Category: Spoonie Stories

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Spoonie Story: Ally

spoonie story ally

My name is Ally, I am 38 years old and I am a single parent to two children, aged 11 & 18. I have MS and degenerative disc disease, which has changed my life.

spoonie story ally

Since the age of 16, I have worked full time and never been without a job. Around 16 years ago, I had a severe headache and lost the sight in both of my eyes. I spent months in hospital and was eventually treated with intravenous steroids. After the first course, my eyesight started to improve, so they gave me a second lot. After 6 months, my sight returned and I carried on as normal. 12 months later, it happened again but not so severe. This time, the steroids made my liver and kidneys start to fail and I spent Christmas in bed.

Fast forward to 2012, when I started to feel unwell, then was rushed into hospital after collapsing. For three months, I couldn’t move my legs. I had physio and used a wheelchair. I then had numerous hospital visits and emergency admissions. My symptoms at times included loss of movement, loss of speech, loss of vision, incontinence and inability to swallow. My neurologist suggested it may be a psychological issue rather than physical. I was devastated. Then 12 months ago I was diagnosed with MS.

I no longer work full time, my fatigue dictates that. I get told all the time I look tired and I need a rest… If only it were that simple. I feel unreliable as a friend and let people down often after making arrangements. I struggle with my confidence when in symptomatic and hide away. I feel inadequate as a parent, as my kids look after me often. But… Im a fighter!

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Spoonie Story: Ami

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My name is Amorie, Ami for short, I’m 24 and from Cape Town, South Africa.

As of the start of 2013 I was experiencing very bad pains in my hands as well as severe back pain from around 2008. I have always lived with headaches and what we thought was growing pains, but now I know better.

ami1spoonie story: ami

In February of 2014 I was diagnosed with Rheumatoid Arthritis and was put on Methotrexate and later on I was put on Lyrica that year.. In 2015 I was diagnosed with Fibromyalgia on top of this and here I am.

I started studying my BSc in Medical Science at the University of Pretoria in 2013 to eventually do my Honours in Forensic Anthropology!

However, since I got so ill I had to lengthen my studies so that I have less subjects each semester. I have also developed issues with my hips so mostly I walk on campus with my crutches and I am allowed parking on campus as well!

Mostly I am just a young student trying to make a name for myself, while trying tonfight this awful battle. This year I am hoping to bring my pain levels down to a manageable amount so that I can do better at my studies..

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I have the cutest kitten on the planet and her name is Luna! She’s my sweet angel!

I am also a volunteer for The Reach for a Dream foundation, which is like the South African version of The Make a Wish foundation! I love bringing smiles and love into the lives of sick children and would do anything to ensure other people’s happiness, even if it costs me my own!

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Spoonie Story: Nikki

spoonie story nikki

My name is Nikki, since I was a little girl I have been sick, it mostly started when I was 4 years old. It took Doctors 7 years to figure out why I was always sick and hurting, especially if I had been exposed to the sun for too long.

A week after my 11th birthday I was diagnosed with Systemic Lupus, fibromyalgia, DJD and few others.

I have always been a positive, easy going person, even throughout all my hospital stays, fatigue and severe pain. Strength and laughter have gotten me through a lot. I have an incredible family that has been through it all with me.

I will be 32 years old in April and I am thankful everyday. My husband and sons are amazing all the time, even more so when I cannot walk or move due to the pain from these awful diseases. I stay educated when it comes to this horrible crap! I know my body and though it took me a very long time I listen to it when it says “hey lady enough is enough!” I am very stubborn and have been to hell and back multiple times because of the Lupus, especially.

Since I was a small child I can remember complaining of pains in my hips and legs, but I never let it stop me. I have been walking completely bone on bone with both of my hips since the age of 21 and I have no cartilage in my lower back. My husband has seen me in agony and says he doesn’t know how I get up and walk around like I don’t have a care in the world, happy as a lark not complaining, always smiling. Truth is I have trained myself to withstand my pain (which is never under a level 8) there is simply to much beauty in this life for me to miss it! I am proud of my strength and smile, I proud of those who try and understand as much as they can so I don’t feel so alone. I will walk and walk tall until I can’t anymore, and when that day comes, if it comes I will be wheeling myself around and still thanking God for all the beauty, laughter and love he has given me in my amazing life.

