I have been stuck in bed and within one room for almost 15 years now. I have learned over time to let go ( as many of us have) in the most impossible and profound of ways. To watch life pass by, to observeโฆ.
#cfs
#mecfs
#pmwe
#longcovid
#lymedisease
#lyme
When you hit a new lower level with your
#chronicillness
, you start to reminisce and long for the less sick but still very sick version of yourself.
No matter how many years you have been unwell, the grief never gets easier.
#mecfs
#lyme
#longcovid
#severeme
It astounds me that diseases as serious as
#mecfs
,
#Lyme
and now
#longcovid
can be so blatantly dismissed and neglected when the level of disability and suffering is more severe then most any other known disease that is taken seriously.
#chronicillness
#pwme
#severeme
Today is my birthday & I am unfortunately stuck in bed as usual.
#MECFS
has tried its best to rob everything. It has stripped me bare, left me battered, broken, dependent, severely disabled & on my hands & knees year after year after year.
What it canโt take however, is my
tending to me whilst I lay stuck in my bed and realize I canโt end it just yet.
There is still, STILL too much left even in the rubble. There are still reasons to smile, moments that move me, as fleeting as they are.
๐งตI have not been inside a grocery store, a clothing store, a movie theatre, a restaurant, a drugstore or even a convenient store in over 10 years.
I have not driven a car or been on the beach, which is a 5 minute drive from my house, in 15.
#mecfs
#lyme
#longcovid
#severeme
The sad reality for many of us is that
#SevereME
,
#Lyme
disease and
#longcovid
are all illnesses that donโt simply or kindly take you from this earth but progressively rob you of almost every single human joy that there is, whilst keeping you alive.
#pwme
#mecfs
But then I put a decadent piece of chocolate into my mouth, listen to the melody of one of my favorite songs, read a beautiful and descriptive poem, see a yellow bird painted with black polkadots floating in the air outside of my window or gaze into the loving eyes of my mom
Some might ignorantly suggest that being chronically ill is due to past trauma that you havenโt fully healed from but what about the much greater trauma of being severely medically neglected and gaslit for years on end whilst being on the verge of death?
#lyme
#cfsme
#longcovid
This illness has taught me to live for the smallest of moments and joys.
To continue to exist and push forward even if this life feels unsurvivable. Many times a week and/or many times a day, I ask myself, is this life worth continuing ?
the rest of the world move forward, while sitting from the sidelines, from behind the metaphorical glass window pane. Friends going to college, discovering themselves, starting careers, traveling, buying homes, getting married, having babies,
starting families.
All things that I have craved with my whole heart to also be able to do but the severity of my condition has simply not allowed it. Having severe M.E. and also late stage Lyme disease is a prison sentence for many, an unexplainable and ..
inhumane existence, especially as a young person.
It is a life of solitary confinement within your own body and the outer walls of one room.
I try my absolute hardest to make the very best out of this, however it is no easy taskโฆ.
For me, this has been the case. The most valuable years of my life have been robbed by this illness. If a cure is found within the next 5 years, I will be 40 yrs old. I've been seriously ill since I was 19, which means that the majority of my life has been spent in a bed. ๐
๐งต1/3 What illness exists other than
#SevereME
& now some cases of
#longcovid
, where many, (including myself), can not manage to get to a hospital or Drโs office because we are too sick to endure the trip?
Where speaking or concentrating a little too hard causes instant
#PEM
..
Today I feel like Iโm going to die. I have been in this place so many times & it never gets easier. I canโt go to a hospital & Drs have nothing to offer. There isnโt anything I can do except lay here in the dark, white as a ghost, unable to speak or move.
#LymeDisease
#mecfs
#LC
I canโt tolerate visiting or talking for more then 5 to 10 minutes most of the time. Even at 5 minutes I can feel the blood draining from my face and my body crashing as PEM hits instantly.
Does anyone else experience this when it comes to speaking ?
#mecfs
#pmwe
#lymedisease
Surrendering is big part of chronic illness and when you are very severe, you have no choice but to profoundly & humbly acquiesce.
The level of surrendering though can feel too impossible and cruel for most to even comprehend.
#mecfs
#chronicillness
#lyme
#longcovid
#pwME
Coping with the profound grief of the life you hoped to have but couldnโt due to a prolonged and severe chronic illnesses is something that is hard to put into words.
