Pookies Adventures

I know i shouldn’t probably find it so irritating, but it fills me with rage when reading/watching people talk about there CFS, i dont know why, i think i just hate everything about it, and so in turn hate watching people talk about it maybe.?

grr arrg 

my life is at a stand still and has been for a very long time, my illness only shows signs of getting worse, and its 8 years since it all kicked off.

people either are completely ignorant weather having CFS or not, or just completely insensitive about it, again i have found from both people who have it or not can be like this!

by insensitive i don’t just mean not being sympathetic but also just not understanding that everyone has different levels and as much as you pat me on the shoulder and say look on the bright side makes me want to drive a screwdriver though your head (not unlike the opening scene from speed) 

i just can seem to grasp how anyone can think there an expert about CFS when DOCTORS NO NOTHING ABOUT IT! all they do know its speculative at best, and worse the treatments offered are praise by one set of doctors while others say there doing it wrong and that there idea is The right one!

one thing can be said is that every idea that has become a treatment has worked for some and not for others why, because we have cause and effect, if we make someone do something like eat a piece of dark chocolate every night before you go to bed, then logically if the person gets better doing this, cause and effect says that by doing it we have found a cure, but reality especially with CFS if that person was doing nothing no treatments, they probably would have gotten better anyway, thus making the eat chocolate before bed treatment is not right, because the one person it worked for who got better and did said treatment that it was simply there time to get better hence why it doesnt work on everyone, so by telling you, if eating chocolate before you go to bed treatment doesnt work staight away dont worry because it will eventually is basically what the doctors tell is to do with treatments which are not cures but simply guesses which have come from ideas!

i have been on all treatments the doctors and CFS Clinic threw my way, the worse one being Pacing! and none have worked! in almost all cases i have ended up worse off then when i started! and yet im still asked to continue even though theres proof out there by the young m.e Association that pacing makes all patients worse off, because your expectation is that they continue a normal life when there bodies attitude to sleep, pain, nerve endings and all over well being is in fact NOT normal.

it all boils down to the fact that doctors cant simply let a patient walk away without some cause of treatment, many a time i have had doctors say to me that they are unhappy with the little they can offer me other then the Drugs and painkillers they prescribe me, and im left feel like saying Well what do you want me to do about that! they act as if im refusing treatment when the treatment they offer is simply referrals and well theres no much we can do for you letters, because again we know so little about CFS!

But seems as pacing a half cocked idea of how we should survive gets thrust into my face by every GP i see because thats the only thing they know about CFS!

Its like connections between illness and treatment

Cancer = Chemotheraoy

Kidney Problems = Dialysis 

and for some reason CFS in the medical world = Pacing

And Even when you try to tell them that it has either not worked or present them with studies proving its a failed theory that makes people worse off, they still treat you like your just refusing treatment!

FFS sorry to say this rant has just gone into i have everything about it Rant instead of having a singular point, and seems as i could continue with so much ranting that i could easily write a dissertation on it! i will finish with simply stating that as a person who suffers from CFS it would be nice if people knew the ins and outs of it better then I knew someone who had that, and start giving you tips about how to “stay Positive” and ways to get better, to actually treat them as someone who has Actually got A serious Illness because it is! and you would never tell someone with cancer or kidney problems or m.s like someone who has the flu so why treat me like that! 

Thank your for listening to my rant orthough i doubt anyone will read this its more for my sanity to spit things into the abyss that is the internet! 

PookiesAdventuresRants!