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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Anxiety

Shoshana

Northern USA
Messages
6,035
Location
Northern USA
I have those thoughts too, that I don't know how to continue to do this, and that I might get much worse than I already am,
just so you know that we do understand those thoughts and those feelings, and those terrible, gripping fears.

But at the same time, maybe you WILL improve slowly,
Or maybe you will stay the same and learn how to manage it better, instead of worsening,

or maybe you will improve a lot, at some point.

Most of us do not turn into the worst case scenarios.

They are scary to think of, but they are not happening rt now, and they might never happen.

We need to try to fosus on today and on trying to cope with how we are today, and try to hold onto hope, that we might get better,
because,
we might!

@sunshine44 :hug::hug::hug:
 

Shoshana

Northern USA
Messages
6,035
Location
Northern USA
I too, spent a lot of money on my attempts at treatments, that didn't make me well,
but I am at least glad I treid them, it is the ony way I would know they wouldn't work, in my case.

It is well spent money, in my opinion, it is not wassted money,
for you to know that if they would have worked for you, you tried them.

Now I need to cope the best I can, with the limited resources, and with my present conditions.

I try to remind myself (it isn't easy at all to remind myself!)
that not all of my moments will be as terrible and scary, as some of them are.
 

jesse's mom

Senior Member
Messages
6,795
Location
Alabama USA
I am a bed mama.
You are a bed mama right now,
NOT a bad mama.

Kids will adjust better than you will ever expect, my daughter does not remember me not being sick.
She is 15 now and she is the one person I can always count on to understand.

My kids tell me now that I am the strongest person they know, and that they are closer to me than their friends are to their moms!

Look don't get me going on husband's being really slow at learning to adapt to this illness!
Do not listen to him! Especially when he is feeling sorry for himself...
I get that a lot at my house!
 
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sunshine44

Que sera sera
Messages
1,137
Thank you so much ladies. SO well said.

Especially as hes yelling/cussing and slamming dishes tonight. I took care of everything for YEARS, he did no dishes, meals or laundry....now he does everything.

I have asked him to be more gentle in front of me and kids but he doesn't listen and gets mad at me for writing and talking to him about it.

So its just me and the kiddos I have to keep sending us love...in this terrible predicament that I never saw coming.

So many good points here I need to keep thinking about.

Thank-you.

With infinite love and gratitude..
 

Richard7

Senior Member
Messages
772
Location
Australia
Did anyone sign up for this?


The suggestions I made were really about the anxiety produced by ME/CFS and PoTS. I am not sure what one can do about the anxiety created by people.

I know that Myhill talks about the emotional hole in the energy bucket. And that mirrors my experience, I have so little tolerance for this sort of thing that I cannot even watch the sort of film or listen to the sort of story that tries to push your emotions all over the place.

In everyday life I put all of the emotionally difficult stuff off until I have a good enough day to manage that extra load, but you cannot do that when someone else controls when you experience the anxiety.

good luck @sunshine44
 
Messages
20
Location
Staffordshire, UK
I have found spiritual studies (and a specific teacher) and meditation a great aid for dealing with illness and all the stress and anxiety it brings and is especially great for taking the focus off the never-ending physical stuff that seems to occur. For me, it helps to separate out the real me from the symptoms of the illness which I sometimes identify with. Focused breathing on the nostrils can be great for creating calm in the mind as well as body and mantras can be helpful in most situations. Anyone else find this helps? :)