The last couple of years haven’t been easy. I went through an unhealthy relationship that ended in a not very nice breakup. I moved to another city where I only knew one person who a few months later decided that we couldn’t be friends anymore because of how I deal with my chronic illness/disability. Another friend, whom I had known for 10 years, also ended the friendship, apparently because I had changed. Almost none of my contacts survived my moving away. So I was alone in a new city when Covid arrived. In addition to that my heath got worse. It hadn’t been good for years, but at least I could do some things. But by the end of 2019 I wasn’t able to take care of myself anymore. But a few months had to pass by for me to ask for help. The people who saw that I needed help and supported me saved my life. It’s been a year since and staying at home doing nothing but concentrating on my health really has helped me. It’s been a lonely year, but that’s okay.
Normally I’m not one to make New Year’s resolutions, but when 2021 came around I suddenly had gained enough strength to set three ‘goals’ for this year. Or let’s call them 'projects’, because whether I finish them or not - it will be a better year than the last few were. So the projects are:
- lose weight (yeah, I know, but I’m doing it for me and not because anyone says so)
- declutter my appartment
- get a dog
The last point actually was my therapist’s idea, because it would give me a reason to leave the house. And since I’m capable of taking care of a pet, we decided to put it on my list.
So far, I lost 13 kilos (28 pound), my flat is ¾ done - and I got a dog. It had been a lifelong dream of mine to own one and I still can’t believe it has come true. Her name is Pippa, she’s about 5 months old, and a Hrvatski Ovcar (Croatian Sheepdog). She’s such a lovely dog and I just love her. She spent her first few months roaming the streets of Gospic before being rescued and brought to Austria where I adopted her. She likes to cuddle and play ball and is just so happy all the time. My cat is not as happy as I am, but I’m pretty sure they’ll get along well.
This being said, I will dedicate this blog to Pippa’s and my journey getting to know each other and finding a way to live a life together - despite me having CFS/ME.
It’s been two and a half weeks now since she moved in and there’s one thing that I noticed the most: Some people suffering from CFS/ME say that they really benefit from pacing - doing something for a short while, resting, doing something and so on. I was never able to do that, probably because of my ADHD-brain being not satisfied with 'doing something for a short time and not finishing it before resting’. But ever since Pippa moved in, I’m forced to do pacing: She’s not house-clean yet, so I have to go outside every 1.5 hours. She’s still a puppy so she sleeps a lot - that’s when I can rest for an hour or two, before I have to go outside again. I never thought I would benefit from pacing, but I really do. It’s not that I’m healthy all of a sudden, but it helps me cope with the tiredness and fatigue.
To wrap things up… My life has changed big time and I’m so happy it has.
“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.”
[Image 1 Description: A Crowd of people, all colored blue, with the label “Interneters” on them. To the left of the crowd a young man stands out. He is a repeat character. We’ll call him “The Interneter.” He has dark brown skin, short light blue dread-locks. He wears a burgundy colored hoodie, a dark teal V-neck shirt, and dark bluish-grey jeans. The Interneter says “You never told us what a "Spoonie” is.“
To the middle right is Rachel, we can only see to the bottom of her shirt for now. (She has pale white skin, short and messy blonde hair, teal shirt with ferns printed on each side, Maroon shorts, light cyan thigh-high stocking with cut outs of leaves on them, maroon shoes). Rachel, smiling wearily, looking right at us, holding her index finger up:”Well, you could just google it. But hey, what the heck? Why pass up an opportunity to be the first person who tells you what it means?“
We see Rachel again on the lower left side, smiling while raising an eyebrow, holding her left hand to her face, and her right hand out towards us: "Ya ready?”
The crowd lines the bottom of the image. The Interneter stands in the middle, with a speech bubble above “Yes.”and a speech bubble to his bottom right, “That’s why we asked.”]
