Famous Fibro Fighters!

Hello fellow Spoonies, 

It's May, and that only means one thing! It's Fibromyalgia Awareness Month! During this month, I will be writing lots of Blog Posts to try and raise awareness. 

Today's blog post is about famous people who live with Fibromyalgia. This post aims to surprise you all with how many people have Fibromyalgia - and it really shows that you just can't tell! Fibromyalgia really is the Invisible Illness. 

Morgan Freeman - Actor, Producer & Narrator

Kyle Richards - Real Housewives of Beverly Hills, Socialite & Actress

Sinead O'Connor - Singer, Songwriter

Jo Guest - Glamour Model

Rosie Hamlin - Rosie and The Originals, Singer & Songwriter

A.J. Langer - Actress

Florence Nightingale - Founder of Modern Nursing

Mary McDonough - Actress

Janeane Garofolo - Actress, Writer & Stand Up Comedian 

Michael James Hastings - Actor

Lady Gaga - Singer & Songwriter 

How many of these did you know? 

Thank you for reading.

As always, any comments and suggestions are greatly appreciated.

Love and Spoons,

Allie x x x

Disclaimer: I do not own any of these photos.

Other Pain caused by Chronic Pain

Hello fellow Spoonies, 

Today's blog post is about the things that hurt, other than the physical body pain, with a Chronic Pain Condition. This post aims to show the comments and judgements that every individual with Chronic Illness has to put up with. 

Awareness -There is a distinct lack of awareness of the Chronic Illnesses, which can often lead to ignorance and an absence of support.

• The lack of understanding from other people
• The lack of education and awareness of the condition
• The dismissal of the condition, simply because no one has heard of it
• The fact that nobody else can see the illness at all, as it is completely invisible - this usually causes disbelief
• The absence of any publicity of any Chronic Illness, which in turn causes an `insufficient understanding
• The insufficient funding for people who have Chronic Illness so that there is a massive shortage of support for us
• The insufficient amount of disabled friendly clubs, bars and concerts

Validation – Due to the lack of understanding, many people with Chronic Pain and Illness do not feel that their pain is validated.

• The constant comparison between Cancer and Chronic Illness
• The feeling that our pain will never be validated unless it caused by something (such as a break) or is a known condition (such as arthritis)
• The terror of trying to explain to somebody, be it a boss, colleague, friend, family member or potential love interest how much the pain affects your everyday life, and why you can't do certain things they have asked you to do

Relationships – Chronic Illnesses affect all our relationships, be it with family members, friends, colleagues or romantic partners.

• The impact it has on our families as all family events must be catered to suit us
• The things that friends and family have to miss out on because of us
• The feeling of always being a burden to people with spend time with, especially our family
• The pain of making the decision to distance ourselves from people so that we don't become that burden
• The disappointed messages and looks when you have to cancel plans or call in sick at work for the 10th time
• The loss of friends because we have to cancel so often as our pain does not fit with our plans
• The difficulty finding a partner because they also have to take the role as a carer
• The look in your friend's and family's eyes when they feel completely helpless

Comments – As a result of the lack of awareness and education around Chronic Illness, many Spoonies are used to enduring unkind comments and conversations.

• The "at least you don't have cancer" comments, despite Chronic Pain and Illness lasting a lifetime
• The suggestions people make to help us "feel better" including, but not limited to, diet, exercise and losing weight
• The labels put on us, including "benefit scroungers", "lazy workers" and "unreliable"
• The looks we get when we use Disabled Facilities in public, such as bus seats, toilets and car parking spaces
• The comments especially about being unreliable, as it is not us that is unreliable- it is our body
• The nasty looks and comments when you don’t give up your seat for an elderly person on public transport, because we may look so young and healthy, when really, we are struggling to stand ourselves
• The people who say they understand when they've never experienced it before
• The little comments about laziness, lucky to not work or staying in bed all day, which truly hurt because we would do anything to be back at work/study full time

Mental Health – Physical and Mental Health are closely linked, and therefore those with Chronic Illnesses often struggle with Mental Health problems.

