What is Cfs/me?
CFS - Chronic Fatigue Syndrome ME - Myalgic Encephalomyelitis
So what is Cfs/me broken down;
C - Chronic = Never ending pain
F - fatigue = Debilitating tiredness
S - Syndrome = Condition
M - Myalgic = Muscle aches/pains
E - Encephalomyelitis = Inflammation of the brain & spinal cord
Cfs/me has been a complete life changer. It has slowly stripped me of everything I thought I was. If someone stood in front of me describing the endless symptoms, I'm not sure I would have thought it was possible.
To feel like your bones are broken, hips stiff, skin sore, muscles bruised, random pains that stop us in our tracks and takes our breath away.
Along with feeling like your being slowly stripped of your soul, the constant exhaustion, yet there is no test to figure it out!
There is a controversy that surrounds this condition and I totally get it. But living with Cfs/me is most definitely teaching me so much about my own body, thoughts, feelings and life.
Factors thought to contribute can be;
- Inherited genetic susceptibility
- Viral Infections
- Traumatic Event - Bereavement
- Exhaustion / Mental stress
Factors thought to make symptoms worse;
- Recurring viral infections
- Poor diet
Who can get Cfs/me
This illness affects soooo many people, I think around 1 in 300! Mainly women, approx aged 22-45. Although kids can also develop symptoms 13-15...
I had an infection when I was 14, was left unable to walk, very weak and extremely fatigued for 3 months. This was never really followed up, all my tests were coming back normal so just waited to recover! No school though! Yessssss!
Don't give in if your tests are coming back clear, it doesn't mean there's nothing wrong, the clever dicks just haven't figured it out yet!
I have always stated that my family will find out what is wrong with me, at my autopsy!
There is no friggin way you can go through so much pain and torture, and there not be something seriously wrong!
Other possible Cfs/me symptoms;
- Mental - Poor concentration / Reduced attention span / Poor short-term memory / Difficulty to plan or organize
- Recurring sore throats
- Unsettled sleeping patterns
- Physical / Mental exertion can make alllll of your symptoms worse
And lots, lots more!
Admit to yourself that you have this illness and accept that it's going no-where fast.
Things in your life need to be changed up, begin building a new you.
This was a massive challenge - I didn't want a new me and just could not 'let go' of the idealistic views I had, of the type of wife and mom I wanted to be blah blah blah. Whatevs..
- Accept the things you wouldn't normally accept. Things like, help!
- Medication from your GP
- Managing Rest / 30 minutes relaxation / daily = This can essentially improve your mind and body
- Start a diary / set goals
- Change behaviours that are harmful
- Work different hours or duties
- If you have a setback don't sweat it, just gradually work yourself back up
No judgment - It's fine
My life is my job.
EVERYTHING I do is around surviving day by day. This involves lots and lots of lovely mindfulness, and crafting!
I plan to start bullet journaling and incorporating my pain/energy levels. It's something I tried a while back but got to routined and overwhelmed so I hid from it.
How are you?
Do you feel a complete fraud having an illness you can't prove?
What's your most effective treatment or therapy?
Are you ready to make changes to improve your mindset?
Do you hide from diaries/rotas/planners or are they beneficial?
Dip your toe into something out your comfort zone...
Embrace the bullshit and share your pain...
Love to you all, Jorja x