little-misses-lee - Tumblr blog

little-misses-lee · 3 years

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Disabled people’s lives aren’t tragedies. Inspired by Nadina LaSpina.

Art by Liberal Jane

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little-misses-lee · 3 years

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**For interacting with strangers and associates–dynamics with friends and family are much more individualized**

Disability Pride Month 07-31-20: finale

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little-misses-lee · 4 years

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Community.

Having chronic illnesses or disabilities can often lead to loss of friendships, relationships, and isolation. But whilst we may feel alone, we are not. There is an amazing community of people with chronic illness and disability online. Sometimes we are fortunate enough to meet through charity events etc.

This community is the most powerful and supportive place anyone could possibly be. No matter what time of day or night, there is always someone there. Someone who understands your pain, your emotions, the challenges you face. We are not all the same, we have different conditions, different ages, different personalities and come from different walks of life, yet none of that matters when we all need someone. There is always someone there. Despite all the challenges we all face, there is a strength in this community that makes life that tiny bit easier. This community is not only there for support, they raise funds for numerous charities and research projects, they raise awareness, they encourage equality, fight against ableism and discrimination and take to the streets and screens to implore governments to act. And there are people in this community, who despite having never met, hold an important place in my heart and I am so so thankful to have found them. ❤

To the chronic illness and disability community, Thank You.

IMAGE DESCRIPTION: Shows an illustration of four women of different ethnicities with various signs of illness or disability. The first woman hqs a feeding tube, the second woman is on oxygen, the third has a wrist support and a walking cane, and the fourth has no arm below the elbow on one side. They are sitting/laying together in front of a greenish background with purple writing saying 'Disabled people have shown me the power of community.'

Artwork by Insta: @cantgoout_imsick

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little-misses-lee · 4 years

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Hope

I could say that I hope this goes away, these illnesses, the disability. And yes, often I do, I hope I will be able to walk without crutches, I hope I will stop feeling pain on a daily basis.

But really, beyond that, theres the hope for a 'normal' life beyond that. That even if things do not change for me, that a few good people will see past it and will see what I still have to offer the world. That I will be able to have a career, keep working. That I still manage to have the occasional chance to socialise, even just to go for a walk in the forest. I hope that when I get angry I will always be able to go and get in my car and go for a drive.

But to hope for these things, I have to hope that my conditions, my health does not deteriorate any further. I have to hope we find a treatment that works for me.

I put my hope in medical professionals and scientists, often half way around the world.

I put my hope in the chronic illness community around me, who strive to advocate and bring awareness, who strive to live.

I put my hope in people being willing to donate to research for a condition they know nothing about.

And I have to put hope in myself, hope that I am able to better things for myself, someday, in some way.

IMAGE DESCRIPTION: An old tree with branches spreading out in a forest setting.

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little-misses-lee · 4 years

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Adjustments.

When you become chronically ill, you have no choice but to allow and take adjustments in your life. You become a different person, both to yourself and to others. Life in itself is suddenly a completely different game that you don't know how to play and noone is there to teach you. You have to adjust to a new way of living, a new way of feeling, both emotionally and physically, a new way of how people see and respond to you. You have to get used to feeling bitterness, sadness, anger, in a way you didn't feel before and you have to get used to fighting, for everything. Everything changes, from the way you sleep, to your mobility, to your ability to do a job that you love and are good at, just everything. I have had to accept that the anger towards my illness and disability, to how society views it, has made me mess up a lot of things that are really important to me.

It is hard to adjust to people being well meaning or sincere, whilst being ableist or ignorant at the same time. It is hard to adjust to the fact that if you point out peoples ableism or ignorance, it becomes somehow another flaw in your own personality. It is hard to adjust to the fact that you are often completely alone in your battles. You are somehow expected to stay happy, to control your emotions, to not finally snap at the things that hurt you emotionally, when you have forgotton what not being in pain feels like, when you haven't slept for more than an hour for days, when you are on medications that bring about more symptoms and when you are trying to balance your general wellbeing, your family life, your work, your medical appointments and the emotional upheaval of it all. .