• The low self-esteem because we cannot make our bodies look the way we want them to
• The difficulty to let people in and not put on the front
• The uncontrollable bad moods and snappiness when the pain and fatigue is at its worst
• The front that we must put on every single day so that we can go about our day without being judged
• The fear that we will lose many of our fellow Spoonies too early as 1 in 4 people with Chronic Pain commit suicide
• The mental health battle that comes hand in hand with Chronic Pain
• The isolation that stems from not knowing enough people who can relate or understand, and not being able to leave the house on some days

Fatigue – A side effect for most of those who struggle with Chronic Pain is Fatigue.

• The insomnia and sleepless nights
• The mental and physical fatigue
• The constant fatigue because our bodies are so worn out by pain

Medical – To be diagnosed with Chronic Illness, any other condition must be ruled out. This often means that those with Chronic Illness have to spend a lot of time in medical centres.

• The many side effects of pain medication such as weight gain/loss, nausea, migraines, bloating, mood highs/lows
• The lack of cure, and the knowledge that we will have to endure it for the rest of our lives
• The frustration of knowing that there is no cause, there is nothing that shows up on tests/scans and it's just "one of those things" that unlucky people get
• The GP's who tell us that it's "all in your head" because nothing shows up on the scans and tests they have done
• The repetitive scans, blood tests, medication reviews, invasive procedures and appointments
• The Brain Fog that means I forget a lot, even with alarms and reminders
• The poor immune system that means we're constantly getting colds, infections, bugs. If you’ve got it, we're getting it

Limited Young Life – This section is more specific to being young and having a Chronic Illness. It is often said that the teenage years are the best ears of your life, so to have these taken away from you due to illness is a pain many have to deal with.

• The things we miss out on, including nights out, holidays/trips with friends, spontaneity, pulling” all-nighters", education
• The lack of money and career prospects as many of us cannot work or can only work part-time
• The inability to "follow your dreams" as they are hindered by the condition and they usually become unrealistic due to the physical limitations of our bodies
• The lack of choices we have in our life
• The absence of power and control over our own bodies
• The jealously of healthy people who can do all the things we cannot do
• The social media posts of people our age travelling, going out on nights out, going to concerts/festivals that make us feel like we are losing the best years of our life
• The hardly existent sex life because we have to preserve our energy to simple brush out teeth in the morning
• The grief of having a "normal" life taken away from us and replaced with an extremely limited one
• The regrets of not doing more when we were healthy

Thank you for reading.

As always, any comments and suggestions are greatly appreciated.

Love and Spoons,

Allie x x x

Quick Update!

Hello fellow Spoonies, 

Today's blog post is a quick update on my own personal health and hopefully an explanation of why I have been away for a while. 

Thank you to those of you who read my blog, and I apologise for being away for so long.

Over the past 5 months, my health has deteriorated and in turn, I have had to make adjustments to my life; unfortunately, my blog suffered as a result of that. My health worsened due to "Boom and Bust" as I worked too many long hours over a short period of time, and my body could not keep up with my mind. After being signed off work as a High Ropes Instructor for 2 months, I saw a specialist in Pain and Anaesthetics.

It was with this specialist that I finally got a diagnosis that I truly related to: Central Sensitisation Pain Syndrome. This is an umbrella term for conditions such as Fibromyalgia, in which the nerves in the body are over-sensitised and pain is felt throughout the whole body.

To help with this new diagnosis, I have been attending a Chronic Pain Physiotherapy Group, where I learned how to Pace myself properly and how to manage Flare-Ups. Alongside this, I have been resting and exercising lightly in order to get my body back to a place where I am able to participate in normal activities again.

As I continue to learn about Chronic Pain Conditions, I intend to blog more as I believe that there is a lack of understanding and awareness of these conditions, and this is something that I am becoming more and more passionate about changing!

