#myalgic encephalomyelitis
At the end of the day only you know how unwell you are and what you are capable of, or not
Unfortunately when we are diagnosed with chronic illness instead of receiving the care and nurturing we need we often need to fight for ourselves instead
Keep fighting
Stay strong
You will get through this
Stop putting so much pressure on yourself
to be better
to change
Please stop and know that it will happen
you have time
Becoming is a process
There were so many signs that my health was declining
Yet instead of realising that something serious was happening, I blamed myself for not trying hard enough for
Not being good enough
Jennifer Brea’s Amazing ME/CFS Recovering Story: the Spinal Series - Pt. II - Health Rising
https://www.healthrising.org/blog/2019/05/21/jennifer-brea-chronic-fatigue-mecfs-recovering-story/
“There’s no doubt this is not the easy way out for ME/CFS. If I could choose a way to recover – which I obviously can’t – neurosurgery would be one of the last options on my list. I think I would rather swallow a toxic chemotherapy drug than have a neurosurgeon fuse my head to the top of my spinal column. That procedure sounds about as spine-tinglingly scary as anything I can imagine. (Brain surgery would probably be worse.) The fact that only four neurosurgeons in the world can be trusted to do this procedure doesn’t help.
Among the first thoughts I had upon learning of Jen’s recovery was that if this is what it takes – a rare diagnosis and neurosurgery – if that’s what it really takes to recover, I don’t know that that’s ever going to happen.
After some reflection, I don’t think it’s as bad as that. Jeff and Jen and two other people have found a way and a remarkable 20 people on Phoenix RIsing have gotten a diagnosis. While getting a diagnosis isn’t a piece of cake, it can and is being done.”
“Jeff and Jen’s stories do bring a new focus to the spine and brainstem. Hip, on the Phoenix Rising Forums, pointed to five structural conditions which can cause brain stem or spinal cord compression – and ME/CFS-like symptoms:
cervical spinal stenosis — spinal canal becomes too narrow, which can put pressure on the nerves
syringomyelia — fluid-filled cyst in the spinal cord which compresses the spinal nerves
Chiari malformation — where brain tissue is pushed into the spinal canal due to a skull which is too small
tethered cord — where spinal cord is “stuck” to a structure within the spine such as scar tissue
craniocervical instability — instability of head & neck bones compressing the brain stem or upper spinal cord.
Other spinal conditions that could cause or contribute to ME/CFS/FM/POTS include cerebral spinal fluid leaks and intracranial hypertension.
Even if you don’t have CCI/AAI, the search for it may help uncover other problems. One person on the Phoenix Rising forums reported that she didn’t have CCI but that the search for it turned up “severe stenosis, edema, compression fractures, and other issues causing my spinal cord to be affected” and that treatments for those conditions were helping.”
“For me, the recovery stories provide hope and are a sign not to give up, to stay curious, to keep reading and asking questions. Medicine, as Jen Brea noted in her recent blog, is ever-evolving. What was cloudy yesterday may become clear today. It wasn’t that long ago that CCI/AAI surgery wasn’t even considered for Ehlers Danlos Syndrome – it was the province solely of whiplash and trauma patients.
We should also remember how vitally important sharing our stories – both our ME/CFS stories and our recovery stories is. Jeff’s publication of his story may have saved Jen’s life. It’s now enabled 20 people to be diagnosed with CCI/AAI and three are undergoing surgeries. Please share your improvement or recovery story.
Our goal has to be to assist the medical system in its evolution, to keep the hope alive, to keep sharing, to have the courage to keep knocking on closed doors, and eventually getting the light to shine through.”
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a disease characterized by profound fatigue, sleep abnormalities, pain, and other symptoms that are made worse by exertion.
“You’re too young to be thisill”
[ID: Gif of a man saying “we can’t all be as blessed as you”]
“Who could have that many conditions”
[ID: Gif of a man smiling slightly shaking his hands]
“So what do you do all day at home if you don’t work?”
[ID: a gif of a man in a tuxedo in front of a microphone saying “Netflix. Netflix. Netflix.”]
