disability, mental health, personal, Uncategorized

Invisible Disabilities Week: My Chronic Life and an introduction to Spoonie Saturdays

THIS is what Invisibly Disabled looks like*:

Spoiler alert if you hadn’t realised… it’s me.

This is me on some days, one would argue like an able bodied person: img_0177

And on others, here I am:

I have chosen to share this picture as on a typical day with mobility aids, it is a stick I use. I have in the past used crutches, a chair too, and alternate. I always wear supports and I am always supported by a high dosage of painkillers, too.

I have Ehlers-Danlos Syndrome, Myalgic Encephalomyelitis, and fibromyalgia. Due to chronic illness, I also suffer from many other illnesses with my heart, lungs, gastrointestinal system and a lot more is under exploration. Chronically, but less seriously (for myself), I suffer from debilitating chronic migraines and asthma. Physically, the list of problems seems unending and that upsets me. My family have a ‘not again’ mind when I end up in hospital, not wanting to believe it’s true, but do I want to be there? Certainly not.

My first experiences with chronic illnesses were asthma and chronic migraines; the latter appearing at age 8, and asthma… from birth. As a little girl, I remember admissions to hospital for asthma related issues, and around the age of 13-15 it worsened. My friends would joke ‘not another asthma attack’ and upon seeing an ambulance pulling into school had a… uh oh… it’s Lauren… mind about them.

Regardless, these… I never really saw as chronic illnesses, especially when my best friend was discovered to be chronically ill.

I felt bad calling my migraines ‘chronic’ but I should have never been ashamed.

Anyway, these, I soon discovered, were the least of my worries

 

ME

Despite the worst flare up coming later, my first encounter with ME was age 15. I didn’t know what my problem was; always fatigued, regardless of sleep, in agony all the time, dizziness, sensory issues and being overly in a state of flu. I remember joking about having been ill for a year and being told ‘you can’t have a cold for that long’. It caused disturbances to my day and was debilitating. It made me physically more inactive, but I persisted. I could get through it. Then, it became more tolerable.

Symptoms recurred and I had small flare ups, but it was very controlled. That is, until late 2016. Then, I could feel myself slipping. Mentally. Physically. I was in a lot of pain, constantly, and when EDS struck at me, my ME decided to flare up. It was not long after this time of the year that I began to struggle to even move, never mind walk, I couldn’t put a sentence together from brain fog, and sensory issues caused doing anything and feeling anything… impossible. I couldn’t go to school. I couldn’t go out. I could barely do anything. The tiniest sign of a cold and I was gone. It’s hard to explain all the symptoms, but it debilitated me to no end and I was constantly scared.

ME constantly makes me fatigued. That is the basis of it, but there is so much more. I can complain and hear ‘yeah, I’m tired too’ but it’s not about tiredness. Fatigue is different. I physically feel as if everything has been taken out of me, and am in immense pain constantly so I’ll either be on the floor unable to move or feeling like I should be and putting on a brave face.

Fibromyalgia

Ah, fibro, fibro, fibro. This began when my ME flared up last year. It was confusing.

Fibro means I’m constantly in immense pain. I also am hyper-sensitive to it. Some days, you can touch me lightly and it could be the most painful thing in the world. I can carry a shopping bag and bruise easily.

Fibro is also fatigue and brain fog, and so much more.

Fibro is waking up one morning and having super bad ‘fibro-flu’; Just imagine how you feel when you’ve got the flu. It’s like that, but with huge pain sensitivity, so you pretty much feel on the verge of death. Some days, fibro flu can make you bed bound, and others, you can deal with adult responsibilities and still feel like death, but all days, you are in constant pain and likely feel on death’s door.

It’s pretty suckish to never feel healthy, especially at 18 years old.

Ehlers-Danlos Syndrome

There are actually many subtypes of EDS, so before I begin, I’ll clarify; I have hEDS (type 3).

Though I have always had EDS, I always classed myself as ‘flexible’ and was sometimes classed as ‘hypermobile’, until in 2014 I recieved a diagnosis. After many unknown issues with my joints and those being totally re-offending (eg- the same thing would happen to my ankle time and time again), it was not until I displaced my hip age 15 it was classed as a real medical condition for me. I remember the paramedics on scene (I was performing at the Regent Street Motor Show with West End Kids when it happened, and couldn’t leave the stage) making comments about it being ‘impossible’ due to my age, even though it was evident… my hip was not in the right place. My hip is what causes me the most pain and is prone to displacement. It can displace but simply cause me pain in some cases, if my ligaments hold, or put me out of walking for months in other cases. I also have a frequently dislocating knee which does so on a daily basis at the moment, and general chronic joint pain which I have to be careful about so I don’t dislocate anything.

EDS has many, many symptoms and due to chronic pain and the never ending list of other medical problems I have, they all totally blur together but if you want to know more this is a good site to check out!

I also suffer from multiple mental health issues which will be featured later in the series, but today I wanted to get my first post out on these physical invisble illnesses.

So, What is spoonie saturdays?

Spoonie saturdays is a medical based series that’ll be featuring on this blog on… you guessed it, a saturday! It will be some of my personal experiences, some awareness, some post regarding charities, full of guest writers and just a great way to speak out about issues with physical and mental health. It’s a safe space and a space for you to get your word out. It will not have a strict routine as, though you guys said twice a month would be great, chronic illness is unpredictable… so there’s a little metaphor in that (though I will try for at least twice a month).

If you want to get involved, drop me an email at:

storiescanmakeusfly@gmail.com

or DM me on twitter.

There are no deadlines and no pressure if you want to get involved, just send me your idea or what you want posted when you can!

I hope you enjoy this new series or it is in some way educational and eye opening!

Love always,

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2 thoughts on “Invisible Disabilities Week: My Chronic Life and an introduction to Spoonie Saturdays”

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