Lily Joseph

@lily-joseph | contributor
Born and bred in East London, Lily trained as a counsellor (specialising in child trauma) before illness forced her to give up her dream job. She now writes about the (sometimes) humorous side of living life with multiple chronic conditions. http://moresleeppleaseblog.wordpress.com
Community Voices

Living with constant fear/ (Allergies)

Living in constant fear is exhausting. I'm scared to eat, scared to drink, scared to try on new clothing without washing them a gazillion times. Sometimes there are no known triggers and that's the scariest one of all, when you don't know the cause.

It's become a waiting game. Waiting to see how far the rash will spread or if the swelling will go down. Waiting for that feeling of my throat closing up or my tongue swelling enough to suffocate me. Every meal set before me, every drink I sip, has my heart racing with the fear of "will this be the thing that sets it off?"
I finish my meal and then I wait. Finish my drink, then wait. Slip on that new dress and wait.

And it's not just food. I am literally allergic to the environment in which I exist in. Trees, grass, flowers, dust, salt water etc, even the sun. There is no escape.
Nights are spent in tears and the days, just wishing it would all stop.
I'm done. I've had enough. I want to be adventurous with food again and to stop thinking that everything that I eat will kill me. I want to not have a panic attack because my skin is itching or when a spot suddenly appears from nowhere.

I want to feel normal again.
#Allergies

Community Voices

My Introduction To Fibromyalgia.

The most scary aspect of fibro was the not knowing. That first appointment with rheumatology, brought nothing but confusion and more questions that went answered, plus many a bad though about my consultant. Many, many many bad thoughts and not the good bad thoughts either. This was a man who acted as though he had transcended to a higher level above us mere mortals, above God even and was therefore, above reproach.

First, he started by checking my tender points...and that was it. Rubbing my sore body parts, which seemed to have been pummelled by a sledgehammer, I asked the anointed one what was wrong with me. He simply grabbed a leaflet from a draw, threw it across the desk and said, "you have Fibromyalgia. Go home and look it up." And that was that. My first introduction to Fibro, a word I couldn't even say, let alone spell in order to Google it.

There wasn't that much data about Fibro when I was initially diagnosed and what information there was, was contradictory, misleading and bewildering. And that was even scarier. Here I was with a diagnosis and I still don't know what it was that I had. Neither family nor friends took me seriously because not only did I look okay, but no-one had ever heard of such a condition.

Four years of being "normal" went by and then one day, I suffered from such violent convulsions that years later, my back still hasn't unclenched from the last spasm. Now I had to rely on a walking stick and still people thought that I was faking it because I looked okay. Worst were the doctors who believed that it was all in my head and worse still, the consultants at the hospital who refused to note it down in my medical records.

Long story short and boy, is this a long story, I decided to become my own expert when it comes to Fibromyalgia. I challenged the naysayers, which includes my doctors and consultants and I insist that I am not treated like a basket case, which always makes for an interesting medical appointment.

#Fibromyalgia

7 people are talking about this
Community Voices

My Introduction To Fibromyalgia.

The most scary aspect of fibro was the not knowing. That first appointment with rheumatology, brought nothing but confusion and more questions that went answered, plus many a bad though about my consultant. Many, many many bad thoughts and not the good bad thoughts either. This was a man who acted as though he had transcended to a higher level above us mere mortals, above God even and was therefore, above reproach.

First, he started by checking my tender points...and that was it. Rubbing my sore body parts, which seemed to have been pummelled by a sledgehammer, I asked the anointed one what was wrong with me. He simply grabbed a leaflet from a draw, threw it across the desk and said, "you have Fibromyalgia. Go home and look it up." And that was that. My first introduction to Fibro, a word I couldn't even say, let alone spell in order to Google it.

There wasn't that much data about Fibro when I was initially diagnosed and what information there was, was contradictory, misleading and bewildering. And that was even scarier. Here I was with a diagnosis and I still don't know what it was that I had. Neither family nor friends took me seriously because not only did I look okay, but no-one had ever heard of such a condition.

Four years of being "normal" went by and then one day, I suffered from such violent convulsions that years later, my back still hasn't unclenched from the last spasm. Now I had to rely on a walking stick and still people thought that I was faking it because I looked okay. Worst were the doctors who believed that it was all in my head and worse still, the consultants at the hospital who refused to note it down in my medical records.

Long story short and boy, is this a long story, I decided to become my own expert when it comes to Fibromyalgia. I challenged the naysayers, which includes my doctors and consultants and I insist that I am not treated like a basket case, which always makes for an interesting medical appointment.

#Fibromyalgia

7 people are talking about this
Community Voices

My Introduction To Fibromyalgia.

The most scary aspect of fibro was the not knowing. That first appointment with rheumatology, brought nothing but confusion and more questions that went answered, plus many a bad though about my consultant. Many, many many bad thoughts and not the good bad thoughts either. This was a man who acted as though he had transcended to a higher level above us mere mortals, above God even and was therefore, above reproach.

First, he started by checking my tender points...and that was it. Rubbing my sore body parts, which seemed to have been pummelled by a sledgehammer, I asked the anointed one what was wrong with me. He simply grabbed a leaflet from a draw, threw it across the desk and said, "you have Fibromyalgia. Go home and look it up." And that was that. My first introduction to Fibro, a word I couldn't even say, let alone spell in order to Google it.