[Image 2 Description: There is a lavender square at the top of this image, on it is the text: “Spoonie” comes from a disability metaphor first described in a 2003 essay by christine miserandino called “The Spoon Theory” in which she tells the story of trying to explain to a friend what it feels like to have lupus, using spoons as visual representation of her daily energy. She actually handed her friend a bouquet of spoons and said: “
Below Christine, a white woman with long brunette hair, a white headband, purple dress shirt and jeans, holds out a sparkling bouquet of spoons saying "Here you go”.
Below this we see her down on one knee. To her right her friend, female, brown skin, long braided dark brunette hair with a reddish tint, blue over-all dress, and teal leggings, sits on a stool holding the spoons Christine handed her.
“You have Lupus.” Christine says, to which her friend nervously responds “Haha, whaaat?…… Please explain.”]
[Image 3 Description:Another lander square fills the top of this image, on it is a quote from Christine's Essay, “Most people start the day with unlimited amounts of possibilities- energy to do whatever they desire…for the most part, they do not need to worry about the effects of their actions…I wanted something for her to actually hold, for me to then take away. If I was in control of taking away the spoons, then she would know what it feels like to have something else being in control.”
Below Christine sits alone, her legs “criss-cross”. She is smiling at us and holds a giant spoon. Around her are little blurbs in purple text, “Might actually own a giant spoon” “Has done awesome advocacy work” “Read more at butyoudontlooksick.com (if you want to)”]
[Image 4 Description: a chart titled “How Spoon Theory Works”. A single spoon equals a unit of energy that a person can use safely. On the left is “spoon cost per activities” on the right is icons to show the activities.
1 spoon; Getting out of bed, taking medications, changing clothes. 2 spoons; Watching a tv show, a microwavable meal, using the internet.3 spoons; Enagaing in a small activity like art, cleaning something, making a meal that required stove or oven.4 spoons; Taking a shower, leaving your home, socializing.
Narration text: Why use it? I’ll let this quote by a doctor who was originally using buckets of water (???) with patients explain. “Using analogies and/or metaphors…can help clinicians and patients’ loved ones get a better understanding of the impact of specific activities on a patient.” (John Hopkins Neurologist Scott Newsome, DO, on the topic of “Spoon Theory”)]
[Image 5 Description: The Interneter is looking worried, sweating. He says to Rachel,
“Oh wait, so I have major depression disorder, insomnia, and ADHD. During my last episode, I was barely able to make it to one class a day, and maybe get one meal. My insomnia felt uncontrollable. I ran out of mental brain power for my classes, but I still attempted as much class work as I could, even if my brain couldn’t fully show up. Don’t get me wrong- I still tried, so hard. Even if I was too depressed to feel things like ‘normal’ I still wanted to be embracing my college life. I feel like spoon theory would have really helped me in times like those. Especially since I haven’t found an antidepressant that works on me yet. I know it’s not like what you go through, like chronic physical illness. I wouldn’t want to make less of your experience or appropriate this term. I’m just wondering if-”
Rachel, looking calm, finding The Interneter endearing and smiling slightly, “Your experiences are just as valid and the level of impact your depression has absolutely qualifies you as a spoonie.”]
[Image 6 Description: Narration text “Today a spoonie is someone with a condition that causes limited amounts of physical and/or cognitive energy, such as chronic illness, mental illness, or disability. It’s also used by neurodivergents who deal with persistent energy limitations.”
Below sits 4 girls all smiling, waving, and looking at us, left to right; The first girl has an average frame, tan skin, long navy blue hair, a maroon hat, faded pink pants, a blue/purple/lavender striped shirt, and cutting scar on her arms. Second girl is Kitt, she was in another comic, she has a plus sized frame, dark brown skin, shoulder length curly/dark brown hair. she wears a teal dress with white strips, a waist long blue jacket, blue shoes, her left left is a purple prosthetic. Third girl, she is Asian, very light but still tan skin, with black hair in cut in a pixie style. She has on a white sweat shirt that has lavender sleeves and a salmon color at the bottom, in the center is the rainbow infinity sign for neurodivergence. She has on mint pants and wear white and salmon colored sneakers. On the floor below them sits Rachel.