Please leave any comments or suggestions, they are very much appreciated:)

Love and Spoons, 

Allie x x x

Being Chronically Ill & Ill

Hello fellow Spoonies, 

Today's blog post is about being unwell as well as coping with the Chronic Illness. Being poorly adds an extra challenge to the body when you're already suffering from Chronic Pain and Fatigue. This post aims to explain why those who are Chronically Ill find it harder to fight normal illnesses. 

Those who have Chronic Illnesses often have a weaker immune system because their body is constantly trying to fight something; this means that when they get sick with a virus, bug or infection, their bodies find it harder to fight it off and they do not have as much energy to fight it. It can also make the Chronic Pain and Fatigue symptoms worse.

Currently, I have a cold and to anyone else, this may not seem like a big deal. But to me, it means my energy is really low and my transient pain throughout my whole body is a lot worse. My body is tired of fighting my pain and a cold, so I have very little energy and my Chronic Abdominal Pain is worse because I don't have as much energy to fight it as usual. A few Paracetamol cannot help to ease the symptoms as my body has become immune to these painkillers.

To explain why a cold, infection, virus or other illness affects Spoonies more than those who do not suffer from Chronic Illness, I like to use this metaphor...

I like to think my body has a little army of men who are there to carry on with normal bodily functions and fight pain and illness. People without Chronic Pain or Illness have a larger army than those who do. So my army is split into two groups: normal bodily functions and movement, and fighting pain and illness. The army that fights pain and illness focus on keeping my pain levels down to a minimum on a normal day, however when I become ill with a cold or bug, these men have to split up so that some can go and look after the cold symptoms and pain and some stay with the usual chronic pains. This means that there is less man power to look after the chronic pains, and therefore that pain is worse, and there aren't as many men as there should be helping to fight the cold so it takes longer for them to get rid of it. On really bad pain days, or days when I am ill, sometimes men from the normal bodily functions army come to help fight the pain and illness, but in turn this means there are less men helping with the bodily functions and I cannot do things as well as I could.
This metaphor also helps to explain why I get so fatigued during bad pain days or when I am ill, because the army has to work a lot harder to keep my pain down and this tires them out.

For those who do not suffer from Chronic Illness, but may know someone who does, please understand that our pain and fatigue can become so much worse when we are ill, and please do not think we are over reacting when we say we can't go out or do certain things because we have a cold.
We are always trying our best.

And to my fellow fighters: I understand.

Please leave any comments or suggestions, they are very much appreciated:)

Love and Spoons, 

Allie x x x

Happy Vs Healthy

Hello fellow Spoonies,

Today's blog post is about the difference between being happy and being healthy. Chronically Ill people are still able to be happy despite being unhealthy.

As someone with a Chronic Illness, I always find it hard to explain to people that I am ill constantly, I am always in pain and I am never in good health. So when people see me enjoying myself, smiling and being happy, I'm always faced with the question "are you feeling better?" Or even worse "I'm glad you're feeling better."

No.

As I have struggled daily with my health for the past couple of years, I have had to learn to accept that I will never be healthy, but I still have to carry on with my life like everybody else. I have many different coping methods, and a lot of them include doing things that make me happy such as:
Spending time with friends and family,
Singing along to music in the car,
Enjoying a cocktail night,
Going out to a club or bar,
Going on trips to theme parks, the theatre or to do outdoor activities.

All of these things make me happy, and admittedly, some of them are at the expense of my health. However, despite me having fun and enjoying myself, I am still in pain and I am still not "cured" or "better". Enjoying myself and doing things I like can be used as distraction and therefore my pain is not at the forefront of my mind.

Sometimes Chronically Ill people have to make the decision between being either happy OR healthy, because doing things that make us happy can cause the pain and exhaustion to get worse, but it can be worth it. Other times, we have to turn down the opportunity to do things that make us happy because we have to put our health first. This can be a very hard decision at times, and I don't always make the right decision. But that is something I will learn over time.

