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

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

How do you cope with chronic pain?

I’m also a contributor for The Mighty. The Mighty is a digital health community created to empower and connect people facing health challenges and disabilities. It’s a great website (they’re on Facebook too) with over 1 million registered users. All the articles are written by people, like myself, who have firsthand experience of the topics they are discussing.

I wrote the following piece in reply to a member who asked: ‘How do you cope with chronic pain?’

#ajourneythroughthefog #chronicillness #MECFS #mentalhealthawareness#fibromyalgia #blog #anxiety #depression #chronicpain #selfcare #love#fibromyalgiaawareness #meawarenessmonth #millionsmissing #meaction#spoonies

https://themighty.com/2018/05/how-to-cope-with-manage-chronic-pain/

Why do so many people still refuse to believe Myalgic Encephalomyelitis (ME) exists?

I would like to start by saying a big thank you to everyone who has left kind and encouraging comments, your support means so much to me. The last 48 hours have been exhausting and a real eye opener. I didn’t realise sharing my story about the realities of living with severe ME would stir up such a mix of emotions and reactions from everyone. The purpose of my post was to raise awareness and start a discussion about ME, so in that respect it was successful.

My local Newspaper (The Eastern Daily Press) published my story on website and Facebook yesterday and it caused an argument on their page. Comments saying ‘ME doesn’t exist’ and ‘we are all just lazy’ have been removed from the post. It’s upsetting in this day and age that people still deny ME exists, and just think we are lazy. I have all the motivation in the world but my body isn’t able. Myalgic Encephalomyelitis (ME) has been recognised as a neurological disease by the World Health Organisation (WHO) since 1969, so why do so many people, including medical professionals, refused to believe it exists? Are 17 million people just lazy?

It’s a stigma we, The ME community, face on a daily basis. Why do people have such strong views about an illness they haven’t experienced and have no knowledge of? Why do strangers feel they can judge me when they haven’t lived my life? Do you really think I would choose to live my life from my bed, to be excluded from everything I love?

Apart from the non believers I have been inundated by messages offering ‘miracle cures’ for my illness. It’s so upsetting to know there are people out there preying on the desperate and vulnerable. There is no cure for ME (yet). If what they are selling was a cure, everyone would be using it – it would be all over the news and no one would be sick anymore. Not only are they ripping people off, they are also giving them false hope.

I have also received many comments from well meaning individuals asking ‘have you tried this?’ or ‘My friend had ME and this cured her’ I know these comments come from people who want to help me and I’m thankful for your concern. When you live with an incurable and largely untreatable illness, you are desperate and will try most things. I will absorb your suggestions but please don’t force your views and opinions on others. Please don’t judge me if I choose not to take your path or try your suggestions. It’s exhausting, and if I tried everything suggested to me I would be broke and, probably, no better off health wise. Yes, I have tried many remedies, some have improved my health, like CBD oil, but most have made no impact. Sometimes acceptance (and no, that doesn’t mean I’m giving up) and rest are the best options, for now.

Lastly, to the people who have judged me based on one post – I hope you never have to experience life living with severe ME. I hope no one close to you is affected by this devastating illness, and I hope someday you choose to leave your prejudices aside and spend some time educating yourself about ME. My hope is that through education you will learn compassion and understanding. We, the ME community, don’t want you sympathy, we just want to be heard and believed. We have spent so many years ‘missing’, forgotten and dismissed, ridiculed and judged – It’s now our time in the spotlight, our time to be believed, our time to be heard, our time for fair treatment and our time for action. Thanks for reading. Take care x

If you would like to read the post that sparked all this interest, here is: My Story- the realities of living with severe ME.

https://www.ajourneythroughthefog.co.uk/2018/05/my-story-living-with-severe-m-e/

#ajourneythroughthefog #chronicillness #MECFS #mentalhealthawareness#fibromyalgia #blog #MyalgicE #Chronicpain #spoonies #missingmillions#MEAction #meawareness

My Story – Living with Severe M.E.