There wasn't that much data about Fibro when I was initially diagnosed and what information there was, was contradictory, misleading and bewildering. And that was even scarier. Here I was with a diagnosis and I still don't know what it was that I had. Neither family nor friends took me seriously because not only did I look okay, but no-one had ever heard of such a condition.

Four years of being "normal" went by and then one day, I suffered from such violent convulsions that years later, my back still hasn't unclenched from the last spasm. Now I had to rely on a walking stick and still people thought that I was faking it because I looked okay. Worst were the doctors who believed that it was all in my head and worse still, the consultants at the hospital who refused to note it down in my medical records.

Long story short and boy, is this a long story, I decided to become my own expert when it comes to Fibromyalgia. I challenged the naysayers, which includes my doctors and consultants and I insist that I am not treated like a basket case, which always makes for an interesting medical appointment.

#Fibromyalgia

7 people are talking about this
Community Voices

My Introduction To Fibromyalgia.

The most scary aspect of fibro was the not knowing. That first appointment with rheumatology, brought nothing but confusion and more questions that went answered, plus many a bad though about my consultant. Many, many many bad thoughts and not the good bad thoughts either. This was a man who acted as though he had transcended to a higher level above us mere mortals, above God even and was therefore, above reproach.

First, he started by checking my tender points...and that was it. Rubbing my sore body parts, which seemed to have been pummelled by a sledgehammer, I asked the anointed one what was wrong with me. He simply grabbed a leaflet from a draw, threw it across the desk and said, "you have Fibromyalgia. Go home and look it up." And that was that. My first introduction to Fibro, a word I couldn't even say, let alone spell in order to Google it.

There wasn't that much data about Fibro when I was initially diagnosed and what information there was, was contradictory, misleading and bewildering. And that was even scarier. Here I was with a diagnosis and I still don't know what it was that I had. Neither family nor friends took me seriously because not only did I look okay, but no-one had ever heard of such a condition.

Four years of being "normal" went by and then one day, I suffered from such violent convulsions that years later, my back still hasn't unclenched from the last spasm. Now I had to rely on a walking stick and still people thought that I was faking it because I looked okay. Worst were the doctors who believed that it was all in my head and worse still, the consultants at the hospital who refused to note it down in my medical records.

Long story short and boy, is this a long story, I decided to become my own expert when it comes to Fibromyalgia. I challenged the naysayers, which includes my doctors and consultants and I insist that I am not treated like a basket case, which always makes for an interesting medical appointment.

#Fibromyalgia

7 people are talking about this
Community Voices

Putting On A Mask.

I've never been good at asking for help, that's why I tend to hide my misery behind a veil. Why infect others with my melancholia? Aren't I burdensome enough? That's what my brain thinks during those dark days.
I'm a professional when it comes to putting on a mask of contentment and I can paint on a smile as good as the next chronically ill person. Ask me how I am and I'll tell you "I'm fine", even though minutes before, I had been ugly crying like my world had ended.

I can weep tears that would put Niagara Falls to shame but the minute I hear the footsteps of my Womb-Fruit, I can halt those tears in their tracks because as a parent, aren't I supposed to be the strong one? The glue that holds our lives together? Why should my unhappiness cloud his day?

So I creep into my fortress of solitude (bathroom) and silently cry my heart out. Only then can I emerge and carry on the facade that all his right with the world. #MentalHealth #ChronicIllness

2 people are talking about this
Community Voices

Putting On A Mask.

I've never been good at asking for help, that's why I tend to hide my misery behind a veil. Why infect others with my melancholia? Aren't I burdensome enough? That's what my brain thinks during those dark days.
I'm a professional when it comes to putting on a mask of contentment and I can paint on a smile as good as the next chronically ill person. Ask me how I am and I'll tell you "I'm fine", even though minutes before, I had been ugly crying like my world had ended.

I can weep tears that would put Niagara Falls to shame but the minute I hear the footsteps of my Womb-Fruit, I can halt those tears in their tracks because as a parent, aren't I supposed to be the strong one? The glue that holds our lives together? Why should my unhappiness cloud his day?

So I creep into my fortress of solitude (bathroom) and silently cry my heart out. Only then can I emerge and carry on the facade that all his right with the world. #MentalHealth #ChronicIllness

2 people are talking about this
Community Voices

My "Normal" Is Not Your Normal.

It's ironic that a lot of people who also suffer through chronic illnesses, are more guilty of not accepting that there are variations on the theme of human. Just because they can run a thousand miles with anchors tied to both ankles and a 300 pound human strapped to their back, whilst also pulling behind them a fork lift truck with their teeth, then we should all be able to do the same. It's galling that differences aren't taken into account and that those variations count for nothing. Even within the scope of "normal," there are variations, so I shouldn't be pushed aside because my normal is not the same as someone else's.
#CheckInWithMe #ChronicIllness #Whatisnormal

22 people are talking about this
Community Voices

My "Normal" Is Not Your Normal.

It's ironic that a lot of people who also suffer through chronic illnesses, are more guilty of not accepting that there are variations on the theme of human. Just because they can run a thousand miles with anchors tied to both ankles and a 300 pound human strapped to their back, whilst also pulling behind them a fork lift truck with their teeth, then we should all be able to do the same. It's galling that differences aren't taken into account and that those variations count for nothing. Even within the scope of "normal," there are variations, so I shouldn't be pushed aside because my normal is not the same as someone else's.
#CheckInWithMe #ChronicIllness #Whatisnormal

22 people are talking about this