#mecfs
#pwme
#severeme
#lyme
#longcovid
๐งตโฆโฆ. or to celebrate any special occasion in over a decade.
The examples are endless but you get the idea.
It may sound as if I have committed a terrible crime and am writing this from inside a prison cell but this is severe ME/CFS and late stage Lyme disease.
@MrkStdngr
Your daughter is severely sick, itโs not emotional or spiritual. Finally he truly believed me after that. But man being told itโs psychosomatic in any way causes serious ptsd. Iโm afraid of therapists and any western Dr at this point.
#severeme
is a life of existing, enduring, surviving and persevering minute after minute, hour after hour, day after day, year after year and for some, decade after decade.
This is not how a human life is supposed to be.
#mecfs
#lymedisease
#longcovid
๐งต I have not been to a dentist in 9 yrs or to a Drs office in 7.
I have been too unwell to visit with friends & verbally speak for more then 15 min in over 9 yrs.
I also have been unable to sit upright at a dinner table to eat with my family โฆ..
@lapis_lazuli11
Iโm so sorry Amy, my hearts hurts for you. You deserve at the VERY LEAST to be able to stay in the comfort of your own home. Do you think they would be willing to pay for a carer? Sounds like they donโt understand this illness at all. ๐ฅบ๐
๐งต1/3 There is an unfortunate misconception about being chronically ill, that if you remain sick, it is you that is doing something consciously or subconsciously to keep yourself from healing. That somehow it is your fault for not getting betterโฆ.
#MECFS
#lyme
#longcovid
#pwme
3/3 What other disease is capable of turning all these things into luxuries and robbing a human being of so much and for so long?
Please let a
#cure
be found soon for all of us who dream of being more then a ghost in our own lives.
#mecfs
#spoonie
2/3 Where the most basic human birth rights cause a set back or are simply not even possible, such as - sitting outside, talking on the phone, watching a movie, reading a book, bathing, going on a car ride, intimacy, sitting at a dinner table or visiting with loved onesโฆ
๐งต 1/2 Before vs after
#severeme
&
#lymedisease
I had many plans & dreams for my life 15 yrs ago.
They went from,โbeing a model, graduating art school, becoming a graphic designer & traveling the world โ, to โhaving the ability to eat at the dinner tableโฆ.
#mecfs
#longcovid
@annitht
Iโm in the same boat Annie, if my parents die, itโs over for me as well. They are my only family- no husband, children, or siblings. Iโm so sorry that you have to live this reality as well ๐โค๏ธ
@thane_black
All the above, also losing my youth. Getting severe at a young age and being sick during the prime years of oneโs life is one of the most devastating aspects for me personally.
๐งต3/3 It is incredibly harmful, untrue and unfair to all of us who have or are currently doing everything possible to try to heal from crippling illnesses that there are no known cures for.
Whose fault is that? Certainly not ours.
#chronicillness
@MrkStdngr
When I first got sick I had to go through a little of what you are dealing with. Luckily my mom had CFS when I was a kid so she understood what was happening but my dad not so much. He is a therapist and took me to many. Finally one therapist said โฆ.
@amy_is_tired
I relate very much to this. It becomes so hard to even get help when you can barely use a phone to speak or text or organize. It leaves you in quite a stranded position
๐งต2/3 that you just arenโt trying hard enough, you arenโt digging deep enough, that you have some childhood wound that once healed will heal you.
This narrative needs to stop ๐
1/2 To continue to wake up each day and choose to keep trying, to keep fighting, to keep hoping, after so many years of suffering, being confined, debilitated and for many, unable to speak, walk or see the light of day,
#LongCovid
#mecfs
#pmwe
#cfs
#lymedisease
#chronicillness
@allietrann
Hang in there Allie ๐ซ I know the feeling wellโฆ. After 15 years of being sick, Iโm in a similar place but there is more hope right now then ever in regards to research into ME/CFS and long Covid. Donโt give in just yet, you are needed here. โค๏ธ
When you are constantly at the mercy of your body, you will do absolutely anything at all to find relief. Learning how to stick my own veins, & make & administer my own Ivs, has been one of the few things that gives me a temporary reprieve on my worst days.