Foreword:
Myalgic Encephalomyelitis (M.E.) is an incredibly isolating and debilitating condition but I don’t want your sympathy, that’s not why I’m writing this piece. All we (the M.E. community) ask is for understanding and education. We want to be taken seriously by medical professionals and for funding to be made available to research this devastating condition. M.E. has been recognised as a neurological disease by the World Health Organisation (WHO) since 1969, so why do so many medical professionals still deny it exists? It’s estimated that 17 million people worldwide suffer from M.E. How many more have to suffer before action is taken?

If you want to learn more about Myalgic Encephalomyelitis (M.E.) please click here: https://www.actionforme.org.uk/what-is-me/introduction/

My Story – Living with Severe M.E.

My name is Jo Moss, I’m 43 years old, I live in Norwich (UK) and I have been missing for 12+ years.

Like millions of others – I live my life from one darkened room, I rely on carers for even my basic needs and I feel isolated from the outside world.

My M.E. Story starts in my teenage years. I didn’t get a sudden onset of symptoms like many sufferers, instead mine was gradual. I had always been a sickly child but in my teenage years my health deteriorated. I had a succession of infections including throat, ear and chest infections along with numerous bouts of tonsillitis. Hormones also triggered debilitating migraines which completely incapacitated me for days at a time. I had numerous operations for a number of health conditions which I believe weakened me. Shortly after this I had a particularly bad case of the flu and I never really recovered.

I struggled with overwhelming fatigue and flu like symptoms for years before I was finally diagnosed with M.E. Every GP I visited, begging for help, blamed my poor physical health on depression and anxiety, and just prescribed antidepressants or anti anxiety meds – I was even diagnosed with PTSD by one doctor. I was finally diagnosed in 2006 by a new GP who had just transferred from the local M.E. clinic to my doctors surgery. She was great and referred me to the clinic. She was very supportive but sadly, she left soon after.

At the clinic I was taught pacing and went through a course of CBT but that was about it, they did however write to my employer explaining what M.E. was and how best they could support me, which was great. I worked in the finance industry before I became ill. I loved my job, I loved having a purpose and being busy.

I was still mobile at the beginning but my health continued to deteriorate due to a lack of treatment and support, and stress brought on by having my health benefits removed. I was assessed as 100% fit to work at a time when I could barely function or care for myself. I had to appeal, which took 18 months, it was so stressful and exhausting – it broke me. I have been virtually bed bound now for 5 years.

Unfortunately subsequent doctors haven’t been as supportive – many have just dismissed me. The usual practice is handing out antidepressants and painkillers but I’m intolerant to most prescription meds and the side effects are just too severe. I had one doctor tell me “Your fatigue is caused by over sleeping”. I had another GP tell me “If you don’t get out of that bed soon, you are going to die in that bed – sooner rather than later” I sobbed for 2 days. Unfortunately incidences like mine are not uncommon for M.E. sufferers.

I now live my life from my bed. I am lucky to have a very supportive husband, family and friends. I have care workers come to assist me twice a day which takes some of the pressure off my husband. It’s weird having strangers walk into your home, it took me a long while to adapt to that. I have always been so stubborn and independent so asking for help is challenging for me.

The realities of living with severe M.E:

* I live in a dark room with blackout blinds and thick curtains. I wear earplugs because even normal levels of sound are painful. I’m confined to my bed 97% of the time.

* I can’t stand or sit up long enough to prepare food for myself so I rely on others to do this for me. I can’t sit or stand for more than 5 mins due to weakness, pain, palpitations and dizziness.

* I only shower once a week because it is so exhausting and painful and my husband has to help me. I have learnt how to shower quickly but it still exhausts me for days. We had to convert our bathroom into a wet room because I was too weak to get in and out of the bath.

* I used to have very long hair but I had no alternative but to cut it off because I couldn’t manage washing and drying it myself. My hair was also very painful on my skin. I can’t sit up long enough to have it cut or styled, so my husband shaves it once a month using a pair of clippers.

* My husband and my carers do everything for me – cooking, cleaning, personal care etc. I’m so thankful for this but it means I lose my personal space and control over my environment.

* A common myth about M.E. is that we sleep 24/7 but this isn’t always the case. Even though I’m exhausted all the time I struggle to sleep or even rest due to pain, muscle spasms, dizziness and palpitations. I constantly feel agitated – in a state of unrest.

