Treatment chronic illness and house support

Okay bold move.

I don’t like asking for help and tell a sad “woe is me” sob story.

I’ve postponed this for a while but some dear friends told me you should do a gofundme. We’re happy to help you they said.

If you are, that would be great.

Why am I asking for help?

I’m going to write probably too much below . I can’t really keep it short due to severe cognitive symptoms and exhaustion and it’s still incomplete, but it gives an idea of the struggles.

Okay here we go.

For those of you that don’t know, I’ve been ill for 33 years. Gradually it started in the nineties when I was 20 until being mostly debilitated in my fifties with no way out doctors say. I however did everything and anything I could to get better because doctors don’t know everything and new therapies and treatments are always being found.

After so many disappointments I hardly dare hope anymore but at times I still can pull myself back together but it gets harder and harder. It’s been very hard especially the last year because the levels of debilitation have become so much that I can’t do basic things anymore without severe repercussions of pains and exhaustion and more flare ups.

So I found a new treatment and theory that really seems to explain so much. Finally when I think this could be it, I can’t afford it. It is called pain reprocessing therapy (PRT) and info about neuroplastic pains explains everything, all the illnesses, pains, exhaustion, debilitation from ME/CFS, fibromyalgia, hypermobile Ehlers Danlos, Orthostatic Intolerance, MCS, MCAS, snapping hip syndrome, piriformis syndrome, hidradenitis, TMJ, migraines, hormonal imbalances, depression, panic attacks, IBS, diverticulitis etc etc, and about 40-50 symptoms a lot happening at the same time. Over a course of 33 years I spent all I have on treatments that didn’t work. I feel I’m lucky I could. Doctors haven’t scratched the surface of what the illness is, they tell me I’ll get worse and worse. I do not want to believe this. Even though this was already happening before they told me.

Why do I have a little hope now?

I know more and more people who found a solution and healed with similar illnesses as I have.

At the same time because I can hardly take care of the simplest of things because of the debilitation, my house is deteriorating too fast too. So I’m asking for support in this area too.

Last year things had to be repaired all of a sudden one roof leak after another and it took most of my money (and energy) and now I don’t have enough left to do the new therapy or doing more maintenance that’s needed very much for my house. I’ve for example not been able to do anything to the paint of the my house for years, painting and repairs needs to be done soon because rot is happening in places.

I would be happy with little but only if you can miss it. Truly. Otherwise I’d feel guilty if you can’t miss it.

Everything is appreciated.

A bit more:

I can’t be upright for long due to Orthostatic Intolerance which is one of the hardest ones to deal with because I can faint if I stay up longer than 20 minutes because bloodflow to my head doesn’t happen properly. And it can cause severe migraines and intestinal issues and dizziness and extreme hungers where food doesn’t help because it isn’t really hunger, and heart issues, and even more, that can last days or longer. This causes a fear reaction in the nervous system too, and I fear being upright now, since in 2019 I have been lying down almost all the time, when a cardiologist measured that in my brain with a special test, when being upright the blood level would be down 18% and in healthy people this is only 3%.

I try to focus on what I CAN do in stead of CAN’T and while I am lying on the couch I enjoy the birds outside my window.

I watch a lot of series to distract myself and vicariously live through those stories and images because of being mostly house bound. I live on couch and bed with my iPad above my head in a stand.

I have pains in my whole body. From mild to very severe. It’s always there. Subluxations in shoulders hips are happening a lot (that’s the Ehlers Danlos) I’m constantly trying to find a posture for a second of relief. I am exhausted and feel like I cannot recover from a flu like always but worse. I get panics and huge fears out of nowhere sometimes. Hormonal imbalances probably add to this too. Yay peri menopause…

The simplest things I cannot take care of and I have too many things in my house that need to be sorted trough and maybe half can be thrown out but I do not have the energy for that. So it just sits there and my house gets more full, and I see it and feel more incapable of solving stuff.

If I have a tiny bit of energy I’d rather spend it on creating something with polymer clay. I tried to rearrange my CDs 4 years ago and it’s still not finished so half I can’t find. Good thing I don’t use CDs these days because getting up is a whole ordeal.

