Im feeling extremely touchy

Im extremely touchy right now as im so so sick of people trivalising what im suffering from.

In the past week Ive had 3 different ones trivalise it including my support worker who isnt a medical person and has insulted me by saying I do not try hard enough and I could even work full time if I tried. (that hurts when I so wish I could and coming from my so called support worker, well it hurts all the more). (Ive emailed my CFS specialist over this this morning)

Ive also saw a couple of severe CFSers get paid out online by two others (not at this site)… they left a message saying to just to get herself out of bed and make herself do things. This was one with CFS so bad that she had a full time carer and hadnt been able to leave her room and rarely left her bed, she struggles to even eat well so has to have her food specially prepared. Im feeling so angry at someone telling her to just get up and go outside, when she’s like that. I felt very very offended for the other severie, who would probably be completely unable to defend herself. (The one who told her that was one who supposively had CFS themselves! It hurts me all the more when ones in the CFS community…trivialise others pain and CFS trouble).

Im also so frustrated that some think CFS is curable by treating one of its symptoms. Till they know really what causes it, true CFS isnt curable by that.

I just feel upset. I feel sad, frustrated and angry… all rolled into one.

I hope I get over my anger and how I feel soon. Right now I just want to cry.

DEB… im actually a great believer of postive thinking can help things. Ive used that to pull myself out of depressive states in the past. Phobias and things like negative thought patterns often can be dealt with by working on thinking positively or differently too. I dont get panic attacks anymore as I learnt to stop them in their tracks by using my thoughts (eg visualisation along with breathing).

" They seem to think that we can reprogram our way of thinking."

agree… thou it wont work with all mental illnesses and it wont cure CFS either… thou can help emotionally some.

Right now I are not depressed thou, just shit scared (and frustrated) about stuff and the CFS. Scared about how my finances currently are, (I cant even afford my medications or all the food I want and are driving an unregistered car etc etc cause of it), and the fact I may not be getting any money soon.

So I really think that my current fears are a valid thought as the gov. dept who gives me money has already made that threat to me several times. They ARE telling me my money will be cut off if I dont get accepted onto disability. Changing my frame of thinking, isnt currently going to put food on my table! And its cause people trivialise this illness, many dont realise just how bad it is for some so hence my jumping up and down at the moment in frustration about it all. (I will let go of it all soon, I dont hang onto my emotions).

“That she can over come these disabilities if she changed her thinking into a more positive “I CAN DO IT” frame.”

But I cant overcome this with thinking “I can do it”. Correctly diagnosed CFS isnt like that, excertion worsens the condition. When I think like that only backfires for me with this illness… :frowning: I wish it was just that easy as me going and doing something… but the after affects when I do that are extremely severe in my case. I go into body shakes and tics and actual physical collapses with weakness and all my neurological system then goes like shorting out as well, I go into seizure like eposides…(I loose my body feelings and my body senses). So No I just cant say to myself “just do it” and then end up completely incapitated afterwards cause I did it.

I did that convincing myself in the past and that is how I originally ended up bedridden most of 9 mths. I was lucky not to die as I was too weak to even eat at times and almost paralysed. (I struggled to just move a finger at times and couldnt chew properly so would end up almost choking). Its over estimating my capabilities, with this illness, which has caused me severe relapses and is highly “dangerous” for me to do. So its completely different than a mental problem where they do something and dont go suffering severe consequencees of it.
Im not saying its dangerous for me due to negative thinking. Im saying that as Ive seen the impact me pushing myself has had on my body in the past… and I know others who have been paralysed and are now completely bedridden out of that.

Do you realise that CFS can kill people?? and has done so for quite a few who “just did it” and got told that?? (im refering to ones who ended up dying with this cause another made them over excert themselves and hence caused serious relapses and death).

“Even on my last psych. visit my Dr. wanted me to say a praise each morning in the mirror about who much I love and cherris myself.”

nods… that is a great exercise. I used to teach and teach others self love exercises and that is one of the exercises I used to get my students to do. One should include a smile in the mirror during that praise… and smile at your heart (visualise and feel it) and let your heart respond back too.

" I barely got depressed this time. But I so fear the next one because it took all my strength to fight this one. "

nods yeah… I know that one only too well. One can block the pain some with thinking and positive emotions but doing that takes a heap of effort and is hard when the pain is real… so just ends up draining one. It isnt something one can keep up. When one then ends up crashing… one only crashes even harder.

"She was very upset for a few weeks and last week was the first time she ever got up to go to a job in 10 years. Its only temp. but this is a BIG accomplishment for her. "

That must of been such a great occassion for you both :slight_smile:

thank you Deb (((hugs))), your post made me feel better a little. I really hope so much it all sorts out for you. I too have completely maxed out my credit card to survive :frowning: … so now I just have that debt on top of everything else.

I just finished doing one hrs work, which I had to almost force myself to do, (I usually like working when I can do it without problems), as today I are not at my best, (well as best as I can be with my CFS). I had 3 different nightmares last night (people dying, people trying to kill me, my bady neice getting burnt in a fire etc) and 2 nightmares the night before, so right now I have my sleep affected by that. (I think cause Im stressing right now, its bringing in nightmares).
The one hr of work was so hard today and now my legs are all shaky and Im feeling a little dizzy. I wont be able to be on my feet for the rest of the day. And they (government dept). are wanting me to do even more work :frowning: (Im not going to be able to do it).

We will survive, thou I are not sure how.