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

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.”

 

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

Unrest is now available on Netflix

Just a reminder, the film Unrest is now available to watch on Netflix. Have you seen the film yet?

Unrest is an incredibly moving work of art with a positive and empowering message. It has given millions of ME/CFS sufferers a voice. Here’s my review:

#ajourneythroughthefog #chronicillness #ME #blog #unrest #jenniferbrea

My Personal Review of Unrest.

So what is RSD/CRPS?

The following informative piece was written by one my followers Pete Lacey(Thank you Pete) Pete also runs a Facebook group (Big Steps Little feet/CRPS chronic pain info) where he helps support people who are suffering with chronic pain. If you would like to contribute to my blog please send me a message, I would love to hear from you.

So what is RSD/CRPS?

(Reflex Sympathetic Dystrophy/Complex Regional Pain Syndrome)

To start, it is the most painful medical condition known to man at a 45/50 on the McGill pain scale. Because it is so painful, and it is hard to find a good doctor to treat the condition, CRPS (Complex Regional Pain Syndrome) has the grim nickname ‘The Suicide Disease’

RSD/CRPS is a disease of the central and Autonomic nervous system. Within the Autonomic nervous system there are two branches: The parasympathetic OR ‘Rest to Digest’ mode and the sympathetic OR ‘Fight or Flight response.

There are 2 kinds of CRPS, TYPE 1 and TYPE 2.

TYPE 1 occurs without a direct injury to a nerve, so many people with TYPE 1 CRPS do not know why their symptoms started. TYPE 2 CRPS, formerly known as Causalgia, occurs after a direct injury to a nerve causes some degree of damage.

Type 1/Type 2 Symptoms

Most people experience;

  • Burning
  • Stabbing
  • Shocking
  • Gnawing
  • Crushing
  • Throbbing and cold pain.

Other Symptoms may include:

  • Allodynia: Hypersensitivity to light touch
  • Hyperalgesia: Extreme Hypersensitivity to pain
  • Changes in hair and nail growth
  • Skin colour changes
  • Skin Temperature
  • Changes to sweat patterns
  • Stiffness in the joints
  • Temporary Paralysis
  • Delayed wound healing
  • Hypersensitivity to sound and light
  • Irritability
  • Edema
  • Depression
  • Insomnia
  • Fatigue
  • Dystonia
  • Weight gain/Weight loss
  • Tremors

My personal experience with CRPS is that it takes your life, you lose your friends, family, work colleagues because of the Stigma INVISIBLE ILLNESS. What you can’t see you don’t know, you don’t look sick.

After my accident in 2012, from a crush injury to the left leg, it took 26 months to be diagnosed, which in this day and age is way too long. Awareness is essential. Before a diagnosis was made we, as a family, had nowhere to turn, they were going through the severe pain in the same way. I would often have a sneaky cry because we did not know if this was going to stop, nor could any Doctor tell me what was going on. I looked into the scary Joys of Google and I did not like was I was reading.

After reading loads of articles and joining groups on facebook, I could not believe how many people were suffering from this, it was scary to know there is NO CURE.

Having most of the symptoms (as above) I then was diagnosed with Leg Emphysema and fasciitis in the same leg as the CRPS, which totally took over my life.

With the cocktail of Meds, I’m sure most of you will understand the Brain fog, fatigue really gives you one, so I opted for a spinal cord stimulator (SCS) which I’m finding is lowering my pain to this day. This has enabled me to get a form of life back and help others, so I started a chronic pain group https://www.facebook.com/groups/BigstepsCRPS/ People need to know help and support is out there.

I’m taking each day as it comes at the moment, as not everyday is the same, meds, SCS for the chronic pain and as for planning your day, ‘NO such Thing’.

I have linked up and met some wonderful people on my journey and long may it continue. My family have been amazing.
We have put together an amazing team of people to help with research, loads of experience in Rare Diseases. 2018 will be a good year, it will be amazing to be part of our worthy cause.

CRPS can be a lonely place, Please don’t feel alone come join us.
Pete@Bigstepslittlefeet/CRPSchronicpaininfo.

Taking back control of your life and health.

When you suffer from a chronic illness or have mental health issues, it can feel like you have no control. I have always found this to be the most frustrating and challenging part about being ill. My deteriorating health spiralled out of control so rapidly I felt overwhelmed. Each day I felt like my body and mind were betraying me and conspiring to make my life a misery. Each day I would tell myself ‘just get through today, tomorrow will be a better day’ but there are only so many times you can tell yourself this when in reality the ‘better days’ were nowhere to be seen.

The reason I started this blog was because, I wish I knew then what I know now. When I’m writing I pretend I am talking to the broken and suicidal woman I was 4-5 years ago. I hope by sharing my experiences and knowledge I can help others and give people hope. With small steps you can gain back some control over your life and health.