* Everyday objects are too heavy for me to lift, like kettles, standard crockery and jars (I use plastic ones), I can’t even open the fridge.

* I can’t watch TV or even listen to the radio – it’s too exhausting and painful.

* I’m alone for long periods of time because social interaction is exhausting and painful. Some days I struggle to communicate due to exhaustion and cognitive problems caused by M.E.

* I only leave my bed to go to the bathroom and I only leave my house to go to the hospital. I haven’t been outside for months, it’s just too exhausting and I’m too weak.

*I pay for every activity I do. Post-exertional malaise (PEM) is a key symptom of M.E. that causes a spike in symptoms and a massive energy crash after what, to other people, would be minor exertion. This means, if I choose to spend a few minutes talking to a friend, I’m likely to ‘pay’ for it for days afterwards.

* M.E. is not just fatigue. There are a myriad of symptoms including: muscle and joint pain, dizziness, flu like symptoms, swollen glands, Post-exertional malaise (PEM), hypersensitivity to noise, touch, light etc, muscle spasms, cognitive problems (brain fog), sleep disturbances, shakes and tremors, weakness, headaches and migraines.

* M.E. doesn’t just affect me. It also has a huge impact on my husband’s life. Not only does he care for me but he also has to put up with ‘strangers’ (care workers and medical professionals) coming into our home. He has to be quiet all the time and physical contact is limited. His life has to involve around me and my poor health. His social life is also restricted – in some ways it’s just as isolating for him as it is for me. He has to watch me suffer knowing, apart from being supportive, there is very little he can do to relieve my pain and suffering. He married an able bodied, active woman and has had to make a lot of adjustments because of M.E.

Before I became sick I had a very active social life. The boots in my photo represent my character well. I’m a rock chick who loves live music, dancing, singing, laughing and drinking with friends. I miss this so much, I even have vivid dreams where I’m singing so loudly I wake up with palpitations. My subconscious mind still craves stimulation even if my physical body cannot tolerate it.

M.E. has stolen so much from me but the most frustrating part about this debilitating illness is not being believed, and not having a voice. We are not just ‘missing’ – we are ‘forgotten’. That’s why I started my blog ‘A Journey through the Fog’ 6 months ago- to give myself a voice, to raise awareness and to try to reach out to others who are suffering too. Thanks for reading. Take care x

#ajourneythroughthefog #chronicillness #MECFS #mentalhealthawareness#fibromyalgia #blog #anxiety #depression #meawarenessmonth#millionsmissing #meaction #chronicpain #spoonies#MyalgicEncephalomyelitis #MyalgicE

What it’s like to live with the pain of Fibromyalgia.

Chronic pain is just one of the myriad of symptoms present within the Fibromyalgia body at any one time, but for me it is the most predominant one. Pain affects every aspect of my life. I pay for every physical activity I do, even the smallest task can lead to a flare of my symptoms.

Fibromyalgia pain is unique due to its severity, complexity, and multiple systems involved. There are 3 major types of Fibromyalgia pain; Hyperalgesia, Allodynia, Paresthesia.

Hyperalgesia is literally translated to excess pain; “Hyper” means excess and “algesia” means pain. It is the medical term for pain intensification in fibromyalgia.

Allodynia is the pain you feel when your skin is being touched. For example, a mild pressure from clothing or a gentle massage causes pain or a light breeze blowing across your skin. It is hypersensitive to stimuli that would not normally cause any pain.

Paresthesia is the odd nerve sensation that feels like something crawling, tingling, burning, itching or numbness, for example, a numb spot in the middle of your foot or a burning sensation on your back.

But to be honest these words mean very little to anyone who doesn’t suffer with Fibromyalgia. So to give non fibro people an idea of what it feels like to live with this painful and debilitating illness, I am going to describe the pain I experience, in a way I hope everyone can relate to.

