fighting daily to come to terms with CFS
I had worked hard to get where i am (sorry was!) in life, fantastic family, great job which i am so good at and yet i can see it all slipping away before my very eyes.
Ok lets go back to the beginning, for more than two years i have been back and forth to my GP asking for help. Trying to explain to her how bad i feel while she doesn't even give me the courtesy of looking up from her desk !When my second child was born 9 yrs ago i was diagnosed with an under active thyroid,with medication i was able to get on with my life and eventually find the job which i thrived in.
However i never felt physially well i didn't have any energy would be in constant pain and found i was living in a "glass cage". at work i was the constant joker the one with a smile on her face. What my colleagues didn't see was the me in floods of tears in the toilet or the me taking so many painkillers just so i could be at work. I became a fabulous actress but alas i could only keep the mask on for so long!!
At home was a different matter i became distant,moody unbearable to be around to the point of almost costing me my marriage.Then one day i couldn't function,couldn't get out of bed and so absences from work started to happen. I demanded to see another GP who sent me to see a Rheumatologist who in turn sent me for an MRI scan at last i thought someone is listening to me. He asked me if i had ever heard of CFS and to go home and look it up. What i read frightened and confused me.I didn't know if i had it although i had all the symptoms. A week later i took all the info back to the GP, i sat there while he shrugged his shoulders and didn't even look at the info i had brought with me.
He said he would refer me to a CFS Clinic and i came home again none the wiser!I then recieved a letter from Kingston Patient Assessment Clinic telling me that due to the nature of the referal a panel would have to discuss if they would fund the appointment because as it turns out it is out of the borough !! What do they mean "due to the nature of the referal" ? it feels as though my symptoms are not severe enough for them to warrant spending money on me, but let me tell you my symptoms are very real very painful and just because they can't be seen doesn't mean they don't exist !!
It still worries me how people trivialise CFS one comment i recieved from a colleague was "well we all get tired and forgetful but you just have to rise above it and carry on" if only she knew how much i want to just carry on and how much i struggle everyday So what can i say i am still waiting for my appointment to come through to attend the CFS clinic but feel this is something i will have to deal with and find out about alone.
I am still off work and now i have been to refered to Occupational Health, again i have no idea what to expect or what the outcome will be. I have resigned myself to the fact that GPs do not want to know or care about CFS and try their hardest to give you anti-depressents which usually make the symptoms worse!!
I can't expect my employers to be patient forever and i fear the worse of not being able to return to my job you see i am a Teaching Assistant in an ASD unit within school it is a wonderful challenging very stressful job. I can't even get out of bed most days so how the hell am i going to be able to care for others ?!
Alas apologies for being so negative i hope within time i can begin to understand this very lonely and frightening illness and stop feeling so guilty for having symptoms no one else can see......
Added: 5th April 2011