*Steps to taking back control*
(Words of encouragement to the ‘broken’ me)

1. Take small steps. Tackle one symptom at a time.
When you have a complex list of medical conditions it’s unlikely that you will find one remedy for them all. If you try to find a remedy for all your symptoms at once you will be disappointed and feel overwhelmed.
Therefore, you need to decide which symptom is having the biggest detrimental effect on your health, and tackle that first. For me, that was anxiety. Anxiety affects my ability to cope with everything in life including pain, fatigue and stress.

I started taking CBD oil and practicing mindfulness meditation in an attempt to reduce my anxiety levels but along the way I also noticed improvements in many of my other symptoms.

2. Try not to give into frustration.
Try not to get frustrated if you health deteriorates. The severity of symptoms for conditions like ME and fibromyalgia can fluctuate quite dramatically day to day. It’s not a step backwards, just part of the journey.

3. Don’t isolate yourself.
When even speaking is exhausting and painful, it’s easy to feel isolated. Reach out to family and friends. If you don’t have a solid support system, take steps to build one. I withdrew from all social contact for many months because I feared the negative impact it had on my physical health. For days after speaking to friends I would be exhausted. But my mental health suffered from this isolation. Sometimes it’s worth the pain and exhaustion for a few minutes of interaction with friends and family. Laughter often causes me pain but I still enjoy a good guffaw.

4. Educate yourself.
Learn as much as you can about your condition. Knowledge is power when it comes to getting the best treatment available and keeping your sense of independence and control.

5. Do what makes you happy.
As much as is possible, keep doing the things you like to do. You’ll stay connected as well as boost your self-confidence and sense of community.

6. Take one day at a time.
I know it’s a cliche but it’s important to take one day at a time. Some days, just to survive, I could only think about the next 5 mins. Worrying about tomorrow can be depressing and can also increase anxiety.

7. Stop fighting yourself. Don’t beat yourself up.
When I do too much, or I let stress affect my health, I often beat myself up. My favourite phrase, that I repeatedly told myself when my health was at its worst was, ‘you f**ked up!’ I blamed myself for my crash or deteriorating health. But it’s not my fault I’m ill, just the same as it’s not your fault. Be kind to yourself.

8. Take time to remember how bad you were and congratulate yourself for how far you have come.
During the bad days, when my physical health deteriorates and depression hits, I make a conscious effort to remember how bad my health was 4-5 years ago. By focusing on that, I can see how far I’ve come. It often lifts my mood and makes the bad days easier to manage.

9. Don’t be afraid to ask for help.
Admitting you are not coping and that you need help does not mean you are a failure, quite the opposite. Asking for help shows strength and means you are taking positive steps to gaining back control over your life and health.

10. Try not to worry about what other people think.
Only you know what it feels like to be in your body. No one else will truly understand, even if they want to. They cannot feel your pain, exhaustion, anxiety, fears. They do not know the battles you face everyday and the strength it takes just to survive. They may think you are exaggerating or just lazy, but that doesn’t matter. It’s your journey not theirs.

11. Rest and Pace yourself.
Resting does not mean you are lazy. You are giving your body what it needs to recover. You don’t have to do everything at once. Pace yourself and enjoy the little moments in life.

12. Have realistic expectations and celebrate each little achievement.
It’s taken my body years to get this weak and exhausted so it’s likely to take years for it to repair itself. Rest, look after yourself and celebrate even the smallest achievements. By just surviving you are winning!

13. Finding a balance (Acceptance with a fighting spirit).
The push/crash part of a lot of chronic illnesses can be very frustrating. When you feel well enough, especially after a long period of being incapacitated, you want to do everything. But this only leads to a hard crash. I find when I’m active, my physical health deteriorates but my mental health improves. When I rest, my physical health improves but my mental health deteriorates.
So I often experience long periods of activity followed by long periods of exhaustion and depression. Try to find a balance

14. Remember you are not defined by your illness.
Living with a chronic illness can be all consuming. It takes over your life and it’s often hard to differentiate between your illness and the real you. You are still the same person you were before you became ill, you just have a few additional challenges to deal with.

15. You do have a future. Things can and will get better.
No matter how desperate life seems right now, there will be a time when you can laugh again, when your life will be worth living again. I remember the first day in years when I could finally see a future for myself, it was such an inspiring day and the memory keeps me going when I have bad days.

Living with chronic illness can be stressful, but you can take steps to manage your condition and maintain a good quality of life. Learn as much as you can about your illness and treatment needs. Make time for activities and relationships that leave you feeling happier and supported, while avoiding people and things that stress you out. By adjusting your expectations and practicing self-care, you can make your health and wellbeing a priority and take back some control. Take Care x

#ajourneythroughthefog
#invisibleillness
#chronicillness
#mentalhealthawareness

What can CBD treat? Success Stories


While conducting my survey I came across some positive and inspiring CBD success stories, which I would like to share with you. If you would like to read more about the survey, please click on this link: https://m.facebook.com/story.php…

The following are comments taken from the survey:

“(I have) Osteoarthritis, low mood, poor sleep. The inflammation, stiffness & pain gone. Sleep brilliantly and much more chilled & happy. 12 year old dog with arthritis now like a pup. Both of us take no pharma meds now”

“(CBD has helped) Low mood, depression, less anxious, pain in joints from menopause, deeper sleep. Knee pain. Got my sense of humour back!”