IMAGE DESCRIPTION: A black and white photo showing a small section of building above an archway with a sign for the NHS hospital 'The National Hospital for Neurology and Neurosurgery'.

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little-misses-lee · 4 years

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To the Chronic Illness and Disabled community...

Having chronic illnesses or disabilities can often lead to loss of friendships, relationships, and isolation. But whilst we may feel alone, we are not. There is an amazing community of people with chronic illness and disability online. Sometimes we are fortunate enough to meet through charity events etc.

This community is the most powerful and supportive place anyone could possibly be. No matter what time of day or night, there is always someone there. Someone who understands your pain, your emotions, the challenges you face. We are not all the same, we have different conditions, different ages, different personalities and come from different walks of life, yet none of that matters when we all need someone. There is always someone there. Despite all the challenges we all face, there is a strength in this community that makes life that tiny bit easier. This community is not only there for support, they raise funds for numerous charities and research projects, they raise awareness, they encourage equality, fight against ableism and discrimination and take to the streets and screens to implore governments to act. And there are people in this community, who despite having never met, hold an important place in my heart and I am so so thankful to have found them. ❤

To the chronic illness and disability community, Thank You.

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little-misses-lee · 4 years

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I Refuse To Owe Anyone, Anything, Anymore.

I share a lot about my health conditions, mainly to make people aware that these conditions exist, how they impact peoples lives and to encourage people to support those with chronic illnesses and disabilities.

I share about my symptoms, my journeys to my diagnoses, I share about my experiences with medical professionals and through treatments and hospitalisation.

But I share what I want to share, how I want to share it and when I want to share it.

Yet often people seem to think that I owe them an explanation, that they are entitled to question me about my health, something so personal. Following on from their intrusive questioning, we are often forced to listen to their unsolicited medical advice.

"You need to work through it."

"Have you tried cutting.....out of your diet."

"My cousins friends coworkers aunt had what you have and she tried this and it cured her."

"Oh I had ME/cluster headache/fibromyalgia once."

I am fed up of it. I dont owe anyone any information about my health, my illnesses, my disability. And I refuse to do it anymore.

I am fed up of fighting for things every step of the way. I am so stressed having to explain why I need what I need that it is making me sicker. And I can't do it anymore, I can't fight like this anymore. Its making me lose my mind and I am so damn bitter about things.

My health is what it is, I have these conditions and they arent going away and I will no longer let anyone but me determine how I discuss my disabilities, how much I share, when to share it and who I do or don't discuss it with.

Noone is entitled to my life.

I always feel like I should be apologising, for not being able to help, for letting people down, for cancelling plans, for not being able to do what people want me to do or what they expect me to be able to do.

So be careful and be kind with your words and your actions. Life is hard enough, living with constant pain, fatigue, nausea and everything else that goes with it, without having to feel like you are a problem, without feeling like an inconvenience because of your needs.

I do not want to carry feelings of blame or guilt. I just want to have my boundaries respected.

I will no longer be apologising or explaining myself to people. I have no control over this, I did not want this, and I cannot change this.

So please just remember, if someone with a disability or a chronic health condition needs your help, needs to do things differently, needs to put their health first, respect that, accept that, do not make them fight to be listened to, do not make them fight just to make something slightly more manageable in their lives. Because I, we, don't have the energy or strength to do it.

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little-misses-lee · 4 years

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Living in Fear

I used to be someone, someone who was pretty much fearless in life. I would rock climb without ropes, abseil off buildings, get up on a stage and sing in front of hundreds of people, I danced, I did martial arts.

And yet I felt safe, I felt like I could bounce back from anything, I was brave, I was strong, I was fit, I could protect myself.

But things have changed, and now I live in fear.

And if we are honest, life can be pretty scary anyway, and when you receive a diagnosis (or many!) it becomes a lot more terrifying.