  • Burning skin
    Sometimes my skin feels like it’s on fire, it feels raw. Imagine spending hours in the hot sun without any skin protection. Then you take a dip in the sea and the salt water burns your damaged skin. Then you get dressed for a night out and your clothes rub against your skin raw. When you have Fibromyalgia, clothing alone can cause this pain, no sunlight is required.
  • Throbbing/burning pain.
    This is a pain I find particularly hard to bear. It’s so severe it takes my breath away. It’s like a hot poker being forced into my body and can occur anywhere and everywhere. The pain comes in waves and is accompanied by nausea.
  • Joint pain.
    My joint pain is a dull throbbing pain. It mainly affects my knees but can affect other areas too.
  • Muscle pain.
    My muscles constantly hurt. Even the slightest activity causes them to throb and burn. I find it impossible to get comfortable when my muscles are throbbing, it makes me so restless.
  • Muscle twitches and spasms.
    I experience muscle twitches and spasms everyday, they are pretty much constantly there. It’s like you have no control of your body, like some unforeseen force is manipulating you.
  • Zaps.
    This is an odd symptom that I find hard to describe. It feels like an electric shock – a ‘zap’- that starts at the base of my skull, then travels to the top of my head and all the way to the tips of my fingers. It only lasts a second each time but it makes my whole body jolt.
  • Prickly feeling
    Have you ever had a heat rash after spending too long in the sun? That’s what it feels like. Sore, burning and itchy.
  • Stabbing pains.
    You feel like someone is using you as a voodoo doll.
  • A cross between an itch and a stabbing pain.
    I’m sure there is a technical term for this but ‘a cross between an itch and a stab’ is how I can best describe it. It happens deep in my muscles and it’s impossible to scratch the itch. It also causes jolts and twitches in the part of my body affected.
  • Bruised feeling.
    Not just on your skin but your insides also feel bruised, tender and sensitive. My chest and rib cage feel bruised a lot of the time which can make breathing painful. Some days it feels like you have gone 10 rounds in a boxing ring.
  • Migraine feeling throughout whole body.
    When I’m hypersensitive and flaring it feels like I have a migraine throughout my whole body, I feel raw. The slightest touch or movement sends pain pulsating around my body.
  • Stiffness.
    Imagine a healthy person goes to the gym after months of inactivity. They lift weights and have a full body workout. The next day they feel stiff and creaky, and struggle to move. A fibro person wakes up every morning feeling like this. It feels like I wear a bodysuit under my skin that is 2 sizes too small.
  • Radiating pain.
    I experience pain that has a centre point but radiates out from that point. The pain may begin in my back but also travels down my legs, for example.
  • Pain caused by touch.
    Even the slightest touch from a loved one can cause pain. I have to wear clothes two sizes too big, made from seamless soft material. I wear soft, flat shoes one size too big and I have to cut my hair short because it causes so much pain against my skin. Touch causes many of the types of pain I have described.
  • Migraines/headaches.
    I don’t think a day goes by that I don’t experience a headache, it may be due to tension. My migraines are aggravated by stress and hormones. When they strike I become incapacitated. I lose my vision and the pain is so severe. Your head feels like it’s on fire, you feel like it’s in a vice which is constantly being tightened. The slightest movement, touch or noise sends pain pulsating around my head and face.
  • Skin crawling.
    It feels like you have a thousand insects scurrying around just under your skin. It’s actually quite creepy.
  • Hypersensitivity.
    Some days the noise hits you like a brick wall. In an instant, you experience pain, nausea, dizziness, trembling, and a looming panic attack. But it’s not just noise, I’m also hypersensitive to smells, light and touch. Yes, a smell like a strong perfume can cause pain.
  • IBS.
    Fibromyalgia is often accompanied by comorbid conditions, such as irritable bowel syndrome (IBS). Contrary to what people may think, IBS pain doesn’t just occur in the bowels, it radiates to other areas of the body especially the back. It’s a stabbing burning pain. Trapped wind, in an already inflamed bowel, is one of the most painful symptoms of IBS, it’s overwhelming.

Pain isn’t the only symptom of Fibromyalgia but it is the symptom that has the biggest negative impact on my life and health. Do any of my fellow Fibromyalgia and chronic pain sufferers have any pain ‘types’ they would like to add? Take care x

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

Why having ME/CFS makes me dread the summer.

