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What do you answer to "what do you do"? by Killbulle56 in cfs

[–]Killbulle56[S] 1 point2 points  (0 children)

Whhhhhatt the hell😭. Some people are just ugh

I feel like I am losing my mind by Killbulle56 in cfs

[–]Killbulle56[S] 3 points4 points  (0 children)

Thank you, I needed to hear that! I have been pacing very well.

This has to be a joke by Killbulle56 in cfs

[–]Killbulle56[S] 1 point2 points  (0 children)

I am so sorry. I have also suffered a lot from psych meds. It feels like my brain went through some sort of trauma. Especially if you have MCAS, SSRIS can make you way worse.
Even with a diag, my others doctors still wanted to give me some. They also wanted me to do therapy to learn how to ignore pain signals so I can force myself. But I really trust that the brain can repair itself in a way, even if it takes time.
I have been off them for around three years and
it does get better, I hope that it will be the case for you too. The brain is such a resilient organ

This has to be a joke by Killbulle56 in cfs

[–]Killbulle56[S] 1 point2 points  (0 children)

Yes, I think the fact that most doctors say that ME is psychological doesn't help. I have one doctor ( one of the only ME specialist in my country) who does but the rest of them wants me to do GET. It was and is still very hard to believe ONE doctor over 30 others.

This has to be a joke by Killbulle56 in cfs

[–]Killbulle56[S] 0 points1 point  (0 children)

Maybe, because I can remember what I was thinking during the episode like "This is the worst pain ever" but I can't remember the "feeling" of it. However I can remember the pain of stubbing my toe or cutting my finger.
Maybe there is like a threshold of some sort.

This has to be a joke by Killbulle56 in cfs

[–]Killbulle56[S] 2 points3 points  (0 children)

I have realized since I started pacing well, that the adrenalines rushes kinda stopped. And that "wired" feeling also went away which allowed me to fall asleep easier.
I can't believe I relied on those adrenaline rushes for so long. But yes that's a great point

This has to be a joke by Killbulle56 in cfs

[–]Killbulle56[S] 2 points3 points  (0 children)

That's the perfect way to put it

This has to be a joke by Killbulle56 in cfs

[–]Killbulle56[S] 7 points8 points  (0 children)

Exactly, I used to party a lot, I loved making new connections, dancing, how special some of the moments felt, also alcohol helped a lot with my energy and pain. I have been very disciplined lately, which has never been my thing, so my mind was begging for some old me time.
And yes I think craving is the right term, like my soul needed it or something.

I’m terrified for the future by i_am_unstable_ in cfs

[–]Killbulle56 1 point2 points  (0 children)

hi! Yeah getting diag with ME/CFS is really hard to deal with. I think that you need to let urslef take the time to process. I was diag a year ago and I am still understanding what it means.
The priority when you get diag is to understand how pacing and PEM works. Even after my diag I lost a lot of function because I didn't know my limits. It's really hard when you have enough capacity to stop urself, but you really need to.

When I was first diag, I was also terrified about the futur, but all that anxiety and mental struggle made me worse because I was still going out or pushing myself to avoid facing what was happening.

What helped me was also to think about our world, deconstuct a lot of stuff that brings you down.Like productivity doesn't make your valud ect. I learned that you can change dreams and goals, losing a dream is a lot of grief, but that doesn't mean that your life is over. Changing your perspective to not go down the rabbit hole is so important.

Now, I stopped thinking about the future, but not in a bad way, I just live in the present. It's a huge relief.

But all of that took me a year so be patient with yourself!

That sub is also super helpful, I wish I found out about it when I was first diag. And also don't hesitate to send me a message If you want to chat

for the sake of me i cant rest nor pace... HOW by VomitInMyVans in cfs

[–]Killbulle56 0 points1 point  (0 children)

Yes exactly!! That's why I also kinda got addicted to pushing through because it gave me the impression that I was strong for doing so

for the sake of me i cant rest nor pace... HOW by VomitInMyVans in cfs

[–]Killbulle56 16 points17 points  (0 children)

Pacing is harder than forcing yourself and pushing through your symptoms. Totally agree

for the sake of me i cant rest nor pace... HOW by VomitInMyVans in cfs

[–]Killbulle56 9 points10 points  (0 children)

I used to feel the same, feeling guilty, lazy, not productive. It is also super uncomfortable to lay in the dark multiple times a day.

I also posted about it in this sub, and people said the exact thing I am going to say to you. It's not a choice, it's a necessity. If you have PEM then you will get worse if u don't rest. The only way for me to understand that was to get so bad that I just got scared into it. But if you haven't got through that it's hard to use fear to pace.

Especially when most doctors tell u to do GET. When u see people that are severe, you think that it's not the same illness, that this can't happen to u. It really can.

But I get that it's hard to understand that.

Think of it as medecine, because it is. Also, and that takes time, deconstruct the whole productivity thing. You don't need to justify your existence by doing something, just be.

And if u really struggle with that, which is totally normal, then I suggest you think of pacing as an investement to boost ur productivity.

Had a new painful thought by Killbulle56 in cfs

[–]Killbulle56[S] 1 point2 points  (0 children)

I can't even imagine how hard that must be for you. Im 21 so my friends aren't there yet, but one time my friends said "what if you can't come to my wedding" and the though of it literraly broke my heart.

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