For those who do not suffer from Chronic Illness, please understand that Spoonies can be both Happy and Unhealthy and sometimes we have to choose between Happy or Healthy.

As always, comments and suggestions are appreciated :)

Love and Spoons,

Allie x x x

Constant Pain

Hello fellow Spoonies,

This blog post attempts to explain the Constant Pain myself and other Spoonies go through and how it affects our every day lives. 

One of my earliest memories I have is me sat on my mum’s lap in the hospital waiting to be seen by a specialist for my “poorly tummy ache”. Before I had even reached my first birthday, I had seen gastroenterologists due to stomach and bowel problems; I was in a lot of pain and by the time I was 5, I was on a prescribed medication to help with this. So, when I tell you that my Chronic Abdominal Pain is constant and incurable, believe me -I’ve been suffering since before I could even remember.

After years of tests, scans, fad diets, exercise routines and appointments with specialist doctors, I was finally diagnosed with Chronic Abdominal Pain at age 14. Chronic Pain by definition, is pain that has lasted more than 12 weeks; however, it often persists for months or years. For me, it is a lifetime.

Having to cope with constant pain is a complex skill that only those who have will understand. As a Spoonie, I do things in levels of pain that other people wouldn’t even dream of getting out of bed in. Everything is a challenge, from getting out of bed and having a shower to walking around town or even writing this blog post. Although my current diagnosis is Chronic Abdominal Pain, that does not mean that only my abdomen hurts. My whole body is in a constant state of agony, with my abdomen being even worse than the rest. Every day I feel pain from my toes, up my legs, to my hips and lower back, all through my torso and neck and then down my shoulders, arms and fingers.

Constant pain affects people in many ways: emotionally, physically, socially and even economically. Chronic Pain can affect me emotionally, because on the bad days my mind runs wild with reasons why I may deserve the pain I have and how weak I am for not coping with it like I should be. Physically, there are days when I am unable to move or walk at all, and I spend a lot of time in the bath or doubled over in bed trying my hardest to relax the pain just even a little bit. The pain also stops me from going out and spending time with friends and family because I am not able to cope with leaving the house or travelling far. I am unable to work a normal job due to the pain holding me back, and the money that I do earn goes straight back out to prescriptions, alternative therapies and private doctors.

Everyone who suffers from Chronic Pain can relate to this in different ways, but we learn that we must accept that we will be in pain constantly, and to be aware of our limits in order to not push further than we can go. This is a constant struggle and something that people have been attempting to master for years, but like someone with Diabetes avoids eating foods high in sugar, Spoonies make accommodations in their life to avoid flare ups.

As always, I value any comments or suggestions :)

Love and Spoons,

Allie x x x

Introducing ChronicAllie

Hello fellow Spoonies,

Welcome to ChronicAllie! Thank you for taking the time to look at this blog. This is my first one so bear with me!

My name is Allie, I'm 19 years old and I currently live with the diagnosis of Chronic Pain Syndrome and Chronic Fatigue Syndrome.

It has recently passed my 19th Birthday, and therefore my 5 year diagnosis anniversary, so to mark this milestone, I have decided to write a blog about my journey with Chronic Illness. In my 19th year, I have decided that my aim is to make people more aware of Chronic Illness and the effect it has on the lives of sufferers and their friends and family. 

My Chronic Illnesses have affected many aspects of my life, but most recently it has affected my education. Unfortunately, I had to drop out of university due to the lack of understanding from the lecturers and staff, and my biggest flare up yet (more on this soon). So at this point, I am currently working as a High Ropes Instructor, and spending a lot of time reading blogs about other people's personal experiences with Chronic Illness.

These blogs have helped me to cope with flare ups and to feel less isolated, and I hope to bring the same comfort to others with a blog of my own. I also aim to bring awareness to Chronic Illness and the daily struggles us Spoonies deal with. If I only make one person more aware of Chronic Illness, that would be an amazing achievement!

I hope you all enjoy reading my blog and I would value and comments or suggestions :)

Love and Spoons,
Allie x x x