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A story to help children of those with #ChronicIllness

My husband Tom is a member of the Royal Navy and we have two young daughters. In 2017, Tom completed a Land's End to John O'Groats bike ride - a distance of 1000 miles in just 5 days. Following this, Tom became extremely fatigued and bed bound unable to do much more than go to the bathroom. After months of tests, and 'ologist' appointments, a diagnosis of M.E/CFS was given. Our daughter, then 3, struggled to understand what had happened and became anxious. This prompted us to write a story which helped her understand and come to terms with her dad's condition which is called 'Supercharged Superhero' (now available on Amazon). It is really for any child who is coming to terms with a sudden change caused by #InvisibleIllnessTom is so fortunate to have received medical care from a RN Recovery Centre with an amazing #OccupationalTherapistOver two years he has worked with his medical team, beginning with his cognition and concentration, then later gently helping him to physically become stronger through pacing and careful monitoring. He’s recovered enough that he is able to access family life in a way that we thought he could never do again. Tom will be medically discharged from the Navy at some point this year but is hopeful that his chosen career path will enable flexible working which will make things manageable. He still has bad times, the crashes still come and he doesn't always manage his condition as well as he could but we are so incredibly proud of the steps he has made. We are incredibly grateful for the things he is able to do with us. To quote the book: "Things are just a bit different now, That doesn't mean I should be sad. Time together's more precious than ever, Slowing down's not really so bad. We get to enjoy the little things, The bits we used to miss. When we were always rushing round, Doing that and this!" A lesson there for the world right now as we are locked down and isolated.#MyalgicEncephalomyelitis #MECFS #pwme #Fibro #Lupus #Fatigue #POTS #LymeDisease

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My pain level has been absolutely ridiculous lately, and I have to admit I'm wondering what the point of dealing with all of this constantly is anymore.

And I worry that I'm a burden. I thought I knew what my purpose in this life was, but now that I'm officially disabled and unable to work, I'm not sure anymore.

All I know is that I'm completely exhausted.

#ChronicPain #ChronicIllness #Fibromyalgia #SmallFiberNeuropathy #costochronditis #Migraine #Hypermobility #HEDS #ClusterHeadaches #Dysautonomia #pwme #MyalgicEncephalomyelitis #Fatigue #cognitiveproblems

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Does this count towards my vitamin D?

I wasn’t up for going outside today but I found a sunny spot on the bathroom floor. Does this count as sun exposure?

My life has fallen so far so fast. 😢 #MECFS #MillionsMissing #chroniclife #pwCFS #pwme #CFS


Three things I'm grateful for...

1) My #truefriends ; who do everything they can to #understand what I'm faced with and continue to be #Accepting and #supportive .

2) Having my own #home , where I #feelsafe ; it's warm, calm and #comfortable , I can receive my daily #HomeCare with confidence, and live in the catchment area for an awesome #carecompany . All the standard services are reliable, there's decent internet here and my abusers have nooo idea where I am!

3) That I'm still able to be #creative from time to time; even with #multiplechronicillnesses that leave me mostly #housebound #Disabled , it gives me something to look forward to, knowing that as long as I continue to listen to my body, I can do what I enjoy most when I'm able to.

#52SmallThings #3thingsimgratefulfor #myalgicencephalopathy #ME #pwme #HEDS #restlesslimbsyndrome #Migraines #Fibromyalgia #FibroFog #BrainFog #Tinnitus #ehlersdanlossyndromev3 #POTS #eds3 #CPTSD #PTSD #MillionsMissing #Potsie #Zebra #Spoonie #theunchargables #InvisibleIllness #invisibledisabilities #thedruidessofmidian #thespooniedruidess #disabledmodel #creativemodel #altmodel #spooniemodel #DomesticAbuseSurvivor #rapesurvivor #domesticviolencesurvivor #escapedtoxicfamily


#MightyPoets #InvisibleIllness

super powers!

When picking your super power,
Invisible is what we choose,
Imaginging being a secret prowler,
Is something to amuse.

But having that ability living inside,
No one knowing but you!
Your spidy senses mutliplied,
As the many symptoms accrue.

Excerise becomes your Kryptonite
As it drains you of your energy,
You try to continue with all your might,
But all your left with is lethargy.

Your mask hides the real life you,
So then no one knows the truth,
You carry the burden alone its true,
As there is no definitive proof.

By PinkyEmily - Living With Spoons 2018 #pwme #Fibromyalgia #MightyPoets #MySymptoms #CFS


#MightyPoets my daily lie!

Im fine!

Do you really want to know?
Or do you ask to be polite?
I can continue with my show,
And say im alright!

I can fake a laugh and a smile,
And I can put you at your ease,
Make you not worry with cunning guile,
Be flippant about my disease!

But to say i’m fine, its just a lie,
Its the one I say the most!
I wish I could honestly reply,
Instead I’ll stay composed. #Fibromyalgia #pwme #ChronicFatigueSyndrome #InvisibleIllness #MightyPoets #Spoonies


#MightyPoets Spoon Theory Explained

The spoon theory

Living with a chronic illness, is like living with spoons.
It’s why I’m better in the morning than I am in the afternoons.
It’s an analogy best used to explain how we feel.
So in order to help you understand. The “spoon theory” I shall reveal.

So to begin, let’s say I start with twelve, and you start with eighty.
Depending if I’m light headed or my body feels weighty.
I will use one by just waking up, and a further one just to stand.
Getting washed and dressed uses more, do you understand?

Now I have a few left but a full day ahead.
I must conserve my spoons before getting back to bed.
So work is limited and my social life too.
I can lend some spoons from tomorrow to help me get through.

But when I’m all out of energy, a crash will come.
I can’t get out of bed and my body weighs a tonne.
I don’t wash or eat, can’t find the words to talk.
Because when I’m all out of spoons, I don’t give a fork!

#SpoonTheory #pwme #MySymptoms

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Unrecognisable me with M.E

Muddled thoughts of fog and malaise.
Diagnoses: Chronic Fatigue Syndrome.
Is this to stay? Its not a phase?
Should I lie down now in the brimstone?

To your bedroom you shall be confined
Good days you will fain to avoid Isolation,
not wanting to be left behind,
Desperatly looking for salvation.

The mirror reflection shows the ageing,
the shoes are flat now, for the slow Walk
I feel the fatigue slowly invading,
Effecting my ability to even talk.

My wardrobe, I miss, that much is true.
No more high heels or the little black dress.
Gone are the up-bras and the stockings too,
I’d love to the energy to try and impress.

So what I thought was me, is no more,
And I miss that, so very selfishly,
Was that all just materialsm before?
I dont recognise this version of Emily!

#pwme #Fibro #CFS #MightyPoets

1 comment

#pwme RSVP

I might be ok to go tomorrow,
Please, please ask me again...
Dont leave without checking first,
I know I’m being such a pain!

I’m sorry I can’t plan ahead,
Please don’t confirm any plans...
Don’t put me under pressure,
I wish I knew in advance!

I know I’m boring now,
I used to be so much fun...
Just because I can’t do much,
Doesn’t mean, I shouldn’t come!

I wish I knew if i’d be ok,
I truly hope I will attend...
But don’t stop asking me,
Don’t stop being my friend!