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

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

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.”

 

What I miss about my life before ME/CFS.

I am getting a pair of shoes ready to send to this year’s Millions Missing event. I have been asked to attach a tag with the following information; My name, how long I have been ill and what I’m missing. The ‘What I’m missing’ part got me thinking about the life I have left behind and my emotions hit me like a sledgehammer. So what do I miss?

I miss the simple things – the sun on my face, the breeze blowing in my hair. I miss walking to the local shops just to browse. I miss meeting up for coffee with my best friends and putting the world to rights. I miss sitting in the park watching everybody rush by as they go about their busy lives.

I miss growing my own vegetables – watching a plant grow from seed is so satisfying. I miss nights out with my husband. I miss work. I miss having a purpose in life. I miss being needed. I miss the seaside – the salty smell of the fresh breeze. I miss family gatherings – weddings, birthdays, even funerals. I miss crafting – there is something so rewarding about creating something out of your own imagination. I miss shopping. I miss buying clothes and shoes just because they are pretty – not practical. I miss long relaxing baths.

I miss getting drunk with my friends. I miss music – loud gigs where you have to shout to be heard, even when you are standing next to each other. I miss getting dressed up, doing my hair and makeup – I miss feeling pretty. I miss nature – watching birds bobbing around on the ground looking for food. I miss the vivid colours and the sheer beauty of the world. I miss my Mum, she also has ME/CFS and fibromyalgia so we hardly ever see each other. I miss cooking and baking. I miss caring for my husband and spoiling him with treats I have baked. I miss the satisfaction of a clean house. I miss my tidy house – I hate the clutter I now live in.

I miss travelling – the excitement of discovering new places. I miss making plans. I miss talking for hours about everything and nothing. I miss singing and dancing around the house. I miss laughing so hard my cheeks ache. I miss being spontaneous and carefree – not having to worry about the payback from my adventures.

ME/CFS has stolen so much from me but I have also gained a lot too. Being ill has forced me to pause and think. My life was so hectic and busy before, I didn’t have time to enjoy or appreciate the small things. I have learnt patience and mindfulness. I am thankful for every smile and every happy moment. I have gained so many friends online who have supported me through the tough times. I truly appreciate my dear friends who have stuck by me through everything life has thrown at me, and my life is enriched by their presence. My husband and I are closer than we have ever been and I have learned to appreciate everything about him. I have gained a better understanding of me and ME. I have found my voice and I will continue to write as long as there is someone listening. I am stronger because of what I have endured. Take care x

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

Why I Want to Lie Down in Public.

I have become so scared of leaving the house. What if my health takes a drastic turn for the worst and I need to lie down? What if my pain becomes too unbearable to stand or sit? What if exhaustion and dizziness hit and I feel like I’m going to pass out? Even sitting in a wheelchair is painful and exhausting. A network of safe places, where chronically ill people could lie down and rest, would give more freedom to a lot of people.

#ajourneythroughthefog #chronicillness #MECFS #mentalhealthmatters#fibromyalgia #blog #chronicpain

How do you find the strength to keep fighting when you have an incurable illness?

I’m an optimist, I’m a fighter and I’m a problem solver. But when you are struck down with an incurable and largely untreatable illness, where no amount of fighting will make you better, and your future is so uncertain, what do you do? How do you stay true to yourself and not give up? How do you wake up each morning and continue to fight? How do you stay optimistic when there appears to be no hope of recovery? How do you solve your problems when even the most intelligent minds do not know the cause of your illness? How do you convince yourself that tomorrow will be a better day, just to give you the strength to continue, when each day is such a struggle? How do you accept the limited life you have now, compared to the limitless one you once had?

You take one day at a time. You choose your battles and let go of the ones that serve no purpose except to exhaust you. You celebrate even the smallest achievements. You laugh when you can and cry when you need to. You learn to accept what you cannot control and work your hardest to change what you can. You learn your limitations and you adapt, but that doesn’t mean giving up. You appreciate each day because your future is so uncertain. You learn to forgive yourself and others. You learn compassion. You fight to raise awareness and understanding. You never lose hope because some days that’s all you have.

Living with a chronic illness is not a death sentence. It can be bloody hard but it makes you appreciate so much. It makes you appreciate your friends who have stuck by you even when you had given up on yourself. It makes you appreciate your family who love you no matter how many mistakes you make. It makes you appreciate your loving husband who didn’t sign up for this, who married an able bodied, happy and healthy woman, but still loves you just the same. You appreciate every smile and every happy moment. You appreciate life. Take care x

#ajourneythroughthefog #chronicillness #ME #mentalhealthawareness#fibromyalgia #blog #anxiety #depression #selfcare #love #incurableillness

Practical Solutions to Everyday Spoonie Problems


Having a chronic illness like ME/CFS or Fibromyalgia means everyday tasks can be challenging, exhausting and painful. But there are steps we can take to make life easier, to limit the stress caused and to conserve our energy for more enjoyable activities. Here are some practical solutions to everyday problems.