You become afraid of your own body, of your thoughts, of your movements, of what you eat and drink.

Have I done enough today? Am I moving enough? Am I contributing enough?

Have I done too much today? Have I tried to hard? Am I going to pay the price?

What if they get fed up of me? What if they get fed up of this new life? What if they aren’t willing to adapt? What if they walk away from me?

And they do walk away, friends, loves, some leave, some stay, if they stay, love them back. If they leave, they don’t have the strength that you do, they are weaker than you.

We cannot please everyone, sometimes, we cannot please anyone. We do want to see you, we do want your company, we do value your friendship and your love, but I just cant do it. I just cant make it today. But we carry on loving you anyway, even when the phone calls and text messages stop, we say we don’t care, but we do. It hurts.

Am I well enough to leave the house today? Will it cause a flare?

Am I going to have an attack today? Is there somewhere safe I can get to?

Am I strong enough to carry around my oxygen today? Do I have to risk leaving it behind, or do I stay inside?

And all these questions, so much overthinking, makes you ill.

Because many chronic conditions are not just affected by physical actions.

There are some conditions where even mental or emotional exertion, can cause you to be bedridden.

Imagine being so scared of your pain, or your fatigue, of your symptoms, that it stops you moving, you are unable to talk, you cant eat or drink without vomiting, light and sound hurts.

Imagine feeling so afraid everyday that you risk the very thing you are afraid of.

But we cant just relax. Because we have to be responsible for ourselves, nobody can tell us what we are capable of on any given day, sometimes, even we don’t know. And we try and try so hard to get things right.

So do we try to live without fear? Is living without fear, a chance, a risk we can take?

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little-misses-lee · 4 years

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Assumptions

So people make assumptions, based on what you do or don't tell them, based on what they see, based on your diagnosis regardless of how much they actually know.

People see how you act, how you move, they listen to what you may say, work on the assumption that you would mention all of your symptoms any time you feel them.

When you mention a type of 'headache' condition, they feel they understand, start talking about what works for them, or saying 'I had one of those headaches once'. What they don't realise is people commit suicide every year because of that 'headache'.

So I am going to list my diagnoses, and then list most of the symptoms that I have had in the past few years.

Diagnoses: Episodic Cluster Headache, Chronic Migraine, Temporomandibular Joint Dysfunction, (possible) Trigeminal Neuralgia, Myalgic Encephalomyelitis, Fibromyalgia, Functional Neurological Disorder.

Symptoms:

Chills

Fever

Light Headed/Dizziness

Struggle recalling words

Fainting/Loss of Consciousness

Difficulty Swallowing

Parasthesia

Electric shock type pains in face

Palpitations

Struggle forming sentances

Confusion

Headache (tension)

Nausea/Vomiting

Fatigue

Neck pain

Weakness

Shortness of Breath

Chest pain

Migraines

Sensitivity to sound

Loss of use of a limb

Sore throat

Pleurisy

Shoulder Pain

Tachycardia

Eyelid Tremors

Cold hands and feet

Blurred/Double Vision

Subluxation of Jaw

Back pain: nerves.

Insomnia/Lack of Sleep

Swelling

Muscle Cramps

Hip Pain

Earache

Urticaria

Electric shock type shooting pain in back and legs

Painful glands

Memory Loss

Mottled skin

Fits/Seizures/Convulsions

Regular infections such as common cold, throat infections, chest infections, shingles

Leg Pain

Excessive Sleep

Jaw/dental pain

Blackouts of time and memory

Cluster Headache (very severe focused pain)

Temperature Sensitivity

Struggle Regulating Temperature

Abdominal Pain

Hair loss

Tremors

Back pain: muscular

I am sure there are still some I haven't mentioned.

The point in writing this, was to make people see just how much conditions can impact a persons health and wellbeing. Someone may hear fibromyalgia and just think of some pains, someone may hear M.E and just think 'tiredness', when in reality my conditions cause a multitude of symptoms.

