Listen to ME

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Listen to ME

***ME/ CFS FIBROMYALGIA awareness post***
Normally you should wake up yawning, refreshed and ready for the day.
I have only woken up because the teeth gritting pain brought me out of sleep.
As I woke I clamped my teeth together as to breathe was like breathing with swords smashing through my ribs. Any movement to my back was like molten rocks hurling into my spine. This is on top of the pounding headache, eye socket pain and the insistent throbbing agony in every joint, nerve ending and muscle.
So I held my breath to try and stop the pain, frozen to the spot, unable to move an inch.
Eventually you have to change position so you have to breathe again, grit your teeth and shuffle inch by inch to reach for the pain killers.
Should be a story by an 80 year old, right?
This is how I have spent most of my 40’s.
People not affected by this condition don’t really care, I know I wouldn’t. But the scary fact is this disease is becoming a pandemic far more common than MS and breast cancer. Most people drag themselves through their lives just thinking they are tired or have a bit of arthritis, not even diagnosed properly.

Luckily we are just getting a multi million pound investment into this incurable condition for bio medical research.

Amazingly Jen Brea has swept the Film industry gathering nearly every award going for her documentary UNREST a documentary on filming ME sufferers from her own ME ridden bed. This will be out this month.

So society may be coming round slowly, but spare a thought if you know someone with this condition.

See if they need some fresh bread or milk. Understand that on some days they won’t answer the phone. Just sitting with them not talking, watching a film is worth more than gold. See if they need help cleaning themselves, drop by with some bed wipes, magazines, treats or a cooked dinner. This is what we need but would be too mortified to ask.

A high percentage of us are lonely, scared of the future and are fighting to stay positive every waking hour. But because we are young, stubborn pride kicks in.
My dream would be for warden controlled facilities for chronic illness sufferers. Cool flats to live in meeting places when you have a good day and a carer cleaning the place. I would move in, definitely.

I am having to move again now because I am too remote and do not see people for weeks apart from paid carers/ cleaners/helpers. Yet again I have to say goodbye to a house I adore as I am too lonely.

Most sufferers oddly enough are driven, successful, hard working people struck down after illness or trauma.

We are brave, we smile through the pain, multi symptoms and the slaughter of indescribable exhaustion. We say yes to events even though physically we are suffering incredibly, just to ‘people please’ and appear ‘normal’.

As like old people we suffer alone. We are left alone with no food, help or support for weeks, months or even years. I have to pay for all of my help.
That is all my money goes on, apart from pyjamas!

We have to fight to prove we are ill with the local health authority to get benefits because we can’t work.

Our illness still silently holds the stigma of ‘yuppie flu’. So we are forced in our weakened states to make an appeal against the local authorities proving our condition to get PIP and other monetary help. Five of my friends have to take on the authorities to prove they are ill. They have to create their case for court in weakened states. Currently they are on £90 a week to survive.
WHY?
Would we have to fight the authorities if we had severe asthma, cancer or severe arthritis? The more known conditions? The simple word is NO.
Tell your MP’s people. Let them take on your fight!

We lose, like I did, our homes, career, partners, independence and lifestyle.

GP’s avoid us as they take no measures to understand the illness. We become the experts, doctors aren’t worth the effort of getting dressed and sitting in front of crying your heart out asking for help.
They offer us no hope, they stuff us with more pain killers. They see us as hypochondriacs.
A GP in Devon told me I had no disability and needed to get a grip it wasn’t like I had broken a leg or something. I should have complained about her, but we are easy pickings as we don’t have the energy to fight.

Friends disappear as they don’t understand the condition or just don’t need the hassle.
Your world changes into a gold fish bowl where you spend every waking hour of your youthful life in bed or house bound searching for the next box set to take your mind off of your non existent life.
We live as ghosts.

Times need to change. Help someone you know who suffers. Spread awareness.
Share this page.

You or a loved one WILL be affected by this condition.

I have typed this very slowly as my fingers and brain are working like a 90 year old.
I took the time to type it, please take the time to read it.

Thank you x


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Me Myself and I. My Soul diaries 13.

SURRENDER IS THE KEY, DENIAL IS YOUR PRISON

The visit of that lovely spirit lady raised my vibration in a big way.  It gave me impetus to start looking at my life and make some pivotal decisions.  I needed to start facing reality and realise that this was my new life.  It was nothing like my old life but I started thinking that I needed to reach out for help.  I needed to find ways to help myself and set goals that were reasonable and manageable with my condition.  I was starting to pull away the threads of denial.  I was disabled, in need of serious support and I needed to own the reality of being a sufferer of a chronic condition that was not going to go away any time soon.