I’m too weak to lift everyday objects.

Some everyday objects like kettles, crockery and food containers can be too heavy to lift but you can replace them with lighter alternatives.

  • Kettle. Try using a ‘One Cup’ kettle. It only dispenses one cup of boiling water at a time. You don’t have to lift it, as the water is dispensed straight into the cup of your choice. It doesn’t take long to boil (about 90 secs) so you don’t have to stand for long.
  • Crockery. Try replacing traditional crockery and glassware with plastic alternatives. You can buy heat resistant plastic bowls, cups, plates and glasses. Picnic sets are a good option.
  • Heavy jars and food containers. Decant the contents into lighter and smaller plastic containers.

If you also struggle turning taps on and off, place a few plastic glasses in your bedroom and kitchen, which are prefilled with tap water by your carer or partner. Keeping hydrated is important for your health.

Don’t be afraid to ask for help.

I’m hypersensitive to everything.

A very challenging symptom of ME/CFS is hypersensitivity. Common sensitivities include noise, light, smells, chemicals, medication and certain foods. The following can help reduce the impact and pain caused by hypersensitivity.

  • Blackout blinds
  • Ear plugs
  • Sunglasses
  • Use Chemical free products
  • Use Unfragranced skincare and washing products.
  • Noise cancelling headphones
  • Remote controlled/dimmer light switch. This me I can control the brightness of the light in my room from my bed.
  • Different coloured bulbs/lighting.

    Everything is painful against my skin

When you have a painful condition like Fibromyalgia everything that touches your skin can cause pain. A few solutions I’ve found for this are:

  • Wear your clothes inside out because the seams cause pain. You can also buy seam free clothing.
  • Wear Strapless tops.
  • Avoid underwire bras
  • Choose your fabric carefully both for clothing and bedding.
  • Buy baggy clothing.
  • Avoid clothing with hoods e.g. hooded dressing gowns or hoodies.
  • Avoid heavy fabrics or clothing.
  • Cut your hair short. My long hair on the back of my neck and shoulders was causing me a lot of pain, so I cut it short. It may seem drastic but it made a big positive impact on my health and it will grow back. Scarves, hats and wigs are always an option when you have visitors, if you feel self conscious.

 Conversations are exhausting.

Holding conversations can be particularly challenging and exhausting, so why not try the following;

  • Limit time talking on the phone. Most things can be done online these days and it means you can do things in your own time.
  • Speak to friends about not calling. Instead you can converse online.
  • Code words for everyday tasks. When my ME/CFS is at its worst I struggle to speak at all. My husband and I have developed code words for simple tasks that need doing, so I only have to say one word rather than a sentence or two. It’s like our own private language.
  • Record instructions to carers or visitors in advance on a voice recorder. I frequently have new carers so I have recorded a list of instructions on my voice recorder so I don’t have to keep repeating myself, it also helps combat brain fog.
  • Compile a handbook with a list of tasks and instructions.

 

Brain fog

Even remembering the simplest tasks can seem impossible when you suffer from brain fog. Here are a few practical ways to combat this:

  • Calendar reminders. Use the calendar function on your mobile to set reminders.
  • Voice recorder. I record my thoughts, to do lists, emails I need to type, ideas for new blog posts, instructions to carers and much more on my voice recorder. I would be lost without it.
  • Pen and paper or post-it notes. If you don’t have a voice recorder these will do.
  • Routine. I find sticking to a strict routine is essential for combating brain fog.
  • Everything has its place. I always know where to go to find what I need e.g. medication. It’s important to stay organised.

 

Showering/bathing is exhausting.

People that suffer from ME/CFS are often too weak to get in and out of the bath, and showering can be very painful and exhausting. Try these tips to reduce the stress caused:

  • Only shower once a week. I know some people may find this disgusting but it takes me days to recover from a shower, so I don’t have an alternative. Wet wipes, panty liners and dry shampoo are a spoonies best friend.
  • Shower stool. Aids like shower stools and grab rails can make showering less exhausting.
  • Routine. Find a quick routine that works for you and stick to it.
  • Ask for help. Ask someone to run water for you. Ask someone to lay out your clothes and towel ready for when you get out.
  • Wall mounted shampoo and soap dispenser. You may not be able to lift heavy shampoo and shower gel bottles. A wall mounted dispenser is a good alternative.
  • Cut your hair short. It used to take me ages to wash and dry my very long, thick hair. It was exhausting and painful. I now have very short hair which times a minute to wash and I can leave it to air dry.
  • Keep wet wipes by your bed so your can freshen up when you need to.