Some days I will say if my symptoms are bothering me, I may tell someone that I am in a lot of pain that day, but I may not tell them that I fainted, or that I have been vomiting or just blacked out and am confused. I don't discuss all my symptoms, sometimes I don't discuss any at all, that does not mean they are not there. It doesnt mean I am having a good day or I am 'better'.

Never make assumptions about how someone is feeling or how things affect them. If you want to know, or want to understand, IF YOU KNOW AND GET ALONG WITH the person, you can politely ask if they mind discussing it or if they mind educating you about it.

If they say no, don't be offended, it's their body and their decision, but often we are happy that someone would want to understand.

So I will leave you with the wise word of Ms Lady Gaga, "Til it happens to you, you don't know how it feels."

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little-misses-lee · 4 years

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Be an Ally - Part 2

If we support each other, we can end ableism and discrimination. I am writing a few posts about the challenges, often unseen, that those with disabilities or chronic health conditions face. Be an ally, be a supporter, speak up.

The Symptoms - now of course symptoms vary depending on the conditions a person is diagnosed with and each individual is different. I am diagnosed with Episodic Cluster Headache, Chronic Migraine, Temporomandibular Joint Dysfunction, possible Trigeminal Neuralgia, Myalgic Encephalomyelitis, Fibromyalgia and Functional Neurological Disorder. I live in pain everyday and that pain varies from allowing me to work or do a limited amount of tasks at home to being bedridden for many many days at a time. And you only 'get used to it' to a certain extend, you still feel, its always there. I dont remember what it is like to wake up without pain. The fatigue is the worst for me. If I am working, I cant do anything else, I spend the rest of my time in bed or on the sofa, not because I want to, but because I have to. But whatever symptoms a person has, adds many challenges to their daily life and can be exhausting to deal with.

Watching other people live their lives - seeing people going out, socialising, going for a walk, getting a house, getting married or having kids. Living with a disability or chronic illness can affect or prevent all of these things. Having to see and hear people talk about their children and their weddings, all the exciting things they do, can be really emotionally difficult. We dont know whether we will get that chance. And that really hurts. And will this be forever?

Loneliness - again, levels of isolation can vary. Some people cannot leave their homes or their beds, and have not done so for years so are limited to the company of their carers. And in some cases people have to live in dark, silent rooms, so conversation is off the cards too. I am lucky, I still get to work, and that, although a struggle for me, is my sanity. Imagine not seeing a person for weeks and weeks at a time. No phone calls, no social media. And sometimes even if you have company or contact with friends or family, you can still feel so alone.

An increased likelihood of abuse - a 2012 review found that, overall, children with disabilities are four times more likely to experience violence than non-disabled children. A review also found that adults with disabilities, overall, were 1.5 times more likely to be a victim of violence than those without a disability. This rises to nearly 4x as likely when the person has a mental health condition. Factors to this include: stigma, discrimination, ignorance, and a lack of social support. Sometimes the person isn't able to verbalise their abuse. For a person with a disability experiencing domestic abuse, while this in itself is more likely, the severity and length of time they experience this is also likely to be worse. For many, their are barriers to leaving or accessing help, if they cannot work, they may be financially reliant on their abuser, the abuser may also be their carer, or simply being able to contact someone for help, accessing a telephone or having an opportunity to disclose abuse may be limited or impossible.

Learning about your conditions - living with a health condition is difficult, but learning about it also hard. Personally I spend a lot of time researching my conditions. Each condition/person is different, but we have to learn about our mortality (rates), recovery rates which are often low, the risk of degeneration and lower life expectancies as well as a risk of complications. Life is tough for everyone and these are just added concerns. Am I going to die? What if I catch the flu? that could be a serious problem for some. There is a 5% chance of full recovery, chances are I will never recover. Sometimes we live in fear. Fear of our symptoms, fear of catching any general illness like a cold. For many, their bodies react severely to what a healthy person would barely even think about and a common cold can leave people at risk or their lives or bedridden unable to eat or drink.