Narrative text "Not all of us are literally measuring out energy in terms of spoons, but having such a metaphor is extremely helpful.“]
[Image 7 Description: Narrative text "Spoon Theory embraces acknowledgment of a condition’s control, which is weirdly liberating because this reminds a person:”
Girl number 3 is on the right is whispering to The Interneter “Lack of control isn’t proof of personal weakness. You don’t have to beat yourself up for experiencing your condition.”
“I know that…” the interneter says shyly, blushing and smiling.
“Do you though?” Rachel says from the left.
Below her is girl number one. “Do u? I’ve been doing this for 13 years and even I forget sometimes.”]
[Image 8 Description: Narrative text “For young people in particular, spoonie is the first word a person may use when starting to rewrite what their life with their condition could look like.”
The Interneter lays flat on his bed, we see him from the side looking hopeful “Having to live life this way isn’t easy, but I want to make it work.”
Below we see he is centered on his bed holding 1 spoon, “especially since I’m still having that episode of depression.” On the right side his words continue “I didn’t say anything because I was afraid of messing up the flow of the comic.”]
[Image 9 Description: Narrative text “Spoons can be a silly thing to associate with possibly not having enough energy to manage basic survival activities, which is one reason some don’t bother using the term at all. Still, it’s easier to say,”
A woman, standing in the center of the image with a long purple dress, short brunette hair, and a purple walking cane, holds a hand to her chest smiling “I’m a spoonie!”
To her left is a large man all in red, hand on his hips smiling, “My own experiences of feeling tired helps me empathize with you. You make me feel validated.”
To her right is a little girl colored pink “Spoons are good!”
Next to her is a woman in maroon “Such a cute and positive take!”
At the bottom of the image narrative text says “Rather than bring folk’s moods down with-”]
[Image 10 description: “My body is disabled! Living an existence with a condition that is unpredictable and invisible sometimes breaks my brain! Please don’t shut me out until I’m "Fixed”. Just respect my limits.“ Rachel says, now in the center of the people instead of the purple-dressed spoonie. She sits in her wheelchair with legs up, holding her arms out, her expression is crying yet smiling.
The large man to her left has his arms folded, now very uneasy "How do I tell apart your "disability” from excuses, self pity, and faking stuff? And who sits in a wheelchair like that?“
On the right the little pink girl is crying, her maroon mother bending down to hold her. "Isn’t "Disabled” bad?“ the girl ask.
Her mother responding ”Nothing we need to worry about, sweetie. There are plenty of programs that think of the disabled so we don’t have to.“
Narrative text, ”Yes. Spoonie can at times feel detached just enough from harsh reality to ease people’s discomforts.“]
[Image 11 Description: Narrative text:” Perhaps detached enough for misguided normies to think,”
A young woman standing in the center with one hand on her hip and one raised with her index finger pointed upwards says "Hey! I feel like I have limited energy to! I like this "spoons” idea. It will help me be mindful and proactive with my energy! I’m a spoonie now!“
She is white woman with tanned skin, long bleach blonde hair in a pony-tail, wearing grey yoga pants and a green tang top. On her tang top are the words "Has no condition is just human”.
To her left Girl number 3, Kitt, and Rachel are huddled looking at the woman.“Don’t-”says girl number 3. “Oh no, wait-” says Kitt. “You’re not one now, but hey, you’ll be one of us eventually. No need to rush.” says Rachel.
On the left is a young hipster male all in orange “You’re just a product of obsessive online health trends.” He calls out.
Narrative text “Let’s hope it doesn’t turn into the 'snuggie’ of disability lingo.]
[Image 12 description: Narrative Text: ”Now, being disabled by a condition, especially it’s fatigue aspect, doesn’t mix well with the 'hyper-productive’ narrative that today’s society puts out.“
A Pinkish-maroon leg with the words 'society that doesn’t fully realize the systemic harm of it’s ableism’ on it, kicks a stick figure of the Interneter high up into the air in a Team Rocket fashion.
”Looks like having problems with my human body is causing me to be considered less of a human agaaiinn!!!“ The interneter says, surrounded by anime sparkles.