 

I can’t prepare food or drinks myself.

One of the most frustrating obstacles I have to overcome is, I can’t prepare food or drinks for myself. I am lucky enough to have care workers that prepare my food for me, but I have to be able to feed myself when they are not about.

  • Snacks. Have a selection of snacks at easy reach of your bed or bedroom.
  • Cool bag. If you struggle walking to the fridge or opening the door because it’s too heavy, why not try using a cool bag. You can place it in your bedroom and access fresh food when you need it. My care workers prepare my lunch in the morning and put it in the cool bag along with an ice block.
  • Batch prepare food. Ask your partner, friend or family member to help you prepare food for the week.
  • Water cups. I have a few plastic glasses in my bedroom and kitchen which are filled with tap water by my care worker or husband because I struggle using the taps.
  • Coffee or tea and sugar already in cups.Thanks to the One Cup kettle I can prepare my own hot drinks when I’m alone but I struggle standing long enough to place the coffee granules and sugar in the cup. So my husband does this for me in advance and places a few cups by the kettle.

 

I have limited mobility.

There are many mobility aids you can use and adaptations that can be made to your surroundings. Don’t be too proud to use aids that will make your life easier.

    • Walking stick
    • Wheelchair
    • Walker
    • Neck and back brace
    • Perching Stools
    • Hospital/adjustable bed
    • Convert bathroom to a wet room
    • Grab rails
    • Riser recliner chairs
    • Reaching aids like Grabbers
    • Raised furniture

Please note: If you live in the UK and you’re disabled or have a long-term illness, you shouldn’t be charged VAT on products designed or adapted for your own personal or domestic use. For more information please follow this link:
https://www.gov.uk/financial-help-disabled/vat-relief

  • Anything I use regularly, I keep in easy reach of my bed e.g. medication, wet wipes or bottle of water.
  • Keep your mobile phone at easy reach. It can be used to text or call someone in an emergency or just to communicate with other people in your home e.g. if they are upstairs and you need assistance.
  • Plug appliances you use regularly into a remote controlled socket. That way you can turn them off from your bed.
  • Remote controlled light switch. I have one of these in my bedroom and it means I can dim and turn off my main light from my bed.

 

I’m always too hot or too cold.

I find it impossible to regulate my body temperature. Depending on how I feel on alternate between the following products:

  • Heated Throw
  • Rechargeable hand warmer
  • Ice packs
  • Electric fan
  • Cold wet flannels
  • Hot water bottles

 

I can’t answer the front door.

Sometimes we are not strong enough to walk to the front door to answer it. Here are a few solutions:

  • Install a Key safe for care workers, medical professionals, friends and family. The added bonus of a key safe is, if you have a bad fall and have to call on the emergency services they can enter your house without having to force the lock.
  • Install an Intercom system.
  • You can get basic Intercom systems where you can speak to visitors or more advanced ones which also include a camera. These are great for communicating with visitors without having to walk to the front door. You can turn unwanted visitors away without leaving your bed or direct wanted visitors to your key safe so they can let themselves in.
  • Keep your mobile phone at easy reach so you can call someone in an emergency.
  • Arrange parcels to be delivered to friends, family or neighbours or have a safe place where parcels can be left.
  • Arrange deliveries for when your partner, friends or family will be at home.

 

I’m bored. I have too much time to think.

When you are too exhausted to socialise or even watch TV, boredom can set in. Boredom can lead to an overactive or anxious mind. Why not try:

  • Reading
  • Audio books. For the times when even physically reading is too exhausting, audiobooks are a great alternative.
  • E-readers like Kindle are a great, lighter option to physical books. You can also adjust the text size if you have trouble focusing due to fatigue.
  • Listening to Music or the Radio.
  • Download free Podcasts
  • Mindfulness Meditation. Calms anxiety and is great for general well being. There are many apps you can download for free.
  • Social media. Interact with friends online. There are plenty of distractions on social media and there is always someone about 24/7 for the nights you are unable to sleep.
  • Colouring books. A good distraction and a way to practise your creativity.

Do you have any tips you would like to add?

#ajourneythroughthefog #chronicillness #ME #fibromyalgia #blog#invisibleillness