Being Reliant On The Unreliable

A sentence I’ve repeated many times to various people that sums up my thoughts on tube feeding: how terrifying it is to be totally reliant on something so unreliable. 

Due to gastroparesis, I am completely dependent on a naso-jejunal feeding tube. This has been the case since August last year. All of my nutrition medication and hydration go through this flimsy little tube that likes to kink what feels like every five minutes. The longest a tube lasted for me was a month and a half, the shortest was when it flushed in endoscopy but by the time I got wheeled back to the gastro ward nothing could flush through it. 7 tubes in under 6 months And most of those tubes were in short succession. There was a further 2 occasions where It kinked but the tube was saved at the hospital by repositioning it. 

Through all my health issues this has been the hardest thing mentally of all. The tube can absolutely control my life, being on constant alert for any signs it might be about to stop working due to a kink or block, jumping at the sound of the pump alarm for an occlusion because of all the times that sound is the start of a trip to hospital and it terrifies me. As minor as it may sound it’s the self-confidence issues and missing seeing my whole face. Feed leaks and exhausting medication rounds. Endoscopy after endoscopy when sedation doesn’t even work for you is awful. The uncertainty of making plans but unsure of if you’ll end up in hospital instead because most of the time it really happens with no advance warning. 

These pictures are some tube feeding moments from the last six months. From day one having the pumps on my pole to med rounds and throwing up tubes, PH strips showing it’s flipped into my stomach and hospital trips for replacements. Pretty tape and the giving sets entertaining my cat. And the days where thanks to my tube keeping me alive, and helping my health thanks to properly absorbed nutrition, I can do makeup and have a nice day. 

Being tube-fed is so challenging, it’s scary, it’s unstable and like living on a knife edge in terms of if it will cooperate. But tube feeding is also keeping me alive and that’s something I’m so grateful for this tube for.

Are you aware as I am?

 Today is M.E. awareness day. And I’m angry, because I am far too aware. 

I am aware when I think about everything I have missed out on. 

I am aware when others show a distinct lack of awareness and I am asked “what is ME, is that tiredness?” I am aware when that person is a doctor in charge of my medical care, when they are unaware. 

I am aware when someone tells me how well I look when they visit me in a dimly lit room where I lay in bed. And after, when the PEM hits and my body breaks I am aware. 

I am aware when my family have to watch me suffer and I see their pain at not being able to fix me 

I am aware in my own pain and suffering, as I endure day upon day. 

I am aware when I watch my friends slip away further and further into the depths of ME. 

I am aware when I remember there is no treatment or cure. When I realise that despite that there’s almost no funding for research. 

I am aware as we beg for better. 

I am aware when I twitter storm and I recount the abusive healthcare treatment I have received in the attempt to stop yet more people going through it. 

I am aware when I feel like I haven’t done enough, because as a sick person I can’t. As a sick community we do our best but can’t. We are aware. 

I am aware when as a community we have to try reassure someone that it’ll get better, that it’s worth staying, even when we’re unsure ourselves. 

I am aware when a patient dies, are community cries and mourns. 

And I am aware that I am screaming into a void. I am screaming my awareness and it’s only heard by others also aware. 

I am aware. All too aware. Are you? 

International day of persons with disabilities

 “Oh you’re not disabled, you’re just ill”. That’s one of the reasons sometimes I struggle to use the word. But the reality is I am. 

I think there can be so much misunderstanding and ableism when it comes to people disabled by illness rather than something like paralysis. From those who are well enough to still walk a bit but also need a wheelchair (ambulatory wheelchair users) to those who are so ill we can’t tolerate using a wheelchair. I have an incredible wheelchair that is the best fit it could be for me and I still can’t use it. And there’s nothing that could be done to make the outside world accessible to me. 

I’m ashamed to admit I’m maybe not proudly disabled. Well, I am, but unfortunately I feel the pressure of society's ableist views on disability. 

For so long I couldn’t bring myself to buy a gorgeous print that said disabled and proud  because of other people seeing it. There’s a presumption that being proud to be disabled means I want to be disabled or I want to stay this way. As many people have already shared, being proud to be disabled doesn’t mean we have to want our pain or suffering.

But I am proud of who I am as a disabled person, proud of who I am with my disability. Proud of my responses to ableism. Proud of that I get through each day. Proud that I can share my disabled reality through Instagram. Proud to be a part of this amazing community, and proud of it and its kindness and solidarity. 

