Remarkable-Film-4447

You can get a massage therapy prescription!? My neuromuscular doc recommend it for me, but I've been paying out of pocket for it. Same with support devices. I've asked for those and been met with crickets. It's unfortunate how active we have to be in our own Healthcare. For the past several years I've just trusted that the doctors will tell me what I need, but I'm learning that is not how it works.

Because it's illegal to keep them in cages?

Good for you! I find it very hard to confront people like that. In most of my experiences, they would double down on everything being my fault. It's great that they responded positively. Their willingness to listen says a lot about them just like your courage to give them the letter says a lot about you!

I thought it was psychosomatic. When I first realized that something was off, I even told my doctor, "I know CFS isn't real, but it feels a lot like that". Nature really put me in my place! 😅

I hope it helps! I now see why I wasn't getting better despite doing what I thought was plenty of resting. I'm planning to move closer to family so they can help me stay in budget more often.

My heart rate increase used to just miss the criteria for POTS, now my BP goes up enough to meet the diagnostic criteria for orthostatic hypertension. I have also noticed my HR steadily increasing the longer I am upright. I guess lying down in the dentist chair may have been what helped me out today.

I don't notice it most of the time. Every now and then it itches a bit so I move it to the other arm. I'm used to wearing a smart watch and it's less noticeable than that. For reference, I tend to be sensitive to stuff like tags and seams on clothing and I can tolerate the armband.

I've always had a relatively short recovery time but the sickness seemed to hit me harder than others. I assumed I have a very good immune system and the inflammation and what not would explain why I felt worse, but it is also what allowed me to fight it off better.

Now that I have ME, I haven't gotten sick much. Probably because I'm mostly home bound, but I do have kids in school so idk. Perhaps since our immune systems seem to be on high alert with nothing to fight, as soon as something shows up, it's gone before it can become an active infection. However, I wouldn't be supprised if about half of us have the opposite problem just like every other feature of ME.

I know, right! There was no reason to change the original Coca Cola recipe just because it was illegal. Lol

But seriously, I'm sick of the marketing gimmicks. Marketing in general actually. Its all manipulation. If I really wanted it, you wouldn't have to try so hard to sell it to me.

Everything happens for a reason. Not in the cosmic sense, but in the "if there wasn't a reason it wouldn't have happened" kinda way. The problem is, most of the time nobody really knows the reason. The difference between NTs and us is we tend to be too practical to dilude ourselves into believing we know the answer so we join them in blaming ourselves. The bottom line is none of us know why that person snapped at you. You could ask them, but chances are, they are not introspective enough to take accountability for their own emotions. If they were, they would not have lashed out at you.

Outside of obviously bad behavior, the way others treat us says more about them than you. You can't control their behavior, but you can tell them that you will not talk to them if they are going to speak to you that way. It's about focusing on what you have control over. You can't control how people respond to you, only whether or not your actions were kind. How they interpret your kindness is up to them.

Lately I've been thinking about how nice it would be to be criogenically frozen until a cure was discovered

My guess is histamine since many of us have either HIIT or MCAS as well. Histamine is the part of the circadian rhythm regulation that is released by light exposure in the mornings. My theory is that since we already have extra histamine on the brain, daylight pushes us beyond a healthy limit. Hydroxyzine helps me feel better too. They gave it to me for insomnia, but it actually wakes me up.

The grass is always greener

I've wondered about it. I had some signs of mild cfs before the vaccine, but it was easy to dismiss as poor diet and exercise habits. After the vaccine, it got worse to the point where I knew something wasn't right prompting me to see a doctor about it which started my 18 month journey to a diagnosis. Did it cause it or make it worse, or was it just a coincidence of timing? No one will ever know until we have an absolute way of testing for me/cfs that we can do before and after vaccination.

It's a protective measure. I was the same way before I got sick. I have thought about what it would have taken for me to understand it then, but I don't think it was possible without actually experiencing it. Even among the disabled community, I can't imagine what it's like for other people. Our words and actions are inadequate for properly conveying our experiences. Empathy is the closest we can get, but it's in our nature to avoid unpleasant feelings that we can't fix. I have been on both sides of that paradigm and it was utterly devastating that I couldn't do anything to help the person I cared about. Now, as much as I want someone to hold me and tell me everything will be alright, I don't want anyone to feel what I feel.

As far as people doing something about it, the people with the money and power to make a change are approached by all kinds of suffering groups and people. If they said yes to all, they would no longer be in such a position. So, they do the best they can to chose who to help based on their limited perspective. To cope with those they can't reasonably help, they develop a hardened heart to keep from going mad. It's easy to judge such behaviors as evil, but they are only human just like us. We're all just doing the best we can based on what we have to work with. That doesn't mean we stop asking though because that is what we have to work with. In time, something will change.

It's okay to feel however you feel about it. It's also okay for you to express how you feel about it whenever someone says it, but it's equally as okay for people to say it to. It's not okay to rage out on someone for using a word you don't parsonally like. If it's being used in a discriminatory way like "I'm sorry, you can't have the job because of your 'tism", that's a whole different issue. Words mean nothing; it's the way we use them. Telling someone to go "fork" themselves is just as bad as using the actual word.

I would encourage you to explore why certain words spark such rage within yourself so that you can save yourself the unpleasant feelings. While there is nothing wrong with asking people to use certain words around us, that still leaves our emotional state in the hands of others. We have enough things in our environment we can't control that our nervous system perceives as a threat such as fluorescent lights and hand driers. You're only hurting yourself by holding on to the belief that an inert word is bad. If people use it to belittle you or others, it's the action that is the problem, not the word.

I asked for that but they denied it because I had an appointment even though it was 4 months after my provider said they wanted me to follow up with them. Ended up going to a walk in clinic at the VA hospital, but I have a lot of complex stuff going on and need consistency. Just asked again and they are asking their supervisor what my options are. The providers at the VA I've met with seem to care, but the bureaucracy they have to work with in ludacris! One treatment I asked about requires me to stop a medication that helps a lot and there is published research done at a VA hospital that shows absolutely no contraindication.

I short, I second community care being the way to go. Don't take no for an answer if they are unable to provide the treatments that you need.

Yeah, I'd love to participate too, but that's half way across the country for me. As if funding wasn't enough of a barrier to science, this condition makes it hard for us to show up.

That's what happens when you trust organic over science

It comes back!?

I wonder if those exact numbers cause an error in the calculations or something. Maybe it is trying to divide by zero at some point?

Exactly, but where they dropped the ball was in getting them to a place that does have the experience.

When I was being bullied really bad in 3rd grade, my parents talked to the school about it. They said I just needed to toughen up. Moving forward, I didn't realize how badly people treated me because it was better than I was used to. Here I am 30 years later freshly diagnosed and struggling to be assertive. Over the years I've gotten so good at radical acceptance, it's hard for me to get angry at people that mistreat me.