Time to set sail away from this space

Time to set sail away from this space

The first thing that I did was change my GP.  It was one of the best decisions ever.  My new doctor was very empathic and completely understanding of ME and fibro sufferers.  He was open to any treatments and exceptionally supportive.  He even allowed me to phone him whenever I wished as he knew I couldn’t get to the surgery easily.  The next thing I did was call the local community care team who were brilliant.  They provided me with equipment that assisted bathing and every day things that I couldn’t manage.  My carer would regularly visit and help me with absolutely anything I needed, even if it was just a therapeutic chat.  These two phone calls took a long time to do, as I found coping with change and reaching out into the world very difficult but was so pleased with myself when I did.  I also got a cleaner as I couldn’t risk using my energy up cleaning. I arranged a massage therapist to visit my home when I was up to it to soothe my agonised muscles. I arranged a dog walker.  It was an absolute joy to watch Teddy and Mia sit at the gate waiting for the dog walker to arrive.  It was like they had a sixth sense.  They knew the days he was coming along with three other fur babies and would sit patiently listening out for his car.

BABY STEPS LEAD TO GIANT CHANGE

I felt strengthened by these tiny little steps.  I would always recommend tiny goals to set yourself that are MANAGEABLE, even if just one gets ticked off in a week, it’s a step in the right direction.

Out on their walks

Out on their walks

Walkies!

Walkies!

The next thing I set myself to do was reach out and find forums that had members coping with chronic illness.  It was one of the best things I did.  On Facebook I met a beautiful group, The Barmy girls who were from all over the world.  We don’t sit wailing and moaning, we cheer each other up and support each other.  So during my lonely nights there was always someone to talk to.  There are many support forums on Facebook for chronic illness sufferers, I cannot recommend them enough.  You also get fabulous advice and suggestions from hollistic remedies to updates on new drugs that are out.  I love those girls so much and what also helps is that they totally understand everything I am going through.  The most heart breaking thing is people not understanding your condition and making judgement.  I then started to reach out and tell me friends that I needed help.  Very slowly my ‘coping’ armour was taken off piece by piece.  When I couldn’t feed myself or cope, rather than starve or just eat biscuits I went and stayed at my friends’ Leigh Ann and Lynn’s house.  I allowed myself to be weak and frail, I allowed them to bring me cups of tea and lunch.  It felt alien but God I felt so much better admitting to people I had a debilitating condition that I couldn’t manage alone.  I changed my eating habits and did every diet that was recommended, but to be honest I felt no benefits from any of them but I still take the following health supplements:

Coenzyme Q10, Ubiquinol (Highest strength you can get), Vitamin D, Busy B’s, Cod Liver Oil, Glucasamine Sulphate (Has to be with Chondroitin), Magnesium (an absolute must!) and K2 which helps distribute the magnesium into your body.

ESSENTIAL OILS ARE ESSENTIAL!

I also find Epsom salt baths fantastic.  Put about four scoops in and to help your body even more, drop five to nine drops of essential oils into the last scoop.  I always use Lavender oil for pain relief and anti inflammatory as well as Bergamot which is a natural antidepressant.  In fact I burn essential oils all day and every day.  I studied the ones that particularly help my symptoms and they also make the house smell lush!

My friend also found this for me.  It is a very soothing oil mixture to rub on the most painful parts of your body.

DILUTE THE FOLLOWING INTO 30 ml OF OIL (ALMOND/VEGETABLE/CARRIER OIL)

5 DROPS THYME

10 DROPS ROSEMARY

5 DROPS CYPRESS

10 DROPS EUCALYPTUS

10 DROPS PEPPERMINT

Here’s a link to get you started on your path to the magic of essential oils   oils https://draxe.com/essential-oils-guide/

YOU ARE WHAT YOU EAT

I also do juicing when I am feeling up to it for breakfast in my Nutribullet (another tip from my Facebook friends, thanks Paula!).  The most important things to add to your fruit/veg juice is nutmeg, cinnamon, turmeric, ginger.  These  all  have anti inflammatory and pain relief qualities.  I had indigestion and tummy problems for three years until one of my friends on my forum recommended fresh ginger.  My discomfort was gone within hours.  I also don’t drink alcohol and drink water like it is coming out of my ears.  I also have a thirst for Earl Grey tea.  I later found it was made from Bergamot, an anti depressant, so my body was telling me what it wanted.  The good thing about this new brain/ body is that you become so in sync with your body that your intuition tells you what you need.  I have never listened to my body and mind so much in all of my life.  It does cry out for sugar a lot, so even though it is bad I answer it’s call.  If there’s something it doesn’t want it’s normal rejected straight away!  I like things now that I never did before my illness like chocolate, coffee, green tea, ginger, but on the flip side things I adored do not agree with me anymore i.e wine, southern fried chicken, normal tea, strong spices.