TMJ pains are the worst, they can cause the pains of having a severe infection in a tooth or all my teeth and people end up on the ER with this, I’ve had it for years for long periods on end causing migraines in whole head, teeth, neck, ears and eyes jaw so painful, and making me think a molar needs to be pulled but that won’t work so I’d rather keep it. I lost too many molars already. I don’t have infections at the moment I’m glad. This is actually all a very good sign that these are neuroplastic pains. An overreaction of the brain. TMJ is one of the things that can be treated well with PRT. Which is what I want to do.

I’m just going on a bit about the limitations.

I can’t listen to music much, sounds physically hurt me. Hyperaccusis and tinnitus. I have fluid behind the ear drums. I have to put sounds of series very low.

I’m on my own and need to hire help to do my housekeeping. I’m housebound for too long now and I’m lucky to have assistance from my government to hire people to do these things. Even though having strangers in the house is very challenging too.

My parents come as often as they can even though they don’t live close by but can’t help me with day to day things much, they aren’t the youngest and have their own issues. My brother and his family have their own things to deal with too. We see each other a few times a year. That takes a long time for me to recover from, my nervous system goes haywire usually from too much noise or just trying to focus on what people are saying, so apart from this I don’t usually have energy to see friends.

Also the hired help and all the complicated issues to even find people is already too much to handle. Not much room for anything else.

So I do feel more lonely now that my long term sweetest help had to stop working for me due to her own health issues.

My social life is non existent except for FB where I live virtually sometimes.

Feeling good and a quality of life I want most in the world and I want to be able to at least sit up and hopefully to later take walks again in stead of having to lie down almost all day. And cycling. I’m Dutch so I miss that! And I can’t even think about owning a car again yet.

Being able to work with polymer clay again or photography would be so great too. It’s been so sad to not be able to enjoy that and have severe painful reactions afterwards even if I do it for a very short time. Post Exertional Malaise is a very hard one.

And now there is this new treatment that explains so much if not all about my issues. There is lots of info on it (I’ll post some links in the comments).

So I already mentioned it I found a thing called somatic tracking or pain reprocessing therapy (PRT). It has other names too. On YouTube there are a lot of free somatic tracking exercises. I don’t know if it will work for me because I’ve done so many things that seemed great but I still got worse. But this one seems to explain why I still got worse and it can be reversed. I’d love to do sessions with someone who does this PRT as I need good guidance or I’ll collapse again. I found someone already. So even if I don’t know if it will work I feel I have to persevere.

If I don’t get better I cannot stay in my house either in about 10 years which is a whole other fear.

A bit of info on PRT:

A most common reaction to pain or other symptoms is to try and push it away and repress and suppress it.

It’s what we’re taught to do.

It makes the brain think that there is danger and the mind perceives it as such too. Maybe it starts with the thoughts even. And it truly feels like constant danger when pain does not subside and you can become trapped in a fear loop. My life became all about the fear as everything and anything I do causes more pain and suffering. Even the simplest things.

You can retrain the brain though to perceive the sensations in your body as benign and safe. Or at least a lot of people can. If I can remains to be seen, as I’ve had it for so long, but I see a lot of people with long term stuff that could do it, it could take a bit longer though, and at the very least these exercises that I know of now are like a meditation where you learn to allow and relax and feel safe. And it can sometimes help me in the moment to learn to be at peace with it in stead of trying to push it away. Some days this works better than others, mostly I do believe that most of the pains are from this overreacting of the brain.

Btw the pains are real. It is not imagined. It’s just the brain overreacting to sensations that are supposed to be normal and are interpreted as pain and danger. Sounds can even do this for me, smells too or talking with people or writing an email or this whole story (so it took me many weeks to finish this). It’s different for everyone what can trigger the nervous system.

I might not fully explain it well enough as I’m just learning but I will post links and videos here if possible, where experts explain more.

Gofundme wants a target number. I don’t know right now how many sessions I would need so I hear people say at least a year with a session a week maybe? One session is around €100 depending on which person I choose. Some are €150 but maybe packages can be bought too.

And with a little breather to fix my house it could be a target of €8000.

And that is conservative.

But honestly I’d be happy with every little gift and do at least a few sessions so I have some more hope.

Many thanks for reading this, if you have questions because I’m unclear, please ask. If I have the energy I’ll reply when I can.

Thanks for reading,

much love from Mirjam