’ve been so weak, exhausted and depressed. I truly hit rock bottom. Every little improvement I make only makes me realise how ill I was in the first place and how far I’ve got to go.”

“The last 6 weeks have been the longest of my life. I have been in a daze, out of touch with reality. Sleep deprivation along with anxiety, exhaustion and pain drove me to hit rock bottom. Suicidal thoughts are uncontrollable, I’m not sure I’m strong enough to survive this.”

“I put too much pressure on myself. In my attempt to do ‘anything’ to make myself better, I have pushed myself to break, physically and mentally.”

“My muscles are burning but I keep shivering. I’m so scared I’ve done irreparable damage and this is what my life is going to be like from now on. I cannot contemplate the rest of my life in this torture”

“You f*cked up again!”

“I’m not sure how much longer I can put up with this pain. I need it to stop, I need a break, I would try anything at this point. Please make it stop.”

“I managed to stay calm enough to sleep after taking sedatives, diazepam and sleeping tablets. I know, not good, but I was desperate for a few hours peace.”

“It’s now 6am. I’ve been keeping calm and trying to sleep for the last 8 hours. All I’m achieving is getting more tired, shivery, panicky and frustrated.”

“I’m gonna take today as it comes, no expectations. I’m shattered so hopefully I can just rest and keep my anxiety at a minimum. I’ve given up on thinking I can tackle my anxiety on my own, that will come with medical treatment – just keep it at a manageable level.”

“If I can just stay calm and get some sleep tomorrow will be a better day”

“You’ve come so far, don’t be so hard on yourself, you are doing the best you can.”

“You ARE strong enough to survive this”

What comes across from these words and my handwriting, is how desperate and manic I was. I wrote pages and pages of rambling text, desperate to expel the constant barrage of thoughts from my head, hoping that if I wrote them down, my mind would give me a break. But the more I wrote, the more active my brain became. I was riddled with guilt and convinced it was my fault I had become so ill. I wish I could go back in time and give myself a big hug and say “You have done nothing wrong, it’s going to be ok”.

Even with the trauma I was going through, I am amazed at how positive I was still trying to be. I have always been an optimist but I don’t know how I found the strength to continue to fight through the pain, fatigue, insomnia, confusion and all the scary symptoms that came along with the breakdown.

I ultimately realised, that to get better I had to stop fighting. It was the accumulation of years of fighting my own body and mind that had lead to my breakdown. I now know the importance of rest, self care and reflection, but at the time resting seemed like giving up. Once I stopped fighting, the depression set in, but I will save that discussion for another day. I have come such a long way since those dark days and I often underestimate the achievements and positive steps I’ve made. I don’t give myself time to pause and reflect on the strength it took just to survive. I don’t give myself credit for the life challenges I have survived and continue to battle. I’m still very ill but I’ve come so far and I’m proud of myself for that.

So, from now on, I will take time out from each day to reflect on how bad my health was and how far I have come. It’s an important part of my recovery, which up until now I have neglected. I urge you to do the same. You may not be as far along on your journey as you want to be and there may be times when you take a few steps back, but please celebrate all your achievements, however small. You are doing the best you can. Take care x

“Don’t wait until you reach your goals to be proud of yourself, be proud of every step you take.”

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