THE EPIPHANY

Amazingly through this process I came to a striking revelation.  All of the advice I had doled out to thousands of people as a police officer and medium, I was now doing it for myself.  I had never thought to love and care for myself before.  I had never meditated every day or stopped and appreciated living in the moment.  I had never spoken to or lived such a spiritual existence.  The thorny vines of this illness curse were actually starting to bloom small flowers of positivity.

LISTEN TO YOUR BODY!  It has crashed for a reason, it is up to you to find out what it needs.  But remember we are all different and some things work better than others. Depression hits like a steam train with no warning.  All GP’s will prescribe you with some form of anti depressant.  They have found that apparently it helps with the nerve pain.  It will usually be something like prozac, fluoxetine or duloxetine.  I was not happy being prescribed with these drugs but I had no choice.  Be open to anything that will help you.

A HAPPY MIND MAKES A HAPPY BUNNY

But, there is one thing that will be the biggest battle of your life.  Your mindset.  I still struggle now but have improved a hundred fold in the last couple of years.  You have to find ways to keep you happy on the bed ridden days.  This can be music, comedy on the TV,  jigsaw puzzles, home crafts, adult colouring, meditation. You have to keep your mind busy because it will slowly descend into blackness if you do not find ways to keep yourself afloat mentally on the very bad days.

Why do you think I write this blog? lol 🙂

Curl up with a good book

Curl up with a good book

Obviously if your eyes and brain fog can cope, a good book is a must.  I go through hundreds of books, it’s a great way to escape.  But the most important thing is educating your loved ones.  The biggest problem I see from other sufferers is the lack of understanding by friends and family and them permanently trying to justify this invisible illness to them.  They are in more denial than you are.  If your husband/mum/mate is subtly referring to you as lazy, forcing you to get up and do things or insisting you get a grip, you need to start putting your foot down. They will NEVER understand how it feels.  They will never fully appreciate that every single second of every single day you are in pain somewhere or everywhere with no let up.  They can’t possibly understand that as soon as you stand, gravity pulls you down into a heavy, claustrophobic exhaustive suit that will not disappear and cannot be removed.  Tell them your feelings.  Tell them you need help.  Tell them to read up on what you are suffering with.  If they refuse to acknowledge your predicament, you have to make some serious decisions.  You CANNOT be surrounded by judgemental people who make you feel useless.  I am so lucky that my friends are understanding.  The ones who weren’t have diminished which is fine by me.  I don’t have to explain myself to anyone.

DON’T SUFFER FOOLS GLADLY

Unbelievably a lot of my friends in the last few years have been diagnosed with the same condition!  It is a very common pandemic that the health organisation and society have to wake up to.  The most incredible thing was, my friend Jay got diagnosed with ME. So we now hold each other up on the bad days. Us meeting was meant to be.  My old friend Nicky also was diagnosed along with FIVE others.  We have very interesting conversations normally starting with, “What’s wrong with you today!”

Be kind to yourself.  Admit you have a serious chronic condition and ADAPT.  You have to grieve your old life and find ways to survive in the new one that has befallen you.  There is no cure for this illness.  Don’t chase the next ‘miracle treatment’.  Cope with what you have, gain control and make yourself as comfortable as possible.

It is no mean feat but together we can continually fight this relentless beast.

Reach out, ask for help and love yourself.  On the bad days keep your mind busy and if you need to sleep all day, DO IT! On the good days don’t overdo it or you will find yourself in bed for days or weeks after.  We all do it though, it’s called booming and busting.

YOUR RIGHTS

I was no longer going out, buying clothes or spending money on normal life things so every penny I had went on helping me.  If you find as I did that you cannot work, you are entitled to benefits.  You can apply for PIP which is a living allowance for disabled people.  I also got a blue badge for my car and owned the fact that even though my title was ‘disabled’ I was still the same person but just needed a little help. Don’t suffer in silence like I did for three long years.

All of these achievements took ages to deal with and arrange.  But I felt so much stronger in myself and felt I had established some sort of control of my life.

However, I was still on Morphine, Gabapentin, Cocodamol, Ibuprofen, Duloxetine and Paracetamol.  I was eating them like smarties, but pain was still a constant companion.

A MESSAGE FROM HEAVEN

My clever Nan

My clever Nan

It took a visitation from my nan one night on the 27th July, to change my life considerably.  I will never forget the night that I saw the spirit of  her bustle across my landing, turn around and radically change my day to day life by saying three little  words……


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