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little-misses-lee · 4 years

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Be an Ally - Part One

If we support each other, we can end ableism and discrimination. I am writing a few posts about the challenges, often unseen, that those with disabilities or chronic health conditions face. Be an ally, be a supporter, speak up.

Invalidation and Gaslighting - people around us, friends, family, colleagues, medical professionals and strangers can make us feel doubted, like we are losing our minds, like maybe it is our fault, maybe we just arent trying hard enough. I assure you, we are trying, we are doing our best, and we don't want to live this way. Simply, just listen. Nobody can explain our symptoms and living with our condition like we can. So believe us.

Being denied medical treatment, investigations and medications - often we are denied investigations in the diagnostic process or even after diagnosis. A large number of people with chronic conditions become what I like to call 'expert patients', we spend time researching our conditions endlessly and often know a lot more than the doctors we see regularly. We are often denied effective pain medication, if you break your leg, it is easy to get painkillers prescribed, if your pain is chronic however, medical professionals are often unwilling to provide painkillers longterm. Some think we are 'pill grabbers', addicted or looking for some other affect from opiates for example. And sometimes cost is an issue, some injections I take are very expensive, and therefore often we are only given a very limited number. There is a lot to contend with here.

Disappointment - there are often times when we are living in hope. Hope for new research to bring about an answer, hope for a new professional to shine some light on your conditions, hope for a different treatment that could improve your symptoms. But often this leads to disappointment, realising that doctor is not on your side, realising that there is virtually no funding into research for your conditions, treatments not working or being cancelled. Yes, we all get disappointed when things dont go our way, but when that means continued pain, fear, insecurity etc, its a horrible way to feel.

Societal pressures - we are expected to conform to a world that is not built for us. We like to think we adapt for people with disabilities these days, but in reality so many places are still inaccessible in some way or hinder or worsen daily life for those with disabilities. Whether that is lack of a ramp, a door opening the wrong way, no toilet downstairs in your workplace. Most people don't think of these things, yet there are still things less obvious. We put in so much effort to get by, to do things like shopping or washing our hair can be a huge challenge. Yet we try. And my biggest struggle personally, is working full time, smiling and assisting others through my pain and other symptoms, trying to keep up and be as good as people who are healthy. So we overwork, and this has a huge impact on our health.

Judgement - when you have a health condition or disability, you can go from feeling invisible one minute, to feeling stared at the next. People are judged when they put their Blue Badge in the window of their car then proceed to walk without a mobility aid. People are judged for receiving government assistance, then others are judged for NOT receiving benefits, as they assume this must mean 'you cant be that bad.' People suddenly feel they have a right to know and enquire about your health. Your private information is suddenly public property, and not only do they feel entitled to your information, but then proceed to give unsolicited medical advice and have an opinion, often on conditions that they do not understand. And pity, sometimes this is well meaning, but we dont want to know 'you couldnt live like us', or 'its inspirational that we do that,' etc. We are not there to make you feel better about your life. Please stop.

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little-misses-lee · 4 years

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Overwhelmed.

I have been getting more and more fatigued but still can't sleep. It is so draining being so beyond exhausted but laying in bed with nothing to focus on but the pain.

And holy shit the pain is bad right now.

It feels like the muscles in my legs are being burned on hot coals, nerves are firing in my back and through my face. Its excruciating.

I have taken my painkillers but they are not doing a thing.

I am sick of being so fatigued, I am sick of pain, I am sick of sickness.

Its times like this that I start pitying myself, not a positive trait. Why me? Did I do something to end up this way? What if this never stops? What if this is my life?

Someone please take it away, even for a day?

I have genuinely forgotton what being in a healthy body feels like.

I dont remember days without pain, I dont remember what a good nights sleep is, I dont remember what it feels like to be active and energetic. I have memories, but I can no longer remember what it is like to be that person.