#LongCovid
#mecfs
#lyme
@arianek
@brunodbo
Omg Ariana, I just read everything you went though and my heart just breaks for the torture you have had to endure. What a courageous soul you are, many wouldnโt be able to survive all that. Iโm just so sorry and wish things were vastly different โค๏ธ๐ข
@Tommyguns11
@GavinNewsom
@KTLA
Itโs not just about the death rates though. So many people who have gotten this are still struggling for months later with health complications. A few people I know as well.
@MrkStdngr
It really is, as if the physical and emotional suffering due to being so sick isnโt enough, then we have to prove ourselves and fight for people to believe us or understand. Itโs beyond cruel and unfair.
@hopefullizzy
I never do at this point, it just causes a worsening crash if I donโt have a parent or friend to help me speak to them. They usually have nothing to offer anyways. It feels as if we are surviving on a raft in the middle of the ocean so very far away from any help or land.
2/2 Thank you so much to all of you who made the last two days really meaningful for me by sharing my story. Truly means more then you all could ever know. ๐ค
@GeorgiParvanov4
I feel this deep in my heart, my parents wonโt allow me to do assisted suicide either, even though the suffering is just out of the this world. Iโm so sorry โค๏ธ
@S_wei
I think so many of us in this position can unfortunately relate to this statement ๐ My heart really goes out to you Tobias and to everyone who also feels this way.
@MrkStdngr
@hopefullizzy
Whenever you have a chance Mark, look up Elizabeth DโAngelo on Facebook and DM her. She had the neck, spine and throat thing your describing. She would go into paralysis, have seizures and breathing spasms etc but she figured out how to help change it for herself.
@MrkStdngr
Omg!!! This is insanity!!!!! We need to find you more advocates. Iโm so sorry that you keep having to go through one hurdle after another, itโs not right.
@alexandrite113
@vee_etc
I have felt like this all along, I donโt feel most people really care all that much about diseases that arenโt mainstream. Even my own family members donโt share about my illness or my life. Itโs like I died and no longer exist.
@myrabatchelder
So upset about this. As some who is already so sick, canโt get vaccinated and depends on care from my elderly mom who does have to leave the house, this mandate could have really been a life saver for both of us.
@PaulBetBest
@misshealing7
I know! Thank you for saying this. Her parents were planning to throw her out to the curb in just a few months! Itโs unreal ๐
@thane_black
๐ซโค๏ธ ily Thane. Itโs unreal how these illnesses effect us all so differently too. I was sick as a child as well and often wonder if the worst adult cases start in childhood
@ChadDigums
Iโm really touched by what you said, thank you. Iโm planning to continue to share more of my story on here ๐ I hope and pray that long Covid research does the same ๐ค๐ป๐๐ป
@lcwithme
That is awful Marisa ๐ Iโm so sorry your parents are not supporting you, nothing worse then being this sick & having your family doubt you! I echo everyone elseโs comments regarding unrest, it would help them better understand this disease if you can convince them to watch it ๐ค
@Alwayshopeful25
Thank you Eric, I promise that you will find a way despite how brutal and unrelenting it feels in each moment. I felt that way two years into this as well. I couldnโt imagine going on but somehow there exists in all of us a strength we wouldnโt even believe.โค๏ธ
@MrkStdngr
@maggytamney
This is accurate ๐ฃ, I canโt get to a hospital or dr either, especially at my worst. My body canโt tolerate it. Itโs not something most can comprehend because it sounds too awful and unbelievable to be true.
@debbie_seymour
Been primarily bedridden for almost 10 years nowโฆ you lose muscle tone and get weak but thatโs about it. Make sure to pump your legs a few times every hour just to keep some blood flow
@welcomewords
Iโm so sad to read this ๐ please give Nathalie my love, she is such a beautiful human. May the extreme symptoms she is having ease up and may she get some relief soon. She will be in my prayers ๐๐ป๐ฆ
@MrkStdngr
Are your parents willing to talk to anyone knowledgeable about this illness? It sounds like they have 0 understanding of long Covid, ME, etc ๐ฅบ
@thane_black
Talking is one of the biggest things that causes a crash for me, more then moving around. I donโt understand it. More then ten minutes and Iโm done for.