Doctors when they have no idea what your symptoms could mean
[ID: a gif of a man sitting down saying “let’s surf the net”]
Most doctor when you have chronic pain and your current medication isn’t helping
[ID: Gif of a young girl saying “cry me a river”]
That realisation you over exerted on your good day
[ID: A gif of a middle aged man, Michael Bluth from Arrested Development, saying “I’ve made a huge mistake”]
That moment you realise your medication is making the symptoms it’s meant to help much worse
[ID: A gif of James Cordon with his arms out looking panicked saying “This has backfired”{
Doctor: it’s probably just growing pains
Me, a 21 year old, who stopped growing 7 years ago:
[ID: Gif of a teenage boy who is angry saying “this is bullshit!”]
“You don’t look like you’re a 7 on the pain scale”
[ID: Gif of man saying “You can’t always judge from external appearances.”]
How my joints make me feel when I first wake up in the morning
When my brain fog makes me do something ridiculous
When a doctor has to google your condition in front of you
When your medication makes you worse not better
When the codeine starts to melt before you swallow it
If a lot more funding has been given to ME and fibromyalgia research and if these conditions and the patients had actually been taken seriously and not made out to be “in our heads” I believe we’d be a lot closer to figuring out long covid right now and there would be more available to support the masses of people who have developed this awful chronic illness
fatigue is: never being able to wake up at a reasonable time no matter how hard you try and hating yourself for it because you just physicallly cannot force your eyes open and no amount of alarms or early nights or fail-safes or tricks make any difference
a message that i think doctors need to hear:
not every treatment is right for every person
not every treatment will work for every person
some treatments will make some people sicker
understand that most chronically ill are extremely familiar with their bodies and their symptoms
understand that we are trusting you with our wellbeing and that places us in a very vulnerable position
understand that your actions can have major consequences in our lives
understand that you can do us immense harm
understand that we are not your guinea pigs
psa: you’re allowed to stop treatment. it’s okay to stop because it doesn’t feel right for you, because it’s not working, because you’re completely drained, because you’re sick of false hope, because you’re tired of feeling worse rather than better, because it’s costing too much, because it doesn’t feel worth it. some conditions are extremely difficult if not impossible to treat successfully. it’s okay to admit that and say, you know what, i tried my best, i’m done
chronic illness has this really fucked up dichotomy where you spend your life trying to find some sort of purpose but end up using all of your energy doing so
facts of living with a chronic illness that able-bodied people are completely unaware of-
- sometimes we can’t afford our medication and supplements
- sometimes we won’t eat for a day or more because we’re physically unable to prepare food
- we develop obsessive, compulsive, anxious, harmful tics and behaviours as a result of our illnesses
- our welfare payments can prevent us from entering into a long-term relationship
- we can go for 7+ days without showering. this is not an active choice
- we can be in excruciating pain and you might never know it. we’re very good actors
- the majority of us would give anything to be able to work and/or study
- many of us have contemplated and even attempted suicide. many of us have succeeded
- we can feel a tremendous amount of guilt and shame every day
- the simplest of actions such as speaking, standing, sitting upright or opening your eyes can be unbearable
- we experience a thousand symptoms every day, many of which we will never mention because we would otherwise be speaking about them non-stop
- we eat junk food, we stop treatment, we smoke, we drink alcohol, we do things that are bad for our bodies, just like everyone else. we’re allowed to do this. it doesn’t mean that we are choosing to be sick
- some days we’ll be capable of running a mile, some days we won’t be able to lift a finger. we don’t get to pick which day is which
- sex with a chronic illness is usually really really difficult. so is dating
- mobility aids are not an all or nothing issue. some days we will need them, some days they’re optional, some days we might not need them at all. this does not invalidate their use or necessity
- for many of us the internet is the only form of communication and socialisation that we have
- we are not drug addicts or drug chasers because we require drugs to function
- many of us distrust doctors and the medical industry due to years of bad and sometimes abusive experiences. this does not necessarily mean we’ve given up on treatment or getting better
- we sacrifice a lot every day
friendly reminder that being disabled is a full-time job. don’t let anyone make you feel bad for not working when you are physically incapable. you work harder than anyone else just to keep up with your day-to-day life.