I just want the pain to stop. Just one day, one hour, just so I remember what it feels like to be more than this.

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little-misses-lee · 4 years

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This is one of the most beautiful and relatable things I have read in a really long time.

You wanted everything And I gave you everything But my everything was too much for you. Because my everything is late-night ‘I love you’s,’ and ‘drive safely’s,’ and 'text me when you get home’s.’ My everything is future plans, and kept promises, and never being able to hold you long enough. The past wrapped up in pretty packages, because memories are priceless, and also because I can’t afford anything else. My everything is not caring that you always left the toilet seat up, or the towel on the floor, or the jeans right beside the clothes basket. My everything is making dinner, and doing the dishes too, because you had a long day, and so did I, but my watch stopped working when I met you. My everything is meteor showers on car hoods, and sweet notes under windshield wipers, and words that wouldn’t exist if you didn’t exist.

But the thing about my everything Is that it’s all or nothing.

And my everything is also… being on a first name basis with my doctor. My everything is hospital visits, and blood tests, and moderately gross side effects from various medications. My everything is sometimes not being able to get out of bed, which you only ever seemed to mind when my clothes were on. My everything is a pink slip. Convincing myself that shining scars are just permanent reminders that things are better than they were when things were worse. Things are better than they were when things were worse. My everything is a paternal ghost whose voice I can’t remember even though it used to sing me to sleep. My everything is a list of diagnoses you can’t pronounce, and a house full of mobility aids that were marketed toward grandmothers. My everything is knowing I’ll never be a grandmother.

You wanted everything and I gave you everything and you chose nothing instead. And it hurt, but more than anything I was jealous That you were able to choose nothing over my everything. Because my everything is too much for me, too.

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little-misses-lee · 4 years

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Support the Vulnerable.

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little-misses-lee · 4 years

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Words of the Chronically Ill

Theres 4 walls in which I hide

The clouded corners of my mind.

So many hours I try to sleep

I am not strong, I'll admit defeat.

And I suffer, simply take the pain

While faded memories seep from my brain.

I am under attack from an enemy unknown

It takes more from me with every blow.

The sickness has a hold of me

Numbing everything I used to be.

With every breath I am filled with fear

We are not remembered, we simply disappear.

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little-misses-lee · 4 years

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Painsomnia: all pain, no sleep.

I first discovered the term ‘Painsomnia' a few years ago. And simple terms, its being unable to sleep due to pain. And most people with some form of chronic illness or chronic pain are familiar with this beast. It is a lack of sleep that is often prolonged and incredibly frustrating, you cannot sleep because you are in pain, yet lack of sleep often worsens your pain and other symptoms which therefore make you even less likely to sleep. It is a vicious cycle.

It is being exhausted, sometimes to the extent you can’t hold a conversation, you feel like your mind and body is shutting down and you want nothing more than to fall into bed. But when you do, sleep doesn’t come. Your pain prevents to from laying comfortably, is pounding in your head, your nerves are firing, your medication isn’t helping and you know another sleepless night is ahead. Now you may think that if someone is tired enough they will sleep, this just isn’t the case, whilst the symptoms of many condition can prevent sleep, disturbed sleep itself can be a symptom.

So what do we do? We pace around our bedrooms and our houses, trying to wear down our muscles, ease the irritating and excruciating nerve pain. We try and distract ourselves, read, watch TV, do word puzzles, anything to try and take our mind off of not only the pain, but the frustration, the boredom, the loneliness.

We may put on relaxation music, incense, some people take bubble baths but often none of this helps.

And often there is a reluctance from medical professionals to provide sleeping pills, this could be due to interactions with other medications or because they do not want you to form a reliance on them.

Painsomnia is just another battle that we do not need, but all too often have to face with no hope for change.

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little-misses-lee · 4 years

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Fear

If all we do is dwell on our fear, we will never have the opportunity to live.

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