Narrative Text ”Still, being active, productive, and accepted by some form of community, lay the foundations for self-confidence and a sense of worth. Contributing online is one way even the most debilitated amount us have managed a version of that foundation.“]
[Image 13 Description: Narrative text: ”Disabled communities are sources of support, love, guidance, and empowerment built upon collaboration, inclusion, and knowledge. They help bring together people with a willingness to listen, because they all know the value in feeling heard.“
Two horizontal rows of a diverse group of people with disabilities, drawn to show them all in bed, all interacting with each other like the would if the were together in person. Below each person is an awareness ribbon to indicate the condition(s)they have.
From left to right, top row; A young woman with very dark brown skin, black hair in a bun, is looking concerned and reaching for a young man in the row below her. He is black with slightly lighter skin, very short hair, a 5 o'clock shadow, wearing glasses. He is reach towards her with is left arm, his right arm is curled due to his medical condition. Next in the top row, a Young woman with curly brown hair, tan skin, glasses, and cutting parts on her arms is smiling and being handed a book by a young white male with Downs-Syndrome, he hair short light brown hair and glasses. A young woman with tan skin, glasses, wearing a hijab, has a pink prosthetic arm holding a piece of paper, and is using her other arm to hold hands with the person she is smiling/talking with- a thin non-binary with short blue pixie hair and braces on her elbows and right arm. This person is also holding a piece of paper, eyes shut from laughing, with happy tears coming from their eyes.
Bottom row; Next to the young man with dark skin, is a plus-sized woman with white skin, her hair is deep violet in a pixie cut. She is holding a yellow ribbon, looking concerned and speaking a ”?“ as she taps the should of the girl next to her. This girl is Asian with black hair in a short ponytail, she looks back at the woman with the ribbon, her arms are on the back of the next woman, whom she is comforting. This woman has medium dark skin, half her head is shaved, the other is short navy blue dreadlocks. She is curled up and crying, below her is a yellow ribbon next to a purple one. The young man on her left has his left arm around her, and has a sympathetic expression, talking with the woman to try and provide comforting. He has tan skin and short curly brown hair, with short curly brown facial hair.
Narrative text: ”Spoonies are just one part of this collective, their efforts displaying that a condition’s control isn’t proof of weakness, as if can exist even along side massive amounts of inner strength.“]
being tired all the time is such a mystery…. is it anaemia? vitamin d deficiency? chronic fatigue syndrome? depression? insomnia?? is it just the crushing weight of being alive in a capitalist society??? someone cure me
If I were to create a proper fundraiser would anyone donate to help fund my transition? I have a lot of medical issues that can’t be solved but I can become more comfortable with my physical appearance if I can access medical transition. That’s all I can do I guess, become more comfortable
“It’s OK if your disability stops you from doing things. Not everything can be overcome”
This is just life. That’s what disability means - that there are things that are harder or impossible for you. You don’t have to be “overcoming” everything to be having a good life - do it whatever way works for you.
[Visual description: Cartoon picture of a road meandering over hills. The way forward is blocked by a roadblock with a stop sign on it. At the top of the picture is the above quote]
Please support my close friend, he is a trans man with unsupportive parents. He is also an incredible actor and works hard for what he wants more than anything in his life. He currently needs funds to be in a favourite show of his. Having chronic fatigue this is even harder for him and he has had too work so hard for this. Please support him in anyway you can!
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.
So I wrote a thing that I felt like sharing for the first time in quite awhile. I always find it sort of ironic that September is both Suicide Prevention Month and Pain Awareness Month, but that we rarely talk about suicide prevention in the context of chronic pain. And I shared my thoughts on Twitter about Suicide Prevention Month and how a lot of the campaigns for it don’t resonate with me as a chronically ill person. The tweets got a much larger response than I was expecting, so I took some time to write a full-length article elaborating on my initial tweets (which are included in the article). Basically I just expressed that I don’t feel seen or heard by the insistence that “it gets better.” In this article, I share the ways that I cope with my own feelings of depression, and the things that help me continue choosing life even when I know it might not get better. Please feel free to share if you feel this may be helpful to someone else!