After I read the news that the temperatures in the UK were going to reach 27 degrees this week, my anxiety levels rose dramatically and panic set in. I hoped I would having longer to adjust to the summer – what happened to spring? – but I need to face the fact summer is here. I’m sure most people reading this are thinking: What is she moaning about? Summer is glorious! All that sun, warmth, days out, the beautiful colours of nature etc” – but it’s not so glorious for me.

The last few months have been good for me – probably the best I’ve had in the last 5 years. My health is improving, I’m doing a lot more and achieving so much, but I’m fearful that is about to change. Although the cold weather brings a lot of pain, it also allows me to do much more. I used to love the hot weather, summer was always my favourite season but now I dread it.

I dread the hot weather because it aggravates most of my symptoms, and restricts my ability to carry out even the smallest tasks that, during the winter I have no problem doing. The hot weather causes so much exhaustion, it zaps every ounce of energy from me – and I don’t have a lot to begin with. I have problems regulating my body temperature – it’s a common symptom of ME/CFS. In the winter it’s easy to warm up by turning up the central heating or using heated throws, but during the extremely hot weather it’s very hard for me to cool down. I use ice packs and fans, but that’s still not enough.

When I overheat I get very dizzy, I feel like I’m going to pass out. Have you ever got so drunk that when you lie down and close your eyes the whole world spins out of control? Well that’s what it feels like when I overheat – even when I’m lying down I feel like I am are going to collapse. My heart rate increases as my body tries to cool itself down but this only increases my temperature.

Any activity, even speaking, causes palpitations and increases my body temperature. I shut down during the hot weather because I’m fearful of overheating, so I avoid doing even slightest tasks. Once my heart rate and temperature increase it takes hours to calm my body down. I am also hypersensitive to light, direct sunlight causes pain and heat on my skin causes a flare of my Fibromyalgia pain. The heat also causes migraines which can last for days.

The air is so hot and dense I struggle to breath and it’s unbearable for me. But having a panic attack in this environment is my worst nightmare. The usual symptoms of a panic attack – increased heart rate, difficulty breathing, sweating, dizziness – are magnified 10 fold by the hot weather and my inability to control my body temperature.

After all the improvements I’ve made over the last few months I don’t want to go backwards. I want to continue this positive path but I fear the next few months are going to be very challenging.

But am I overthinking everything as usual? Is my fear of the hot weather the real problem? Is my anxiety making my physical symptoms worse? I know I cannot control the weather so why do I get myself so worked up about it?

Do you struggle regulating your body temperature? Do you dread the hot weather? Do you find the hot weather exhausting? Do you have any tips for keeping cool during the summer? Or do you love the hot weather? What do you love about summer?

EDIT: I wrote this post 4 days ago (before the heatwave) but I hadn’t got round to posting it because the hot weather has hit me so hard. I have had a migraine for 2 days now and I have crashed quite badly. I guess it answers my question; Is my fear of the hot weather the real problem? But I will not let this defeat me. I am now looking at installing air conditioning in my room (I will find the money!), I am determined not to let the hot weather ruin all the positive steps I have made over the past few months. Take care x

#ajourneythroughthefog #chronicillness #MECFS #mentalhealthawareness#fibromyalgia #blog #anxiety #depression #dread #selfcare #love #heatwave#summer

Your Illness does not define you.


I read the following Tweet yesterday and it prompted me to write this post:

“I often see posts along the lines of ‘my chronic illness is a part of me, I’m not my chronic illness’. If that works for you and makes you feel better – I’m happy for you. But it doesn’t work for me. I am my illness. It is me. We are one. It takes over every inch of my life.”

This was my reply:

“My chronic illness is very much part of me but it does not define who I am. I am defined by my kindness, my intelligence, my compassion, my sense of humour, my creativity, my stubbornness and my strength – not by the pain I have to endure.”

Yes, ME/CFS, fibromyalgia and anxiety seep into every part of my life. They influence most of my decisions and my actions. But there is a big difference between your illness being part of you and it defining you.

Please don’t lose sight of who you are. Chronic illness (and mental illness) steal so much from us but don’t let it steal that from you.

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