Pretence & ME by L:inda Crowhurst

[835283]

Linda I had a roommate with ME in 2009 and he was forced to take heavy anti-psychotic drugs against his will as he was sectioned. The psychiatrists were horrendous as to what they were doing to him they were making him worse not better. It is Mark here and I have mild M.E and have had it for 1 year 1 month now as I was given a medication that I also had to take which made me throw up for 3 months and destroyed my immune system etc thus giving me M.E and I can't do anything about it now they won!

[pilomaya2012]

thanks for the sharing i really need to hear this.i think its important to learn to love life, even with this dreful illness, to find peace in it, and find ways to make each day better, even on the bad days.i am finding this true for myself anyway!

[ehhxfini]

how can i feel better within myself? i wish it was terminal. i would have died years ago. what peace linda?

[pilomaya2012]

dont worry sweetheart you are not alone with this. i feel so bad at moment!today is betetr for me i can mive round the house! i hope for a cure. but now there isnt one it seems.i try to live each day at a time, find peace in new ways, breathe deep, open my hands, when i can listen to soothing meditational music.i know it doent make it all ok but it can help. i am trying to make the best of each day.i had it ten years now.i cant fight it no more.

[DiamonDie]

There is treatment for CFS/ME. I wrote a book about them and it lists over 170 Rx ones (the English edition will include over 200), and that's excluding non-pharmaceuticals. Of course many can't tolerate meds or even supplements. And most don't have access to these treatments. :-/ There is research, but not nearly enough of it. FWIW, I don't think enterovirus is _always_ the cause.

Linda, you're a great and inspirational speaker.

[Carrigon]

I've never heard of anyone who truly has this disease making a full recovery. I've heard of alot of people who have latched on to this disease because it's easy for them to do so and it gives them attention, and then they claim they were miraculously healed. But they didn't really have it to begin with. A lot of truth in what you said. There are alot of fakers out there, and there are alot of people looking to make money off our illness.

Keep fighting.

[pilomaya2012]

i think youre right about the fakers.i think maybe some people with bad inertia say they have it. sometimes i think i dont have it and that its in my head and linked to childhood trauma, but then i get ill again ache like bad flu for days on end, lay in bed and cant move feel so ill .then i remember i have it bad. its come back bad again after a year of feeling good.i am learning to accept it and love it and take my day at a time. to accept that i might be like this all my life.

[deadgirldreaming]

Linda - you speak the truth!

It is a hard truth to hear because although I know it I have to live with a belief that I will recover - the alternative just floors me. However, the constant hope coupled with the fact that I continue to be ill is unsustainable and soul destroying.

xxx

[gregcrowhurst]

thank you for this - I am sorry it sounds so harsh. I think if we speak the truth then there is real hope that things can change. And this is the hope that we need.

Bless you

Linda

[deadgirldreaming]

I know - I just try to sustain a level of denial for myself - it is a way of coping... (not a very good one I admit).

I think if the benefits and medical stuff were less trying and anxiety creating it would be much easier to deal with.

OK - crying now.

Love

xxx

[Alexsk1]

So true Linda, so true.

[Englander72]

A hard thing to hear perhaps, but only because there is truth in what you say. Why does ME get treated like Gulf War syndrome? This is something that should be brought to national attention. You should email your videos to Panorama, Dispatches, Channel 4 news etc as it's something that should be brought to national attention. I've already written to them.

[Bluebottle83]

It's not just M.E. & GWS, but also Lyme disease, Organo-phosphate poisoning, fibromyalgia and even the Camelford water poisoning outbreak. The same psychiatrists are being paid to deny all these physical illnesses.

[ivortick]

How right you are Linda. People with M.E. suffer a double whammy; the illness itself is difficult enough to cope with, but the pressure being misunderstood from those who know no better just adds to the stress.