Severe M.E. Awareness day: Thunder clashes in my brain

Severe M.E. is truly a living horror (or as many describe it, a living death because of the severity
of suffering it causes). One that truly no one else can imagine. I will say it again, a picture can't show what severe ME is, a video can't, seeing it every day as a family member can't. It truly is impossible to imagine the severity. 

ME is a severe illness at all severities but mild ME didn’t remotely prepare me for how bad it has got at times, nor has that truly made me aware of what its likes for people so much worse than me. So please take the time and listen to peoples words. Please understand the amount of energy and time it takes for people with Severe ME to try and write and educate, and also how many are unable to despite how desperately they want to. 

Severe ME can smother every light of a persons being. It suffocates it and can trap someones personality inside. I am not the girl I was. With lack of energy comes lack of ability to express it. You think of the obvious things, I can't go out, ride horses or play hockey, but I also can't sing along badly to music. I can't spend too much energy laughing. 

ME is a very poorly recognised illness at any level of severity but even more so for those severe. Doctors will see very few severe ME patients in their career, maybe only one and they will often not recognise it. About 25% of ME patients are severe, although that has a huge range in severity itself. 

Severe ME day is on the 8th of August, the birthday of Sophia Miraza who died of ME. It is to raise awareness of those suffering with it and remember the many we’ve lost. 

Here is a poem I've written about Severe ME (which next month I’ll have had for 3 years):

Thunder clashes in my brain, 

There's a storm at sea in me, 

It goes by the name of Severe M.E.

Crash. The first wave hits,

Its the exhaustion,

A word that pales in comparison. 

My bed has become quicksand,

As my limbs move, it seeps over my body, Gripping me and holding me hostage. 

Pain consumes my being,

Every type you can think of somewhere in my body,

It's a hammer, a knife, a deep ache and a throb. 

PEM creeps up to attack from behind,

I dared to do too much,

Now I will suffer an unknown time. 

My head pounds,

Squeezed like a vice,

My brain rattles inside. 

My thoughts float around in endless despair,

Stuck in time,

I’m confused, but all too aware. 

Light pierces my eyes,

Sound echoes around my head,

Scent suffocates me.

I'm trapped in the bars of this cruel disease,

Where restrictions are so tight,

I have so little energy to try to win this fight. 

Drowning underwater,

The gasps for breath,

I long for one where I'm free,

Yet the torrent continues,

Every symptom hits like a wall,

I can't continue anymore,

I ache to fade away,

Shut my eyes,

For a better life, I pray.

The lights go out,

For me, that's a relief at last,

My body can attempt to recover,

As even my nightmares are an escape,

I will walk pain-free,

Monsters lurk but not the one called ME.

Yet I wake up the same,

Do it all over again the next day,

A cycle I can't break out of because,

Thunder clashes in my brain,

There's a storm at sea in me,

It goes by the name of Severe M.E.

M.E. Awareness Day poem 2023

Myalgic Encephalomyelitis, the name they give,
An illness so misunderstood, its hard to live

It turns out invisible,
Means dismissible

The cause unknown,
We are left alone

Symptoms unseen,
My life robbed of all that could’ve been

M.E. the illness i cannot prove,
My limbs are weak, I cannot move

The waves drag me under,
The symptoms hit like thunder

Then the concrete feeling sets in,
My world turns dim

My body broken, my sprit drained
A life half lived, forever restrained

Pain and exhaustion beyond compare,
A struggle to breathe, a gasping for air

I lay in bed for days and weeks,
Not able to find the energy my body seeks,

Weighed down, my head throbs and my eyes burn,
My body aches, my muscles quake, but met with unconcern

In silence and stillness I exist,
Living in a body that always resists

Now trapped inside the four walls of this room,
I have little life, my body consumed.

Days blur into weeks, weeks into years,
A life thats been stolen, a future full of fears.

This is the life of M.E.
A chronic illness thats hard to see

Waiting for someone to lift this heavy veil,
To set me free from my body’s jail

For now I lay here day after day,
Hoping for change, in some way

But funding is missing,
It seems no one is listening.

We fight to get our voices heard,
Not listened to, but not deterred.

You never see,
You ignore M.E.

An audio recording of this poem read by me and photos of M.E. sufferers

I wish

I wish I didn’t spend the day waiting for darkness to fall, 

I wish I didn’t spend the summer waiting for the cool. 

I wish I could have the curtains open and see the sky,
I wish I could watch the birds fly. 

I wish I could let the light in, 
I wish I didn’t need it dim. 