“I have chronic migraine (constant migraine with about 2 acute attacks a week) and Constant daily headache. CBD has eliminated the constant nausea, reduced the amount of constant head pain and I’ve only had one acute attack in about 5 weeks and that was triggered by an occipital nerve block injection which also caused stiff neck and the CBD balm got rid of the stiff neck”

“Our 15 yr. old very large dog, with severe arthritis in his back legs is now actually running! stiff legged but still running and a much happier chappy”

“I have a rare autoimmune that causes inflammation to blood vessels. CBDA has controlled the IBS and gut inflammation, reduced the number of bursting blood vessels I get, soft tissue ulcers, joint pain. I’m less tired and sleep better with the CBD element”

“I have anxiety and insomnia. I can now function with the help of CBD for my anxiety and have not have an attack since starting taking 1 drop 2 times a day (with no intention of upping the dose). I have found that I can manage to live my life ‘normally’ and leave the house on my own when it is not for work. My insomnia has not been helped at all”

“arthritis from 6 yrs old, 2 failed operation on hips and shoulders, subluxations due to eds, rheumatoid arthritis coming in hands, acid reflux, restless legs, pain and insomnia…. terrible side effects to meds that didn’t work so turned to alcohol as well….. of all meds, no longer suffer restless legs, insomnia 80% better now just have a bad night now and then, quality of life improved, less pain, more mobility”

“I have fibromyalgia, bpd (borderline personality disorder) AD (adjustment disorder) DD (dissociative disorder) cbd gives me a new life it’s still difficult as I take no other medication but I highly recommend it for pain but especially for mental health it helps calm any ‘bad’ thoughts, still can’t communicate face to face but that’s socially awkward 😂 or just don’t like people lmao”

“Taking it for chronic vestibular migraine. It has helped but as a bonus, it has also helped with psoriasis, arthritis and menopausal hot flushes”

“ME: Chronic pain and spasm / inflammation in my neck / shoulders (caused by bulging discs and nerve impingements). I’m now virtually pain free. Also helps with my ADD and with anxiety.
MUM: Osteoarthritis in her knees. She is seeing a big reduction in pain over time.”

“My dog has epilepsy, and CBD 100% controls his fits. I also know a human who is using it for the same reason, and with success.”

“Diabetes-A1C is now normal. Inflammation in my knee causing much pain is gone. All around aches are gone. Not as stiff or sore. Anxiety is so much better! And an all around better feeling of wellness. What it did not help is stomach issues like reflux or heartburn (though they are better than before just not much difference) And my gray hair? Ya, it’s STILL gray!!! ;)”

“Our 15 year old son has Aspergers, PDA and severe anxiety. The effect of CBD on him was immediate. The first time he used it was when we traveled to the east coast last summer and normally a trip like that would cause him anxiety such that he would need to stop and urinate every 20-30 minutes along the journey. On that occasion, we didn’t stop once and he was able to go to the beach immediately on arrival, where he normally would take a day or 2 to recover after the journey before venturing out. We try and get him to use it everyday (but aren’t always successful) and it has made life a lot less stressful for him and us as a consequence.”

“My 13 yr old daughter using CBD to treat bad joint pain from EDS. She has brain fog, fatigue also. Her joint pain is 90% decreased.”

“Chronic lumbar/lower half pain & arthritis . Cbd takes the edge of the pains & lifts mood. Never 100% pain free, but most days the cbd knocks it down a few levels to a manageable degree”

“I suffer from PTSD, bad anxiety and depression. I use cbd 500 oil. One drop twice daily. Life changing ! 😊
My 11yr dog cried and yelled getting in the car. He is running around like he was 5 🐕.”

“I have Fibromyalgia and osteoarthritis. My husband has degeneration of shoulder joints due a new replacement right shoulder very soon. We both have benefited and no longer take opiate pain killers. Not a cure but life is so much better😁

“I’ve recently started using CBD oil as I’ve got Parkinsons and it’s been absolutely amazing it’s helping my anxiety my cramps my sleep relaxation and my movements/mobility and I’ve only been taking it a week!! So happy I started using it I’m sure it has many more benefits yet to come…! I also use the CBD balm for aching/painful joints…”

“I have severe CFS/ME, Fibromyalgia, osteoporosis, IBS, anxiety and panic attacks, migraines, depression and insomnia. CBD has successfully lowered my pain and anxiety levels, helped my insomnia, fatigue and reduced my IBS symptoms. CBD allows me to manage my symptoms more effectively than any prescription medication I’ve tried. I can finally see a future for myself.”

Thank you to everyone that contributed and for giving me permission to publish your comments. It was so uplifting hearing all of your success stories.

Has this inspired you to try CBD?

#ajourneythroughthefog
#CBD