Stay positive, don’t close yourself off from the beauty, talk about what and how you are feeling and stay strong because you are incredible through it all!

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Spoonie story: Faith

Hi I’m Faith! I’m 24 years old and almost five years ago I was diagnosed with a genetic autoimmune disease called celiac.
The doctors made my disease seem easy. “Go gluten free you’ll be fine.” So I did. Closing down my home baking business and forgetting any dreams I had of culinary school.
I kept expecting to feel better. But as the months started to go by it seemed to get worse. Muscle pains, joint pain, migraines, facial numbness, 89 pound weight loss in three months, and then the hair went this past year.

spoonie story faith
That was a huge blow. Losing my hair felt like losing my identity.


It was the spoon community that helped me find affordable wigs on amazon. Gluten free makeups to help cover the couture bags under my eyes from lack of sleep.


I would get random messages on my Tumblr blog saying “I understand!” “You’re not crazy I’m going through it too!”


I felt very alone in my disease until I found the spoonie communities online.


Yes I have an amazing family, and a gluten intolerant boyfriend. But you can’t always lean on them for support. As one family member put it. “Sometimes we just need a break.” That’s when the spoonie community takes over. I’ve met some amazing friends on here and I hope I continue to.

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Linda’s Letters: Letter #2

linda

WARNING: Explicit content

 

Hey you,

Yes, I mean you. It’s me again. I see you struggling. I see your desperation. You’re at the end of your rope. You don’t know if you want to go on living in this hell. You think no one hears your cries. You think that no one really cares if you live or die.

You are wrong! I hear you! Remember I am you and you are me. I am the 16 year old girl who sits on the lake shore with a gun in hand. I am the mother of 3 who has pills stashed. I am the 30 year old man who thinks about driving his car into on coming traffic. I am the grandmother who thinks about sitting in her garage and letting the car run and just slipping away quietly.

You think I can’t understand the demons that you fight? I was a 7 year old child who was sexually molested for years. Everyday I faced my abuser wondering if it was going to happen again. Everyday I prayed for someone to save me. It never happened. I lived in fear for years. I still live with the shame, guilt, and self hate that burrowed into my soul. The darkness that swallowed the child haunts the adult. I am the teenager who turned to alcohol and drugs to numb the cries of pain that poured from her depths. I was the 16 year old who put a gun to her head. I was the 21 year old who smoked so much pot that I couldn’t remember what day it was. I was the 22 year old who was surrounded by gang gun fire. I was the 23 year old who finally accepted who I was meant to be and came out. I was the 25 year old diagnosed with arthritis and told it would only get worse. I was the 30 year old who was looked down on because I had to walk with a cane. I was the 38 year old whose disease progressed to the point that walking without braces and a walker was no longer possible. I am now the 42 year old who lives in so much pain that each day is a decision if it is worth it to keep going. Our demons may not be exactly the same but I have fallen into the abyss and live with my demons.

Why am I telling you all this? I don’t want you to sit in the abyss alone when I am here too. You don’t have to flail about in the darkness. Take my hand. Together we can be stronger than the demons that haunt us. Just like that night years ago when my friend spent hours talking the gun out of my hand, I want to be there for you. If you can be my light when I fall down the rabbit hole, maybe I can be the voice of reason for you when your demons call.

When your mind and body can take no more and you think the only solution is to end it all…..reach out your hand. I am here! I will never leave. I will always answer your call. I will carry you as long as you need. I will hold you as tight as possible. I will wipe your tears and calm your fears.

Who am I? I am you and you are me! Deep inside, down in the darkest depths is where I reside. I see your demons. I live beside them. All you have to do is reach out your hand and pull me to you. I am your inner fire. I am your inner warrior. I am your heart and soul. I am the very essence of you. I am love.