I wish I could see the flowers grow,
I wish I could see the trees that blow.

I wish the sound of singing or the birds brought me joy instead of pain,
I wish ME was not a ball and chain.

I wish laughing too hard still just brought a sore face,
I wish even my emotions, didn’t have to be paced. 

I wish I could watch as the seasons change, 
I wish my life had not been rearranged. 

I wish I could see a friend,
I wish others could comprehend.   

I wish for experiences of my age, 
I wish I was living my teenage stage. 

I wish my life was something other than a fight, 
I wish this illness did not have such spite. 

I wish for new memories on the days I’m full of grief, 
I wish I did not fall victim to this thief. 

Severe ME.

But I’m thankful I can join this community and alliance,
And with that, we have defiance.  

So, 
I wish for a future my future,

I wish for relief for us all.

Severe M.E. - When life doesn't just fade away from around me, I further fade away from it.

There isn’t a picture I can take to show Severe ME or of my worst. And I don’t think what I can say can reflect the truth. These words seem dramatic pale in comparison to reality. I continuously find myself at a loss for words over the horror of Severe ME - knowing full well I am not the worst, yet it still takes me by surprise as it creeps up and smothers me.

It's Severe ME awareness day/week, the 8th of August. Next month I will have been bed bound for two years and reliant on a hoist for ocasional transfers, having to do everything in bed, living behind glasses and curtains. July, after Covid, is the severest I’ve ever been. I can't believe how far I've deteriorated in this year.

To try and describe Severe ME, and the many symptoms that fluctuate would be like my head is underwater, often unable to understand words and things have faded away as life around my body passes by. Delirious due to the exhaustion, too drowsy to be aware yet not able to sleep. A migraine that feels as if my head is being squeezed by a vice and how it brings intense nausea and painful light sensitivity that burns my eyes. It’s the crushing weight of symptoms. When I can hardly think and trying makes me crash. When every breath is a fight that drains my energy. How I cry from how bad the sound of a TV in another room is. The words I’m unable to speak, trapped in my brain and incoherent. The messages I'm unable to send, people's lives I'm unable to follow as my life and world shrinks more.

When life doesn’t just fade away from around me, I further fade away from it. Trapped in this bed and trapped in my own body - fighting to speak and to move, but my body only imprisons more. An internal war that I have to take lying down (literally).

It has been overwhelming and terrifying. How much of a landslide PEM and this illness is as my life snowballs out of control until I've ended near the bottom of the scale. But I know I am nowhere near the worst. I know how much worse it can get. I’m mostly able to share and find comfort with others. 

But please talk about the severely and very severely affected, this illness is a horror show that many are unable to express, and those who aren’t here.

For me M.E. is:

To spend every minute of every day plagued by debilitating symptoms is incomprehensible to most. To be bed bound, unable to shower for months or years, to tolerate the curtains being opened or long conversations. But that’s what it is to have Myalgic Encephalomyelitis particularly on the severe end, and there are many much worse. The term “Mild” ME is a trick given it’s a huge loss of functioning, still unimaginable to most. ME is a severe illness. 

I can’t pick a photo that can truly sum up ME and that’s because ME isn’t just one photo, it’s every moment of every day. It’s all these symptoms and so much more. ME has a million faces just for me, let alone all the others. And I can’t show you the pain, can’t show you all the symptoms. I don’t have photos of my worst moments, those moments I am unable to take a photo, unable to think, talk or open my eyes. Fighting to stay conscious as I’m trapped in a body that won’t co-operate and starts to shut down.

These descriptions may seem dramatic but they aren’t, and the reality is that words like ‘pain’ ‘fatigue’ just aren’t enough to convey the regality, this is the best I can try to describe them. Fatigue is not simply tiredness and my perception of pain has changed so much. I debated the order but I can’t rank them in order of detrimental effect. They all coexist, the symptoms hit all at once, in PEM or on a general day, there’s never just one, there’s always multiple and I’m suffocating under this pile of symptoms as it consumes me, desperately wanting to break free of it, but I can’t. Alive but not living. 

ME is debilitating beyond imagination, like being imprisoned by your body. And it is scorned and ignored. Our fight is silent since it’s often hidden, and we remain the #millionsmissing so today on #meawarenessday (and on this account in general) we share in the hopes someone may finally listen. On here most are aware of what ME is, I hope if you weren’t you have learnt something today. For those feeling heavy from the content shared, take care of yourself, and everyone. 

If you have ME you are not alone, I’m here with anyone wanting my support 💙