Health insurance companies shouldn’t be able to pick and choose which treatments they’ll cover. I just got diagnosed with a condition (Small Fiber Polyneuropathy) that can be effectively treated or even cured with IVIG. But because IVIG is expensive and my doctor has a hard time getting insurance companies to cover it, he’s putting me on other medications that are much less effective. Health insurance companies shouldn’t be allowed to prevent doctors from properly treating their patients all in the name of profit.
One of the worst things about chronic illness is how it changes your relationships.
Because you’re so tired, it’s hard to regulate your emotions. You might snap at your loved ones, or lean on them for emotional support too heavily.
You might worry about asking your loved ones for too much help. Even if you have very supportive family and friends, internalized ableism can make you feel that you’re a burden on them.
Worst of all, chronic illness can cause the people who don’t understand it to say very hurtful things to you or even walk out of your life entirely.
It’s extremely hard to cope with the changes that chronic illness brings to your body while coping with the changes it brings to your relationships and your life.
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
“Pain that persists is terrifying because it sets off the amygdala, before the parts of the brain that modify our emotional responses can be turned on.
The result is that we re experience the trauma that caused the pain and this trauma is continuously reinforced by it.
The terror demoralises us, and as pain processing areas expand in our brain, we lose our full ability to problem solve, regulate emotions,resolve conflicts, relate to others, distinguish other sensations from pain, effectively plan and even remember our past experiences to control pain.
Every time a person worsens, it feels like it is here to stay, and we must avoid it at all costs.
The amygdala is not a place of moderation.
It is a place of extreme emotions, fight/flight and post traumatic stress disorder. ”
Norman Doidge, the brains way of healing
IMAGINE how much better you would’ve felt if your doctor had explained pain and how you were feeling like this instead of telling you not to think about it. I wish I knew this when I was begging for help, traumatised by my pain
Today, I’m feeling not so great. Instead of focusing on just me I’m going to extend kindness to others and see what happens I’m asking myself How I can be of service? How can i better someone else’s life? How can I turn my own suffering into grace?
Who are you? Who cares? Do we really have to define ourselves? Sell ourselves? Everything and nothing, I just am. I have likes, dislikes and interests but have learnt that this elusive identity isn’t even important for me anymore. I just am who I am. And I’m always changing. I recognise my triggers and patterns and I heal. I just keep following my energy and overcoming blocks and celebrating triumphs and loving myself unconditionally. It’s magic. I’m magic, You’re magic And magic can’t be defined
When you have a flare, know that you will be extra sensitive the following days and don’t be so hard on yourself. Wear the eye mask Put in the earplugs Avoid the crowds
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.”