Love? Yes, love. I am your love of a sunrise. Your love of a child’s laughter. Your love of your friends. The love of your husband, wife, and partner. I am the love you feel for a baby panda. The love of a butterfly. I am love and love can save us.

How can love save us? Each day we choose to go on for a reason. Whether it be for friends, family, our pets, our children, or our pure stubborn cussedness. It is a love of these things that give us the will to fight for another day. It is for the chance to find love in all its forms that we believe in the endless possibilities life holds.

The bottom line is this: You will have days where everything is against you. Your mind is shattered and you body battered. You will fall so far into the abyss that you see no chance of recovery. However, if you just reach out your hand you will find love. A friend’s love, a pet’s love, an uncle’s love, a mother’s love, a fellow spoonie’s love. Love will light your way back from the edge of hell. Love will give you hope. Love will light the spark in you. Love will fight for you when you can’t. Love will give you strength to find your inner warrior. Just remember that the strongest warrior needs a shoulder to lean on sometimes. Find the love that surrounds you and you will find your strength.

From: Me

 

 

Linda’s Letters is a chronological series. You can read Letter number one here if you’ve missed it.

For Linda’s Letter #3 go here.

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Linda’s Letters: Letter #1

linda

Hey you,

Yes, I mean you! I see you struggling, I know your pain. You think no one could ever know what it takes to get you through the day, what it takes for you to even get out of bed. I know your struggle, I know your pain. It’s real. You are not alone.

How do I know? Well, I am you. We are one and the same. I know of the pain that drags you into the deepest recesses of hell and makes you question if life is really worth all this. I am the young man who sits next to you in the doctors office praying this one will help him when so many have ignored his symptoms. I am the mother in the scooter trying to shop with two children in tow. I am the teenager who can’t get the energy to go be with friends because her doctors will not believe her because she’s to young to feel like this. I am the individual who sits in the dark with a gun in hand saying enough. I AM YOU!

How did I see past the mask? I have worn the fake smiles. Laughed and joked when all I really wanted was to curl up and die. I have said “I Am Fine.” more times than I can count. I have pushed myself past my breaking point to be and do what others think I should do. I know all the lines and all the ways to cheat and hide how I really am on the inside.

Daily you wonder if this life is worth all this pain. You wonder if you will ever feel normal again. You wonder if you will ever find someone who will love you with all your issues. You wonder if this is what will kill you. You wonder when the doctors will figure out how to fix you. You wonder if anyone hears your cry for help.

I hear you! I am you! Life right now maybe shit; but it can and will hold beauty again. Someday you will find the one person that gives you hope and love. They will give you a reason to live. They will hear your cries and wipe your tears. They will stand up to the doctors and not let them throw you away as if you were nothing. They will bring unimaginable beauty to each day.

Who is this person and where can you find them? Get up and walk into your bathroom. Stand facing your sink. What do you see? You are who you’ve been looking for this whole time. You are your own saviour! You are a kick ass warrior! You have the strength, heart, compassion, and grit to face anything. You will keep walking forward even as this disease weighs you down. Each day will provide the chance that answers will come.

Why am I talking to you? Well, the answer is simple. Even the strongest warrior needs a shoulder to lean on from time to time. We need other warriors to help us along the way. Some will make you laugh when you need it. Some will kick you in the ass to get you to do the things you know you should. Some will come along and give you hope just when you have none. And yet others will come along and cheer you on in your accomplishments. They will become your family, your tribe.

The bottom line is this: you are not alone. You never have been. We have been here for you the whole time. You see us now because you are us and we are you. You reached out and grasped the warrior in you. Stand tall, stand proud! You are a spoonie warrior!!! You have a never say die flame that burns inside. Yes, you have bad days. Yes, you will scream, cry and shout “Why me?”. In the end you will pick yourself up ,with the help of friends, family, and fellow warriors, dust yourself off and face another battle with courage and a fierce will to live pain free.

Just remember…I know you! You are me. You are one bad ass, never say die, strong, courageous, ass kicking, beautiful mess, spoonie warrior! And I love you!

From: Me.

 

 

Read Linda’s second letter here.