Chronic Fatigue Syndrome Support Group
Chronic Fatigue Syndrome (ME/CFS) describes a sense of exhaustion and post-exertion malaise, even when you have gotten enough rest and sleep. The disease is characterized by six months of incapacitating fatigue experienced as profound exhaustion and extremely poor stamina, and problems with concentration and short-term memory. The cause is unknown, but it is a...
Hi all
I realised today that I have been doubting my illness when I shouldn't have been.
At some point along the CFS bumpy road, I started thinking this was more mental then anything and it was actually in my control, so therefore it was somehow MY fault! I guess I got to this thinking by those little things people/doctors/websites say.
Like everyone else with this illness I get a stressed out feeling in my body regardless of what I'm doing, I started thinking this was my fault. Anyway now I realise that it is completely the CFS monster raring its ugly head.
I get this stress feeling randomly and without any reason, although there really is a reason.................the reason is is that sometimes CFS makes us intolerant to any sort of stress, and by stress I mean ANYTHING!
I never thought this way in the first 6 months but then I started doubting my own body/mind! Well not any bloody more! No way is ANYONE going to convince me it's in my head and I have control!!
xoxo
I realised today that I have been doubting my illness when I shouldn't have been.
At some point along the CFS bumpy road, I started thinking this was more mental then anything and it was actually in my control, so therefore it was somehow MY fault! I guess I got to this thinking by those little things people/doctors/websites say.
Like everyone else with this illness I get a stressed out feeling in my body regardless of what I'm doing, I started thinking this was my fault. Anyway now I realise that it is completely the CFS monster raring its ugly head.
I get this stress feeling randomly and without any reason, although there really is a reason.................the reason is is that sometimes CFS makes us intolerant to any sort of stress, and by stress I mean ANYTHING!
I never thought this way in the first 6 months but then I started doubting my own body/mind! Well not any bloody more! No way is ANYONE going to convince me it's in my head and I have control!!
xoxo
This thing is for REAL.
It's hard... this acceptance thing. Some days you feel so good that you wonder "what did I do yesterday?" and try it again, as if you can magically recreate whatever you think might have been the "right" thing to do to feel so good... and then the next day, or even that afternoon, you hit that ever present but sometimes invisible wall.
Someone here, I'm not sure it was this group but it was this sie (and I apologize for not giving credit!) suggested a book that after 21 yrs has actually been the most help to me of anything else. It is "How to be sick" by Toni Bernhard and Sylvia Boorstein. It's avail on Amazon, and I'm sure other places (I'm a kindle e-reader woman)...
Part of what makes is so dear to me is that I've learned to truly enjoy the good moments, without wondering when they will end; without mourning quite so much when they do. To just live in each moment. To care for myself and be kind to myself, period. It's amazing how a few simple truths and ways of thinking can utterly change my days.
As for that stressed out feeling... that is those darned adrenals of ours on overload...... I hope you find some peace and congrats on finding a truth within the morass that is this illness.
If you have been diagnosed with CFS, then you have it. It doesn't matter what your friends/family//coworkers.....say!! We are all confronted with doubters and naysayers, and just plain rude people, who want to call us fakers, or make us think that "a little more exercise" or "getting out more" or "starting antidepressants" is going to make all the difference.
Not so!
It's hard to feel like you're battling the world because you have not black and white blood work to prove that you have the energy and stamina of a gnat! It's a very lonely life we lead with CFS. But like I have learned, and so many others with this illness......just believe in yourself! You're not nutz! You are SICK!
If anybody tries to make you feel bad, they're just blaming the victim and should be ashamed of themselves. You just take care....of YOU! Live your best life. Eat well, sleep well, pace, keep happy things in your life, remove toxic people.
COME HERE TO DS!
We're all here, and we're on your side!!
Good for you for realizing that and moving on. Take care!
Genie
Don't forget it!