u/Advanced-Fig4683

We have a land. Small farm. I buried my cat a month ago after a night in the vet hospital that ended up in euthanasia. I made the hole directly after coming back, exhausted to the bone at 4am.

Today it is raining. I am crying because he is outside, getting wet. He would have run inside. He disliked the rain. He would have lie down with me, listening to the rain from inside.

I know he is dead. I know it doesn’t make sense. But I am sobbing anyway.

I realised that my paramedic brother doesn’t really believe my diagnosis because he doesn’t see me as sick.

I have been successful for years. Putting together international projects, receiving prices. I did that with what I suspect now mild ME and cycles of adrenaline. He did not see the crashing as I did not see them either. People do rest after large projects. I did not realised that people would call rest doing washing and having a two hours walk while I would sleep with my clothes on.

I became super efficient, organised. I would think a lot before doing anything, and accomplished it efficiently.

So he, and everyone did not see my ME. When in 2017 I tried to find the problem as I was at maximum 4 hours of work a day unless adrenaline, I kept having great projects. I even had my best income of my life in 2019 and 2022. Enough to finally look for a house of my own.

I crashed in 2023. Was it a small concussion? The after shock of Covid? Burnout, I supposed.

Since I suppose I am severe, but all energy I have goes to take care of my family. I am responsible for the food. Food inventory. Caning. Cooking. All of it for my family farm. I helped my brother with his new house every month or so.

When we have visitors I push, cook, serve a table of 8, 12, 16 peoples and disappear after serving desert. It is easier to cook than socialise, particularly with the brain fog. My phone full of reminders that I put there before the brain fog comes. Prep in the week before.

I got diagnosed last month.

And my family doesn’t accept it. And I think some of it is because I masked it so well.

So I have a watch with oxygen readings and when I lie down completely it is lower. Gemini says it could be both Asthma or ME, but not sure where it found something about ME. Lying down helps people with ME… Is it something known or that you observed too?

I am bit of a geek and understanding my body with a watch seamed like a good idea. I learned a few things since I have it. I put Tachchymon and Blood Oxygen Monitor. Did a watch helped you? How did you use it?

I am in Québec, Canada

I think I have what they say moderate. I can not work. I make the food for my family. I go out like twice a month. I suspect it is moderate for three years and was mild for 18.

I got my diagnosis by a nurse (IPS - a nurse with advanced education) He spoke too quickly for brain fog me, but other than that was respectful and professional. The diagnosis makes sense. He was helpful.

But, my family wasn’t very respectful of the diagnosis and really push for me to go to the doctor, again, you know, to get better. Have a diagnosis by a real doctor.

It was very hard to get an appointment. My area has a lack of doctors because so many people moved here during covid.

So I arrived at the clinic and got send in a new part of the building. They have a fan with a low hum that would give nausea to many healthy people, loud music and no chair to wait. I stood there 20 minutes.

I was over prepared with 4 pages of timelines and questions about possible things that could help me, mainly because the brain fog is often bad at that time of day. I am not saying every idea I had was good, but I read and found things to try. Compression clothes? Drink more water and take more salt? Some drugs against punctual anxiety to give me alternative to alcool? Better cream for hémorroïdes. Iron IV because I am borderline iron deficient all the time and the iron pills give me constipation and constipation give me hémorroïdes for weeks at the time. The resident had to look up ME, but still advised me against compression socks, salt, and told me to do sport when I am anxious.

The resident resumed my 4 pages in 2 minutes in another office and the real doctor arrived. It most get better no?

He told me the ME and CFS were two different illnesses and to hire a sport coach to make a plan I most follow every day and increase every week a little. And to forget about iron IV because no one will give me that with my iron levels.

I left with a laxative prescription to keep taking iron.

The only good thing is that I had the head clear enough to ask for a specialist. I had to ask multiple times because he told me he did not think the rheumatologist would take me. I doubt he actually filled the form. I have little joint pain. Not sure a rheumatologist is the right specialist but they are the closest thing to one I suspect.

When I left, I politely told the secretary that they had no chair there. She got all defensive and told me she couldn’t know how long I had to wait.

I have the idea to write to the doctor about it. At least for the resident. She is learning. I don’t know if it is worth my energy.